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Non GAA Discussion => General discussion => Topic started by: Ball Hopper on December 19, 2019, 03:25:19 AM

Title: Medical Status of Boardmembers
Post by: Ball Hopper on December 19, 2019, 03:25:19 AM
This i not for the Depression thread...fair play to all contributing and giving good tips/advice.

Not for the alcohol thread either, although it might have played a minor part in my current status.  This Christmas will be my first alcohol-free one since 1977, as best I can figure.

Current status is I had my first chemotherapy session today (18 December) for colo-rectal cancer - two separate unrelated growths at either end of the colon.  Chemo session every two weeks starting again in early January (nothing scheduled Christmas or New Year's week as they want to focus on patients on their final sessions...also complicated by the fact that one of my drugs is administered via pump that I wear home over three days (Mon-Weds, Tues-Thurs or Wed-Fri ) which along with other patients in the same boat causes scheduling nightmares.  Taking the Wednesday out leaves only Tues-Thurs for everyone)

Eight chemo treatments in total by the end of March (so I'll miss the league), April off to recover somewhat (for club season), then 5 weeks of a lighter chemo/radiation combo (25 days in all) on a daily basis (Mon-Fri)...followed by a month or two to try to get over that (coincides with Super 8's) before surgery to whip whatever is left out of me...a week stay in hospital so proper planning will see me home every weekend.  All treatment over by the All-Ireland Final. 

Medical team is confident we can be successful in 2020...and constant screening thereafter to catch any recurrence as early as possible.  I'll have an advantage in that I work from home and won't be exposed to infection on trains, buses, or a workplace.  The adjustments to prevent side effects (things like very detailed oral hygiene to prevent mouth sores) are in full swing for the last few days and I'm confident of an easier (not necessarily easy) passage back to full health.

I'm ready to do whatever it takes to win this one and have a great support network in family as well as the medical arenas.

Lads, Early screening is vital...colonoscopy by age 50, especially if in family and even earlier if immediate family history. 

And report any changes in "body performance" things immediately to your doctor.

Will update every so often as I move down the road of treatment.



Title: Re: Medical Status of Boardmembers...I'll start
Post by: cadhlancian on December 19, 2019, 03:54:19 AM
Good man yourself ! Sounds like you well on your way to winning this one . Keeper lit 🔥
I wish you well 👍🏻
Title: Re: Medical Status of Boardmembers...I'll start
Post by: grounded on December 19, 2019, 08:16:27 AM
Hope all goes well for your treatment and have a great Christmas
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on December 19, 2019, 08:27:21 AM
Jeezus!

All the best with the treatment and recovery. I'm desperate for check ups, haven't been to doctors in over 25 years, and not registered even with a local surgery. But I plan to make next year my time to get sorted out with all things medical.

I work in a medical capacity and advise people everyday to do something about their hearing and never do anything about my own healthcare!

48 in two weeks so was wondering about the Randox health check, is it worth it?
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Mikhailov on December 19, 2019, 08:32:52 AM
Ball hopper, all the best for 2020. You sound like a strong character and a positive one at that which is 100% needed to fight any form of the disease. All the best and I will look out for your updates.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Rossfan on December 19, 2019, 09:10:41 AM
Best wishes with it all Hopper.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: quit yo jibbajabba on December 19, 2019, 09:15:15 AM
Good luck chap
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Aristo 60 on December 19, 2019, 10:11:00 AM
Good luck for the long road Mr Hopper.

I'm sitting here thinking I'm lucky to have my full health, but who ever knows.

40 years done - eyes are starting to go a bit but other than that all seems good. Touch wood.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Taylor on December 19, 2019, 10:32:25 AM
Stay strong Hopper
Title: Re: Medical Status of Boardmembers...I'll start
Post by: five points on December 19, 2019, 10:41:43 AM
Good luck Ball Hopper and thanks for posting this. I will on your advice be having a colonoscopy in 2020.

Happy Christmas.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: magpie seanie on December 19, 2019, 12:04:47 PM
Sorry to hear about the challenges you face but heartened by your positivity. I wish you all the best.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: joemamas on December 19, 2019, 03:17:03 PM
Good luck with the treatment.
I hope you have a full recovery.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Dire Ear on December 19, 2019, 04:45:43 PM
Good luck to you Mr Hopper!  Like your attitude,  hope all goes to plan.  Positivity is supposed to be benefical in any health process.
A good thread,  will add later but will be glad to see the end of 2019 myself.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: tc_manchester on December 19, 2019, 04:53:59 PM
Aged 53 myself. In Feb had the hiccups for a week so got the full checkup done. Thankfully all was well but when I was in for the colonoscopy I was chatting to fellow in the next bed who told me that he had it done every 3 years since his father died with bowel cancer. I'd advise anybody who hits 50 to get a full MOT done.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: bannside on December 19, 2019, 10:11:31 PM
This has the potential to be a fantastic thread, one where members can solace and advice along with a dollop of humour and craic too. I think it will stand the test of time....congrats Ball Hopper and the best of luck with your upcoming challenge.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: illdecide on December 19, 2019, 10:59:42 PM
Firstly Ball Hopper I wish you all the best for 2020 and fingers crossed you make a full recovery, my problem now sounds so petty in comparison to what is ahead of you.

I'm for a full hip replacement at the end of Jan (5-6 weeks time)...at 46 i'm devastated as i'm in reasonable shape for my age and generally fit & well so you can imagine how i felt being told that when all i thought i had was a bad groin injury. Four years of groin/hip flexor pain from the moment i throw my leg out of bed but hopefully this sorts it out.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Never beat the deeler on December 19, 2019, 11:33:28 PM
Good on you BH - a very positive way of meeting it head on. Best of luck with it.

In not nearly as serious news.....

Age 35. Currently in a moon boot.
Been playing 5-a-side soccer 3 times a week with different levels of teams.
Rolled my ankle 7 weeks ago and tore 4 ligaments. 4 weeks on crutches and 3 weeks in the boot, now physio has said I can start to phase out the boot.
Hope to be running by Feb with a 4k or 8k fun run in March the goal.

Third relatively serious injury in 3 years (torn calf x 2 leading to DVT both times) so the wife is pressing the retirement angle.

Title: Re: Medical Status of Boardmembers...I'll start
Post by: red hander on December 19, 2019, 11:33:50 PM
Keep her lit, son.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: The Gs Man on December 20, 2019, 08:11:14 AM
Best of luck Ball Hopper.

I love how you've linked your treatment schedule to the football season. 

Shows how quickly you'll be through it in the grand scheme of things.

Keep er lit.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: johnnycool on December 20, 2019, 09:07:44 AM
All the best Ball Hopper, keep up on the positivity, that can only but help in the healing process.

As a matter of interest, what were the tell tale signs of changes in "body performance" that led you to go to the Doctor?

If that's too personal then don't feel obliged to answer.

I need to educate myself on a lot of these things.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: J70 on December 20, 2019, 11:07:30 AM
Best of luck Ball Hopper. Sounds like you've a good medical team and a well laid-out plan to beat it.

Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tyrdub on December 20, 2019, 11:37:40 AM
Good Luck Ball Hopper, hope all goes well
Title: Re: Medical Status of Boardmembers...I'll start
Post by: trailer on December 20, 2019, 11:46:19 AM
Adh Mor Ball hopper. Hope it all goes well.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Dinny Breen on December 20, 2019, 11:55:55 AM
Best of luck Ball Hopper. Great to see a plan in place.

Age 46

Physically eye sight is deteriorating, have torn meniscus in both knees and a tear in a tendon my left shoulder, have suffered 3 prolapsed discs in my back. My orthopaedic surgeon says I have the of body 40 odd year old man who has played competitive sport for over 30 years and we are very keen to avoid surgery. Interesting my surgeon is Gary O'Toole, the ex-swimmer, sports mad and a great fella to talk about sport.

4 years ago after my mother's passing I developed Psoriasis, mild enough on body and will have it forever now, I treat it with a steroid cream. My brother also developed an autoimmune disease at the same time, in his case Alopecia, he was a handsome fecker but now as bald as an egg. Other than some fatty deposits on my liver and I am pretty good.

I do pilates when I can, and casual gym user, 5/6 times a month but regularly walk 5k four or five times a week.  Don't smoke and apart from the odd social gathering don't drink and never at home...Both grandfathers lived into their 90s and my Dad is 82 next year so nothing in my family history to plan for...
Title: Re: Medical Status of Boardmembers...I'll start
Post by: BennyHarp on December 20, 2019, 11:57:28 AM
Good man Ball Hopper - great to read your positive approach to tackling your illness! I agree with all the comments about early checking. Best wishes with your recovery!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: shark on December 20, 2019, 12:06:02 PM
Quote from: Dinny Breen on December 20, 2019, 11:55:55 AM
Best of luck Ball Hopper. Great to see a plan in place.

Age 46

Physically eye sight is deteriorating, have torn meniscus in both knees and a tear in a tendon my left shoulder, have suffered 3 prolapsed discs in my back. My orthopaedic surgeon says I have the of body 40 odd year old man who has played competitive sport for over 30 years and we are very keen to avoid surgery. Interesting my surgeon is Gary O'Toole, the ex-swimmer, sports mad and a great fella to talk about sport.

4 years ago after my mother's passing I developed Psoriasis, mild enough on body and will have it forever now, I treat it with a steroid cream. My brother also developed an autoimmune disease at the same time, in his case Alopecia, he was a handsome fecker but now as bald as an egg. Other than some fatty deposits on my liver and I am pretty good.

I do pilates when I can, and casual gym user, 5/6 times a month but regularly walk 5k four or five times a week.  Don't smoke and apart from the odd social gathering don't drink and never at home...Both grandfathers lived into their 90s and my Dad is 82 next year so nothing in my family history to plan for...

Gary O'Toole operated on my knee in 2013. Has been perfect since.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: ONeill on December 20, 2019, 02:49:57 PM
44. Bald eagle since 24. Last haircut in 1999 in Birmingham. Barber was embarrassed taking the money. Sight poor from age of 15. Lenses ever since. After nearly 30 years, was told last month that sight getting better and have them reduced. Optician says not Benjamin Button ye dick. Apart from broken foot from 5-a-side in 2016 which still throbs like fook in the winter, I've been fortunate. Terrible diet and love Peroni. And whiskey. Haven't had a sober weekend for a decade at least. Like peanuts and Dolly Parton. Run a few times a week to tick the ticker over. Starting to moan when I get up, slowly. Slightly more forgetful. Tired earlier at night. Sleep every day from 4-5 if possible.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: screenexile on December 20, 2019, 03:02:24 PM
38 and nothing major except the knees.

Have had 3 ACL operations on both legs. The first one was and is absolutely perfect since for the last 12 years. The other leg was never able to get straight and I ended up doing it again playing an over 35 competition a couple of years ago. Got the operation in Feb and the leg doesn't feel right very tight and unstable although my lack of keeping up with rehab hasn't helped things.

Diet is absolutely horrific although I wouldn't say I'm overweight but couldn't be healthy inside. Don't drink in the house but would have a good few pints 3 times a month or so.

With the knee I find it very difficult to exercise. If I was playing 5 a side/basketball it would be no problem nipping out for an hour 3 times a week but I just can't get motivated to go to the gym as I've tried it and hated it. Running not really an option as it's too sore on the knee. Have done a bit of cycling/spinning but hate it and the swimming pool is too far away really to make that work.  Any suggestions for exercise apart from everything that is shite?

Best of luck BH hope things work out for you you seem positive anyway and that's a good start!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: whitey on December 20, 2019, 03:35:24 PM
Closer to 50 than 40

Was on antibiotics-Clindomycin-earlier this year and ended up with fvckin C Diff, which can be fatal for the elderly and those already suffering from bad health

Anyway had to give up the sauce for a month,  and now 10 months later haven't touched a drop and probably never will. While not a continuous heavy drinker, I was a big one for binge drinking. My job could have me out every night if the week and many of my clients are big drinkers. I also have a generous expense account provides by my company.

Am religious about the gym and do not ever eat junk food or smoke

I never miss a doctors Appt and get my bloodwork done twice per year. Low good cholesterol is inherited from my mothers aide so I have to work very hard to keep within the acceptable ranges. Take cod liver oil and eat oatmeal consistently and they both help
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tony Baloney on December 20, 2019, 04:15:59 PM
Quote from: johnnycool on December 20, 2019, 09:07:44 AM
All the best Ball Hopper, keep up on the positivity, that can only but help in the healing process.

As a matter of interest, what were the tell tale signs of changes in "body performance" that led you to go to the Doctor?

If that's too personal then don't feel obliged to answer.

I need to educate myself on a lot of these things.
It's a good question. I get annoyed when cancer related deaths of people in the public eye are euphemistically referred to as "after a short/long illness". I get that their family may want privacy, but I think these are also a perfect opportunity to raise awareness, especially around signs and symptoms that people should be checking out.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tony Baloney on December 20, 2019, 04:27:56 PM
Great post BH. Very honest appraisal there and I wish you all the best. We also have a family history of bowel related diseases and I've been diagnosed with a touch of IBS in the past but nothing too bad, however it is one to be watched.

I have a hiatus hernia which was very uncomfortable until I started taking Lanzoprazole to control my stomach acid and it's now not too bad and only take the tablets when required. I'm at least a stone overweight and I have had many false starts at getting fit and staying fit but I'm starting to feel it now. Plan to not overindulge over Christmas and then start some sort of plan in Jan.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: ziggy90 on December 20, 2019, 05:36:29 PM
Quote from: Ball Hopper on December 19, 2019, 03:25:19 AM
This i not for the Depression thread...fair play to all contributing and giving good tips/advice.

Not for the alcohol thread either, although it might have played a minor part in my current status.  This Christmas will be my first alcohol-free one since 1977, as best I can figure.

Current status is I had my first chemotherapy session today (18 December) for colo-rectal cancer - two separate unrelated growths at either end of the colon.  Chemo session every two weeks starting again in early January (nothing scheduled Christmas or New Year's week as they want to focus on patients on their final sessions...also complicated by the fact that one of my drugs is administered via pump that I wear home over three days (Mon-Weds, Tues-Thurs or Wed-Fri ) which along with other patients in the same boat causes scheduling nightmares.  Taking the Wednesday out leaves only Tues-Thurs for everyone)

Eight chemo treatments in total by the end of March (so I'll miss the league), April off to recover somewhat (for club season), then 5 weeks of a lighter chemo/radiation combo (25 days in all) on a daily basis (Mon-Fri)...followed by a month or two to try to get over that (coincides with Super 8's) before surgery to whip whatever is left out of me...a week stay in hospital so proper planning will see me home every weekend.  All treatment over by the All-Ireland Final. 

Medical team is confident we can be successful in 2020...and constant screening thereafter to catch any recurrence as early as possible.  I'll have an advantage in that I work from home and won't be exposed to infection on trains, buses, or a workplace.  The adjustments to prevent side effects (things like very detailed oral hygiene to prevent mouth sores) are in full swing for the last few days and I'm confident of an easier (not necessarily easy) passage back to full health.

I'm ready to do whatever it takes to win this one and have a great support network in family as well as the medical arenas.

Lads, Early screening is vital...colonoscopy by age 50, especially if in family and even earlier if immediate family history. 

And report any changes in "body performance" things immediately to your doctor.

Will update every so often as I move down the road of treatment.

I went through more or less the same as you just over ten years ago. I had an emergency operation when my bowel ruptured and the surgeon had to do a bit of a botch job (his  words). I wore a bag for twelve months and then insisted on a reversal that the medical team advised against. The chemotherapy never really affected me (and it sounds like you're going through the same treatment) apart from a loss of feeling in the nerve ends of my hands and feet. I went back to work after three years and have stayed working since.
Stay as positive as you sound and enjoy your Christmas and take care. Keep us updated if you feel you can.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on December 20, 2019, 06:13:13 PM
Quote from: Tony Baloney on December 20, 2019, 04:15:59 PM
Quote from: johnnycool on December 20, 2019, 09:07:44 AM
All the best Ball Hopper, keep up on the positivity, that can only but help in the healing process.

As a matter of interest, what were the tell tale signs of changes in "body performance" that led you to go to the Doctor?

If that's too personal then don't feel obliged to answer.

I need to educate myself on a lot of these things.
It's a good question. I get annoyed when cancer related deaths of people in the public eye are euphemistically referred to as "after a short/long illness". I get that their family may want privacy, but I think these are also a perfect opportunity to raise awareness, especially around signs and symptoms that people should be checking out.

I'm with you on this, in his, for me the pancreatic cancer seems to be one of the quick hidden killers.

Friend of mine passed away last year, as fit a man you'll get, a runner, went to the gym every day and wouldn't be a drinker or smoked, ate healthy also.

Ended up with two types of cancer, fought it won it and it came back. The anger was there behind the smiles, during his cancer we managed a few triathlons and some races together, the only times I beat him over the years. Cancer is a Cnut, it doesn't care how well you look after yourself
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on December 20, 2019, 06:14:59 PM
First off, many thanks for the heartfelt best wishes from all.  It really is appreciated and shows how the GAA fans can rally around each other, even if almost unknown to each other.

The one or two of you that have put a colonoscopy on your to-do list has made this thread worthwhile already
.

First sign for me was blood on the toilet paper...do not presume this is piles/hemorrhoids.   Then blood might be in stool, or you imagine it is --- time to make ASAP doctor visit.  Of course, it all takes time from initial doctor visit, get referred to gastro expert, schedule colonoscopy and get results.  In my situation, first report was on 26 October and colonoscopy was 11 Nov. which was very quick.  MRI and CT scans on 26 Nov confirmed no spread to liver, lungs or bone.

The "died after a short illness" is indeed an odd one.  Is it part of Irish culture to not mention cancer?  I know my father never uttered the word...he'd tell me so-and so was sick, "he has the boyo" was his phrase.  And "breast cancer" contains two words that can never be mentioned. 

Of course, it is also true that it is not the cancer that finally kills - susceptibility to infection allows a minor cold to develop into pneumonia which causes the death.  Easier to talk about that I suppose.  I have a lot more paperwork and information on how to deal with chemo side effects to help prevent side illnesses than I have on the cancer itself.

The cancer treatment is very straightforward: 1) chemo to stop it growing; 2) chemo/radiation combo to kill it; 3) surgery to whip it out and take a bit of surrounding tissue in case it is contaminated too; 4) monitor for recurrence.

Stopping a cold turning into pneumonia when the body has no tools to resist (white blood cells) is a battle often lost.  Of course, the medics must see a drop in white blood cells, because if they hold their normal levels it means the chemo is not working on that patient.

I'm hoping my working from home status will help me avoid all the infection routes associated with commuting, workplace, lunches in public and so on. 

GAAGO will be my best friend for entertainment in 2020.  Might even have to brush up on the Gaeilge for TG4 games.

Chemo 1 of 8 ends today with the return of the pump after the 46-hour infusion of chemo drug 5-FU (google has plenty info on it).  That is the hard hitting full forward of chemo, hence the need to deliver it over 46 hours.  I'm developing a full back cross between Mick Lyons and Johnno Keeffe to fight it by mixing power with silky skills.  Ye younger pups might pick a combo of Seamus Moynihan and maybe a Ricey or McMahon to bring a Tyronie into the mix. 

No side effects thus far, although they tell me fatigue will send me to bed for a few days Sun-Tues next week.  Small price this time, but the cumulative toxicity will exact its toll as we go forward.

Will update before next chemo session...everyone have a safe and wonderful Christmas holiday...I know I'll hug my people a little harder this year!!!




Title: Re: Medical Status of Boardmembers...I'll start
Post by: Rois on December 20, 2019, 06:25:16 PM
Wishing you every success Ball Hopper.  It is great that you're sharing your experiences - so many people will identify with it, and the rest of us will learn from it.  Sounds like you might be done with the dosage by Christmas Day, so enjoy being looked after!

My sister's an NHS urologist and deals a lot with bladder/prostate cancers and she has patients of all ages, shapes and sizes.  You're never too young or too healthy to be able to risk ignoring signs of things not being right.

Action Cancer in the north do a great men's MOT check - my OH has been getting it done for years.   
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Oraisteach on December 20, 2019, 08:01:03 PM
All the best, Ball Hopper
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Square Ball on December 20, 2019, 08:35:08 PM
All the very best BallHopper, very honest post and good luck with the treatment.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: balladmaker on December 21, 2019, 04:03:03 PM
Wishing you all the very best Ball Hopper, a very brave and worthwhile post.  Good luck!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Denn Forever on December 21, 2019, 04:36:45 PM
Keep her lit.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: tonto1888 on December 21, 2019, 05:42:58 PM
All the best BH, hope the treatment goes well
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ambrose on December 22, 2019, 12:09:57 AM
All the best BH, stay positive and be good to yourself.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Main Street on December 27, 2019, 07:49:18 PM
The only thing which has a possibility of getting better with age is eyesight, perhaps also the art of goalkeeping.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: seafoid on December 30, 2019, 06:26:21 PM
Quote from: Main Street on December 27, 2019, 07:49:18 PM
The only thing which has a possibility of getting better with age is eyesight, perhaps also the art of goalkeeping.
Some whiskey  and some wine as well
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on December 31, 2019, 09:45:01 AM
Any sufferers of gout on the board?

Have had a few attacks of it (I think, haven't had it properly diagnosed yet) but the symptoms are very similar to what doctor goggle says!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Jeepers Creepers on December 31, 2019, 10:33:40 AM
Quote from: Milltown Row2 on December 31, 2019, 09:45:01 AM
Any sufferers of gout on the board?

Have had a few attacks of it (I think, haven't had it properly diagnosed yet) but the symptoms are very similar to what doctor goggle says!

Da in law has it and absolutly cripples him. Says he never felt pain like it.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on December 31, 2019, 11:13:48 AM
Quote from: Jeepers Creepers on December 31, 2019, 10:33:40 AM
Quote from: Milltown Row2 on December 31, 2019, 09:45:01 AM
Any sufferers of gout on the board?

Have had a few attacks of it (I think, haven't had it properly diagnosed yet) but the symptoms are very similar to what doctor goggle says!

Da in law has it and absolutly cripples him. Says he never felt pain like it.

Aye the pain is horrible, only way I can describe it is, if you stub your toe real bad and the pain lasts a hell of a lot longer!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Dire Ear on December 31, 2019, 11:17:17 AM
Have the numbers of 4 with " cures " for gout, if you want them? I'm trying to copy and paste but it's not working
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on December 31, 2019, 11:30:56 AM
Quote from: Dire Ear on December 31, 2019, 11:17:17 AM
Have the numbers of 4 with " cures " for gout, if you want them? I'm trying to copy and paste but it's not working

Would love them! It's purely a night early morning thing, once I'm up and moving it's bearable and last for a few days! Will get it properly diagnosed soon.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Dire Ear on December 31, 2019, 11:44:58 AM
Paddy Hughes 02887738626 Coalisland
Peter McGahan 00353860711895 Ballyjamesduff
Annetta 00353749149373 Castlefin
Jimmy 079018918879
Some of these might not work, don't know how old the list is but good luck
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Main Street on December 31, 2019, 02:48:38 PM
Quote from: Milltown Row2 on December 31, 2019, 11:13:48 AM
Quote from: Jeepers Creepers on December 31, 2019, 10:33:40 AM
Quote from: Milltown Row2 on December 31, 2019, 09:45:01 AM
Any sufferers of gout on the board?

Have had a few attacks of it (I think, haven't had it properly diagnosed yet) but the symptoms are very similar to what doctor goggle says!

Da in law has it and absolutly cripples him. Says he never felt pain like it.
Aye the pain is horrible, only way I can describe it is, if you stub your toe real bad and the pain lasts a hell of a lot longer!
if you are stuck, you can try the 2 basin hot/cold method. The purpose of this is to disperse the crystals that have accumulated in the toe, thereby reducing the pain felt.
One basin of ice cold water, then the other as hot as you can tolerate,  fully dunk the foot for a minute in the hot  then a minute in the other ice cold
then back into the hot, do it 3 or 4 times and see how it feels. Considering the pain factor, this is a no brainer and works for some.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: red hander on December 31, 2019, 03:05:13 PM
Quote from: Milltown Row2 on December 31, 2019, 11:13:48 AM
Quote from: Jeepers Creepers on December 31, 2019, 10:33:40 AM
Quote from: Milltown Row2 on December 31, 2019, 09:45:01 AM
Any sufferers of gout on the board?

Have had a few attacks of it (I think, haven't had it properly diagnosed yet) but the symptoms are very similar to what doctor goggle says!

Da in law has it and absolutly cripples him. Says he never felt pain like it.

Aye the pain is horrible, only way I can describe it is, if you stub your toe real bad and the pain lasts a hell of a lot longer!

Developed gout in 2005, had two severe attacks where I couldn't even stand for three weeks due to pain (last one in 2013) and several other less severe attacks where I was able to hobble about. Mainly in feet, but has also hit knees and ankles, even knuckles. First big attack went to doctor after fourth week (was just about able to drive/shuffle about) but by that time the uric acid was out of system and didn't show up in tests. He said a second attack would have to be confirmed before he would prescribe specific gout medication. Second (and last, so far) really bad attack was six years later, but didn't bother going back as by time I'd be fit to see him the uric acid would be gone again. I mostly self-medicate with cherry tablets and other supplement tablets like celery seed/plenty of water every day. I've found apple cider vinegar (tablets and pure in the bottle) can help head the bastard off at the pass when you get hint gout's on way, or ease the pain early on when it develops. Probably only myself to blame - overweight and too fond of beer. Working on the former, but, sorry to say, can't do anything about the latter  ;)
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Lar Naparka on December 31, 2019, 03:34:43 PM
Quote from: Milltown Row2 on December 31, 2019, 09:45:01 AM
Any sufferers of gout on the board?

Have had a few attacks of it (I think, haven't had it properly diagnosed yet) but the symptoms are very similar to what doctor goggle says!
I'm afraid you can include me in as Groucho Marx might put it.
Used to be crippled with the damn condition- frequent attacks in both feet that left me unable to walk without great pain and difficulty.
However, without really understanding why, the attacks have eased off considerably and I can't recall experiencing severe pain in the last five years or so.
I have been using Alpurinol for the condition and it probably is effective in stopping all but the most severe attacks.
However, it is no use when I am experiencing a severe attack but since I was also prescribed Colchicine when I felt an attack coming on, I have managed to get away with nothing more than relatively minor discomfort.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on December 31, 2019, 04:08:15 PM
Thanks for the advice, it's a strange one but I definitely fall in the bracket of rich foods and probably over my weekly allowance of alcohol! Not over weight though.

