Hi to any keen golfers on here. I am awaiting my cystectomy and urostomy in mid January. I am wondering about the impact my changed circumstances will have on my golf?
I am Handicap Secretary for a Golf Society, plus have other golf buddies, so often played 2 or 3 times a week, The medical issues have stopped me playing either due to my physical condition post op and during chemo, plus isolating from Covid. Golf is (was) my main leisure pursuit, so it would be a huge blow, if I found that this was no longer possible. So feedback on your experience would be very welcome, hopefully confirming that I should be able to play with a stoma bag hopefully securely attached to my body.
The orifice of a stoma is normally just above the navel, and usually a bit to the right, unless you prefer it on the left.
There is no valve, it is an open conduit from the ureter(s) draining direct from the kidney(s). I only have one kidney now, after removal of the right one, complete with a tumour. So you have absolutely no control of the flow of liquid, which happens without any warning or sensation that it is active. With the bladder being removed as part of a cystectomy, there is no internal storage facility so it just has to come out as and when produced.
The stoma bag which acts as an external bladder, has a valve or outlet tube/plug at the bottom, which will be about groin level.
KidneyBeen
Played my first few holes on the course today - 5 in total. I had planned and wanted to do 9, but the heavy rain yesterday meant the golf buggy ban was reinstated - curses! However, I wasn't going to be denied, having waited so long. So I used my motorised golf trolley to help pull me around. It was great just to get out there again, and enjoy the very nice day, in the company of some of the Society members.
No problems experienced regarding the stoma bag. I wore tight fitting trousers with a broad belt to help support my abdomen, and didn't go too mad with the golf swing. The support belt should arrive shortly, as GP has approved the prescription request.
I was quite pleased with my effort, although not a particularly low score achieved, the range practice during the last fortnight obviously helped me to hit the ball reasonably well mostly. I stopped at a convenient place to get back to the clubhouse, as I started to feel tired. I