If I look back at it this is probably my third I just thought initially it was an injury from running or hiit classes I was talking. The pain is unreal at the start but eases throughout the day, hobbled along with dogs for their walk today, about 5k. Feeling a lot better now, my turn for the NY bash so 18 coming for food and drinks! So it may flare up again in the morning !  :-\
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on December 31, 2019, 09:30:35 PM
Chemo 1 of 8 done and dusted.  Had 4 hr infusion on 18 Dec and wore pump for the following 46 hours for 5-FU drug.  Side effects were very manageable - some fatigue for about 5 days, early bed and late rise every day - took afternoon nap on only 1 day...but falling asleep on the sofa under a blanket while watching sports on TV is not unusual for me.

No effect on appetite over the Christmas, although I failed to finish the second plate of turkey and ham.  Had some wine last night and I enjoyed it immensely.

I must say that I'm really enjoying the days I'm feeling great - a little lesson there maybe regarding overall attitude to what's going on around us?

Next session is Tuesday, 7 Jan and I'm expecting a little more down time as the cumulative effect starts.  I'll update around the Sunday after that.



Title: Re: Medical Status of Boardmembers...I'll start
Post by: BennyCake on December 31, 2019, 09:46:53 PM
Gout can be caused if your kidneys are functioning properly, the crystals can't be broken down properly and pass through and head to the knee/foot.

I think the rich food thing is a myth?

Cider vinegar and honey in hot water meant to be good for it. Cherry juice as well.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Boycey on December 31, 2019, 10:28:37 PM
Well done Ball Hopper keep her lit....

Ur story getting swamped by tales of gout, gout is a bastard though
Title: Re: Medical Status of Boardmembers...I'll start
Post by: BennyCake on December 31, 2019, 10:40:36 PM
Yes, best of luck ball hopper.  Hope all goes well.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: bannside on December 31, 2019, 11:01:32 PM
Good stuff BH. Going to be an interesting and honest blog.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tony Baloney on January 01, 2020, 12:05:57 AM
Sounds like you've got the correct attitude Ball Hopper. Not sure I'd be quite as chipper but it'll definitely help. All the best in 2020.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Milltown Row2 on January 01, 2020, 01:16:48 AM
Quote from: Boycey on December 31, 2019, 10:28:37 PM
Well done Ball Hopper keep her lit....

Ur story getting swamped by tales of gout, gout is a b**tard though

Sorry  :(

All the best Hopper, your attitude is inspirational!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: balladmaker on January 01, 2020, 03:42:01 PM
Good luck for second session on the 7th BH .... look forward to your next update.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 08, 2020, 01:37:58 AM
Chemo session 2 of 8 was today (Tues 7 Jan) and all went well.  Blood numbers before the test showed white blood cells 3.7 (down from 7.5 before chemo 1), normal is 3.5 to 10.  They will get concerned if I go below 2.0 (they want to keep some white cells to fight infection), but are pleased to see the chemo is working - what the units are don't really matter, or make sense to me, just the number.  All I need the "danger" number, which I must be above or the chemo session is postponed. 

My weight was also 10 pounds (4.5kg) lighter today than 18 Dec...first time ever to lose weight over Christmas and New Years...still 10 pounds too high so I need to lose less between sessions to stay at my "fighting weight".  That might be a battle on a protein and leafy green veg diet with zero sugar allowed.

No other problems today, slept for about an hour and a half after the benadryl dose.  In at 9am, home by just after 2pm...5 hours.

Zero sugar diet for the rest of the week and they tell me fatigue will hit toward the weekend and last a bit longer than last time.  Glucose check twice a day watching it rise from today's drugs and hopefully back to normal by Friday.

Pleased with the way things today.

*Update on chemo 1...sensitive to cold things - metal even inside the house!!! *Plus glucose spike.

First side effects showed up on Sat 21 Dec with some fatigue that lasted about 3 days...on only one day did I take an afternoon nap, so it wasn't that bad – early to bed and later getting up each morning was enough.  I was also sensitive to cold (side effect of oxaliplatin) in a very odd way.  I had numbness of fingers and hand that touched anything cold that lasted up to 30 minutes after contact.  Don't touch anything cold, you say – but cold metal is more prevalent than you think...fair enough to say don't handle anything in the fridge, but numbness was also caused by touching items for even the shortest times...things like the flush handle on the toilet, the faucets in the kitchen and bathroom, the door of the fridge, door knobs and the mailbox to name a few.  Solution was wearing gloves all day (Santa Claus was all over this and brought me a pair of warm gloves with special fingertips that allow use of an iPad or iPhone!).  Never really got back to 100% normal, so gloves all day every day for me.   Three cheers for Santa Claus for a solution that doesn't impact me a lot.

So fatigue and cold sensitivity side effects, which were really minimal and more or less gone (or I avoided all cold things) by Christmas Day, allowed me to enjoy the festive season.  However, one side effect was not seen until 27 Dec – my glucose levels went sky high.  A combination of me trying to be as healthy as I can by putting on a few pounds/kilos knowing the chemo will take its toll in that arena, plus a side effect of decadron (a steroid given pre-chemo to primarily prevent nausea).  It took about a week to get the glucose levels down to normal, plus I got good advice on having a sugar-free diet for about a week after each chemo session – plenty of chicken, white fish, pork and leafy green vegetables for dinner with no sauces, potatoes, pasta or carbs in general.  Original porridge is also sugar free (and pretty much taste free as well) so that will do for breakfast, so no more big, hearty breakfasts for a while.

On the plus side, drinking two pints of warm to hot water first thing every morning and a few more throughout the day has been a very pleasant and beneficial surprise. I'm avoiding crowds to prevent any infections/colds or whatever, so no shopping or using public transport.

All in all, session 1 went well for me...I've learned some "coping mechanisms" that can be used to anticipate and hopefully lessen the side effects as I go forward.



Thanks for all the support and good wishes.  I plan to update again on Sunday 12th.

Title: Re: Medical Status of Boardmembers...I'll start
Post by: Taylor on January 08, 2020, 08:04:31 AM
Well done BH - great attitude.

Best of luck with future sessions
Title: Re: Medical Status of Boardmembers...I'll start
Post by: quit yo jibbajabba on January 08, 2020, 09:20:05 AM
Very informative also BH and again all the best with it all
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Franko on January 08, 2020, 09:20:20 AM
Quote from: Ball Hopper on January 08, 2020, 01:37:58 AM
Chemo session 2 of 8 was today (Tues 7 Jan) and all went well.  Blood numbers before the test showed white blood cells 3.7 (down from 7.5 before chemo 1), normal is 3.5 to 10.  They will get concerned if I go below 2.0 (they want to keep some white cells to fight infection), but are pleased to see the chemo is working - what the units are don't really matter, or make sense to me, just the number.  All I need the "danger" number, which I must be above or the chemo session is postponed. 

My weight was also 10 pounds (4.5kg) lighter today than 18 Dec...first time ever to lose weight over Christmas and New Years...still 10 pounds too high so I need to lose less between sessions to stay at my "fighting weight".  That might be a battle on a protein and leafy green veg diet with zero sugar allowed.

No other problems today, slept for about an hour and a half after the benadryl dose.  In at 9am, home by just after 2pm...5 hours.

Zero sugar diet for the rest of the week and they tell me fatigue will hit toward the weekend and last a bit longer than last time.  Glucose check twice a day watching it rise from today's drugs and hopefully back to normal by Friday.

Pleased with the way things today.

*Update on chemo 1...sensitive to cold things - metal even inside the house!!! *Plus glucose spike.

First side effects showed up on Sat 21 Dec with some fatigue that lasted about 3 days...on only one day did I take an afternoon nap, so it wasn't that bad – early to bed and later getting up each morning was enough.  I was also sensitive to cold (side effect of oxaliplatin) in a very odd way.  I had numbness of fingers and hand that touched anything cold that lasted up to 30 minutes after contact.  Don't touch anything cold, you say – but cold metal is more prevalent than you think...fair enough to say don't handle anything in the fridge, but numbness was also caused by touching items for even the shortest times...things like the flush handle on the toilet, the faucets in the kitchen and bathroom, the door of the fridge, door knobs and the mailbox to name a few.  Solution was wearing gloves all day (Santa Claus was all over this and brought me a pair of warm gloves with special fingertips that allow use of an iPad or iPhone!).  Never really got back to 100% normal, so gloves all day every day for me.   Three cheers for Santa Claus for a solution that doesn't impact me a lot.

So fatigue and cold sensitivity side effects, which were really minimal and more or less gone (or I avoided all cold things) by Christmas Day, allowed me to enjoy the festive season.  However, one side effect was not seen until 27 Dec – my glucose levels went sky high.  A combination of me trying to be as healthy as I can by putting on a few pounds/kilos knowing the chemo will take its toll in that arena, plus a side effect of decadron (a steroid given pre-chemo to primarily prevent nausea).  It took about a week to get the glucose levels down to normal, plus I got good advice on having a sugar-free diet for about a week after each chemo session – plenty of chicken, white fish, pork and leafy green vegetables for dinner with no sauces, potatoes, pasta or carbs in general.  Original porridge is also sugar free (and pretty much taste free as well) so that will do for breakfast, so no more big, hearty breakfasts for a while.

On the plus side, drinking two pints of warm to hot water first thing every morning and a few more throughout the day has been a very pleasant and beneficial surprise. I'm avoiding crowds to prevent any infections/colds or whatever, so no shopping or using public transport.

All in all, session 1 went well for me...I've learned some "coping mechanisms" that can be used to anticipate and hopefully lessen the side effects as I go forward.



Thanks for all the support and good wishes.  I plan to update again on Sunday 12th.


What an amazing insight this is.  And the fact that you can deliver this whilst going through it makes it all the more incredible.

Tip of the hat to you sir - and good luck.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: general_lee on January 08, 2020, 09:42:36 AM
Best of luck ball hopper. Your positive attitude is inspiring, keep it up!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: laoislad on January 08, 2020, 09:49:22 AM
Not sure why I'm only after seeing this thread now.
Fair play to you for posting this Ball Hopper.
The best of luck to you and your family in the weeks and months ahead.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Dire Ear on January 08, 2020, 12:47:43 PM
Good man Mr Hopper,  all the best on your journey
Title: Re: Medical Status of Boardmembers...I'll start
Post by: magpie seanie on January 08, 2020, 01:01:27 PM
Good stuff Ball Hopper, keep her lit.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: meatsy86 on January 08, 2020, 01:06:38 PM
Fair play Ball Hopper, your posts have created an unbelieveable insight for someone who has thus far thankfully not had to go through something of this nature. Keep it up and all the best with the rest of your treatment.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: BennyCake on January 08, 2020, 02:30:40 PM
Thanks for sharing BH.

You seem to have a good positive attitude, which can only help getting through it all. I'm sure it can't be easy for you and the family at times. Best of luck with everything.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: joemamas on January 08, 2020, 04:14:28 PM
Quote from: Franko on January 08, 2020, 09:20:20 AM
Quote from: Ball Hopper on January 08, 2020, 01:37:58 AM
Chemo session 2 of 8 was today (Tues 7 Jan) and all went well.  Blood numbers before the test showed white blood cells 3.7 (down from 7.5 before chemo 1), normal is 3.5 to 10.  They will get concerned if I go below 2.0 (they want to keep some white cells to fight infection), but are pleased to see the chemo is working - what the units are don't really matter, or make sense to me, just the number.  All I need the "danger" number, which I must be above or the chemo session is postponed. 

My weight was also 10 pounds (4.5kg) lighter today than 18 Dec...first time ever to lose weight over Christmas and New Years...still 10 pounds too high so I need to lose less between sessions to stay at my "fighting weight".  That might be a battle on a protein and leafy green veg diet with zero sugar allowed.

No other problems today, slept for about an hour and a half after the benadryl dose.  In at 9am, home by just after 2pm...5 hours.

Zero sugar diet for the rest of the week and they tell me fatigue will hit toward the weekend and last a bit longer than last time.  Glucose check twice a day watching it rise from today's drugs and hopefully back to normal by Friday.

Pleased with the way things today.

*Update on chemo 1...sensitive to cold things - metal even inside the house!!! *Plus glucose spike.

First side effects showed up on Sat 21 Dec with some fatigue that lasted about 3 days...on only one day did I take an afternoon nap, so it wasn't that bad – early to bed and later getting up each morning was enough.  I was also sensitive to cold (side effect of oxaliplatin) in a very odd way.  I had numbness of fingers and hand that touched anything cold that lasted up to 30 minutes after contact.  Don't touch anything cold, you say – but cold metal is more prevalent than you think...fair enough to say don't handle anything in the fridge, but numbness was also caused by touching items for even the shortest times...things like the flush handle on the toilet, the faucets in the kitchen and bathroom, the door of the fridge, door knobs and the mailbox to name a few.  Solution was wearing gloves all day (Santa Claus was all over this and brought me a pair of warm gloves with special fingertips that allow use of an iPad or iPhone!).  Never really got back to 100% normal, so gloves all day every day for me.   Three cheers for Santa Claus for a solution that doesn't impact me a lot.

So fatigue and cold sensitivity side effects, which were really minimal and more or less gone (or I avoided all cold things) by Christmas Day, allowed me to enjoy the festive season.  However, one side effect was not seen until 27 Dec – my glucose levels went sky high.  A combination of me trying to be as healthy as I can by putting on a few pounds/kilos knowing the chemo will take its toll in that arena, plus a side effect of decadron (a steroid given pre-chemo to primarily prevent nausea).  It took about a week to get the glucose levels down to normal, plus I got good advice on having a sugar-free diet for about a week after each chemo session – plenty of chicken, white fish, pork and leafy green vegetables for dinner with no sauces, potatoes, pasta or carbs in general.  Original porridge is also sugar free (and pretty much taste free as well) so that will do for breakfast, so no more big, hearty breakfasts for a while.

On the plus side, drinking two pints of warm to hot water first thing every morning and a few more throughout the day has been a very pleasant and beneficial surprise. I'm avoiding crowds to prevent any infections/colds or whatever, so no shopping or using public transport.

All in all, session 1 went well for me...I've learned some "coping mechanisms" that can be used to anticipate and hopefully lessen the side effects as I go forward.



Thanks for all the support and good wishes.  I plan to update again on Sunday 12th.


What an amazing insight this is.  And the fact that you can deliver this whilst going through it makes it all the more incredible.

Tip of the hat to you sir - and good luck.

+1

This is exactly what I thought upon reading.
Stay positive, God Bless.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tony Baloney on January 08, 2020, 08:50:45 PM
Good stuff BH. Keep us updated as you go.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: macdanger2 on January 09, 2020, 05:36:20 PM
Good luck with it all BH
Title: Re: Medical Status of Boardmembers...I'll start
Post by: illdecide on January 09, 2020, 10:04:38 PM
You're a brave man BH, fair play to ya. Keep positive and the end result will be good
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tyrdub on January 10, 2020, 08:38:35 AM
I'm well impressed BH, keep doing what you're doing. Good luck
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 12, 2020, 07:46:15 PM
Completed chemo 2 from Tuesday to Thursday last.  In an odd coincidence, the nurse administering my chemo infusion also took care of some of my wife's infusions for breast cancer in 2002...over 17 years ago.  Of course, they talked away about their lives since then for ages while I just lay there wondering when I'd get any attention...normal enough when the women start talking, I suppose, and she says no different when us men start on about GAA and sports in general.  Had to concede that point in fairness.  Wife made a full recovery, by the way.  Her experience has made us all the more knowledgeable about the expectations for my treatment, although the medics say things have improved a lot in treatments and side effect management over the last 10 years even.

Cold sensitivity set in earlier this time, on Weds morning, but I was better able to cope - soak fingers in warm water for up to 10 mins gave me relief for several hours.  A little bit of mouth tenderness didn't really develop into anything (kept all tasting faculties and appetite stayed good).

Glucose levels have returned to near normal with use of a zero-sugar diet.  No potatoes, bread, pasta or carbs in general.  High protein and leafy green veg content - although I must admit to planning one "non-diet" dinner each week which I look forward to almost like a child does Christmas.  No alcohol, except for the "non-diet" dinner a few days before each chemo where I hope to have a glass of red or two, but if the mouth is sensitive, the alcohol will only make it worse.  I hope to enjoy such a meal prior to the next few sessions at least, although an interim diet of chicken, pork or white fish (all lightly seasoned) isn't exactly a hardship either.

Fatigue has not hit me yet, although I'm deliberately going to bed earlier every night (9:30pm last night) and getting up maybe 2 hours later.  So far no inclination for an afternoon nap, but that could all change tomorrow for a few days.  I won't fight it if that's what the body needs.

White blood cell count (specifically neurophils) was approaching the low threshold on Tuesday - firstly, that's a good sign that the chemo drugs are actually working; but not so good in that I may need an injection boost of some sort next week to ward off infections.

Weight stayed the same, more or less, and no other side effects appeared as of yet.  Meet oncologist on Weds for a review and on to chemo 3 the following week, Tues 21 Jan.

All in all, I'm well pleased with the way things are going...the chemo drugs are working by killing all the fast-dividing cells, including the cancer cells hopefully, and I'm not suffering greatly in any way from side effects as of yet...that will probably change with each session as I expect existing side effects to appear earlier, be harsher and last longer while some new side effects will make their presence known in some uncomfortable manner.

2 out of 8 sessions complete now...25% is a quarter of the way home.  My work from home is unfortunately based in the very early morning time-frame, so that has been neglected a bit.  I might try and get to some this week with even earlier bedtimes.

Will update again next Sunday 19th...thanks again for all the good wishes and it's nice to see this thread getting more reads than the Munster Club Championship one I start every year!!!  Hoping those who made a commitment for colonoscopy or any other medical appointments in 2020 have started to follow through with scheduling.

Cheers for now...

 
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Targetman on January 12, 2020, 09:14:13 PM
Full of admiration for you BH, stay strong and good luck!!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: bannside on January 12, 2020, 10:27:49 PM
Thanks again BH.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Lar Naparka on January 13, 2020, 12:17:36 AM
Keep the faith, BH!
You are an inspiration for your fellow board members and, without a doubt, all are wishing you well.
Rath Dé ort. May God bless you and yours.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 17, 2020, 05:29:54 AM
Early update...

Met oncologist on Weds last for a review – and she is very pleased with the tolerance I'm showing to the chemo drugs.  Weight down around 6 lbs/3 kg since 9 January.  She says the weight loss is mostly due to diet improvement and less due to chemo, which is good.  I'm still 10-15 lbs/5-7 kg above what I think is my "fighting" weight, but charts say I should be aiming to lose double that – we should all weigh what we were at 18 years of age...no chance of that happening.

All the side effects I experienced were gone by Tuesday last – 7 days after the chemo session - and I'm able to focus on building up my strength to as high a level as possible for the next session.  That's my overall goal – once a session is completed, I've 11 days to get over the side effects and get as well as I can get by avoiding illness and having great nutrition, sleep and exercise.  Mind you, the exercise is rather minimal but even the smallest bit helps both the nutrition (hunger) and sleep.

2 out of 8 sessions complete now...25% is a quarter of the way home.  I'm feeling great and looking forward to a quiet weekend at home with the family.

Chemo 3 set for next Tuesday 21 January...bring it on!!!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: GJL on January 17, 2020, 08:02:07 AM
Your posts are inspirational BH. The very best of luck in your remaining treatment.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 26, 2020, 09:51:16 PM
26 Jan Update.  Things going very well for me, thankfully.

Completed chemo 3 from 21-23 January.   The weight I lost in first week after chemo 2 was regained 100% by chemo 3...to the exact ounce.  Very pleased with that – being as strong as possible for the next round is my goal once I walk out of a session.

Cold sensitivity set in earlier this time with my fingers tingling as soon as I got home.  Better management helped me overcome it – and the toes tingling for most of the following day – warm water soaking for the fingers several times a day and wearing gloves fulltime along with super warm socks.

A little bit of mouth tenderness again, but relatively mild – plenty of rinsing the mouth with salt/baking soda in warm water, along with a soft toothbrush, several times each day helped.  Spicy seasoning, no matter how little, didn't agree with my mouth this time, so that's gone.  However, appetite stayed good throughout and using some sugar-free salad dressings in place of seasoning helped taste and enjoyment.

Fatigue did not hit me either on this session.  Again, going to bed earlier every night (9:30pm or so) was a big help.  Glucose levels have returned to near normal with use of a zero-sugar diet. 
White blood cell count (specifically neutrophils) was approaching the low threshold on chemo 2 – back to normal by chemo 3 test.  Seems the body just kicked into action and got the bone marrow working harder.  Platelet count (important for blood clotting) was below normal this time – not a problem per staff, but will closely monitor.
 
It's amazing to me to see what I call the traditional side effects of chemo – namely, 100% hair loss and being on one's knees in the bathroom with nausea and vomiting for 4 days – being completely absent in my case.  Of course, the combinations of medications get the plaudits here due to great research work in these fields.

Avoiding infection is also a high priority and apart from interacting with the public and avoiding their bugs and viruses during flu season, there are a few other routes of infection that are worth mentioning here that I hadn't really thought about.  Specifically, infection through open wounds ranks highly.  In this regard, it is advisable to use an electric razor (or grow a beard) to eliminate cuts and nicks.   Also, have properly sharpened knives in the kitchen (putting extra pressure on dull knives causes most kitchen cuts) ...or have someone else do the veggie chopping duties.  Always cut away from the body (especially if opening a box with a blade of some sort).  Of course, one must wear task appropriate gloves when working with tools – even the entry level safety guy at work knows that.

My oncologist decided to cancel the "between sessions" review as she is very pleased with the tolerance that I'm showing to the chemo drugs and the ability to regain 100% of the weight loss.   

Again, I'm very pleased with the way things are going...the chemo drugs are working and I'm not suffering greatly in any way from the side effects. 

Finished Billions season 4 and Shetland season 5 this week...not sure what is in the pipeline for next week's viewing, although the Gaelic Football and Hurling being back on GAAGO will certainly help fill a dreary winter's night or two...I think 5 games will be available on demand from 25/26 Jan games.

3 out of 8 sessions complete now...one more (4-6 Feb) and I'm halfway there!

Thanks again for all the support and good wishes. 
Title: Re: Medical Status of Boardmembers...I'll start
Post by: macdanger2 on January 26, 2020, 10:47:26 PM
Good man BH, good to hear it's going well
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tony Baloney on January 26, 2020, 11:06:06 PM
That's great news BH. Apart from one big factor, you could nearly say you were living the dream with all this lying about watching tv  ;D

I hope things keep going the same way for you. 💪
Title: Re: Medical Status of Boardmembers...I'll start
Post by: BennyCake on January 26, 2020, 11:29:38 PM
Glad to hear things are going well, BH. You're an inspiration.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: GiveItToTheShooters on January 27, 2020, 12:43:26 AM
All the best BH, your courage and mindset are inspirational. Keep er lit
Title: Re: Medical Status of Boardmembers...I'll start
Post by: whitey on January 27, 2020, 01:28:29 AM
You are an inspiration.....keep her lit buck
Title: Re: Medical Status of Boardmembers...I'll start
Post by: cadhlancian on January 27, 2020, 02:40:05 AM
Good man BH , great attitude, you'll be back to full health in no time 🙏
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Tyrdub on January 27, 2020, 02:17:52 PM
Brilliant BH, absolutely briliant
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Taylor on January 27, 2020, 03:20:38 PM
Well done BH.
Great stuff
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Under Lights on January 27, 2020, 04:52:55 PM
I've mentioned on here before. In 2013 the football club organised a heart scan for all members, well you paid £15. I was picked up to have had a murmer.
Few further scans and it turned out that there was a hole between two ventricles. Blood flowing too and fro. Had it since birth but wasn't picked up. Was 27 at the time of the scan. I was told keep up active lifestyle and go about your business and I would just be checked up on every couple of years.
A year and a half ago the scan had then shown that the heart was increasing in size. Its been decided that it is best to get the holes plugged up now.
Turns out there is one hole at 12mm and a few other smaller holes. This means that they now have to do OHS and patch, if it had of been one hole they may have been able to go up through my groin and put in a umbrella plug.
Anyway it seems pretty common was just wondering has anyone else had this done by OHS and was looking to talk to people who have about what to expect after the operation. Was told it will happen in the next 6-9 months however with Brexit now this Friday and £350m a week being pumped into our NHS I expect it to happen much much sooner.

Title: Re: Medical Status of Boardmembers...I'll start
Post by: J70 on January 27, 2020, 06:11:01 PM
Best of luck Under The Lights. I lived with a lad who had OHS, and it took a month or two to recover from the op itself, but it was all good after that. Different procedure to yours, but I'd imagine the op recovery time would be similar, even if the realization of full benefits from it might be different.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: J70 on January 27, 2020, 06:12:33 PM
Good to hear your progress BH!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Under Lights on January 27, 2020, 06:54:56 PM
Quote from: J70 on January 27, 2020, 06:11:01 PM
Best of luck Under The Lights. I lived with a lad who had OHS, and it took a month or two to recover from the op itself, but it was all good after that. Different procedure to yours, but I'd imagine the op recovery time would be similar, even if the realization of full benefits from it might be different.

I'm hoping to return to a desk job after about 3 weeks. I had no symptoms, was as fit as a fiddle in my youth and 20s.. do nothing now at all. Said I was working at around a 70% capacity all my life too. Should be a new man whenever it's done.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 27, 2020, 07:04:29 PM
Quote from: Under Lights on January 27, 2020, 06:54:56 PM
Quote from: J70 on January 27, 2020, 06:11:01 PM
Best of luck Under The Lights. I lived with a lad who had OHS, and it took a month or two to recover from the op itself, but it was all good after that. Different procedure to yours, but I'd imagine the op recovery time would be similar, even if the realization of full benefits from it might be different.

I'm hoping to return to a desk job after about 3 weeks. I had no symptoms, was as fit as a fiddle in my youth and 20s.. do nothing now at all. Said I was working at around a 70% capacity all my life too. Should be a new man whenever it's done.

Hoping it all works out for you Under The Lights, seems like there is a good plan in place for a full recovery to even better than before.

The jump up from 70% to 100% in performance will have you up to all sorts of shenanigans!!!
Title: Re: Medical Status of Boardmembers...I'll start
Post by: illdecide on January 29, 2020, 02:32:47 PM
So guys i'm one hour away from my operation, sitting in the hospital here crapping myself. Full hip replacement on its way :-\
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Taylor on January 29, 2020, 02:38:28 PM
Quote from: illdecide on January 29, 2020, 02:32:47 PM
So guys i'm one hour away from my operation, sitting in the hospital here crapping myself. Full hip replacement on its way :-\

Best of luck illdecide.
New man after it
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Lar Naparka on January 29, 2020, 04:51:16 PM
Quote from: illdecide on January 29, 2020, 02:32:47 PM
So guys i'm one hour away from my operation, sitting in the hospital here crapping myself. Full hip replacement on its way :-\
Best of luck to you and rest assured you will be a better man when it's over. I have had both hips replaced and I have had 100% positive results. It may take a few weeks re-adjusting but the wait will be well worth it.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 29, 2020, 06:39:50 PM
Quote from: illdecide on January 29, 2020, 02:32:47 PM
So guys i'm one hour away from my operation, sitting in the hospital here crapping myself. Full hip replacement on its way :-\

Friend had a single hip replacement in early Dec...back driving an automatic inside two weeks.

Hope all goes well for you illdecide.  Keep us posted on your progress back to full mobility.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: illdecide on January 30, 2020, 04:32:42 PM
Thanks guys, had a rough nite last nite to be fair. The pain was tough but thankfully today it's not just as bad, every time i try to get up i get dizzy and feel sick but think i've the worst over me. Onward and upwards.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Farrandeelin on January 30, 2020, 04:43:48 PM
Quote from: illdecide on January 30, 2020, 04:32:42 PM
Thanks guys, had a rough nite last nite to be fair. The pain was tough but thankfully today it's not just as bad, every time i try to get up i get dizzy and feel sick but think i've the worst over me. Onward and upwards.

My dad got his hip replaced over a year ago. His advice to anyone who is getting it done is to stick rigidly to the plan the doctor has laid out for you. No shortcuts. I bet you're glad to be over the operation. Enjoy the rest too.

PS Ballhopper, I've been keeping an eye on this thread from day 1, you're an inspiration to us all.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Farrandeelin on January 30, 2020, 04:57:25 PM
Quote from: Under Lights on January 27, 2020, 04:52:55 PM
I've mentioned on here before. In 2013 the football club organised a heart scan for all members, well you paid £15. I was picked up to have had a murmer.
Few further scans and it turned out that there was a hole between two ventricles. Blood flowing too and fro. Had it since birth but wasn't picked up. Was 27 at the time of the scan. I was told keep up active lifestyle and go about your business and I would just be checked up on every couple of years.
A year and a half ago the scan had then shown that the heart was increasing in size. Its been decided that it is best to get the holes plugged up now.
Turns out there is one hole at 12mm and a few other smaller holes. This means that they now have to do OHS and patch, if it had of been one hole they may have been able to go up through my groin and put in a umbrella plug.
Anyway it seems pretty common was just wondering has anyone else had this done by OHS and was looking to talk to people who have about what to expect after the operation. Was told it will happen in the next 6-9 months however with Brexit now this Friday and £350m a week being pumped into our NHS I expect it to happen much much sooner.

I've had two OHSs. I was born with Tetrology of Fallot. (don't ask me, I've had lots of people ask me and all I tell them is that not enough oxygenated blood goes back to the heart). I had one when I was 5 years old. I kind of remember telling people that I was going to get my heart fixed. That was THE major one for me, get over that one and I should make it through life. I must have been over a month in hospital then.

Then as is normal, a boy grows to a man, but the stent didn't. So I had to have another one when I was 15. I remember that spring being tired and breathless more easily. The annual check up showed I needed a second one. Thank God, it has done me so far. I may or may not have to get another one done. I dread the annual check up in case the consultant says you need it etc.

I also had two operations when I was a small baby. The scars are there, under the shoulders of all places. I also have epilepsy, the doctors think it's all related to the operation I had when I was 5 (no proof, but at the time my mother remembers being told it was like a hammer blow to the brain) when I tell them. I hadn't been diagnosed with epilepsy until I was 21.

Anyways, enough about me, you'll be a new man and with all the advances in medical procedures you shouldn't be too bad. After the operation, you should be able to return to work following the doctor's orders etc. Mind yourself and do keep us updated on your progress Under Lights.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: illdecide on January 30, 2020, 04:59:18 PM
Quote from: Farrandeelin on January 30, 2020, 04:43:48 PM
Quote from: illdecide on January 30, 2020, 04:32:42 PM
Thanks guys, had a rough nite last nite to be fair. The pain was tough but thankfully today it's not just as bad, every time i try to get up i get dizzy and feel sick but think i've the worst over me. Onward and upwards.

My dad got his hip replaced over a year ago. His advice to anyone who is getting it done is to stick rigidly to the plan the doctor has laid out for you. No shortcuts. I bet you're glad to be over the operation. Enjoy the rest too.

PS Ballhopper, I've been keeping an eye on this thread from day 1, you're an inspiration to us all.

Big time, feel bad even discussing mine when you see what that mans going thru...
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Dire Ear on January 30, 2020, 05:09:27 PM
All the best you 3,  keep er lit
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Under Lights on January 30, 2020, 09:35:05 PM
Cheers Farrandeelin good post.
Title: Re: Medical Status of Boardmembers...I'll start
Post by: Ball Hopper on January 30, 2020, 09:54:18 PM
It definatley helps to share, even on this almost-anonymous forum.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on February 09, 2020, 10:04:17 PM
'Tis half-time!!! Completed chemo 4 from 4-6 February.   One more session starts in February (18th) and three start in March (3rd, 17th and 31st) to make up the second half...will be there in no time!

Weight loss came in at 3lbs/1.5kg, which is acceptable. 

White blood cell counts and platelets were back to normal by chemo 4 test, even if at the low end of the normal range.  Glucose levels also near normal, if a little high.  It is all balancing out, even if at the edges.

Cold sensitivity set in earlier this time, with my fingers numb as soon as I got home.  Again, better management helped me overcome it – and the toes tingling for most of the following day – warm water soaking for the fingers several times a day and wearing gloves fulltime along with super warm socks.  It is a very odd side effect.  More or less gone by late Saturday, but still keeping away from touching cold objects – might as well keep that habit full time until done with the drug that causes it.

A little bit of mouth tenderness again, but relatively mild – plenty of rinsing the mouth with salt/baking soda in warm water, along with a soft toothbrush, several times each day helps greatly.  However, appetite stayed good throughout and I think I'm keeping my strength up fairly well.

Fatigue did not hit me hard on this session, although I took afternoon naps on Thursday and Friday as the body told me I needed to do so.  Again, going to bed earlier every night (9:30pm or so) was a big help. 

Avoiding infection is top priority.  Working from home is a blessing as I avoid people all the time.  Being careful around raw foods is important, as is letting any visitors know that if they have even been in contact with sick people, let alone being sick themselves, then they can visit some other time.

Next oncologist review "between sessions" is set for Wednesday and I'm hoping we will have a good plan to win the second half of Part 1 of my treatment.  Again, I'm very pleased with the way things are going...the chemo drugs are working and I'm not suffering greatly in any way from the side effects.   I feel blessed that the side effects are not dragging me down and I really enjoy the days I'm feeling great – which is the vast majority of the time.

GAAGO was prime viewing this week, plus a totally harmless BBC show New Tricks (on season 4) that is funny in patches.  Vera (season 8) is on the list for next week.

Half-way there is a great feeling.  I'm not suffering much and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good to the max.

Thanks again for all the support and good wishes. 
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on February 09, 2020, 10:14:53 PM
Quote from: Ball Hopper on February 09, 2020, 10:04:17 PM
'Tis half-time!!! Completed chemo 4 from 4-6 February.   One more session starts in February (18th) and three start in March (3rd, 17th and 31st) to make up the second half...will be there in no time!

Weight loss came in at 3lbs/1.5kg, which is acceptable. 

White blood cell counts and platelets were back to normal by chemo 4 test, even if at the low end of the normal range.  Glucose levels also near normal, if a little high.  It is all balancing out, even if at the edges.

Cold sensitivity set in earlier this time, with my fingers numb as soon as I got home.  Again, better management helped me overcome it – and the toes tingling for most of the following day – warm water soaking for the fingers several times a day and wearing gloves fulltime along with super warm socks.  It is a very odd side effect.  More or less gone by late Saturday, but still keeping away from touching cold objects – might as well keep that habit full time until done with the drug that causes it.

A little bit of mouth tenderness again, but relatively mild – plenty of rinsing the mouth with salt/baking soda in warm water, along with a soft toothbrush, several times each day helps greatly.  However, appetite stayed good throughout and I think I'm keeping my strength up fairly well.

Fatigue did not hit me hard on this session, although I took afternoon naps on Thursday and Friday as the body told me I needed to do so.  Again, going to bed earlier every night (9:30pm or so) was a big help. 

Avoiding infection is top priority.  Working from home is a blessing as I avoid people all the time.  Being careful around raw foods is important, as is letting any visitors know that if they have even been in contact with sick people, let alone being sick themselves, then they can visit some other time.

Next oncologist review "between sessions" is set for Wednesday and I'm hoping we will have a good plan to win the second half of Part 1 of my treatment.  Again, I'm very pleased with the way things are going...the chemo drugs are working and I'm not suffering greatly in any way from the side effects.   I feel blessed that the side effects are not dragging me down and I really enjoy the days I'm feeling great – which is the vast majority of the time.

GAAGO was prime viewing this week, plus a totally harmless BBC show New Tricks (on season 4) that is funny in patches.  Vera (season 8) is on the list for next week.

Half-way there is a great feeling.  I'm not suffering much and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good to the max.

Thanks again for all the support and good wishes.

Inspirational BH, keep it going and all of this will be in the past before you know it, and you'll be facing into another summer and championship in great form!  Wishing you all the best over the coming treatments.
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on February 09, 2020, 10:20:04 PM
Great stuff BH, keep it going
Title: Re: Medical Status of Boardmembers
Post by: illdecide on February 10, 2020, 03:40:33 PM
Brilliant BH, fair play to you. Keep it up and the treatment will be over in no time at all, dunno if i'd be as strong as you are so hats off to ya.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on February 23, 2020, 07:34:44 PM
Into the second half now.  Completed chemo 5 from 18-20 February.   Just the three sessions in March (3rd, 17th and 31st) to go.

Weight loss came in at 5lbs/2.2 kg, which is ok...total weight loss from chemo 2 on 7 Jan is only 8 lbs/3.7 kg.  I've a feeling the second half will hit me harder than the first, but that is to be expected.

White blood cell and platelet counts still normal by chemo 5 test, even if at the low end of the normal range.  Glucose levels also nearer normal, if a little high.  It is all balancing out, even if at the edges.

Cold sensitivity set in early again with my fingers numb as soon as I got home.  Again, better management helped me overcome it – and the toes tingling for most of the following day – warm water soaking for the fingers several times a day and wearing gloves fulltime along with super warm socks.  It is a very odd side effect.  More or less gone by Sunday, but still keeping away from touching cold objects – might as well keep that habit full time until done with oxaliplatin, the drug that causes it.

A few have enquired about this cold sensitivity, so I did a little research, with the medical term being Peripheral Neuropathy:  "Peripheral Neuropathy is described as a numbness, tingling, or burning sensation in the fingers, hands, feet, or toes.  Certain chemotherapy drugs can affect your nerves in such a way that they can't communicate properly with the brain.  This miscommunication causes symptoms such as pain/burning or numbness.  You may be more prone to developing neuropathy if you have diabetes.  Oxaliplatin can cause increased sensitivity to cold only."

A little bit of mouth tenderness again, but relatively mild – plenty of rinsing the mouth with salt/baking soda in warm water, along with a soft toothbrush, several times each day helps greatly.  However, appetite stayed good throughout and I think I'm keeping my strength up fairly well.

Fatigue set in early in this session too, afternoon naps till Saturday as the body told me I needed to do so.  Expecting this to increase in March, but the solution is easy...nap time as needed.  Again, going to bed earlier every night (nearer 9pm or so most nights now) is a big help. 

Had an excellent oncologist review "between sessions" chemo 4 and 5.  Everything is going according to plan and we are getting things lined up for Part 2 of treatment...a "lighter" chemo dose and daily radiation.  Again, I'm very pleased with the way things are going...the chemo drugs are working and I'm not suffering greatly in any way from the side effects.   I feel blessed that the side effects are not dragging me down and I really enjoy the days I'm feeling great – which is the vast majority of the time.

GAAGO going full belt along with Luther season 2 on DVD.

I'll be definitely playing against the wind in the second half...hopefully I can be done before the sideways rain and sleet hit me.  I'm not suffering too much yet and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good.

Thanks again for all the support and good wishes. 
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on February 23, 2020, 07:36:37 PM
Hope all the hipsters and gout guys are surviving the winter. 

Let us know how the battles are going.

Sharing helps!!!
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on February 23, 2020, 08:02:29 PM
Hopefully the second half goes well, BH.

The side effects can't be easy dealing with, but your positive attitude with it all is fantastic.

Best of luck with future sessions and let us know how you're getting on, if you can.
Title: Re: Medical Status of Boardmembers
Post by: Lar Naparka on February 23, 2020, 10:11:32 PM
Quote from: Ball Hopper on February 23, 2020, 07:36:37 PM
Hope all the hipsters and gout guys are surviving the winter. 

Let us know how the battles are going.

Sharing helps!!!
Keep the faith, BH!
Neither hips, gout, epilepsy and God knows what else kept me away from Clones today and won't keep me pinned in next week either if I can help it.
Stay positive at all costs if you can because it positively affects your overall health and I'm talking from personal experience.
Title: Re: Medical Status of Boardmembers
Post by: Tyrdub on February 24, 2020, 08:38:40 AM
Inspirational BH, keep her flat to the mat
Title: Re: Medical Status of Boardmembers
Post by: Taylor on February 24, 2020, 08:44:14 AM
Great work BH.
An inspiration
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on February 24, 2020, 10:07:50 AM
Fair play BH, good to hear that it's going well
Title: Re: Medical Status of Boardmembers
Post by: illdecide on February 24, 2020, 10:27:02 AM
Great BH, keep er lit. I'm glad you're doing so well (under the circumstances), keep positive and keep fighting. Everyone on the Board here is singing your praises and fighting your corner.

I'll be 4 weeks this Wednesday from the Hip replacement, down to one crutch now and started the gym again. Done 30 mins on spin bike which after a shaky 5 mins at the start (stiff) surprisingly felt good. However, was stiff and sore afterwards. Back up to gym around lunchtime today for another go at it...enjoying the break away from work TBH but would be better if i was fit and well but at least i've the time off to get myself back into shape (they say round is a shape...lol). Lent diet starts on Wed so should play into my hands for the 1 stone weight loss needed for middle of May (cycling trip to Spain with the lads)
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on March 08, 2020, 09:12:13 PM
Hit the 75% complete mark on Chemo this week by completing chemo 6 from 3-5 March.   Just the two sessions in March (17th and 31st) to go.

Weight loss came in at zero this time round, which is excellent...total weight loss from chemo 2 on 7 Jan is only 8 lbs/3.7 kg.  The feeling that the second half will hit me harder than the first did not really show up this time, thankfully.

White blood cell and platelet counts still close to normal by chemo 6 test, even if at the low end of the normal range.  Glucose levels also nearer normal, if a little high.  It is all balancing out, even if at the edges.  Nurse suggests extra red meat for a platelet surge, so I'll definitely give that a go!

Cold sensitivity was basically absent this round...warmer weather on the first two days helped, plus avoiding touching anything at room temperature even.  Hopefully it will be as manageable for the last two sessions. 

A little bit of mouth tenderness again, but relatively mild – plenty of rinsing the mouth with salt/baking soda in warm water, along with a soft toothbrush, several times each day helps greatly.  However, appetite stayed good throughout and I think I'm keeping my strength up fairly well.

Fatigue was the main side effect this session, afternoon naps till Saturday as the body told me I needed to do so.  Expecting this to increase in March, but the solution is easy...nap time as needed.  Again, going to bed earlier every night (nearer 9pm or so most nights now) is a big help. 

Have oncologist review this coming week where planning for Part 2 will be discussed.  Part 2 comprises a "lighter" chemo dose delivered by pump from Monday morning till Friday afternoon for 5 weeks or so and 5 radiation sessions per week (Monday-Friday) for 28 days.  There will be different side effects for Part 2 that I will detail closer to the start date.  The clinic is only 6 miles away and the radiation sessions are less than a half hour, so it won't be a huge inconvenience.

GAAGO going full belt, but not viewing much else as naps and bedtime take priority.

The wind hasn't appeared in the second half yet...hopefully I can be done before it gets too strong and the sideways rain and sleet hit me.  I'm not suffering too much yet and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good, which are the majority of days.

I'm very surprised and grateful to feel this well as I get ready for number 7 of 8 on St. Patrick's Day.

As always, thanks again for all the support and good wishes. 
Title: Re: Medical Status of Boardmembers
Post by: Rois on March 08, 2020, 10:24:20 PM
Great to read this - I'm learning a lot from this about cancer treatment. Your attitude is brilliant - do as much as is in your control.
Title: Re: Medical Status of Boardmembers
Post by: Dinny Breen on March 11, 2020, 04:51:51 AM
Great work BH, last stretch, drive her home...r
Title: Re: Medical Status of Boardmembers
Post by: illdecide on March 11, 2020, 09:20:53 AM
Brilliant BH, almost there. Doing brilliant and an inspiration to anyone out there with similar illness. Chapeau...
Title: Re: Medical Status of Boardmembers
Post by: Taylor on March 11, 2020, 11:01:02 AM
Keep her lit BH
Title: Re: Medical Status of Boardmembers
Post by: Denn Forever on March 11, 2020, 11:18:04 AM
And times passes. an Inspiration to us all, BH.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on March 22, 2020, 10:03:07 PM
Coming down the final stretch on Part 1 of my treatment...just the final Chemo 8 session to go on March 31st.  I suppose everyone is or should be understanding what a task it is in trying to maintain self-isolation in the world we now live in...I got a head start on it anyway. Very important to keep with the plan, no matter how boring it is.

It was a different way to spend St. Patrick's Day for certain...infusion clinic had new rules on visitors and had deferred some procedures and treatments deemed not critical...thankfully mine went ahead on schedule.

Weight loss came in at one pound even this time round, which is excellent...total weight loss from chemo 2 on 7 Jan is now 9 lbs/4 kg total.  Chemo 6 was very easy on me, but this one was back to being a little harsher than Chemo 5.  Cold sensitivity and mouth tenderness were a bit stronger and harsher on me...but still manageable.  Fatigue hit me a lot harder than before, but the answer there is very easy with daily naps up to Saturday before feeling better and an even earlier bedtime and later getting up.

White blood cell and platelet counts closer to normal by chemo 7 test, which was good.  Glucose levels also nearer normal, if a little high.  It is all balancing out, even if at the edges.  Diet is holding up well with no loss of appetite.

Part 2 planning will start with a CT scan on 7 April and we'll take it from there depending on the results.

TV and DVD viewing taking a hit with no GAAGO or sports of any form and library closed.   Comfort from cooking shows is about as good as it gets, plus some online viewing (The Irishman up next).

My sole goal at this time is to be healthy enough for Chemo 8...I don't need any postponement of the last treatment.  I'll be going full on to keep blood levels up by having a good, balanced diet and get some walking done...this was achieved last week by mowing the lawn!  I'm not suffering too much yet and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good, which are the majority of days.

I'm very surprised and grateful to feel this well as I get ready for number 8 on 31 March.  I'll be very happy to return the pump on 2 April to signal the end of Part 1 of my treatment.

Thanks again for all the support and good wishes. 
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on April 09, 2020, 01:52:46 AM
Completed the final Chemo session last week with pump returned on 2 April.

This one hit me hardest of all...extreme fatigue for over a week, super sensitive to cold, and mouth/tongue more delicate as well.

Clinic rules changed from one visitor allowed subject to temperature being normal on Tuesday to visitor requested to stay in the car or in hallway of clinic while observing safe distancing on Thursday.

Weight loss came in at almost 5 pounds (2+ kg) this time round, which gives a total weight loss from chemo 2 on 7 Jan of 14 pounds/6 kg.  Overall, that is acceptable.

White blood cell and platelet counts very close to normal on chemo 8 test, which was excellent.  Glucose levels went higher though, indicative of diet not being strictly followed – but the good stuff helped platelets and white blood cell count, so I'm calling it a good trade-off. 

Part 2 started with a CT scan on 7 April and we'll take it from there next week depending on the results.

No extra TV/DVD viewing due to earlier bedtimes.

I'll have a few weeks before Part 2 (lighter chemo + daily radiation) starts so I'll be going full on to get strength back and put on a few pounds/kg over the Easter season.  I'm not suffering that much yet and am eating well, not much more I can do but face each day with a good attitude and continue to enjoy the days I'm feeling good, which are the majority of days.

I'm very surprised and grateful to feel this well as I get ready for Part 2.  There will be a few weeks of the 5 where I'll have a struggle, but three weeks of a battle over the six months of Parts 1 and 2 will be a small price to pay.

Next update will be a week after Part 2 starts, which will be towards the end of April.  Thanks again for all the support and good wishes. 
Title: Re: Medical Status of Boardmembers
Post by: Hound on April 09, 2020, 07:38:24 AM
Great stuff Ball Hopper. Inspiring the way you are dealing with this.

You've mentioned Gaago a few times. Does that mean you are outside Ireland? Where does your treatment take place?
Title: Re: Medical Status of Boardmembers
Post by: illdecide on April 09, 2020, 09:32:24 AM
Brilliant news BH, glad you're doing well. Keep us informed of your progress and stay safe from that virus with your immune system prob lower than normal...Well done and fair play to you.
Title: Re: Medical Status of Boardmembers
Post by: johnnycool on April 09, 2020, 10:10:51 AM
Good stuff Ball Hopper.

wishing you all the best.
Title: Re: Medical Status of Boardmembers
Post by: Taylor on April 09, 2020, 10:13:19 AM
Vital time for you now BH - keep your guard up and stay safe
Title: Re: Medical Status of Boardmembers
Post by: tintin25 on April 16, 2020, 08:15:54 AM
Hi, anyone ever had GERD before?  Any timescale for when it passes?
Title: Re: Medical Status of Boardmembers
Post by: Jell 0 Biafra on April 17, 2020, 04:03:47 AM
You probably don't want to hear this, but it varies.

If you haven't already, try over the counter anatcids. 

If bloating is a contributing factor, you might try using activated charcoal. I've had good results with that (it absorbs gas and toxins from your system--don't take it at the same time as any other internal meds you take, or it will absorb them too).

If your symptoms persist, you might need a proton pump inhibitor med. 

https://www.healthline.com/health/gerd/proton-pump-inhibitors#1 (https://www.healthline.com/health/gerd/proton-pump-inhibitors#1)

Here in the states the main brand is prilosec, not sure what it is called in Ireland.  I used it for a while and it helped.  Didn't like the idea of being on it every day though, so I switched to Zantac.  Turns out there's a cancer issue with Zantac, so they've stopped selling that here.

The other thing you can do is look at your diet.  Cut out acidic and/or rich foods and see if that helps.

Good luck with it.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on April 26, 2020, 10:19:30 PM
Part 2 began last Wednesday, 22 April.  Changes to clinic rules means I'll have the lighter chemo dose spread over 7 days, rather than 4.  The dose is 60% of the 5-FU in Part 1 and is spread over 168 hours in Part 2 as against 46 hours in Part 1.  No pre-meds given in Part 2 as side effects not expected at all. 

Originally, I was scheduled to get the pump on Mondays and return it on Fridays.  In order to protect clinic staff better, I was switched to a 7-day infusion, meaning only one visit a week to the infusion clinic rather than two.  It being safer for the staff is very important and the inconvenience of wearing the pump for 7 days rather than 4 is OK with me.

The radiation schedule is Mon-Fri every week for 25 sessions.  I'll finish up on 27 May if I don't miss any sessions – temperature is taken at the door and if 100F or above treatment is cancelled and you're sent home.

Weight gain came in at 5 pounds (2+ kg) this time round, which gives a total weight loss from chemo 2 on 7 Jan of 8 pounds/3.5 kg.  Good to put a few pounds on as I'll expect to lose some toward the end of May.

All blood tests that are important are back above the normal person's low threshold which was excellent news.  Glucose levels better as well, but still high, well above normal high levels.

Part 2 started with a CT scan on 7 April which showed chemo was well received with reductions in all growths...one was 20% of its original size.   Another CT Sim was used to map the radiation area and transfer that image to the radiation machine.

After about 10 of the 25 treatments I'll be expecting diarrhea/dehydration/extreme fatigue.  This will last about 3 to 4 weeks I'm told and can be severe or reasonably light.  I'll prepare for that as best I can with diet and early use of medication – no point in waiting for it to show up before taking some preventative steps.

Will update again in two weeks...which will be after 13 of the 25 radiation sessions...just over half way. 

Thanks again for all the notes and words of encouragement.



Here is some info on the radiation process that will help understand it better...disclaimer re accuracy included here... 

Intensity-Modulated Radiation Therapy (IMRT)

IMRT uses high energy x-rays (photons) or a stream of particles. When radiation is used at high doses – much higher than the amount used to obtain x-ray images – it can destroy abnormal cells that cause cancer. It does this by damaging the cell's DNA, which eventually causes the cell to die.
Because of the importance of treating the cancer but sparing healthy tissue, correct patient positions for radiation exposure are determined for accurate, effective therapeutic results. My skin was marked with permanent ink (three dots with tattoo ink – one on each hip and one a few inches below the belly button). Custom-made lead shields are used to protect healthy organs from the radiation, or the radiation fields may be shaped for your situation with special blocks inside the radiation machine.

Linear Accelerator


A medical linear accelerator (LINAC) generates the photons, or x-rays, used in IMRT. It customizes high energy x-rays or electrons to conform to a tumor's shape and destroy cancer cells while sparing surrounding normal tissue. The linear accelerator uses microwave technology (similar to that used for radar) to accelerate electrons in a part of the accelerator called the "wave guide," then allows these electrons to collide with a heavy metal target to produce high-energy x-rays. These high energy x-rays are shaped as they exit the machine to conform to the shape of the patient's tumor and the customized beam is directed to the patient's tumor. The beam is usually shaped by a multi-leaf collimator that is incorporated into the head of the machine. The beam comes out of a part of the accelerator called a gantry, which can be rotated around the patient. Radiation can be delivered to the tumor from many angles by rotating the gantry. These treatments can be designed in such a way that they destroy the cancer cells while sparing the surrounding normal tissue.

I got a form-fitted leg template which is used at the beginning – once my feet are against the end plate, they can adjust my pelvic area left or right to line up with the gantry.  I lie on my back for the entire session and the treatment table never moves.

I get radiation from 9 different angles, which helps the skin as each area gets only 11% of the total dose.  The angles are roughly 40 degrees apart, and 9 make up the full circle of 360 around me as the gantry moves all around me.

The entire radiation session each day is less than 10 minutes on the table and is completely pain-free.  I'm fortunate to live only 6 miles from the clinic, some travel a long distance for such treatment.  The radiation sessions are in the same building as the chemo infusion people, so any problems I have with the pump can be addressed between sessions if need be.

Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on April 26, 2020, 10:28:06 PM
So information and with my dad just recently been given bad news this has been a great view into what he may have to go through.

Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on April 27, 2020, 03:28:51 AM
Hang in there MR2...our thoughts are with you and your family.
Title: Re: Medical Status of Boardmembers
Post by: illdecide on April 27, 2020, 10:05:43 AM
Quote from: Ball Hopper on April 27, 2020, 03:28:51 AM
Hang in there MR2...our thoughts are with you and your family.

Well said BH...Stay strong men and fight this terrible disease. Hope everything works out
Title: Re: Medical Status of Boardmembers
Post by: armaghniac on April 27, 2020, 06:13:55 PM

QuoteI get radiation from 9 different angles, which helps the skin as each area gets only 11% of the total dose.  The angles are roughly 40 degrees apart, and 9 make up the full circle of 360 around me as the gantry moves all around me.

This is the trick, the point at which they focus the radiation gets the full dose while the area around it gets one ninth of that dose.
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on April 27, 2020, 08:15:12 PM
Good luck BH (and MR2), cancer treatment is a seriously long and difficult journey
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on May 10, 2020, 11:48:55 PM
Part 2 (radiation and lighter chemo) is over half-way done - reached 52% on Friday last, 8 May, with 13 of 25 sessions complete. 

The great news is that I've avoided side effects so far...the dreaded diarrhea/dehydration/extreme fatigue cycle is being kept distant by a combination of diet and over the counter medication.  So far, I'm only taking half of the max dose on the OTC meds, so there is room for increasing the resistance as the attacks become stronger. 

If symptoms start appearing, prescription meds will be brought into the battle.  I have 5 treatments this week and 5 next week, followed by two treatments on 26 and 27 May to complete Part 2.  If I can get even one more week without side effects, I'll consider myself most fortunate.  Have two or even three weeks of severe discomfort will be a small price to pay over what is now 6 months of treatment.

Weight is now 12lbs/5kg below the baseline of chemo 2 on 7 Jan.  Side effects could cause a few more pounds to be shed, but I'll have all of June to put it back on.

All blood tests that are important are still above the normal person's low threshold which is excellent news.  Glucose levels continue to drop toward normal high levels.

They say the BRAT diet (Bananas, Rice, Applesauce, Toast) helps cure diarrhea...even in infants (so you new Moms and Dads take heed), although I fail to see how a normal serving of applesauce helps.  I'm taking all these hoping they might also have preventative properties.  I'm also aware that my glucose meds occasionally cause mild constipation, so I've added an extra pill each day, again hoping that getting a little constipated might help prevent diarrhea...but who knows if that is true.

It is also approaching the time to start enquiries about what the medic's plan has for me in June as I start preparation for surgery (initial plan has surgery about 4 weeks after radiation ends).  What scans/tests are needed and at what stage of the month...the week after radiation or the week before surgery?  How many meetings with the surgeon are needed?  What can I do to be as well prepared as possible?  What are the criteria to leave hospital?  And details on the colo-bag...maintenance plan and how long will I need it.  No doubt, I'll have more questions and will develop plans to best anticipate and tackle the new challenges.

In any case, I'm delighted to start the second half of Part 2 without the side effects.  I'll take every day without the side effects with deep gratitude and good spirits.  I'll update again in 2 weeks, Sunday 24 May.

Thanks again for all the good wishes.


Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on May 11, 2020, 12:30:26 AM
Good luck once again BH goin thro all this in the midst of all the craziness
Title: Re: Medical Status of Boardmembers
Post by: Square Ball on May 11, 2020, 08:28:01 PM
Quote from: quit yo jibbajabba on May 11, 2020, 12:30:26 AM
Good luck once again BH goin thro all this in the midst of all the craziness
+1
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on May 11, 2020, 10:21:28 PM
Sounds like you're doing great BH, considering how tough it is. Keep it up
Title: Re: Medical Status of Boardmembers
Post by: illdecide on May 12, 2020, 09:16:09 AM
Well done BH, great to hear some positive news during this difficult time. Just keep giving us the positive and good news.
Title: Re: Medical Status of Boardmembers
Post by: Ambrose on May 15, 2020, 08:48:42 PM
Inspirational stuff BH, keep it up.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on May 25, 2020, 03:13:01 AM
Part 2 finishes with 2 radiation sessions this coming week (26 and 27 May), as does lighter chemo treatment.  It went really quickly and was easy enough on me for the most part.  Daily sessions had me averaging about an hour from leaving home to back in the door...the sessions were 15 minutes max in the treatment room, and usually under 10.

Weight gain summary: from chemo 2 to start of radiation I lost 9 lbs/ 4 kg.  Since start of radiation on 22 April I have lost another 6 lbs/2.7 kg.  I'll probably be down another 2lbs/1 kg this week, but overall the weight loss has not been drastic.  I'll probably put a few back on between radiation ending and surgery.

All blood tests that are important are back above the normal person's low threshold which was excellent news.  Glucose levels better as well, but still high, well above normal high levels.

As expected, diarrhea/dehydration/extreme fatigue kicked in after session 10.  Started OTC meds immediately and moved on to prescription meds after session 13.  I'm glad to report that the meds and a balanced diet meant that, once again, I was fortunate to avoid severe side effects.  A reasonable measure is how often one is up at night for bathroom attendance.  2 visits in any night is the most I've had thus far and I'm currently on five nights in a row with zero. 

The side effects may last a few weeks after radiation ends, but will ease almost daily with continued meds over diminishing doses (it seems it's a very bad idea to stop these meds suddenly).  As you might guess, I'm very happy with minimal bathroom visits. 

Over the next few weeks I'll be getting info on Part 3, surgery.  No specific dates have been set for either the surgery or the necessary scans and meetings beforehand.  I'll have a list of questions to help me prepare better and hopefully there will be no surprises from the scans.

Will update again in mid-June when Part 3 plans can be discussed. 

Thanks again for all the notes and words of encouragement.




Title: Re: Medical Status of Boardmembers
Post by: omochain on May 25, 2020, 03:42:01 AM
Fair play to you man ... you are handle this with a lot of openness, honesty, strength and dignity.. the best of luck with the rest of the journey. I am with you all the way.. and good fortune to you and yours
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on May 25, 2020, 10:12:07 AM
All of these posts are encouraging and fill me with dread equally! Your strength is immense and outlook is positive. I've read each post several times to try and prepare in my head the path that my dad may have to take, I know these things can be different for different types of cancers but I'll know more on Wednesday when I take my dad to the consultant in the Royal.

Keep us updated as you progress BH
Title: Re: Medical Status of Boardmembers
Post by: illdecide on May 25, 2020, 10:21:38 AM
Quote from: omochain on May 25, 2020, 03:42:01 AM
Fair play to you man ... you are handle this with a lot of openness, honesty, strength and dignity.. the best of luck with the rest of the journey. I am with you all the way.. and good fortune to you and yours

+1 Top man BH
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on May 28, 2020, 12:11:23 AM
Continued good luck BH, you're flying it
Title: Re: Medical Status of Boardmembers
Post by: rosnarun on May 28, 2020, 12:05:42 PM
Thanks for all the updates BH. I hope they are helping you too and educating the rest of  us though many have been thought the same battle with loved ones.
as for Mr2 ive been there all you can do is support your father and try not look too far ahead , and Trust  medics to  take control of the disease
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on June 26, 2020, 02:10:20 AM
Part 2 finished on 27 May as did lighter chemo treatment.  It went really quickly and was easy enough on me for the most part. 

All blood tests that are important are back above the normal person's low threshold which was excellent news.  Glucose levels better as well, but still slightly above normal high levels.

Putting on a bit of weight these weeks and even got to enjoy a few glasses of wine and cider as well as breaking in a new grill over Father's Day weekend.

Diarrhea/dehydration/extreme fatigue faded completely after about a week with continued prescription meds on diminishing doses.  Everything back to normal now, although an odd day mightn't be as good as others as I continue "cooling down" after radiation.

As I finished the meds, the peripheral neuropathy returned...initially numbness and tingling in all 10 fingers and both feet tingly a few days later.  I'm inclined to be unaware of lighter objects in my hands...especially if focused on a task using the other hand...resulting in some dropped objects.  As I get closer to a month after the end of Part 2, I think the numbness is disappearing a bit, leading to the tingly feeling being more pronounced.  I'm told that significant improvement usually occurs within 4-6 weeks of onset, with it not disappearing completely for up to a year in some cases!

Next up is Part 3 – Surgery.  To prepare for this I'll have MRI and CT scans in the second week of July.  The surgery team will then plan for an early to mid-August operating date (my earlier notes were off by a month or so).  There will be meetings with the surgeon in mid-July when I'll have the opportunity to get the plan and raise all my questions and concerns that, once addressed, will allow me to face the surgery in as good a position as possible. 

Overall, I'm feeling great (outside of the fingers issue) and enjoying the return of sports on TV.  The local library has reopened so my DVD rental spree has returned as well.

Will update again in mid-July when Part 3 plans will be a lot firmer. 

Thanks again for all the notes and words of encouragement.




Title: Re: Medical Status of Boardmembers
Post by: Taylor on June 26, 2020, 08:38:11 AM
Good work BH - keep at it
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on June 26, 2020, 09:54:40 AM
Fair play, BH.

Your positivity has been great throughout your journey. Keep it up.

PS. I didn't know libraries were back opened?
Title: Re: Medical Status of Boardmembers
Post by: Rois on June 26, 2020, 12:28:14 PM
Brilliant BallHopper, glad to hear it is all going as well as it can do. 
Title: Re: Medical Status of Boardmembers
Post by: Denn Forever on June 26, 2020, 12:33:36 PM
A Beacon of reslience as always.  Always good to read to keep you grounded.
Title: Re: Medical Status of Boardmembers
Post by: J70 on June 26, 2020, 01:08:26 PM
Best of luck BH!
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on June 26, 2020, 02:00:15 PM
Good man Mr Hopper !
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on June 28, 2020, 12:42:17 AM
Great stuff BH, continued good luck with it all
Title: Re: Medical Status of Boardmembers
Post by: omochain on June 28, 2020, 04:13:47 AM
Ballhopper, Delighted to hear that all is moving forward positively. Good luck with the coming weeks and your upcoming surgery.
Title: Re: Medical Status of Boardmembers
Post by: Oraisteach on June 28, 2020, 08:38:02 PM
Good man, BallHopper
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on July 12, 2020, 11:15:07 PM

Great News...the MRI and CT scans in the second week of July produced outstanding results! 

The sentences that made the best reading were:

"Patient's known primary malignancy is not measurable on the current examination" (from CT report)

and

"Near complete treatment response" (from the MRI report). 

All that was picked up was scarring and slight swelling that result from the radiation...and nothing else.

We will still proceed with surgery (scheduled for 5 August) to clear out the areas of concern of any deeper rogue cells plus some lymph nodes.  I will have an ileostomy bag for 2 months after the surgery (till early October).

Weight up 8 pounds/3+ kg from the end of radiation to right where I need it to be.  Glucose levels continuing to drop as well.

I will update again the week before surgery.

As you can imagine, I'm delighted with the scan results that resulted from an obviously excellent treatment plan.  Focus now turns to preparing for a much less concerning surgery in just over three weeks' time.

Thanks again for all the notes and words of encouragement.




Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on July 12, 2020, 11:34:27 PM
That's class BH. Fantastic news!
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on July 12, 2020, 11:36:21 PM
Great to hear BH!!!
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on July 13, 2020, 12:16:30 AM
Fantastic news BH.
Title: Re: Medical Status of Boardmembers
Post by: whitey on July 13, 2020, 12:28:01 AM
Quote from: Ball Hopper on July 12, 2020, 11:15:07 PM

Great News...the MRI and CT scans in the second week of July produced outstanding results! 

The sentences that made the best reading were:

"Patient's known primary malignancy is not measurable on the current examination" (from CT report)

and

"Near complete treatment response" (from the MRI report). 

All that was picked up was scarring and slight swelling that result from the radiation...and nothing else.

We will still proceed with surgery (scheduled for 5 August) to clear out the areas of concern of any deeper rogue cells plus some lymph nodes.  I will have an ileostomy bag for 2 months after the surgery (till early October).

Weight up 8 pounds/3+ kg from the end of radiation to right where I need it to be.  Glucose levels continuing to drop as well.

I will update again the week before surgery.

As you can imagine, I'm delighted with the scan results that resulted from an obviously excellent treatment plan.  Focus now turns to preparing for a much less concerning surgery in just over three weeks' time.

Thanks again for all the notes and words of encouragement.

Made my day reading this. Currently have 2 buddies fighting the battle
Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on July 13, 2020, 12:31:16 AM
Great stuff BallHopper
Title: Re: Medical Status of Boardmembers
Post by: Never beat the deeler on July 13, 2020, 12:53:16 AM
That's great to hear BH, keep her lit.

I'm always glad to see this thread back up near the top to read your latest update - it has been illuminating.
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on July 13, 2020, 01:11:53 AM
Superb news BH, keep truckin, you'll be having one hell of a celebration later this year!
Title: Re: Medical Status of Boardmembers
Post by: Taylor on July 13, 2020, 07:58:45 AM
Hell of a result BH - well done
Title: Re: Medical Status of Boardmembers
Post by: illdecide on July 13, 2020, 10:08:33 AM
Brilliant news BH and fair play to you. If anyone has cancer and reads your posts they could not be anything but positive and you're an inspiration. Good man...C'mon the Kingdom ;)
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on July 13, 2020, 08:26:39 PM
Great hear that news BH
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on July 13, 2020, 09:14:51 PM
This stuff is inspirational...

I've been chatting to ball hopper during this and the one thing everyone needs to do is get screened regularly if you are of a certain age or more importantly if there's history of a cancer in your families.

You need to follow up things that are different (health wise) as some cancers don't actually give you Obvious indications.

On a personal note I'd love to have pushed my dad when certain things started to change, questions were asked at the time but never followed up. What I wouldn't do for a time machine now

During this lockdown,  screenings may have been less but I can't fault the hospitals for their efforts. Just hope things can get back to the standard of testing/screening it was before lockdown.

Keep us posted BH
Title: Re: Medical Status of Boardmembers
Post by: laoislad on July 13, 2020, 09:20:45 PM
Excellent news BallHopper.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on July 27, 2020, 02:17:39 AM
Hi all,

Weight back up to same level as on 2 Jan this year, although I'm sure I'll lose some or most of that 10 pounds/4.5 kg over the next few months.  Glucose levels very close to the upper limit of normal now, which is pleasing.

For my 5 August surgery, this week will see me have pre-op meetings, as well as a Covid-19 test, after which I must self-isolate until going into the hospital.  Items of importance in these meetings will include training on the care and maintenance of the ileostomy bag, which I will have for about 8 weeks after surgery, plus what diet and exercise guidelines will lead to better outcomes.  I expect to leave the hospital within a week...with a 3-night stay very possible if everything goes smoothly.

Hopefully, I will have a brief update from home around 9-12 August to let everyone know how it went.

Thanks again for all the good wishes...I've added a little piece below on my surgical procedure, Robotic Low Anterior Resection (LAR) purely for educational/informational purposes.  If I knew how to phrase them, I'd insert a bunch of medical and legal disclaimers here.


Robotic Low Anterior Resection (LAR) using Intuitive Surgical (ISRG)'s "da Vinci" equipment/system.

In a traditional open surgery approach, the surgeon uses a large single incision to perform the surgery.  In laparoscopic surgery, the surgeon makes several small incisions into which he or she inserts small surgical tools and a camera. The camera allows the surgeon to see inside the body to perform the surgery.  The surgeon stands beside the patient and manipulates the tools and camera manually.  However, there are some limitations to laparoscopic surgery such as 2D images and tools that offer a limited range of motion, which can make it difficult for the surgeon to work in small spaces.

Robotic surgery is similar to laparoscopic surgery in the respect that they both use small incisions, a camera, and surgical instruments.  Both are minimally invasive surgery techniques having similar benefits, such as less blood loss, reduced pain, smaller scars, shorter stay in the hospital, and faster recovery times.   
However, instead of holding and manipulating the surgical instruments his or herself, during robotic surgery, the surgeon will sit at a computer console and use foot and hand controls to manipulate the robot. The console provides the surgeon with high-definition, magnified 3D images, which allow for increased accuracy and vision inside the body. Compared to traditional or laparoscopic surgery, robotic surgery provides the surgeon with a greater range of motion and precision, which usually leads to less bleeding and post-operative pain.

I have attached a short YouTube video of the Robotic LAR surgery.  The patient in the video had the exact same cancer and treatment as I've had as outlined in the second slide - even as far as the same chemo cocktail recipe and an identical chemo/radiation course.  Pause the video at 18 seconds to see what the surgical set-up looks like from the outside – I think it's a really cool photograph.  The rest of the video shows views from inside the body and, while interesting, doesn't really add much for the non-medical person.

The video is safe to view, but probably advisable to do so discreetly at home if fellow workers (or children) may become alarmed as they walk past and catch a glimpse of your screen! 

Any surgery with less stitches and less pain, together with a shorter recovery time than traditional "open cut" procedures, is very acceptable in my book. 

I think most will view this video with a sense of awe...I know I did.

https://www.youtube.com/watch?v=qBMnNCk6mG4
Title: Re: Medical Status of Boardmembers
Post by: Rois on July 27, 2020, 09:47:48 AM
Robots are amazing - my brother in law works with a robot in urology on cancer patients (not quite LAR surgery but in similar area - prostate cancer).

The Belfast Trust has a robot but it is grossly under-used as there's not enough doctors with the experience to use it.  Meanwhile, my BIL commutes to Edinburgh to use their robot on their patients despite being willing to work here in the north...madness.

Best of luck with it. 
Title: Re: Medical Status of Boardmembers
Post by: magpie seanie on July 27, 2020, 01:16:27 PM
Good man BH....best of luck with the surgery.
Title: Re: Medical Status of Boardmembers
Post by: Taylor on July 27, 2020, 01:37:33 PM
Best wishes BH
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on July 27, 2020, 02:44:45 PM
Good luck BH!!!!!!!!!!!!!!
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on August 10, 2020, 08:07:59 PM
Still in the hospital folks.  Issues with low blood pressure after a lot longer surgery than expected - it was just under eight and a half hours. 

Things much improved today.

I expect to be home by the weekend though and will update when I can.

Title: Re: Medical Status of Boardmembers
Post by: Aristo 60 on August 10, 2020, 08:28:13 PM
That sounds like back to back marathons there kid  :)

Keep her lit and best of luck.
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on August 10, 2020, 08:36:15 PM
All the best for the recovery BH, fair play to you!
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on August 16, 2020, 10:19:08 PM
Still under detention in hospital...a few lingering minor issues to sort out yet, but winning these little battles one by one.

Preventing dehydration will be the key going forward...won't be allowed home unless I can function without a drip. 

Will update later in the week.
Title: Re: Medical Status of Boardmembers
Post by: Never beat the deeler on August 16, 2020, 11:24:51 PM
Good man BH. Things had been going so well to date, you were always going to get this minor blip. Important to keep focusing on these minor battles as you have pointed out.

Hope you get home comfort sooner rather than later
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on August 18, 2020, 03:21:41 PM
All the best MrHopper!

Anyone any advice on dental plans for the over 49's !  ?
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on August 25, 2020, 04:55:42 AM

Part 3 Surgery arrived on schedule on August 5.  After a relatively smooth run of treatment from the beginning, this one hit me hard.

Initially I was expecting a 3-night hospital stay, but it turned into 15.  My body just would not kick-start itself again after the 8 and a half hour surgery.  We had to go step by step for each area and progress was quite slow.

Glad to report I got home on Thursday 20 August and am doing much better. 

In early October I'll return to the hospital to have the ileostomy surgery reversal and I'm hoping for a much shorter stay.

A major item within the surgery on 5 August was extensive pathology on both sites of my disease.  57 lymph nodes and several polyps were analyzed, as well as tissue from the sites.  All were negative.

I can now say, with a tear in my eye, a lump in my throat, but gladness in my heart, that I'm Cancer Free!






Title: Re: Medical Status of Boardmembers
Post by: Never beat the deeler on August 25, 2020, 07:04:51 AM
Quote from: Ball Hopper on August 25, 2020, 04:55:42 AM

Part 3 Surgery arrived on schedule on August 5.  After a relatively smooth run of treatment from the beginning, this one hit me hard.

Initially I was expecting a 3-night hospital stay, but it turned into 15.  My body just would not kick-start itself again after the 8 and a half hour surgery.  We had to go step by step for each area and progress was quite slow.

Glad to report I got home on Thursday 20 August and am doing much better. 

In early October I'll return to the hospital to have the ileostomy surgery reversal and I'm hoping for a much shorter stay.

A major item within the surgery on 5 August was extensive pathology on both sites of my disease.  57 lymph nodes and several polyps were analyzed, as well as tissue from the sites.  All were negative.

I can now say, with a tear in my eye, a lump in my throat, but gladness in my heart, that I'm Cancer Free!

Wow. Congrats, and thanks again for all you have shared. While everyone's journey with this bstrd of a disease is different, your experiences explained here will make the journey that little bit less daunting for someone starting out
Title: Re: Medical Status of Boardmembers
Post by: Rois on August 25, 2020, 07:31:21 AM
Quote from: Ball Hopper on August 25, 2020, 04:55:42 AM


I can now say, with a tear in my eye, a lump in my throat, but gladness in my heart, that I'm Cancer Free!
Absolutely awesome news. Thank you for taking us on the journey with you, I have learned so much.
Title: Re: Medical Status of Boardmembers
Post by: gerrykeegan on August 25, 2020, 07:39:13 AM
Fantastic news for you and your family.
Title: Re: Medical Status of Boardmembers
Post by: general on August 25, 2020, 07:51:19 AM
BH - Followed your illness from your first post. Inspirational does not come close.

Delighted to hear of your fantastic news - wishing you a long happy healthy life for many years ahead
Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on August 25, 2020, 07:55:17 AM
Great news BH 😊
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on August 25, 2020, 08:45:06 AM
Brilliant stuff, to be where you are now after hearing the news for the first time is just incredible..

You have raised the awareness with these updates and certainly helped anyone that's dealing with it, I'm sure your outlook on life has changed also.

This disease can strike anybody at any stage of their life, the only way to have a chance with this is to see the signs, react early and give your body a chance.
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on August 25, 2020, 09:36:03 AM
Brilliant news Ballhopper!

You're an inspiration, man!
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on August 25, 2020, 09:41:04 AM
Magic BH!!!!!!
Title: Re: Medical Status of Boardmembers
Post by: Franko on August 25, 2020, 09:51:07 AM
Absolutely brilliant.  Great news.  Thanks for sharing so eloquently with us all.  It has been both an education and an inspiration.
Title: Re: Medical Status of Boardmembers
Post by: illdecide on August 25, 2020, 11:31:43 AM
Brilliant news BH, we've all been following your treatment with nervousness and hope that you'd come out on top and thankfully you have. Really delighted for you and may you go and enjoy the rest of your life (hope it's a long one too). What good news to brighten up such a shitty dull day...C'mon the Kingdom ;)
Title: Re: Medical Status of Boardmembers
Post by: Tyrdub on August 25, 2020, 11:34:29 AM
Round of applause for BH, standing ovation even!!!!

Well done
Title: Re: Medical Status of Boardmembers
Post by: Denn Forever on August 25, 2020, 11:46:35 AM
Outstanding.
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on August 25, 2020, 01:12:39 PM
Class news BH. Generally with cancer you only hear the bad outcomes but this is fantastic to read!
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on August 25, 2020, 01:21:47 PM
Superb news BH, many congrats and enjoy!
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on August 25, 2020, 01:41:06 PM
Great news,  well done!
Title: Re: Medical Status of Boardmembers
Post by: johnnycool on August 25, 2020, 01:44:54 PM
Congratulations Ball hopper.

Be proud of yourself.
Title: Re: Medical Status of Boardmembers
Post by: oakleaflad on August 25, 2020, 02:19:33 PM
Great news! Fair play to you for documenting it all as well, no doubt this has helped to raise awareness and educate us all. Inspirational stuff!
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on August 25, 2020, 02:35:02 PM
Brilliant BH!! Well done. And thanks for sharing your story with us all too. You're a true inspiration to us all.  :)
Title: Re: Medical Status of Boardmembers
Post by: Taylor on August 25, 2020, 06:02:17 PM
Fantastic news BH - well done
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on August 26, 2020, 09:20:29 AM
Quote from: Ball Hopper on August 25, 2020, 04:55:42 AM

Part 3 Surgery arrived on schedule on August 5.  After a relatively smooth run of treatment from the beginning, this one hit me hard.

Initially I was expecting a 3-night hospital stay, but it turned into 15.  My body just would not kick-start itself again after the 8 and a half hour surgery.  We had to go step by step for each area and progress was quite slow.

Glad to report I got home on Thursday 20 August and am doing much better. 

In early October I'll return to the hospital to have the ileostomy surgery reversal and I'm hoping for a much shorter stay.

A major item within the surgery on 5 August was extensive pathology on both sites of my disease.  57 lymph nodes and several polyps were analyzed, as well as tissue from the sites.  All were negative.

I can now say, with a tear in my eye, a lump in my throat, but gladness in my heart, that I'm Cancer Free!
That's very heartwarming news BH. Congratulations.
I've followed your 'journey' throughout on here and have to say your attitude, aptitude and fortitude have been first-class and an example and inspiration to all who have to face this illness in future.
It's eleven years since I was diagnosed with it (ten since the reversal) and happily to say I've never looked back. To try to describe my feelings on hearing those two words is beyond me
I'm delighted for you and yours and wish you all a great future.
P.S.
Grandchildren are a great cure.
Title: Re: Medical Status of Boardmembers
Post by: Dinny Breen on August 26, 2020, 01:29:01 PM
Outstanding news BH. An inspiration.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on September 16, 2020, 03:18:25 AM
Well folks, my recovery is slow...very slow.

Six weeks after surgery and I've finally started to regain a few of the 30 pounds weight that I lost in the first half of August.

The surgery site has one area not healing at the same rate as the rest...remedies include waiting a month to see if it catches up and then do the ileostomy reversal surgery - or do some surgical repairs in the next few weeks which will delay the reversal surgery till December.  Either way is fine with me - the key being the reversal surgery will not take place until the surgery site is 100% ready for traffic.

Diet is good, sleep is good although the bag requires emptying every 2-3 hours, but I'm getting good restorative sleep in between, plus an afternoon nap always helps.

Overall I'm feeling pretty good at this stage, and anytime my attitude begins to weaken, I just have to look at the pathology report on the desk beside the computer that says I'm cancer free - amazing how much just glancing at the report perks me up - I don't even have to read any part of it.

It would also be remiss of me not to mention Mrs. Hopper - for a person who would be almost sick watching medical shows on TV last year, she has really come through for me.  There were a few instances when the bag required unscheduled replacement, combined with a low blood pressure event (leading to me fainting in the shower) where our education was increased multiple-fold.  She came through like the Star she is and bag replacement is now almost routine.

Again, many thanks for all the support on this board - it is amazing that total strangers take the time to support me - I truly believe you all have made a big difference in keeping my outlook positive.  By the way, I got my blood group/type report finally...I smiled a little when I saw that I'm "B Positive".

I'll update again around the end of the month or first week in October, when the final path might be clearer. 



Title: Re: Medical Status of Boardmembers
Post by: Taylor on September 16, 2020, 08:02:22 AM
Fantastic news BH.

Keep fighting.

Inspiring
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on September 16, 2020, 09:23:13 AM
Always good to hear some good news BH!
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on September 16, 2020, 10:06:03 AM
Super news BH, well done and just remember you're cancer free!!!  Whilst you get support from strangers on this board, you also give inspiration to the same people.  We never know what's around the corner for each of us, it's great to see the ongoing positivity from your experience.
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on September 16, 2020, 03:09:52 PM
Quote from: balladmaker on September 16, 2020, 10:06:03 AM
Super news BH, well done and just remember you're cancer free!!!  Whilst you get support from strangers on this board, you also give inspiration to the same people.  We never know what's around the corner for each of us, it's great to see the ongoing positivity from your experience.

100%
Title: Re: Medical Status of Boardmembers
Post by: Square Ball on September 16, 2020, 06:47:56 PM
Followed your story and delighted for you and Mrs BH. As many have mentioned great to get a good news story for a change.
Title: Re: Medical Status of Boardmembers
Post by: Maurice Moss on September 16, 2020, 08:28:35 PM
Have been following your story with fingers and toes crossed. Fantastic new for you BH. Keep it up
Title: Re: Medical Status of Boardmembers
Post by: omochain on September 16, 2020, 09:46:39 PM
BH. I am delighted that all is improving well. I am looking forward to hearing that the hearing process is progressing well enough for your treatment to continued as scheduled. Thank you for sharing your experience. It has been very uplifting for me in a time when I need some good news.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on September 29, 2020, 06:30:52 AM
Quote from: Ball Hopper on September 16, 2020, 03:18:25 AM
Well folks, my recovery is slow...very slow.

Six weeks after surgery and I've finally started to regain a few of the 30 pounds weight that I lost in the first half of August.

The surgery site has one area not healing at the same rate as the rest...remedies include waiting a month to see if it catches up and then do the ileostomy reversal surgery - or do some surgical repairs in the next few weeks which will delay the reversal surgery till December.  Either way is fine with me - the key being the reversal surgery will not take place until the surgery site is 100% ready for traffic.

Diet is good, sleep is good although the bag requires emptying every 2-3 hours, but I'm getting good restorative sleep in between, plus an afternoon nap always helps.

Overall I'm feeling pretty good at this stage, and anytime my attitude begins to weaken, I just have to look at the pathology report on the desk beside the computer that says I'm cancer free - amazing how much just glancing at the report perks me up - I don't even have to read any part of it.

It would also be remiss of me not to mention Mrs. Hopper - for a person who would be almost sick watching medical shows on TV last year, she has really come through for me.  There were a few instances when the bag required unscheduled replacement, combined with a low blood pressure event (leading to me fainting in the shower) where our education was increased multiple-fold.  She came through like the Star she is and bag replacement is now almost routine.

Again, many thanks for all the support on this board - it is amazing that total strangers take the time to support me - I truly believe you all have made a big difference in keeping my outlook positive.  By the way, I got my blood group/type report finally...I smiled a little when I saw that I'm "B Positive".

I'll update again around the end of the month or first week in October, when the final path might be clearer.

Well folks, since my last update I've been healing as best I can, however slowly. 

A leak test on the site of my surgery showed a small rupture that needs attention.  The best path forward is to have some surgical repairs done in early October.  It seems up to 20% of ileostomy patients suffer this minor setback.  It's a bit like a blister on a bicycle wheel...need to reduce and eliminate it rather than seal it off with packing.

It is a small procedure conducted on an outpatient basis...in at 7am and home well before lunch.

It will take several weeks to heal, so the next leak test will be around mid-November.  If healed 100%, we can look forward to the ileostomy reversal surgery in late November...if not the repair procedure will be repeated as often as necessary, although the surgeon says it is very rare to need more than two repairs.  A second repair will put the reversal surgery very close to year's end.  I'd be happy with that even...I look forward to bidding farewell to 2020, as I'm sure most of the world does as well.

The most important thing is that the reversal surgery will not take place until I'm absolutely 100% ready for it.  The best way to describe it is that my return to full health has been deferred for a few weeks - it's still gonna happen though.

So, I'll keep the ileostomy bag for another two months minimum, which is okay with us now that we have become almost competent in managing all phases of controlling it.

Weight is coming back up...I've put back about 15 of the over 30 pounds lost in early August.  All blood levels are back to well above the low levels of normal range in all categories. 

The surgeon and oncologist are very pleased with my progress, aside from the little repair needed.  For the first time in my adult life I'm encouraged to eat more, with emphasis on protein...not a problem.

Thanks again for all the messages of support.  I'm feeling great and will update again near the end of October.
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on September 29, 2020, 06:47:56 AM
Quote from: Ball Hopper on September 29, 2020, 06:30:52 AM
Quote from: Ball Hopper on September 16, 2020, 03:18:25 AM
Well folks, my recovery is slow...very slow.

Six weeks after surgery and I've finally started to regain a few of the 30 pounds weight that I lost in the first half of August.

The surgery site has one area not healing at the same rate as the rest...remedies include waiting a month to see if it catches up and then do the ileostomy reversal surgery - or do some surgical repairs in the next few weeks which will delay the reversal surgery till December.  Either way is fine with me - the key being the reversal surgery will not take place until the surgery site is 100% ready for traffic.

Diet is good, sleep is good although the bag requires emptying every 2-3 hours, but I'm getting good restorative sleep in between, plus an afternoon nap always helps.

Overall I'm feeling pretty good at this stage, and anytime my attitude begins to weaken, I just have to look at the pathology report on the desk beside the computer that says I'm cancer free - amazing how much just glancing at the report perks me up - I don't even have to read any part of it.

It would also be remiss of me not to mention Mrs. Hopper - for a person who would be almost sick watching medical shows on TV last year, she has really come through for me.  There were a few instances when the bag required unscheduled replacement, combined with a low blood pressure event (leading to me fainting in the shower) where our education was increased multiple-fold.  She came through like the Star she is and bag replacement is now almost routine.

Again, many thanks for all the support on this board - it is amazing that total strangers take the time to support me - I truly believe you all have made a big difference in keeping my outlook positive.  By the way, I got my blood group/type report finally...I smiled a little when I saw that I'm "B Positive".

I'll update again around the end of the month or first week in October, when the final path might be clearer.

Well folks, since my last update I've been healing as best I can, however slowly. 

A leak test on the site of my surgery showed a small rupture that needs attention.  The best path forward is to have some surgical repairs done in early October.  It seems up to 20% of ileostomy patients suffer this minor setback.  It's a bit like a blister on a bicycle wheel...need to reduce and eliminate it rather than seal it off with packing.

It is a small procedure conducted on an outpatient basis...in at 7am and home well before lunch.

It will take several weeks to heal, so the next leak test will be around mid-November.  If healed 100%, we can look forward to the ileostomy reversal surgery in late November...if not the repair procedure will be repeated as often as necessary, although the surgeon says it is very rare to need more than two repairs.  A second repair will put the reversal surgery very close to year's end.  I'd be happy with that even...I look forward to bidding farewell to 2020, as I'm sure most of the world does as well.

The most important thing is that the reversal surgery will not take place until I'm absolutely 100% ready for it.  The best way to describe it is that my return to full health has been deferred for a few weeks - it's still gonna happen though.

So, I'll keep the ileostomy bag for another two months minimum, which is okay with us now that we have become almost competent in managing all phases of controlling it.

Weight is coming back up...I've put back about 15 of the over 30 pounds lost in early August.  All blood levels are back to well above the low levels of normal range in all categories. 

The surgeon and oncologist are very pleased with my progress, aside from the little repair needed.  For the first time in my adult life I'm encouraged to eat more, with emphasis on protein...not a problem.

Thanks again for all the messages of support.  I'm feeling great and will update again near the end of October.
KRO BH. Great news.
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on September 29, 2020, 06:54:31 AM
Quote from: Ball Hopper on September 29, 2020, 06:30:52 AM
Quote from: Ball Hopper on September 16, 2020, 03:18:25 AM
Well folks, my recovery is slow...very slow.

Six weeks after surgery and I've finally started to regain a few of the 30 pounds weight that I lost in the first half of August.

The surgery site has one area not healing at the same rate as the rest...remedies include waiting a month to see if it catches up and then do the ileostomy reversal surgery - or do some surgical repairs in the next few weeks which will delay the reversal surgery till December.  Either way is fine with me - the key being the reversal surgery will not take place until the surgery site is 100% ready for traffic.

Diet is good, sleep is good although the bag requires emptying every 2-3 hours, but I'm getting good restorative sleep in between, plus an afternoon nap always helps.

Overall I'm feeling pretty good at this stage, and anytime my attitude begins to weaken, I just have to look at the pathology report on the desk beside the computer that says I'm cancer free - amazing how much just glancing at the report perks me up - I don't even have to read any part of it.

It would also be remiss of me not to mention Mrs. Hopper - for a person who would be almost sick watching medical shows on TV last year, she has really come through for me.  There were a few instances when the bag required unscheduled replacement, combined with a low blood pressure event (leading to me fainting in the shower) where our education was increased multiple-fold.  She came through like the Star she is and bag replacement is now almost routine.

Again, many thanks for all the support on this board - it is amazing that total strangers take the time to support me - I truly believe you all have made a big difference in keeping my outlook positive.  By the way, I got my blood group/type report finally...I smiled a little when I saw that I'm "B Positive".

I'll update again around the end of the month or first week in October, when the final path might be clearer.

Well folks, since my last update I've been healing as best I can, however slowly. 

A leak test on the site of my surgery showed a small rupture that needs attention.  The best path forward is to have some surgical repairs done in early October.  It seems up to 20% of ileostomy patients suffer this minor setback.  It's a bit like a blister on a bicycle wheel...need to reduce and eliminate it rather than seal it off with packing.

It is a small procedure conducted on an outpatient basis...in at 7am and home well before lunch.

It will take several weeks to heal, so the next leak test will be around mid-November.  If healed 100%, we can look forward to the ileostomy reversal surgery in late November...if not the repair procedure will be repeated as often as necessary, although the surgeon says it is very rare to need more than two repairs.  A second repair will put the reversal surgery very close to year's end.  I'd be happy with that even...I look forward to bidding farewell to 2020, as I'm sure most of the world does as well.

The most important thing is that the reversal surgery will not take place until I'm absolutely 100% ready for it.  The best way to describe it is that my return to full health has been deferred for a few weeks - it's still gonna happen though.

So, I'll keep the ileostomy bag for another two months minimum, which is okay with us now that we have become almost competent in managing all phases of controlling it.

Weight is coming back up...I've put back about 15 of the over 30 pounds lost in early August.  All blood levels are back to well above the low levels of normal range in all categories. 

The surgeon and oncologist are very pleased with my progress, aside from the little repair needed.  For the first time in my adult life I'm encouraged to eat more, with emphasis on protein...not a problem.

Thanks again for all the messages of support.  I'm feeling great and will update again near the end of October.

Great news BH.
KRO.
Title: Re: Medical Status of Boardmembers
Post by: Taylor on September 29, 2020, 10:00:16 AM
Quote from: Ball Hopper on September 29, 2020, 06:30:52 AM
Quote from: Ball Hopper on September 16, 2020, 03:18:25 AM
Well folks, my recovery is slow...very slow.

Six weeks after surgery and I've finally started to regain a few of the 30 pounds weight that I lost in the first half of August.

The surgery site has one area not healing at the same rate as the rest...remedies include waiting a month to see if it catches up and then do the ileostomy reversal surgery - or do some surgical repairs in the next few weeks which will delay the reversal surgery till December.  Either way is fine with me - the key being the reversal surgery will not take place until the surgery site is 100% ready for traffic.

Diet is good, sleep is good although the bag requires emptying every 2-3 hours, but I'm getting good restorative sleep in between, plus an afternoon nap always helps.

Overall I'm feeling pretty good at this stage, and anytime my attitude begins to weaken, I just have to look at the pathology report on the desk beside the computer that says I'm cancer free - amazing how much just glancing at the report perks me up - I don't even have to read any part of it.

It would also be remiss of me not to mention Mrs. Hopper - for a person who would be almost sick watching medical shows on TV last year, she has really come through for me.  There were a few instances when the bag required unscheduled replacement, combined with a low blood pressure event (leading to me fainting in the shower) where our education was increased multiple-fold.  She came through like the Star she is and bag replacement is now almost routine.

Again, many thanks for all the support on this board - it is amazing that total strangers take the time to support me - I truly believe you all have made a big difference in keeping my outlook positive.  By the way, I got my blood group/type report finally...I smiled a little when I saw that I'm "B Positive".

I'll update again around the end of the month or first week in October, when the final path might be clearer.

Well folks, since my last update I've been healing as best I can, however slowly. 

A leak test on the site of my surgery showed a small rupture that needs attention.  The best path forward is to have some surgical repairs done in early October.  It seems up to 20% of ileostomy patients suffer this minor setback.  It's a bit like a blister on a bicycle wheel...need to reduce and eliminate it rather than seal it off with packing.

It is a small procedure conducted on an outpatient basis...in at 7am and home well before lunch.

It will take several weeks to heal, so the next leak test will be around mid-November.  If healed 100%, we can look forward to the ileostomy reversal surgery in late November...if not the repair procedure will be repeated as often as necessary, although the surgeon says it is very rare to need more than two repairs.  A second repair will put the reversal surgery very close to year's end.  I'd be happy with that even...I look forward to bidding farewell to 2020, as I'm sure most of the world does as well.

The most important thing is that the reversal surgery will not take place until I'm absolutely 100% ready for it.  The best way to describe it is that my return to full health has been deferred for a few weeks - it's still gonna happen though.

So, I'll keep the ileostomy bag for another two months minimum, which is okay with us now that we have become almost competent in managing all phases of controlling it.

Weight is coming back up...I've put back about 15 of the over 30 pounds lost in early August.  All blood levels are back to well above the low levels of normal range in all categories. 

The surgeon and oncologist are very pleased with my progress, aside from the little repair needed.  For the first time in my adult life I'm encouraged to eat more, with emphasis on protein...not a problem.

Thanks again for all the messages of support.  I'm feeling great and will update again near the end of October.

Keep fighting BH.
An inspiration
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on October 27, 2020, 04:30:00 AM
Hi all,

Not much to report since my last September update.  Weight and blood pressure are both good – I have gained back 15 of the 30 or so pounds I lost in August and feel I am at what should be my correct weight at this time. 

No doubt, the ileostomy reversal surgery will set me back a bit, but nowhere near the last surgery.  For starters, the reversal surgery is about 90 minutes, versus the eight-and-a-half-hour marathon surgery in early August.  I'm also in better shape, just by being further along from the chemo and radiation treatments that ended in late May.

All blood tests show me well above the lower range of normal for every test, which is great news.  Glucose is coming down slowly with the 3-month test in the normal range for me.

The area where the leak showed up was repaired on 9 October under general anesthetic and I was home by 1pm.  No stitching was required, but a small drain was inserted to help close up the pouch-like area that had formed.  Along with some treatment to promote scarring in the area, which forms the seal, the surgeon felt things went very well.

The drain was removed this week and I must wait 4 weeks to allow the gap left by the drain to scar over and be watertight.  That puts the next leak test in late November and, if all goes to plan, the reversal surgery will happen in early December.
 
If there is failure on the leak test, necessary repairs will be carried out again and the reversal surgery will slip into 2021, but the surgeon is very confident that the late November leak test will be successful.

In the meantime, I'm back walking every day for about a mile and a half at the moment and will up that to two miles a day next week.  This will greatly help me be as fit as I can be for the reversal surgery which will help for a shorter hospital stay and a quicker recovery thereafter.  Plenty protein in my diet will help as well.

Again, many thanks for all your support – it really does help knowing you are all with me on this journey.

Next update should be after the leak test in late November.  Best wishes to everybody till then!

Edit: I'll continue to have the ileostomy bag until the reversal surgery.  Needs to be emptied about 8 times a day and changed out completely twice a week.  We've become so used to it over the last 3 months that I forgot to mention it here. 
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on October 27, 2020, 08:49:26 AM
Great stuff Hopper, this is one place that is so positive on this board its hard not to take huge encouragement from your experiences.

My dad had a break from the chemo for a couple of weeks, was draining him to the point that I was really worried he'd not get through the weekend...

They gave him a blood transfusion which completely changed how he was, his appetite came back the energy levels are up, colour back in his face along with an upbeat feeling in my parents house.

Keep up the work on that fitness Hopper, hopefully that walk will result in a shuffle to a run soon

Title: Re: Medical Status of Boardmembers
Post by: Taylor on October 27, 2020, 08:59:25 AM
Fantastic BH.

This is the one thread I look forward to being updated by you.

Keep at it
Title: Re: Medical Status of Boardmembers
Post by: CitySlicker11 on October 27, 2020, 09:34:18 AM
Very informative posts, an inspiration.
Title: Re: Medical Status of Boardmembers
Post by: illdecide on October 27, 2020, 11:10:45 AM
Good man BH...Chapeau to you sir
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on October 27, 2020, 12:13:31 PM
Sweet to the beat BH! Always good to hear your updates!
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on October 27, 2020, 05:48:44 PM
Well done BH, inspirational stuff!
Title: Re: Medical Status of Boardmembers
Post by: GiveItToTheShooters on October 27, 2020, 10:27:36 PM
Inspirational stuff BH! Keep er lit and take care!
Title: Re: Medical Status of Boardmembers
Post by: macdanger2 on October 27, 2020, 10:35:49 PM
Nice one BH, fair play to you
Title: Re: Medical Status of Boardmembers
Post by: trileacman on October 27, 2020, 11:35:23 PM
Congrats BH.

I amazed reading the details of your ops. As someone who works in health what can be achieved by modern medicine is actually mind-blowing.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on December 02, 2020, 06:48:51 AM
My second leak test was on Monday last, 30 November.  Unfortunately, the repairs of the first leak test proved insufficient as the second leak test showed the original leak path has not closed fully.
 
However, the leak opening is now smaller in size and the track of the leak is much thinner, described as almost wisp-like on the screen.  So progress is being made, even if at a slower than expected rate.

The surgeon said the leak could close by itself over the next year or so, but he can help it along by conducting another non-surgical procedure where a small drain will be placed at the leak opening and the area will be dealt with abrasively to promote scarring and healing.  Conducted under general anesthetic and in and out of the hospital inside half a day. This means I'll undergo another repair procedure on 9 December and the clock restarts with regards to healing and the leak path closing fully.

He says the radiation knocked the area out of commission, more or less, and is very slow to recover.  The rate is also slow due to the width of the opening among other things – imagine a large cut on your knee...the edges of skin in the middle might be a fair distance apart and will take time to grow back together.  Hence the use of stitches on occasion, but the gap in my case was not wide enough to need stitching initially, although I'll bet the surgeon might say in hindsight that stitching would have set me right in October with a successful test 2 this week rather than needing a second repair.

I'm also very slow in recovering as the early August surgery took so much out of me, with the body fighting small battles on several fronts.  Since the area from the large intestine to daylight at the rear end is not in use right now, the body doesn't need to focus on fixing anything there with any degree of urgency, which is another contributing factor to the failure of both leak tests.

We will probably give the area a third month to repair this time around, rather than the two months from the early October first leak repair, so it looks like March 2021 for the next test.  If successful, the ileostomy reversal surgery will take place within two weeks of the leak test.  It could be a Happy Easter after all.

Meanwhile, I need to continue to provide the body with the fuel sources necessary for it to do the repairs.  Plenty protein in the diet, plus add some Vitamin D which came back low in a recent test.  In addition to bone health, Vitamin D has other roles in the body, including reduction of inflammation as well as modulation of such processes as cell growth, neuromuscular and immune function, and glucose metabolism – all of which will aid in accelerating my healing process.

The ileostomy bag is part and parcel of my daily life at this stage.  I'm up two or three times a night to take care of it, so multiple alarm times are set each night as I'm sleeping so well now.  The bag only needs to be changed out about every four or five days and that is not the chore it used to be – I haven't had a leak in ages, a sign of proper placement and care.

Peripheral neuropathy is still with me, although improving every month.  Fingers are almost back to normal, but still have a tingling in them.  My left foot is still sending wrong signals to the brain – it feels like I have about 4 insoles under it and every solid surface I stand on barefoot feels like it is subzero temperature, and that includes the bathroom floor and even the shower once the hot water is turned off.  The right foot is much better, maybe a single insole added. Rubbing my bare feet on surfaces of different texture is supposed to help...things like rubbing my feet with a sock, dragging them along a carpet and also along a coarser rug...the coarser the texture the more painful it feels, but the nerves are being stimulated and will hopefully revert to normal soon.  When I'll be able to drag them along a coarse and bristly surface, like a doormat, without pain will be signal of being cured – that could take another six months or so.  I'm still taking a prescription drug for this odd and annoying, but not overly painful, condition.

Weight is staying at the same good level as last report and glucose numbers continue to fall and are now within the normal range, if only barely.  I'm walking two miles a day at about 16 minutes a mile pace and I'm feeling stronger every week...I made sure to get my walk done on the day I got the leak test result...no point in wallowing in any sort of pity as a result of a minor setback, since I know I'm going to win the war eventually.  Remember, my pathology report from August says I'm Cancer Free.

The initial disappointment of failing the second leak test has passed and I'm back on track to working hard to be ready for the next one.  In the big picture, the length of my treatment has extended from 12 months to 16 or so...almost negligible in the great scheme of things.

Once again, I thank everyone for the massive sense of support I feel, whether expressed directly or not.   It adds to my motivation when I see the replies and it helps me prove to you that, since you are on my team, I must do all I can to win this.

I'll update again before Christmas, meanwhile everyone remain safe and manage your health properly – it is priceless.

Title: Re: Medical Status of Boardmembers
Post by: bannside on December 02, 2020, 08:21:01 AM
Great stuff BallHopper. You're still going through the mixer, but it looks like your resolve is still fully intact. The worst part is over hopefully, head down and face up the rest. You'll be a new man by the summer, hopping balls for fun.
Title: Re: Medical Status of Boardmembers
Post by: Rossfan on December 02, 2020, 09:40:07 AM
Best wishes Ball Hopper 👍
Title: Re: Medical Status of Boardmembers
Post by: Denn Forever on December 02, 2020, 12:01:02 PM
Keep her lit BH. 
Title: Re: Medical Status of Boardmembers
Post by: Taylor on December 02, 2020, 12:31:59 PM
Well done BH - keep at it
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on December 02, 2020, 01:12:06 PM
Good stuff BH. Keep it going.
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on December 02, 2020, 02:00:45 PM
All the best BH. You've the hard miles done, small steps now.
Best wishes to you and yours for the season ahead.
Title: Re: Medical Status of Boardmembers
Post by: Dinny Breen on December 25, 2020, 12:27:09 AM
The best thread in 2020. Best wishes BH and happy Christmas to all board members. May 2021 be as kind as 2020 was harsh.
Title: Re: Medical Status of Boardmembers
Post by: illdecide on December 25, 2020, 01:14:20 PM
Quote from: Dinny Breen on December 25, 2020, 12:27:09 AM
The best thread in 2020. Best wishes BH and happy Christmas to all board members. May 2021 be as kind as 2020 was harsh.

Good man Dinny B...Yip there wasn't much good news in 2020 but this thread was certainly one of them hearing how well BH done coping and sharing his illness. An inspiration for sure and hope 2021 is BH's best year.
Have a good one folks and a better 2021
Title: Re: Medical Status of Boardmembers
Post by: Lotto on December 25, 2020, 05:09:46 PM
Inspirational thread, fair play Ball Hopper. Amazing stuff and all the best for 2021.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on December 25, 2020, 09:04:05 PM
Thanks to all who took the time to reply with messages of support.  You don't know how much inspiration I get from just reading the replies.  I recall reading this entire thread during some of my lowest days after the 5 August surgery and before the pathology report arrived - I'm not ashamed to say I teared up on more than one occasion as I read messages from complete strangers.

My surgery site is still not fully repaired.  As we go into 2021 we have decided to slow-play the whole thing - the surgeon says I should be ready for the next leak test in early February, but instead I'll have him do another exam at that time to see if I'm on schedule - then I'll dawdle with making the appointment for the actual test.  My best guess for the test is now first week of March, just under three months from the last procedure on 9 Dec.

Taking that extra month is no great difficulty - it just prolongs the time I'll have the bag.  The bag is little more than a minor inconvenience at this stage - we are very comfortable changing it out every five days.  Getting up 2 or 3 times a night to empty it is the only hassle - a bit like night feeding for newborns.

Anyway, early March test for me and, if successful, I'll have the reversal surgery by the end of March and finally old Humpty Dumpty will be put back together again.  Might be done and dusted with surgery and home by Easter 2021. 

It is often said the cure can be harsh and that is true for me.  My treatment lasted from mid-Dec 2019 to the end of May 2020, five and a half months.  Two months downtime to be fit enough for the major surgery to remove all areas of concern in early August will be followed by about 9 months recovery before final surgery in late March.  That shows me the strength and power of the chemo and radiation treatments.  Understanding the strength of the treatment and the concoction of medicines that I took to almost completely eliminate the side effects of such powerful treatment is coming more to my thoughts these days - I really had a good tolerance to the treatment.

Roll on 2021 and a return to full health - and don't any of you underestimate the difference this thread has made to me and my attitude.

Nothing really on the horizon till early February, so next report might not be till then.

A very Merry Christmas to all.
Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on December 25, 2020, 10:19:31 PM
Happy Christmas BH and continued good wishes to you
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on December 25, 2020, 10:21:18 PM
Merry Christmas BH. Here's to many more!
Title: Re: Medical Status of Boardmembers
Post by: laoislad on December 25, 2020, 11:08:55 PM
Happy Christmas BH glad the thread helped you. This board is great really and also helped me a few years ago when I started my own thread during a rough time for myself.
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on December 25, 2020, 11:28:13 PM
Happy Christmas BH.

You've truly been inspirational throughout your journey. Wishing you good health and happiness for 2021, and beyond.
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on December 25, 2020, 11:50:21 PM
Happy Christmas BH ... the way you carry yourself is an inspiration, well done on the massive progress so far and here's to a great 2021!
Title: Re: Medical Status of Boardmembers
Post by: bannside on December 25, 2020, 11:55:43 PM
+1. Your positive attitude BH will see you through this. For the rest of us, we dont know whats coming round the next corner or two. Keep up the good fight and hope 2021 will be a good one for you.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on February 05, 2021, 05:46:32 AM
Not much to report since Christmas.  Walking distance is now 3 miles a day - got under 50 minutes most days this past week.  Recent blood tests show everything is now up to the middle of the normal range.  Weight is steady, diet is good and overall I feel great. 

I have an appointment with the surgeon in a few weeks to determine if I'm finally repaired enough to pass the leak test.  If he has any doubt I'll postpone the test till he feels I'm almost guaranteed to pass.   If he says I'm ready to go in mid-Feb, I'll wait till the first week of March for the test anyway.

Doing the family tree research online these days...for anyone else doing it I can report lots of errors in both Church and Civil Records in the Irish genealogy website.  The quality of handwriting back in the day was almost art by some people keeping records and nothing more than chicken-scratch by others.  Some of the causes of death make interesting reading, to say the least. 

I'll update again in early March and at that time I might have a schedule for the final surgery to put me back together again.  I think I'll be ready for it in late March and even more ready to put all this behind me with a great sense of gratitude.

Thanks again for all the support - it really does mean a lot to me.

Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on February 05, 2021, 08:00:16 AM
Brilliant stuff Hopper.

After my father passed away with bowel cancer in November  my sister was having issues in that area during the time that I'd been taking dad to hospital for his appointments, as the focus was on dad she put her own thing to one side...

So after Xmas she went to see the consultant who carried out a number of checks and she had the camera put in also for a look, after that he sent her for a CS followed by a MRI, the results showed a tumour in the bowel, with everything so raw with dad it's been difficult to come to terms with. 

So surgery was set the following week, (last Thursday) operated on tumour, it was removed successfully, though we wait on the biopsy from the tumour the surgeon feels very confident on things. My sister is 45.

I suppose what I'm saying is don't leave anything for another day, any signs take take it further, if still not happy take it further again. Fingers crossed that my sister has no more dealings with this, but this seem to be something in the family, my dads two brothers passed away with similar cancers also.

As for the hospitals surgeons consultants staff nurses and doctors they are still carrying out these life saving operations, don't delay because of Covid get see before it's too late
Title: Re: Medical Status of Boardmembers
Post by: general_lee on February 05, 2021, 11:23:57 AM
Keep her lit Ballhopper you can't keep a good man down!
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on February 05, 2021, 12:38:26 PM
Keeper er lit indeed BH. Good to hear anotehr update. Milltown sorry for your loss and hope all goes well with your sister.
Title: Re: Medical Status of Boardmembers
Post by: Tyrdub on February 05, 2021, 02:47:42 PM
Quote from: Milltown Row2 on February 05, 2021, 08:00:16 AM
Brilliant stuff Hopper.

After my father passed away with bowel cancer in November  my sister was having issues in that area during the time that I'd been taking dad to hospital for his appointments, as the focus was on dad she put her own thing to one side...

So after Xmas she went to see the consultant who carried out a number of checks and she had the camera put in also for a look, after that he sent her for a CS followed by a MRI, the results showed a tumour in the bowel, with everything so raw with dad it's been difficult to come to terms with. 

So surgery was set the following week, (last Thursday) operated on tumour, it was removed successfully, though we wait on the biopsy from the tumour the surgeon feels very confident on things. My sister is 45.

I suppose what I'm saying is don't leave anything for another day, any signs take take it further, if still not happy take it further again. Fingers crossed that my sister has no more dealings with this, but this seem to be something in the family, my dads two brothers passed away with similar cancers also.

As for the hospitals surgeons consultants staff nurses and doctors they are still carrying out these life saving operations, don't delay because of Covid get see before it's too late

Sorry to hear about your sis MR, hopefully all's ok, fingers crossed
Title: Re: Medical Status of Boardmembers
Post by: J70 on February 05, 2021, 03:32:34 PM
Best of luck Ball Hopper.

And to your sister as well Milltown.
Title: Re: Medical Status of Boardmembers
Post by: omochain on February 05, 2021, 05:36:30 PM
BH, Great to hear that your recovery is proceeding well and good luck with the continued treatment.
Milltown ... hope your sister gets well soon.
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on February 05, 2021, 07:58:54 PM
MR is it a polyp or a confirmed tumour in your sister? If the former, hopefully comes back with the best news - the consultants can tell a lot about them by the look of them in the colonoscopy so if he suspects okay fingers crossed he's correct.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on February 05, 2021, 11:11:41 PM
Hopefully test results will be good MR2. 

Send her our best wishes.
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on February 06, 2021, 01:22:35 AM
Quote from: Tony Baloney on February 05, 2021, 07:58:54 PM
MR is it a polyp or a confirmed tumour in your sister? If the former, hopefully comes back with the best news - the consultants can tell a lot about them by the look of them in the colonoscopy so if he suspects okay fingers crossed he's correct.

The tumour was taken out and the polyp is to be taken out in the next 6 months
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on March 04, 2021, 01:42:49 AM
News not great this time, but not exactly bad either.

As I had two failed leak tests (October and December) at two-month intervals after my August surgery, it was decided to give it three months or so this time round to see if time was all that was needed. 

As an added precaution against the possibility of the test equipment causing some damage internally, it was decided to get an MRI instead.

For starters, the MRI showed no sign of any cancer activity, which is a great "umbrella" to have over the entire report.

What the MRI did show, however, was a space in the rectal wall where fluid is pooling and a small drainage channel to the outside of the wall.  Normal cell fluid excesses are feeding into this space.  Picture a map with a lake having a stream to the ocean, but no visible streams into it as it is fed by surface water and small drainage channels and so on.

Draining the space is not the answer, as it will merely refill again – the space must be closed completely.  To do this, a procedure called endosponge vacuum therapy is proposed. 

The attached video explains it very well.  The infection possibilities and the associated results in the early part of the video do not really apply to me as I still have my ileostomy bag and there is zero "traffic" through that area, so there is no great source of infection present.

The sponge will be replaced frequently and the treatment will continue until the space has closed fully – initial estimate is 6 weeks, but that is very much an estimate.

Once the space is closed, I'm sure a wait of some time will be proposed to make sure it doesn't redevelop and further tests will confirm if it is appropriate to proceed with the ileostomy reversal surgery.

I don't have a firm date for the start of this procedure – the initial placement will be under general anesthesia and will require an overnight stay in hospital.  As explained in the video, I'll wear a pump with a collection cartridge in a belted pouch on my waist for the duration.  Obviously, sitting will be awkward and I'm not sure if sleeping on my back is practical – I'm sure there will be alarms of some sort in the system to alert me to kinks in the hose and the collection cartridge being full, plus low battery of course.

I've no other issues at this time - the peripheral neuropathy is still with me and slowly improving, but it will take until June or so to be fully gone.  Blood tests are all good.  Weight, diet and exercise all doing well too.

I'll update again in a few weeks with a progress report.  This is just a small detour on my journey back to full health and the "umbrella" of being cancer free makes the journey reasonably easy.

Thanks again for all the support.

https://www.youtube.com/watch?v=ENzS4YSAhqk



Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on March 04, 2021, 09:45:43 AM
Small detour is the correct way to look at it BH in the grand scheme of things!
Title: Re: Medical Status of Boardmembers
Post by: grounded on March 04, 2021, 12:03:27 PM
Quote from: Ball Hopper on March 04, 2021, 01:42:49 AM
News not great this time, but not exactly bad either.

As I had two failed leak tests (October and December) at two-month intervals after my August surgery, it was decided to give it three months or so this time round to see if time was all that was needed. 

As an added precaution against the possibility of the test equipment causing some damage internally, it was decided to get an MRI instead.

For starters, the MRI showed no sign of any cancer activity, which is a great "umbrella" to have over the entire report.

What the MRI did show, however, was a space in the rectal wall where fluid is pooling and a small drainage channel to the outside of the wall.  Normal cell fluid excesses are feeding into this space.  Picture a map with a lake having a stream to the ocean, but no visible streams into it as it is fed by surface water and small drainage channels and so on.

Draining the space is not the answer, as it will merely refill again – the space must be closed completely.  To do this, a procedure called endosponge vacuum therapy is proposed. 

The attached video explains it very well.  The infection possibilities and the associated results in the early part of the video do not really apply to me as I still have my ileostomy bag and there is zero "traffic" through that area, so there is no great source of infection present.

The sponge will be replaced frequently and the treatment will continue until the space has closed fully – initial estimate is 6 weeks, but that is very much an estimate.

Once the space is closed, I'm sure a wait of some time will be proposed to make sure it doesn't redevelop and further tests will confirm if it is appropriate to proceed with the ileostomy reversal surgery.

I don't have a firm date for the start of this procedure – the initial placement will be under general anesthesia and will require an overnight stay in hospital.  As explained in the video, I'll wear a pump with a collection cartridge in a belted pouch on my waist for the duration.  Obviously, sitting will be awkward and I'm not sure if sleeping on my back is practical – I'm sure there will be alarms of some sort in the system to alert me to kinks in the hose and the collection cartridge being full, plus low battery of course.

I've no other issues at this time - the peripheral neuropathy is still with me and slowly improving, but it will take until June or so to be fully gone.  Blood tests are all good.  Weight, diet and exercise all doing well too.

I'll update again in a few weeks with a progress report.  This is just a small detour on my journey back to full health and the "umbrella" of being cancer free makes the journey reasonably easy.

Thanks again for all the support.

https://www.youtube.com/watch?v=ENzS4YSAhqk

Best wishes BH . As said above hopefully a small detour on way to full recovery
Title: Re: Medical Status of Boardmembers
Post by: trailer on March 04, 2021, 12:06:32 PM
Quote from: Ball Hopper on March 04, 2021, 01:42:49 AM
News not great this time, but not exactly bad either.

As I had two failed leak tests (October and December) at two-month intervals after my August surgery, it was decided to give it three months or so this time round to see if time was all that was needed. 

As an added precaution against the possibility of the test equipment causing some damage internally, it was decided to get an MRI instead.

For starters, the MRI showed no sign of any cancer activity, which is a great "umbrella" to have over the entire report.

What the MRI did show, however, was a space in the rectal wall where fluid is pooling and a small drainage channel to the outside of the wall.  Normal cell fluid excesses are feeding into this space.  Picture a map with a lake having a stream to the ocean, but no visible streams into it as it is fed by surface water and small drainage channels and so on.

Draining the space is not the answer, as it will merely refill again – the space must be closed completely.  To do this, a procedure called endosponge vacuum therapy is proposed. 

The attached video explains it very well.  The infection possibilities and the associated results in the early part of the video do not really apply to me as I still have my ileostomy bag and there is zero "traffic" through that area, so there is no great source of infection present.

The sponge will be replaced frequently and the treatment will continue until the space has closed fully – initial estimate is 6 weeks, but that is very much an estimate.

Once the space is closed, I'm sure a wait of some time will be proposed to make sure it doesn't redevelop and further tests will confirm if it is appropriate to proceed with the ileostomy reversal surgery.

I don't have a firm date for the start of this procedure – the initial placement will be under general anesthesia and will require an overnight stay in hospital.  As explained in the video, I'll wear a pump with a collection cartridge in a belted pouch on my waist for the duration.  Obviously, sitting will be awkward and I'm not sure if sleeping on my back is practical – I'm sure there will be alarms of some sort in the system to alert me to kinks in the hose and the collection cartridge being full, plus low battery of course.

I've no other issues at this time - the peripheral neuropathy is still with me and slowly improving, but it will take until June or so to be fully gone.  Blood tests are all good.  Weight, diet and exercise all doing well too.

I'll update again in a few weeks with a progress report.  This is just a small detour on my journey back to full health and the "umbrella" of being cancer free makes the journey reasonably easy.

Thanks again for all the support.

https://www.youtube.com/watch?v=ENzS4YSAhqk

Good luck BH
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on March 04, 2021, 06:42:56 PM
All the best BH!  As you say, a small detour on the way back to full health!!
Title: Re: Medical Status of Boardmembers
Post by: Taylor on March 05, 2021, 07:52:25 AM
You wont let this stop you BH - KEEP ER LIT
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on March 05, 2021, 09:28:15 AM
Quote from: Ball Hopper on March 04, 2021, 01:42:49 AM
News not great this time, but not exactly bad either.

As I had two failed leak tests (October and December) at two-month intervals after my August surgery, it was decided to give it three months or so this time round to see if time was all that was needed. 

As an added precaution against the possibility of the test equipment causing some damage internally, it was decided to get an MRI instead.

For starters, the MRI showed no sign of any cancer activity, which is a great "umbrella" to have over the entire report.

What the MRI did show, however, was a space in the rectal wall where fluid is pooling and a small drainage channel to the outside of the wall.  Normal cell fluid excesses are feeding into this space.  Picture a map with a lake having a stream to the ocean, but no visible streams into it as it is fed by surface water and small drainage channels and so on.

Draining the space is not the answer, as it will merely refill again – the space must be closed completely.  To do this, a procedure called endosponge vacuum therapy is proposed. 

The attached video explains it very well.  The infection possibilities and the associated results in the early part of the video do not really apply to me as I still have my ileostomy bag and there is zero "traffic" through that area, so there is no great source of infection present.

The sponge will be replaced frequently and the treatment will continue until the space has closed fully – initial estimate is 6 weeks, but that is very much an estimate.

Once the space is closed, I'm sure a wait of some time will be proposed to make sure it doesn't redevelop and further tests will confirm if it is appropriate to proceed with the ileostomy reversal surgery.

I don't have a firm date for the start of this procedure – the initial placement will be under general anesthesia and will require an overnight stay in hospital.  As explained in the video, I'll wear a pump with a collection cartridge in a belted pouch on my waist for the duration.  Obviously, sitting will be awkward and I'm not sure if sleeping on my back is practical – I'm sure there will be alarms of some sort in the system to alert me to kinks in the hose and the collection cartridge being full, plus low battery of course.

I've no other issues at this time - the peripheral neuropathy is still with me and slowly improving, but it will take until June or so to be fully gone.  Blood tests are all good.  Weight, diet and exercise all doing well too.

I'll update again in a few weeks with a progress report.  This is just a small detour on my journey back to full health and the "umbrella" of being cancer free makes the journey reasonably easy.

Thanks again for all the support.

https://www.youtube.com/watch?v=ENzS4YSAhqk

The 'engineering' medical science behind all this is just brilliant.. All the best going forward BH
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on April 29, 2021, 07:57:10 AM
Much better news this time...

On 27 April I had my fifth and final vacuum therapy session – no need for a sixth session as the space has filled in fully and there is no more to be done. 

An overnight stay was required for observation for the first placement.  There was relatively small discomfort – having the pump on a shoulder strap 24/7 was a little inconvenient (a bit more than the ileostomy bag).  The pump failed on week 3, so it was removed and I had a few days off until the next scheduled hospital procedure.

A month of further rest and recovery with no therapy will take me to next leak test at the end of May.  A successful leak test will then allow the ileotomy reversal surgery to be scheduled for some time in June.

Needless to say, I'm delighted to be finally done with this issue that first appeared in early October last year.  The surgeon says he will go straight to vacuum therapy in future cases similar to mine.  I will enjoy the month of recovery as best I can...like everybody else, I can't wait for GAA to resume.

All other health matters are doing well...the peripheral neuropathy is starting to fade.  The warmer weather is certainly helping.  Diet and sleep are both in good form as well, although the occasional afternoon nap was required lately – I'm sure being under general anesthetic every week had some sort of cumulative effect, even though the medics said it shouldn't.

I'll update again after the next leak test, but it finally looks like I'm rounding the bend and heading for the home straight...in Grand National terms I've negotiated Beecher's Brook for the final time and have just a few regular fences left – they can still be troublesome though to a tired team, so keeping up with exercise and diet will be important to keep me as fit as possible to handle the next fence.

The umbrella of "cancer free" that is over me is certainly the basis of my attitude, along with a great family and medical team.
 
As always, thanks so much for the support.  Looking back on my initial post, I had hoped for ileostomy reversal surgery in September 2020 – I'll miss that by at least 9 months, but I am so grateful to be in the shape that I'm right now.






Title: Re: Medical Status of Boardmembers
Post by: general on April 29, 2021, 08:07:51 AM
BH - Great to see the progress you have made.

You are an inspiration to all men- the stigma is not talking (about anything in general) and bottling it up. Hopefully a bit of light banter and support from the board has gave you a bit of light relief over the stages of your illness.

Wishing you nothing but the best in the future
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on April 29, 2021, 09:38:24 AM
Good stuff BH, great to hear. Always great to get positive news!
Title: Re: Medical Status of Boardmembers
Post by: laoislad on April 29, 2021, 09:39:48 AM
Good stuff BH. 💪
Title: Re: Medical Status of Boardmembers
Post by: Newbridge Exile on April 29, 2021, 09:59:04 AM
Great news BH
Title: Re: Medical Status of Boardmembers
Post by: Taylor on April 29, 2021, 11:19:00 AM
Briallint news BH.

The fight you have shown throughout this was truly inspirational
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on April 29, 2021, 07:53:00 PM
Brilliant news BH, and hopefully a better GAA summer ahead of you to enjoy!
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on May 02, 2021, 09:45:05 AM
Wonderful news BH.
How you keep track of the various procedures you've had and the ones you still have to have is very enlightening.
All the best for the future.
Title: Re: Medical Status of Boardmembers
Post by: whitey on May 02, 2021, 01:19:05 PM
Inspirational
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on June 19, 2021, 05:16:22 AM
Quote from: Ball Hopper on April 29, 2021, 07:57:10 AM
Much better news this time...

On 27 April I had my fifth and final vacuum therapy session – no need for a sixth session as the space has filled in fully and there is no more to be done. 

An overnight stay was required for observation for the first placement.  There was relatively small discomfort – having the pump on a shoulder strap 24/7 was a little inconvenient (a bit more than the ileostomy bag).  The pump failed on week 3, so it was removed and I had a few days off until the next scheduled hospital procedure.

A month of further rest and recovery with no therapy will take me to next leak test at the end of May.  A successful leak test will then allow the ileotomy reversal surgery to be scheduled for some time in June.

Needless to say, I'm delighted to be finally done with this issue that first appeared in early October last year.  The surgeon says he will go straight to vacuum therapy in future cases similar to mine.  I will enjoy the month of recovery as best I can...like everybody else, I can't wait for GAA to resume.

All other health matters are doing well...the peripheral neuropathy is starting to fade.  The warmer weather is certainly helping.  Diet and sleep are both in good form as well, although the occasional afternoon nap was required lately – I'm sure being under general anesthetic every week had some sort of cumulative effect, even though the medics said it shouldn't.

I'll update again after the next leak test, but it finally looks like I'm rounding the bend and heading for the home straight...in Grand National terms I've negotiated Beecher's Brook for the final time and have just a few regular fences left – they can still be troublesome though to a tired team, so keeping up with exercise and diet will be important to keep me as fit as possible to handle the next fence.

The umbrella of "cancer free" that is over me is certainly the basis of my attitude, along with a great family and medical team.
 
As always, thanks so much for the support.  Looking back on my initial post, I had hoped for ileostomy reversal surgery in September 2020 – I'll miss that by at least 9 months, but I am so grateful to be in the shape that I'm right now.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on June 19, 2021, 05:36:11 AM
Well folks, the news is not as good as I'd hoped. 

The pressure of the leak test was enough that a small track was noticed at the site of the previous space.  This little space measured 2 cm, versus the 5.5 cm original gap.

It seems the vacuum therapy did not close the space from the inside to the surface, but got a covering over what was left of the opening.  This covering was easily punctured during the leak/pressure test.

Consolation is taken in the much smaller space that remains.  Most of the progress was due to the vacuum therapy, but that is no longer suitable as the sponge can't really fit in the space and it is not so effective if only at the "mouth", so to speak.

So the plan to finally close it off involves placing a treated gauze over the space.  It will work like a desiccant and dry out the area which will encourage everything to come together in a more solid way, along with salts and whatever else to encourage healing.  I guess the natural wetness doesn't allow a more solid scab-like cover to form.

The gauze will be replaced every week in the surgeon's clinic and photographs will be used via flexible sigmoidoscopy to monitor progress as well.  There will be no anesthesia for any part of this procedure, with all tools and equipment inserted via the closest opening. 

Starting next week, the surgeon expects about 4 or 5 visits will be enough to close the space fully.  Another leak test will be held at that stage.

It is good that nobody is rushing the reversal surgery until I'm 100% healed internally and ready.  I'd much prefer that than going ahead now and running the risk of serious infections down the road. 

Oddly enough, I didn't feel any great disappointment in failing this leak test - I just took it as another small step to take on my journey back to full health.

Diet and exercise are doing great, all blood tests are normal and the peripheral neuropathy is fading, even if very slowly. With the warmer weather, I can actually walk barefoot on normal surfaces without any great sense of cold, although the sole of my left foot feels like there is an insole attached to half of it.  I'm not sick in any way, just waiting for a wound to heal fully. 

The month of weekly gauze placement will be up in no time at all and I'm pleased that the finish line is almost in sight, but even more pleased that I'll be back to 100% in no time really.  Thanks again for all the support - it really does mean a lot to me.  I'll update again in about a month, say mid to end of July.

So I'm looking at end of July for the next leak test and if all goes according to plan, maybe I'll have the ileostomy reversal surgery on 5 August, exactly a year after the major surgery of 2020. 


I should be in great shape for the All-Ireland final.

Title: Re: Medical Status of Boardmembers
Post by: Rois on June 19, 2021, 07:32:40 AM
I guess our bodies are not machines and won't always do exactly what we want, when we want, but it sounds, as you said, like a minor delay, and the fact that there's a plan should make you feel a lot more reassured.

Your outlook and attitude is so inspirational. This may or may not be the case, but it sounds like your surgical team is also doing a super job with both treatment and communication (though it seems like you're a dream patient in terms of listening, understanding and doing what you are told).
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on June 19, 2021, 11:08:36 AM
Just a bump in the road BH. Not be long before you're back at it!
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on June 19, 2021, 02:07:59 PM
Good man MrH, . . .  ONWARDS AND UPWARDS
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on June 19, 2021, 06:32:39 PM
You're nearly there, BH. Just a little bump in the road. Hope all goes well in the coming weeks and you're match fit for that All Ireland final! Will be even better if your team makes it there.
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on June 19, 2021, 10:41:56 PM
Keep er lit BH. A small bump is right. Onwards and upwards!!
Title: Re: Medical Status of Boardmembers
Post by: Armagh Girl on June 20, 2021, 07:32:45 PM
Good Luck BH, with the next part on your journey to recovery.  You are an Inspiration to us all on GAA Board, so humbling, positive and determined. You have come so far and this is just a small bump on the road.  We are all behind you!
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on June 20, 2021, 09:56:35 PM
Echoing the above replies BallHopper. Your positivity is an inspiration to us all. A bump in the road as others describe it, luckily you haven't had many. Keep her lit.
Title: Re: Medical Status of Boardmembers
Post by: Tyrdub on June 21, 2021, 02:09:14 PM
As all the above BH, keep her lit lad
Title: Re: Medical Status of Boardmembers
Post by: Nanderson on June 27, 2021, 10:21:08 AM
Hi All, was just wondering if anyone has found a way of knowing where you are on the NHS waiting lists. I've had a letter saying i was put on the waiting list for bowel problems in July 2019 and I know that covid has delayed the whole process and Northern Ireland are in a bad way with waiting list times as a result.
Title: Re: Medical Status of Boardmembers
Post by: BennyCake on June 27, 2021, 11:41:50 AM
Quote from: Nanderson on June 27, 2021, 10:21:08 AM
Hi All, was just wondering if anyone has found a way of knowing where you are on the NHS waiting lists. I've had a letter saying i was put on the waiting list for bowel problems in July 2019 and I know that covid has delayed the whole process and Northern Ireland are in a bad way with waiting list times as a result.

Ring the consultant's secretary. You might not find out where you are on the list, but they might tell you how long you might be likely to wait from your referral date.

Tell them you'll be available if a sudden cancellation occurs. Leave your name and number, and if someone cancelled at the last minute, they might remember that you'd said you could make it at short notice. They might ring you rather than waste an appointment slot. Mightn't happen, but it's worth a try.
Title: Re: Medical Status of Boardmembers
Post by: Nanderson on June 27, 2021, 12:35:50 PM
Quote from: BennyCake on June 27, 2021, 11:41:50 AM
Quote from: Nanderson on June 27, 2021, 10:21:08 AM
Hi All, was just wondering if anyone has found a way of knowing where you are on the NHS waiting lists. I've had a letter saying i was put on the waiting list for bowel problems in July 2019 and I know that covid has delayed the whole process and Northern Ireland are in a bad way with waiting list times as a result.

Ring the consultant's secretary. You might not find out where you are on the list, but they might tell you how long you might be likely to wait from your referral date.

Tell them you'll be available if a sudden cancellation occurs. Leave your name and number, and if someone cancelled at the last minute, they might remember that you'd said you could make it at short notice. They might ring you rather than waste an appointment slot. Mightn't happen, but it's worth a try.
Great advice. I'll give it a go
Title: Re: Medical Status of Boardmembers
Post by: Wildweasel74 on June 27, 2021, 01:26:05 PM
Waste of time, I have the same issues, had operation cancelled last May 20 after a few yrs on the list. They can't give u any date now, cause they are so far behind they dealing with cancer patients first. I know of an elderly lady had a compound fracture if the ankle, need plate inserted, waited in Hospital 9 days before a priority operation, brutal.
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on June 27, 2021, 05:19:56 PM
Quote from: Nanderson on June 27, 2021, 10:21:08 AM
Hi All, was just wondering if anyone has found a way of knowing where you are on the NHS waiting lists. I've had a letter saying i was put on the waiting list for bowel problems in July 2019 and I know that covid has delayed the whole process and Northern Ireland are in a bad way with waiting list times as a result.
If you can afford it get your GP to make a private referral. The initial consultation is prob about 200 which is okay. It's the ongoing stuff which will rack up. Unfortunately for consultations private is the only reasonable option nowadays which defeats the purpose of the NHS.
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on June 28, 2021, 09:02:44 AM
Quote from: Tony Baloney on June 27, 2021, 05:19:56 PM
Quote from: Nanderson on June 27, 2021, 10:21:08 AM
Hi All, was just wondering if anyone has found a way of knowing where you are on the NHS waiting lists. I've had a letter saying i was put on the waiting list for bowel problems in July 2019 and I know that covid has delayed the whole process and Northern Ireland are in a bad way with waiting list times as a result.
If you can afford it get your GP to make a private referral. The initial consultation is prob about 200 which is okay. It's the ongoing stuff which will rack up. Unfortunately for consultations private is the only reasonable option nowadays which defeats the purpose of the NHS.

Yeah, if you can afford it, go private, I wouldn't be waiting around on the NHS if Im being honest at the minute the way waiting times are. Something like a bowel problem needs looked into straight away
Title: Re: Medical Status of Boardmembers
Post by: Rudi on July 19, 2021, 10:12:49 AM
Anyone ever try or know of people who tried bio-energy treatment for any range of health dis-orders & what did they think?
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on July 30, 2021, 10:08:47 PM
Quote from: Ball Hopper on June 19, 2021, 05:36:11 AM
Well folks, the news is not as good as I'd hoped. 

The pressure of the leak test was enough that a small track was noticed at the site of the previous space.  This little space measured 2 cm, versus the 5.5 cm original gap.

It seems the vacuum therapy did not close the space from the inside to the surface, but got a covering over what was left of the opening.  This covering was easily punctured during the leak/pressure test.

Consolation is taken in the much smaller space that remains.  Most of the progress was due to the vacuum therapy, but that is no longer suitable as the sponge can't really fit in the space and it is not so effective if only at the "mouth", so to speak.

So the plan to finally close it off involves placing a treated gauze over the space.  It will work like a desiccant and dry out the area which will encourage everything to come together in a more solid way, along with salts and whatever else to encourage healing.  I guess the natural wetness doesn't allow a more solid scab-like cover to form.

The gauze will be replaced every week in the surgeon's clinic and photographs will be used via flexible sigmoidoscopy to monitor progress as well.  There will be no anesthesia for any part of this procedure, with all tools and equipment inserted via the closest opening. 

Starting next week, the surgeon expects about 4 or 5 visits will be enough to close the space fully.  Another leak test will be held at that stage.

It is good that nobody is rushing the reversal surgery until I'm 100% healed internally and ready.  I'd much prefer that than going ahead now and running the risk of serious infections down the road. 

Oddly enough, I didn't feel any great disappointment in failing this leak test - I just took it as another small step to take on my journey back to full health.

Diet and exercise are doing great, all blood tests are normal and the peripheral neuropathy is fading, even if very slowly. With the warmer weather, I can actually walk barefoot on normal surfaces without any great sense of cold, although the sole of my left foot feels like there is an insole attached to half of it.  I'm not sick in any way, just waiting for a wound to heal fully. 

The month of weekly gauze placement will be up in no time at all and I'm pleased that the finish line is almost in sight, but even more pleased that I'll be back to 100% in no time really.  Thanks again for all the support - it really does mean a lot to me.  I'll update again in about a month, say mid to end of July.

So I'm looking at end of July for the next leak test and if all goes according to plan, maybe I'll have the ileostomy reversal surgery on 5 August, exactly a year after the major surgery of 2020. 


I should be in great shape for the All-Ireland final.

Looks like I'm doubtful for the All-Ireland final.  Healing is slow, but at least moving in the right direction. 

The gauze/packing material seems to have helped, or else I'm healing a little bit anyway. 

Next appointment on 9 Aug will be with full endoscopy and live on the screen in front of me. 

We will probably schedule the next leak test for that week or the next - by 20 Aug for sure.  The surgeon thinks the "hole" will not be so deep next time and will be more of a "dent".  Such a dent means nothing will be trapped that might cause infection later, so ileostomy surgery can be scheduled if that be the case, probably early September. 

The one possible issue that could cause the reversal surgery to be postponed is the presence of any small wisps or tracks at the back /inside part of the "hole".  Such tracks could trap any small particles that would result in infection.  We will cross that particular hurdle and the associated treatment/schedule when we get to that point.

So that's where I'm at for now.  All depends on leak test, as usual.  Doing well in every other aspect...weight about right for surgery (knowing a few pounds will be lost over the surgery and first few weeks thereafter).  Recent blood draw showed everything normal, except for glucose being a little high. 

Pleased enough to be making progress, although missing the one-year time frame for the reversal surgery dropped my attitude for about 10 minutes. 

Must make sure I'm not in hospital for the All-Ireland final and the replay.

As always, thanks for the great support - I think I can nearly see the finish line now (bit of a disclaimer there). 

Will update again in late August.



Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on July 31, 2021, 01:43:06 AM
Such a difficult period but a period where things will improve
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on July 31, 2021, 01:56:13 PM
Good luck BH!
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on July 31, 2021, 03:03:53 PM
Best wishes frm Tyrone BH
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on September 02, 2021, 07:40:11 AM
Looks like I won't make the All-Ireland Final either.

Leak test on 25 August showed the space at 1 cm deep, which is half of the 2 cm depth in June.  There are no leaks at the back wall of the space, which is good news, but it did not convert into a "dent" as the opening is only 0.5 cm.  If the opening was up to 3 or 4 cm, there would have been minimal possibility of bacteria getting trapped in it, but now that the opening is so small the risk of proceeding with the ileostomy surgery is deemed too great.

Before continuing, additional scans were included on the day of the leak test and I'm delighted to report no evidence of any cancer anywhere – all clear everywhere in a comprehensive set of chest, abdomen and pelvis scans.

All other matters are well under control – weight is steady and the peripheral neuropathy in now mild and continuing to fade.  Diet is good and exercise picking up again, very much weather dependent as I don't walk in the rain or the heat.

So, what's next?  Well, my medical journey is going into another exciting and educational phase.  After the well-controlled chemo and the rotating radiation equipment, the robotic surgery was eye-opening, to say the least.  Recovery from the surgery was slow with this space/hole very slow to heal.  Several drainage procedures failed or had minimal success before the interesting vacuum therapy got things started.  As the space got smaller, a silver-based collagen matrix (like a desiccant) got me to where I am now, where the space is now too small to pack with the matrix.

Now I enter the world of medical nanotechnology.  Specifically: "nano-structured polymer scaffolds for tissue engineering and regenerative medicine".      Yes...scaffolds!!!

First off, in our real-size world, imagine we are using regular size scaffolding that is made of something biodegradable but is coated with things that stimulate growth...and it is being used to bring walls of ivy together from both sides as well as above and below to try and form one solid ivy mass.  You can see how it would succeed – now reduce that in size so the scaffolding appears as a powder to the naked eye.  Then just place the powder in the space/wound.  It may well replace skin grafts as a treatment, per the final paragraph below.  Hopefully, it works on internal wounds as well, which is my case.

For a little further information, I'll quote from a journal rather than risking an incorrect summary.  These paragraphs are not consecutive, but overall, I think you'll get the picture:

"The structural features of tissue engineering scaffolds affect cell response and must be engineered to support cell adhesion, proliferation and differentiation. The scaffold acts as an interim synthetic extracellular matrix (ECM) that cells interact prior to forming new tissue."

"The focus is on nano-fibrous scaffolds and the incorporation of other components including other nanofeatures into the scaffold structure. Since the ECM is comprised in large part of collagen fibers, between 50–500 nm in diameter, well-designed nano-fibrous scaffolds mimic this structure.
A novel thermally-induced phase separation (TIPS) is a process in which a solution of biodegradable polymer is cast into a porous scaffold, resulting in a nano-fibrous pore-wall structure. These nano-scale fibers have a diameter (50–500 nm) comparable to those collagen fibers found in the ECM. This process can then be combined with a porogen leaching technique to engineer an interconnected pore structure that promotes cell migration and tissue ingrowth in three dimensions."

"Allograft tissue is another option, but has its own inherent risk for complications, including its limited supply, as well as the possibility of disease transmission and tissue rejection. The growth of replacement tissue using tissue engineering and regenerative medicine is one method of using technology to create an effective replacement for these types of graft tissue." 

 
I'll have this treatment next week and will report back shortly thereafter with expected duration and any other details that might be interesting, including hopefully a firmer date for the ileostomy reversal surgery.

As always, thanks for the support – it does make a difference.

My treatments have certainly been varied and educational.  I thought the robotic surgery was hugely impressive, but this nanotechnology scaffolding...all I can say is WOW.
Title: Re: Medical Status of Boardmembers
Post by: Taylor on September 02, 2021, 09:44:28 AM
Fair play to you BH.

You are an absolute inspiration
Title: Re: Medical Status of Boardmembers
Post by: Franko on September 02, 2021, 12:38:18 PM
Excellent stuff BH, it has been both enlightening and inspiring to follow this journey with you.
Title: Re: Medical Status of Boardmembers
Post by: Denn Forever on September 02, 2021, 01:55:29 PM
Almost  there.  Good on ya.
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on September 02, 2021, 03:22:45 PM
Keep'er lit BH. Thank for the update!
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on September 02, 2021, 09:03:19 PM
Quote from: Jeepers Creepers on September 02, 2021, 03:22:45 PM
Keep'er lit BH. Thank for the update!
KRO BH.
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on September 02, 2021, 09:15:47 PM
Fair play BH, you're inspirational to many here, keep it going!
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on September 05, 2021, 10:36:40 PM
The science involved is something else, the way you've approached things and able to relay that has been truly inspirational. It's obviously therapeutic and gives us a real insight into something that can be very personal to a lot of people but you update us during a difficult time for you and your family!!

I took my sister to her latest MRI scan on Thursday, chemo finished the week before, fingers crossed things seem ok, though waiting on the scan results can be nerve wrecking.

Just with the latest news of the death of Sarah Harding due to breast cancer, it really brings it home and how cancer is a bastard!!
Title: Re: Medical Status of Boardmembers
Post by: imtommygunn on September 06, 2021, 08:25:16 AM
Jesus mr you haven't had it easy on this front either.

Great thread this.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on October 11, 2021, 02:42:06 AM
On to the next phase with very little progress.

After the fourth treatment with the scaffold powder, the surgeon says that history tells him the space is probably not going to close fully as gravity seems to cause the powder to fall out quickly.  Since such spaces usually close within 12 months of the surgery anyway and we are now gone over 14 months, we are at the stage of "this is as good as its gonna get".

To best avoid future infection, it is proposed to staple the mouth of the space in the open position in a process called "marsupialisation".  This will make the space into a permanent dent or a pouch (hence the name) that will allow complete drainage of any fluids/solids that enter. 

The technical term is: "Endoscopic stapled marsupialisation" and Wikipedia says: Marsupialization is the surgical technique of cutting a slit into an abscess or cyst and suturing the edges of the slit to form a continuous surface from the exterior surface to the interior surface of the cyst or abscess. Sutured in this fashion, the site remains open and can drain freely. This technique is used to treat a cyst or abscess when a single draining would not be effective and complete removal of the surrounding structure would not be desirable.

Although I don't have any cysts or abscesses, you can see why this is preferred to just letting everything stay as is - the risk of infection when particles get trapped and fester is eliminated completely by leaving the space wide open to drain fully.

The stapling procedure will happen on Wednesday next, 13 October, on an outpatient basis.  To confirm there are no leaks at the back of the space, another water/dye contrast CT scan will be scheduled about two weeks after the procedure.  The surgeon may consider having that CT scan as the first item of hospital admission for the ileostomy reversal surgery, probably the last week of October.  Hospital stay could be up to a week.

Six weeks for the ileostomy wound to heal and about the same length of time for me to regain body functions will see me in great shape for Christmas.

Everything else is great, even the peripheral neuropathy is fading quickly, with only minor issues in the sole of my left foot.

As always, I greatly appreciate the support from everyone on here...I'm getting very close to the end of this journey and you have helped me immensely.

Hopefully next update will be giving the date for the ileostomy reversal.


Title: Re: Medical Status of Boardmembers
Post by: whitey on October 11, 2021, 02:45:56 AM
God bless you.....you are a trooper
Title: Re: Medical Status of Boardmembers
Post by: Dougal Maguire on October 11, 2021, 06:18:02 AM
Best of luck to you as you continue your battle. You really are an inspiration.
Title: Re: Medical Status of Boardmembers
Post by: bannside on October 11, 2021, 07:15:59 AM
Fantastic BH. You are beginning to see the other side now...one more push. 
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on October 11, 2021, 08:55:44 AM
Good man BH. You're an inspiration to us all. You put all the other arguments here into perspective too. Best of luck Wednesday. You'll have a good Christmas le cúnamh Dé. If your body shows the same positivity as you do then you'll be flying it!

P.S. we all support you here, and we're all glad it helps.
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on October 11, 2021, 09:19:59 AM
Good Man BH. Thanks for the update. Keep'er going!
Title: Re: Medical Status of Boardmembers
Post by: J70 on October 11, 2021, 02:28:14 PM
Well done BH. Keep it going!
Title: Re: Medical Status of Boardmembers
Post by: JoG2 on October 11, 2021, 02:43:04 PM
Amazing BH. So inspirational.
Title: Re: Medical Status of Boardmembers
Post by: Taylor on October 11, 2021, 02:48:17 PM
Exactly what JOG2  says - inspirational
Title: Re: Medical Status of Boardmembers
Post by: joemamas on October 11, 2021, 03:38:41 PM
Great news BH
Very inspiring.
Title: Re: Medical Status of Boardmembers
Post by: Armagh Girl on October 11, 2021, 03:53:07 PM
Fair Play to You BH, you are a total inspiration to us all!  Good Luck for the next few days/weeks and hope all goes well!   
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on October 24, 2021, 07:25:53 AM
Quote from: Ball Hopper on October 11, 2021, 02:42:06 AM
On to the next phase with very little progress.

After the fourth treatment with the scaffold powder, the surgeon says that history tells him the space is probably not going to close fully as gravity seems to cause the powder to fall out quickly.  Since such spaces usually close within 12 months of the surgery anyway and we are now gone over 14 months, we are at the stage of "this is as good as its gonna get".

To best avoid future infection, it is proposed to staple the mouth of the space in the open position in a process called "marsupialisation".  This will make the space into a permanent dent or a pouch (hence the name) that will allow complete drainage of any fluids/solids that enter. 

The technical term is: "Endoscopic stapled marsupialisation" and Wikipedia says: Marsupialization is the surgical technique of cutting a slit into an abscess or cyst and suturing the edges of the slit to form a continuous surface from the exterior surface to the interior surface of the cyst or abscess. Sutured in this fashion, the site remains open and can drain freely. This technique is used to treat a cyst or abscess when a single draining would not be effective and complete removal of the surrounding structure would not be desirable.

Although I don't have any cysts or abscesses, you can see why this is preferred to just letting everything stay as is - the risk of infection when particles get trapped and fester is eliminated completely by leaving the space wide open to drain fully.

The stapling procedure will happen on Wednesday next, 13 October, on an outpatient basis.  To confirm there are no leaks at the back of the space, another water/dye contrast CT scan will be scheduled about two weeks after the procedure.  The surgeon may consider having that CT scan as the first item of hospital admission for the ileostomy reversal surgery, probably the last week of October.  Hospital stay could be up to a week.

Six weeks for the ileostomy wound to heal and about the same length of time for me to regain body functions will see me in great shape for Christmas.

Everything else is great, even the peripheral neuropathy is fading quickly, with only minor issues in the sole of my left foot.

As always, I greatly appreciate the support from everyone on here...I'm getting very close to the end of this journey and you have helped me immensely.

Hopefully next update will be giving the date for the ileostomy reversal.

HEALTH WARNING: DO NOT READ WHILE EATING

The stapled marsupialisation went off without a hitch on Wednesday with two titanium staples used to keep the space open.  The mouth of the space was also enlarged by "deroofing" the space.  I was quite sore for a few days but back to normal by Sunday or so.

Next up:  the long-awaited ileostomy reversal is set for 3 November.  I will have another leak test in the days before it to verify the only open space is the free-draining pouch. 

I'm told the normal hospital stay for ileostomy reversal is 4-6 days, so home 10 November is most likely.  Surgeon says he'll take action to avoid a hernia on that side by inserting a support mesh - the muscles have been idle for so long they need help for a while.  The opening in my side will not be stitched shut, instead it will heal itself from the inside.  So all they will do after the plumbing is reconnected properly, is just put gauze in the opening and bandages over that.  Daily gauze replacement plus new bandaging will be my task for the approx six weeks of recovery time, which takes me up to 15 December or so.

By the time the opening has fully healed, I expect to be at the new normal of bathroom/toilet function.  Getting myself potty-trained all over again will not be pleasant for me (and probably those in the house as well).  In fact, I expect it to be somewhat humiliating for a few weeks.  As I was always open about everything going on with me, I must declare that I do not look forward to the month or so of adult diapers in my immediate future.  I somehow doubt very much that sharing that experience will bring me the comforts previously gained by giving details on surgery, chemo, and so on. Hence the warning on top of this message - not exactly a breakfast reading/discussion topic.

The need for diapers is the fact that everything has shrunk and weakened.  The rectum is smaller and stiffer with much less capacity, while the muscles holding everything in are out of practice.  The expectation is that I'll have a lot of bowel movements once I get home - up to 15 or 18 a day initially.  Diet will play a big role in this and small, frequent meals are planned, with nothing after 6pm to see if I can get more than 3 hours of sleep at a time, even if wearing a diaper.

As the system strengthens up, with the rectum returning to a larger size, I hope to get down to 4 or 5 trips in the first hour of each morning, then nothing till the following morning.  It seems that as the rectum fills  and I empty it, it refills quickly as the body has to re-learn the art of sending everything in the colon down the chute at the same time.  Hence the 4 or 5 bowel movements in an hour, even after a few weeks.  Once empty, the colon will refill slowly and will be able to hold its contents for longer and longer - getting to almost 24 hours eventually.

I have been performing kegel exercises that are better known to women after childbirth, but I'm sure I will be under-prepared.  Strengthening the "pelvic floor" is such a strange concept - but I fully understand the incontinence that results from a weak one.  I'm also grateful that we decided to purchase a bungalow with two bathrooms - we will manage for the awkward first month or so and work the new habits into the routine after that.  Shower right beside the toilet might also be an unforeseen benefit to all in the house.

Anyway, I'm delighted to be nearing the end of my medical treatment journey with such a positive outcome.  I'll have scans and tests and so on for years to come, but this coming month will represent a huge milestone for me. 

Many sincere thanks again for all the support and I'll update again when I'm home - hopefully by mid-November.  After that, I can't wait to write the final chapter of my battle as I return to a normal life.





Title: Re: Medical Status of Boardmembers
Post by: general_lee on October 24, 2021, 07:57:15 AM
Maith an fear! you can't keep a good man down 💪🏼
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on October 24, 2021, 08:40:34 AM
Class BH. Although your level of detail isn't ideal for breakfast time (you did warn us  ;D) it's a great insight into your journey out the other side of this. Fingers crossed you are in good nick for Christmas!
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on October 24, 2021, 04:54:53 PM
Good man BH!!
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on November 14, 2021, 05:10:39 AM

Hi all,

Good news in that after 4 nights in hospital for my ileostomy reversal, I got home last Saturday evening (6 Nov).  Things went well overall, but this week has been rough enough with the expected incontinence issues.  There is a small improvement yesterday and today, which is enough to allow me to get some beneficial sleep.

The value of good sleep is about the most important thing I've learned over the last 2 years.  Things will improve week by week, hopefully, and I'll be in reasonable shape for 1 Dec and in good shape for 1 Jan.

Thanks for all the support...another couple of months and this will all be done and I'll settle into the "new normal" for my body.

Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on November 14, 2021, 09:11:53 AM
Quote from: Ball Hopper on November 14, 2021, 05:10:39 AM

Hi all,

Good news in that after 4 nights in hospital for my ileostomy reversal, I got home last Saturday evening (6 Nov).  Things went well overall, but this week has been rough enough with the expected incontinence issues.  There is a small improvement yesterday and today, which is enough to allow me to get some beneficial sleep.

The value of good sleep is about the most important thing I've learned over the last 2 years.  Things will improve week by week, hopefully, and I'll be in reasonable shape for 1 Dec and in good shape for 1 Jan.

Thanks for all the support...another couple of months and this will all be done and I'll settle into the "new normal" for my body.

KRO BH.
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on November 15, 2021, 12:51:34 PM
Great news BH....
Title: Re: Medical Status of Boardmembers
Post by: seafoid on November 15, 2021, 03:31:16 PM
Keep her lit, BH.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on December 03, 2021, 03:38:00 AM
Hi all,

It has been a month since my ileostomy reversal, and I must admit that healing progress is very slow.  On the plus side, the ileostomy wound site is healing nicely and is down from 4 cm deep to about 1.5 cm.  Extra protein in the diet will help continue healing and it might well be 100% buttoned up by Christmas.

On the other hand, the incontinence issues are at a level that was expected after one to two weeks, rather than four weeks.  Average daily bathroom trips are in the 12-15 range, with 4-5 of those at night.  I seem to get best sleep from 6-9am or so, plus a short hour-long afternoon nap keeps me from being totally fatigued, but it is not ideal.  I need to get down to single digits per day very soon and get a good night's sleep as well - the long-term effects of not sleeping properly will lead to other health issues that might not be directly related, but may be prevented.  Of course, the effect of me getting up almost hourly some nights does impact my partner as well, and I'm not sure how best to address that if this continues to medium and long term (but I imagine the spare room will be suggested). 

The medical people say that if I don't work extra hard to get things under control in a matter of weeks or a low number of months, the body will turn my current condition into a chronic, long-term, permanent status.

Diet is very strict and they are playing around with medications and preferred times to take those "medicaments" in the hope of hitting the magic combination really soon.

Any variation in diet, even by as little as one meal or one bottle of wine, could push progress back by several days or weeks and hinder the probability of final success, so there are no "blow-out" days or meals or even drinks allowed.

So I'm on a super strict diet with regard to what I eat, when I eat, and what quantities at different times of the day.  Things are rather bland, to put it mildly.  Exercise is required, but can't do too much either as straining the body is not a good idea.  So it is not fun, even though general health is quite good and of course, the cancer-free umbrella over all I do is very comforting.

Weight is holding up well so far and I'm determined to get on top of these matters quickly, even if everything will be super-boring for the next while.  I'm told I will "observe" the Christmas holidays in the truest sense of the word in that I will not participate in any of the gluttony of food, beer, cider or wine.  I will admit that, while this will be my third sober Christmas and New Year in a row, the people around me are not too bad when I'm the only sober one.  I was willing to bet that they are no fun at all and would be really annoying even.

So a decent birthday celebration in March is what's on my horizon and I'm ok with that.  I'll update again around Christmas and hopefully I'll be making progress by then.

Thanks again for all the support and good wishes - it does help.  Everyone can have an extra dessert or drink for me so I won't feel too left out over the Christmas period.








Title: Re: Medical Status of Boardmembers
Post by: Taylor on December 03, 2021, 08:41:32 AM
Good man BH.

March is a date for the diary then.

Keep the updates coming.

Inspirational
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on December 03, 2021, 09:38:59 AM
Good stuff BH! Keep the updates coming. March it is! (i'll have a few sneaky ones in btw on your behalf!)
Title: Re: Medical Status of Boardmembers
Post by: grounded on December 03, 2021, 01:54:44 PM
Best of luck. You are an inspiration to the rest of us. Best wishes for Christmas and New Year.
Title: Re: Medical Status of Boardmembers
Post by: Armagh Girl on December 03, 2021, 10:46:40 PM
Aw BH....you are a real Trouper and fair play to you.!! You are a complete inspiration and hopefully you will continue to make great progress. 
Title: Re: Medical Status of Boardmembers
Post by: Dougal Maguire on December 03, 2021, 10:57:45 PM
Great stuff BH. Hopefully the months between now and March will fly in. Easter will be the new Christmas for you. Good luck on your journey to full health
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on December 04, 2021, 10:54:18 AM
We'll all have a drink with you on St Patricks Day,  keep er lit Mr H
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on December 04, 2021, 12:20:07 PM
Fair play Hopper, hopefully your issues will sort themselves out for you soon. Best of luck and hopefully you'll be in good form come next Spring.
Title: Re: Medical Status of Boardmembers
Post by: whitey on December 04, 2021, 03:56:58 PM
Fantastic news BH. You are an inspiration to all on here
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on January 03, 2022, 07:11:32 AM
Progress is continuing, even if at the usual slow rate.

Had a good Christmas and New Year.  Ate enough, drank nothing and had a good time with the family.  Getting the right balance of meal times and frequency/timing of meds is the ongoing battle - everyone is different and I have to keep trying until I find the magic combination that will allow me to sleep most of the night at least.

Bathroom issues are improving though, with daily visits now down to single digits.  Of course, any stepping out of line with diet will cause grief, so I've been fairly good in that area.  The last visit with the medical team got me permission to step up from the very bland foods to something near-normal, with some exceptions.  With the intent of putting a bit more aggression toward the intestine, I was allowed to have crispy foods, but nothing deep fried yet for a few more weeks.  Add some stronger seasoning will be the path forward for now before eventually getting to a mild curry or equivalent.  That might take weeks or a few months, nobody knows.

Vegetables still not allowed unless mashed, as the intestine wouldn't be able to handle the hard items like carrots, even if boiled completely.  I thought that was odd until I found out how tough it is to mash those boiled carrots - not as easy as I thought.  Although I was allowed to step up to Chinese food, I chose not to do that until this coming week, as overstepping the mark will have a bathroom price to pay and I'll wait till this coming week to venture up the food spice chain. Some General Chicken midweek is the plan, with plain white rice.  Avoid stir fry stuff though, as the large chunks of veg won't be fully cooked.  For once, the Irish way of boiling the heck out of everything in the veg arena will suit me for a while.  Porridge is back on the menu too and I really enjoy it.  Having multiple smaller meals during the day is the way to go, with nothing within hours of bedtime.

I'll probably overstep the mark initially on some foods, but I'll have more tolerance the following week when I try those same foods again.  Eventually I'll build up said tolerance to back to near normal and away I go.  I figure the next two months will tell a lot.  Don't think I'll ever get to super spicy stuff, but I'm ok with that too.  Had a glass of wine before Christmas as a trial run - did not work out well for me, so no alcohol until March at the earliest.  Now that I know the repercussions of a glass, it is surprisingly easy to forego.

Everything else is going very well - the ileostomy site has healed full from the inside out with no sign or trace of any infection along the way.  I am eating more these days, after I had to force myself to eat the portions before Christmas.  I never thought it would be so hard to finish a small plate of meat and potatoes as it was when I just wasn't hungry at any time of the day.  Weight is just a small bit over my target, which is fine.  It means I tolerated the surgery and recovery pretty well. 

So I just have to behave myself when it comes to foods I like/want for a while.  Introducing them slowly in small quantities and building up tolerance is the key.  If I don't do that, the intestines may never come to accept such foods and I'll be stuck on the bland diet forever and any small deviation will have bathroom consequences.  The goal is to get back to normal by March, but any time up to early summer will be ok too.

I'll update again when I get closer to March, and, as always, sincere thanks for the support. 




Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on January 03, 2022, 09:36:07 AM
Good man BH best wishes for the year ahead
Title: Re: Medical Status of Boardmembers
Post by: grounded on January 03, 2022, 09:50:18 AM
That all sounds like great progress BH. Im over the moon for you.
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on January 03, 2022, 01:07:51 PM
Happy new year BH. Progress sounds good!
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on February 15, 2022, 07:38:32 AM
The big news to open with this time is the latest full-body CT scan showed no cancer, or anything resembling it. 


Needless to say, this is great news.  I will have scans every 6 months until 5 years after my surgery – August 2025 – but I'm off to a great start.  Next scan in August will be 2 years cancer-free, which puts me at 40% of the journey to final discharge already!

Bathroom issues have improved greatly as well...although still more frequent than "normal".  I still have the odd night where I'm up more than twice, but such nights are getting further apart – I'm currently getting a full night's sleep in 9 out of every 10 nights and looking forward to getting it to 19 out of 20 and then 30 out of 31, meaning only one night a month causing bother.  I still don't leave the house for too long at any one time, but I'm usually good for a few hours without any sense of panic setting in.  I'm liable to need a bathroom twice in 20 minutes, so even going shopping requires a lot of thought and a good sense of confidence in the immediate future. My new "normal" will be with me in a few weeks/months and it looks like it will be easily managed and tolerated.

Getting the proper balance of medicaments and food was a challenge, but things are fairly well under control now and I'm back to nearly normal diet – managing all the vegetables quite well and some of the spicier foods (at the low end of the spiciness scale) have been taken on board without any backlash.  The usual battery of blood tests showed only glucose outside of normal range, and that has even lowered as well.

I've even tolerated some white wine (the red won't be sampled for another few weeks at least) and it has been wonderful to be able to return to one my life's greatest treasures – sitting back and have a glass in the company of Mrs. BH. 

Although I have some time to being back at full health, I feel truly blessed in all the support I have experienced since diagnosis in November 2019.  That is especially true for the gaaboard posters – I recall reading this entire thread in hospital on one of my "low" days just after surgery and the lift I got was unbelievable.  All that is left to say now is a reminder to those who have not scheduled a colonoscopy and are either at risk from family history or are simply of the age where it is recommended – you can get yourself a good deal of comfort by getting it done soon.  Please schedule it.

Thanks again to one and all...I'll probably post again in May or thereabouts as I'm not expecting any news between now and then...again, best wishes to each and every one of you.


Title: Re: Medical Status of Boardmembers
Post by: Tyrdub on February 15, 2022, 08:32:15 AM
That's great news BH, well done. I'm sure it the weight is lifting from your shoulders
Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on February 15, 2022, 08:38:06 AM
Fantastic stuff ☺
Title: Re: Medical Status of Boardmembers
Post by: Franko on February 15, 2022, 09:01:34 AM
Brilliant news BH.

I think most GAAboard posters would agree that following your journey has given everyone else a lift also!

Title: Re: Medical Status of Boardmembers
Post by: Rois on February 15, 2022, 10:05:04 AM
This is brilliant news to read. We've all gotten so much insight from your willingness to share the details. I agree fully with Franko, we definitely have gotten a lift.
Title: Re: Medical Status of Boardmembers
Post by: johnnycool on February 15, 2022, 10:17:18 AM
Great stuff Ballhopper, be really proud of yourself for how you've faced up to this huge challenge in your life.



Title: Re: Medical Status of Boardmembers
Post by: Dougal Maguire on February 15, 2022, 10:29:38 AM
Great news BH. Delighted for you.
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on February 15, 2022, 12:37:41 PM
Fantastic news BH, your posts here have been inspirational, your recommendation for a colonoscopy is not lost on me, thank you.
Title: Re: Medical Status of Boardmembers
Post by: grounded on February 15, 2022, 01:13:22 PM
Great stuff BH. Brilliant news
Title: Re: Medical Status of Boardmembers
Post by: TwoUpTwoDown on February 15, 2022, 04:06:52 PM
Genuinely got the goosebumps reading that BH. Good luck for everything and enjoy the grapes where possible!
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on February 15, 2022, 06:08:28 PM
That post made my day BH. The best of luck with your continued recovery.
Title: Re: Medical Status of Boardmembers
Post by: Rossfan on February 15, 2022, 06:36:19 PM
Best wishes Ballhopper.
Title: Re: Medical Status of Boardmembers
Post by: joemamas on February 15, 2022, 08:29:58 PM
Great news to read.
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on February 15, 2022, 09:02:23 PM
Good man BH! Wishing you all the best!
Title: Re: Medical Status of Boardmembers
Post by: Armagh Girl on February 15, 2022, 09:03:32 PM
Great News Ball Hopper, you are truly Inspirational after all that you have went through.  You should be so proud of yourself, and best of luck for the next part of your Journey.  Remember we are all Thinking about you and your family !
Title: Re: Medical Status of Boardmembers
Post by: laoislad on February 16, 2022, 07:31:33 AM
Good man Ball Hopper. 👍
Title: Re: Medical Status of Boardmembers
Post by: Square Ball on February 16, 2022, 10:00:05 AM
absolutely fantastic news, and great you shared this
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on May 20, 2022, 07:17:20 AM

Mid-May update as promised.  Don't post as much anymore, but read the board most days - don't think I've forgotten about my friends here.

Glad to report that improvement is continuing.  Might be slower than the medics like, but if I'm in great shape a year after the final surgery rather than 6 months after it - who cares once the year is up?  Certainly it will make no difference to me.

Last report had me in the bathroom at night about once every 9 or 10 nights.  Right now, I'm on a streak of 22 consecutive nights with no interruption.  Delighted with that, obviously.  I finally got to the proper diet that wasn't causing problems - a low roughage/fiber diet. 

Now is the time to start adding some roughage/fiber, which I will do slowly.  A small bowl of cereal for breakfast instead of scrambled eggs for a start.  Adding too much too soon will cause problems, so I'll take it slowly.  Adding a little more every week or 10 days is the plan, as well as cutting back as necessary if things go wrong, is what I see for the next few months. 

I'll have another colonoscopy and a full-body CT scan by late August and I'm hoping for continued good news then.

I'm tapering off some of the neuropathy drugs, plus some others as well.  A twelve-week stint to get done with them will pass quickly with no withdrawal effects, I hope.  Glucose levels spiked a little higher, but I've not been exercising much since the last surgery in November, so getting the walking shoes out again should help.  Learning how to stretch properly (without overdoing it) is also important.  Weight is just a bit above where I want to be, but very close to target all the same.

Oddly enough, I've lost all interest in having wine, cider or beer.  Plenty of it in the house, but I've no desire to have any.  I'm quite happy with a glass of water as herself has a glass of wine watching TV at night.  I wouldn't even have a taste at this stage. 

Thanks again for the continued good wishes - I feel them every day.  I'll post again in August, after the next round of tests. 


Until then, everyone take care of yourselves and those around you and have a great summer.







Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on May 20, 2022, 07:22:12 AM
Swear you came into my head half an hour ago mucker glad youre improving and headin the right way still
Title: Re: Medical Status of Boardmembers
Post by: armaghniac on May 20, 2022, 07:22:18 AM
Well done Ball Hopper. Enjoy life
Title: Re: Medical Status of Boardmembers
Post by: Taylor on May 20, 2022, 08:27:11 AM
BH - absolutely flying - well done
Title: Re: Medical Status of Boardmembers
Post by: johnnycool on May 20, 2022, 09:04:58 AM
well done hopper, you'll be on the new spuds come July.

Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on May 20, 2022, 09:15:47 AM
Good stuff BH! Great to hear things still improving. Thanks for the update
Title: Re: Medical Status of Boardmembers
Post by: J70 on May 20, 2022, 12:56:10 PM
Fair fucks to you Ball Hopper.
Title: Re: Medical Status of Boardmembers
Post by: rosnarun on May 20, 2022, 02:18:07 PM
Quote from: Ball Hopper on May 20, 2022, 07:17:20 AM

Mid-May update as promised.  Don't post as much anymore, but read the board most days - don't think I've forgotten about my friends here.

Glad to report that improvement is continuing.  Might be slower than the medics like, but if I'm in great shape a year after the final surgery rather than 6 months after it - who cares once the year is up?  Certainly it will make no difference to me.

Last report had me in the bathroom at night about once every 9 or 10 nights.  Right now, I'm on a streak of 22 consecutive nights with no interruption.  Delighted with that, obviously.  I finally got to the proper diet that wasn't causing problems - a low roughage/fiber diet. 

Now is the time to start adding some roughage/fiber, which I will do slowly.  A small bowl of cereal for breakfast instead of scrambled eggs for a start.  Adding too much too soon will cause problems, so I'll take it slowly.  Adding a little more every week or 10 days is the plan, as well as cutting back as necessary if things go wrong, is what I see for the next few months. 

I'll have another colonoscopy and a full-body CT scan by late August and I'm hoping for continued good news then.

I'm tapering off some of the neuropathy drugs, plus some others as well.  A twelve-week stint to get done with them will pass quickly with no withdrawal effects, I hope.  Glucose levels spiked a little higher, but I've not been exercising much since the last surgery in November, so getting the walking shoes out again should help.  Learning how to stretch properly (without overdoing it) is also important.  Weight is just a bit above where I want to be, but very close to target all the same.

Oddly enough, I've lost all interest in having wine, cider or beer.  Plenty of it in the house, but I've no desire to have any.  I'm quite happy with a glass of water as herself has a glass of wine watching TV at night.  I wouldn't even have a taste at this stage. 

Thanks again for the continued good wishes - I feel them every day.  I'll post again in August, after the next round of tests. 


Until then, everyone take care of yourselves and those around you and have a great summer.



God to hear your doing well
my mother had something similar lost a lot of her sense of taste. so she started on Gin.
hardeet thing was she was kinda told to eat a no fibre sweet diet Which went against all her principals and better Judgement
Title: Re: Medical Status of Boardmembers
Post by: balladmaker on May 20, 2022, 05:08:50 PM
Fair play BH, delighted to hear of your ongoing progress, enjoy!
Title: Re: Medical Status of Boardmembers
Post by: grounded on May 20, 2022, 06:09:49 PM
Just brilliant news and over the moon for you.
Title: Re: Medical Status of Boardmembers
Post by: joemamas on May 20, 2022, 08:36:22 PM
Great to hear.
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on May 20, 2022, 09:22:30 PM
Mighty stuff BH. Keep her lit. It gives us all a lift to read your story from day 1 and seeing how far you've travelled in the right direction.
Title: Re: Medical Status of Boardmembers
Post by: gerrykeegan on May 20, 2022, 10:58:24 PM
Always a bit nervous when this thread gets updated. But brilliant to see you getting better and better.
Title: Re: Medical Status of Boardmembers
Post by: Armagh Girl on May 20, 2022, 11:24:40 PM
BH you are an absolute Trouper.......glad you are doing so well, and hope you continue to improve.  Stay Safe too
Title: Re: Medical Status of Boardmembers
Post by: whitey on May 20, 2022, 11:45:57 PM
BH-you're an inspiration to us all.

Long May it continue
Title: Re: Medical Status of Boardmembers
Post by: Dire Ear on May 21, 2022, 04:50:18 PM
Good man MrH,  continued steady progress
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on June 22, 2022, 11:06:02 PM
UnderTheLights, I kept meaning to ask how did your open heart surgery go?
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on June 29, 2022, 08:56:01 AM
Deborah James, or bowel babe as she was known through her podcast died yesterday, for me this strikes a chord due to my own father dying of bowel cancer and my sister a bowel cancer survivor...

Some cancer's are easily treated if caught early, I say easily treated but that's from my perspective of doing the hospital runs not actually taking the treatment, my sister had the signs but didn't act until the week of my dads funeral, the tumor was large and aggressive, but luckily for her was contained in the bowel and had breached the walls, one more week or two and I'd be posting a different post..

The treatment of chemo is horrible for most, but until something else is found its the only way to get most cancers, that and radiotherapy, the amount of times my sister told me to f**k off when I said you've only a few more to do you can do this was plenty, we laugh now but it was a horrible time for her and others going through it.

Check your pooh, if your are noticing something different about your body, get it checked out, prolonged niggles or coughs, few friends recently caught throat cancer, non smokers and fit guys late 40's..thankfully for them and their families they have come out the other end after doing something about it.. one of them is doing marathons now!!

Deborah James took some much time to reply to people who messaged her on social media, my sister even got a reply to her last year and listening to 5 live on the way in was a tough listen as she was a regular on that show in the evenings
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on July 16, 2022, 02:13:28 AM
Quote from: Milltown Row2 on June 29, 2022, 08:56:01 AM
Deborah James, or bowel babe as she was known through her podcast died yesterday, for me this strikes a chord due to my own father dying of bowel cancer and my sister a bowel cancer survivor...

Some cancer's are easily treated if caught early, I say easily treated but that's from my perspective of doing the hospital runs not actually taking the treatment, my sister had the signs but didn't act until the week of my dads funeral, the tumor was large and aggressive, but luckily for her was contained in the bowel and had breached the walls, one more week or two and I'd be posting a different post..

The treatment of chemo is horrible for most, but until something else is found its the only way to get most cancers, that and radiotherapy, the amount of times my sister told me to f**k off when I said you've only a few more to do you can do this was plenty, we laugh now but it was a horrible time for her and others going through it.

Check your pooh, if your are noticing something different about your body, get it checked out, prolonged niggles or coughs, few friends recently caught throat cancer, non smokers and fit guys late 40's..thankfully for them and their families they have come out the other end after doing something about it.. one of them is doing marathons now!!

Deborah James took some much time to reply to people who messaged her on social media, my sister even got a reply to her last year and listening to 5 live on the way in was a tough listen as she was a regular on that show in the evenings

Early detection is indeed the key.  Schedule colonoscopy when it is recommended, age wise, and earlier if family history.

I'll have my annual colonoscopy along with a full-body CT scan by the first week of August and will report the results here by mid-August. 

Initial signs are good...a blood Carcinoembryonic Antigen (CEA) test shows very good results, although the CEA test is not a diagnostic tool, in that low levels prove nothing (but high levels would signal further review in cancer patients). 

All other blood work had normal results, except for the glucose.  Just not able to walk/exercise enough to get the levels down - hopefully that will be my only priority come August and I'll be able to start some S&C work at home and in the backyard.

Will update again mid-August. 







Title: Re: Medical Status of Boardmembers
Post by: Nanderson on August 06, 2022, 12:17:56 PM
Has anyone on here ever had IV Iron infusion before? Going for one on Monday for IBD related iron anaemia and was wondering how quickly people felt the benefits from it. Heard from others who had it you can fee like a brand new person within a few weeks
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on August 08, 2022, 10:52:12 PM
Well folks, I'm delighted to provide an update that was a long time coming - recent test show no sign of any suspicious activity and the medics now consider me to be a member of the public presenting for screening tests only and not as a cancer patient.

Had CT and colonoscopy in the last 10 days and all biopsies negative and healing is continuing nicely.

CT and colonoscopy frequency moves to annually now until summer 2025 (so three more), subject to each one's findings.

No restrictions on diet, just trial and error on what effects me - I'd say the tougher to digest items like steak, lamb, brisket, and raw vegetables will be off my menu for a while, but all cooked veggies and salad leaves are back on (small amounts to start).  Won't have a spicy Chinese for a while either. Still can't process wine for some reason and a pint of cider is barely manageable - not necessarily a bad thing.

Delighted with everything.

It's been a long battle since initial diagnosis in October/November 2019, but the amazing support I've felt has got me through it step by step.

This board has been huge for me - a great place to write down my treatment plans and to soak up the support from complete strangers.  You will never know how much of a difference the posters here made, especially when I kinda struggled to meet my commitments to posting on a regular basis.



I can say now that I see no need in providing any more updates, so I'll end up with the scoreline: 

Ball Hopper 1, Cancer didn't.











Title: Re: Medical Status of Boardmembers
Post by: Minder on August 08, 2022, 10:54:11 PM
Great news BH 👏
Title: Re: Medical Status of Boardmembers
Post by: quit yo jibbajabba on August 08, 2022, 10:55:43 PM
Result Ball Hopper 😎 sincere congrats
Title: Re: Medical Status of Boardmembers
Post by: AnPuca on August 08, 2022, 10:55:55 PM
Delighted to hear this news BH. Been following your updates regularly and so happy for you. Sending a big hug your way and truly well done
Title: Re: Medical Status of Boardmembers
Post by: Farrandeelin on August 08, 2022, 11:03:51 PM
Absolutely brilliant BH. Best news in a long time. Delighted for you.
Title: Re: Medical Status of Boardmembers
Post by: whitey on August 08, 2022, 11:10:35 PM
Good man....BH

Your story, in part,, inspired me to have my first colonoscopy  just a week ago.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on August 08, 2022, 11:13:28 PM


Quote from: Ball Hopper on August 08, 2022, 10:52:12 PM
Well folks, I'm delighted to provide an update that was a long time coming - recent test show no sign of any suspicious activity and the medics now consider me to be a member of the public presenting for screening tests only and not as a cancer patient.

Had CT and colonoscopy in the last 10 days and all biopsies negative and healing is continuing nicely.

CT and colonoscopy frequency moves to annually now until summer 2025 (so three more), subject to each one's findings.

No restrictions on diet, just trial and error on what effects me - I'd say the tougher to digest items like steak, lamb, brisket, and raw vegetables will be off my menu for a while, but all cooked veggies and salad leaves are back on (small amounts to start).  Won't have a spicy Chinese for a while either. Still can't process wine for some reason and a pint of cider is barely manageable - not necessarily a bad thing.

Delighted with everything.

It's been a long battle since initial diagnosis in October/November 2019, but the amazing support I've felt has got me through it step by step.

This board has been huge for me - a great place to write down my treatment plans and to soak up the support from complete strangers.  You will never know how much of a difference the posters here made, especially when I kinda struggled to meet my commitments to posting on a regular basis.



I can say now that I see no need in providing any more updates, so I'll end up with the scoreline: 

Ball Hopper 1, Cancer didn't.


Quote from: whitey on August 08, 2022, 11:10:35 PM
Good man....BH

Your story, in part,, inspired me to have my first colonoscopy  just a week ago.


And that makes it all worthwhile for me...good man.


Title: Re: Medical Status of Boardmembers
Post by: gawa316 on August 09, 2022, 12:39:22 AM
Glad to hear your news BH.

Cancer is one bitch...my mother had breast cancer way back in the late 90's and is still going strong. Recently my aunt, my wife's cousin & aunt, and my boss all got diagnosed. Glad to say they are all doing well.
Title: Re: Medical Status of Boardmembers
Post by: johnnycool on August 09, 2022, 09:00:16 AM
Well done BH. I wish you well.

You've provided and interesting and thought provoking read, something for us all to take onboard.
Title: Re: Medical Status of Boardmembers
Post by: RedHand88 on August 09, 2022, 09:00:45 AM
Fantastic to hear BH
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on August 09, 2022, 09:08:59 AM
Great stuff BH, and its no coincidence that it happen when Kerry lifted Sam, what a fantastic summer you have had..

We have had some great chats and your support during my darkest days with my dad's and sisters cancer journeys has been uplifting..

So onwards and upwards to you
Title: Re: Medical Status of Boardmembers
Post by: Jeepers Creepers on August 09, 2022, 09:25:50 AM
Brilliant BH, great news after such a tough journey!
Title: Re: Medical Status of Boardmembers
Post by: gallsman on August 09, 2022, 10:03:03 AM
Brilliant stuff BH!
Title: Re: Medical Status of Boardmembers
Post by: Rodders88 on August 09, 2022, 02:43:26 PM
Brilliant News Fella  :)
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on August 09, 2022, 08:00:04 PM
Delighted to hear this news. You hear so many cases now where it doesn't work out so well so it's great to hear a good news story.
Title: Re: Medical Status of Boardmembers
Post by: Rossfan on August 09, 2022, 08:15:08 PM
Good news BH, best wishes for future.
Title: Re: Medical Status of Boardmembers
Post by: ziggy90 on August 09, 2022, 09:04:13 PM
Great news BH.
KRO.
Title: Re: Medical Status of Boardmembers
Post by: AustinPowers on August 09, 2022, 11:33:45 PM
Great news BH.

You're an inspiration.
Title: Re: Medical Status of Boardmembers
Post by: illdecide on August 10, 2022, 09:16:25 AM
Great news BH...As we've all said you've been an inspiration over the last few years and many a person would have thrown the towel in. So happy for you...go forth and multiply (only joking you're too old for that). I'm sure you're on cloud 9 and rightly so...Fair play.
Title: Re: Medical Status of Boardmembers
Post by: Nanderson on December 05, 2022, 05:37:24 PM
I'm getting a part of my large bowel removed because of Crohns Disease and was wondering how anyone else has managed to cope with having a colostomy/ileostomy bags?
Title: Re: Medical Status of Boardmembers
Post by: Last Man on December 05, 2022, 10:56:13 PM
Have you looked for any 2nd opinions or looked into alternatives. I certainly don't want to play down what you've had to go through but this is a drastic move and surely a last resort. Check out Ken D Berry MD on YouTube as a starting point. I listen to a lot of health podcasts and videos and I remember more than a few people who have resolved their Chron's and ulcerative colitis using strict elimination diet. Can't remember exact episodes but it might be an option. Best of luck anyway.
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on December 05, 2022, 11:15:28 PM
Sent you a PM there Nanderson...
Title: Re: Medical Status of Boardmembers
Post by: Wildweasel74 on December 06, 2022, 12:03:27 AM
Brother had to get half his intestine removed, cancer scare. Recommended he be put on a bag, there was a small  % chance he wouldn't need it. So he took that option but left small possibility of cancer returning. Your situation different in that it's related to Crohns disease. Doctor will go through all the options and risks. A friend been wearing one since his mid 20's, he mid 40's now, hadn't really a issue, but hard to get used to at the start.
Title: Re: Medical Status of Boardmembers
Post by: Nanderson on December 06, 2022, 07:18:20 AM
Quote from: Last Man on December 05, 2022, 10:56:13 PM
Have you looked for any 2nd opinions or looked into alternatives. I certainly don't want to play down what you've had to go through but this is a drastic move and surely a last resort. Check out Ken D Berry MD on YouTube as a starting point. I listen to a lot of health podcasts and videos and I remember more than a few people who have resolved their Chron's and ulcerative colitis using strict elimination diet. Can't remember exact episodes but it might be an option. Best of luck anyway.
Unfortunately the crohns scarring has led to me having quite a significant narrowing near the end of my large bowel and consultant said it hasn't responded to several different medications so surgery would be only way to stop it from eventually closing over and having to get emergency surgery when that happens
Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on December 06, 2022, 09:00:02 AM
Quote from: Wildweasel74 on December 06, 2022, 12:03:27 AM
Brother had to get half his intestine removed, cancer scare. Recommended he be put on a bag, there was a small  % chance he wouldn't need it. So he took that option but left small possibility of cancer returning. Your situation different in that it's related to Crohns disease. Doctor will go through all the options and risks. A friend been wearing one since his mid 20's, he mid 40's now, hadn't really a issue, but hard to get used to at the start.

Aye mother in law is finding it difficult though she is mid 70's and it's only been in a few months, she hasn't changed it so the pressure is always on father in law to get it done, but as Wildweasel said it should become a lot easier once you get a handle on it..
Title: Re: Medical Status of Boardmembers
Post by: Ball Hopper on August 11, 2023, 11:30:06 PM
Hi all,

Annual CT showed nothing of any concern and blood tests all good as well. 

Weight doing well (88kg, which is about as fit as I've been in years).  Diet is good - low volume in comparison to past years, but all reasonably healthy stuff.  Still unable to digest raw vegetables and haven't considered having a steak dinner.  No desire to resume alcohol either.  Have the occasional poor night re bathroom frequency, but that is usually linked to a new food.  It takes a while to develop the ability to digest some new foods (leafy greens is current problem), but start with a very small portion, take a week off before next larger portion and inside a month I'm able to handle a standard (what I call small) portion comfortably enough.  I'll never munch on raw veg again, so healthy snacks are more or less out of my diet.  Places with veg not overly-cooked (think Chinese stir fry) are also out.  There is plenty left that I have no problems with - fish, chicken, pork, ground beef/turkey, potatoes, rice, pasta and so on.  Ice cream also goes down well.

Oncologist decided that next colonoscopy will be Summer 2025 (5 years after surgery) - a clear result at that time will see me completely discharged.  Another CT next summer with blood tests every six months is also planned in case anything pops up in the meantime.  Keeping fairly fit as well...walking a good bit up to 5 times a week helps a lot.

As always, I'm very grateful for all the support I've received from the gaaboard crew.  This place was a great place for me to visit for inspiration. 

Hope everyone is doing well - I don't post as much anymore (how many times do I have to explain how the Kerry Championship works?), but I do check in an odd time to see what the mood is among the GAA fraternity.  Better team won the All-Ireland final this year - them bookies are rarely too far off the mark.

Everyone take care and plan a colonoscopy if due one by age or family history - early detection is so important to a good outcome.

BH







Title: Re: Medical Status of Boardmembers
Post by: Milltown Row2 on August 11, 2023, 11:59:26 PM
Was thinking of you today BH!!
Title: Re: Medical Status of Boardmembers
Post by: Tony Baloney on August 12, 2023, 08:21:39 AM
Good man Ballhopper. Glad to hear you are well on the mend. I'd reiterate your message about not avoiding any appointments or scans or ignoring symptoms and assuming bad things happen to other people. I have a follow-up colonscopy in the calendar for 2025 and I'll not be missing it!
Title: Re: Medical Status of Boardmembers
Post by: whitey on August 12, 2023, 12:16:06 PM
Good man Ballhopper.

Had my first Colonoscopy a year ago and since then 2 people I know in their 50s have been diagnosed.

If there is someone in your life who's stubborn and won't go for the procedure, just go ahead and order them one of the "at home test kits". I know someone who caught cancer early using one of these at home tests

https://www.yalemedicine.org/news/colon-cancer-home-test
Title: Re: Medical Status of Boardmembers
Post by: Rossfan on August 12, 2023, 03:18:59 PM
Best wishes Ball Hopper.
Title: Re: Medical Status of Boardmembers
Post by: Dougal Maguire on August 12, 2023, 05:48:22 PM
Best of luck BH. Some good advice on this thread. Regular visits to GP are essential. So many men almost see it as a badge of honour that they haven't Ben to the doctor in 10 years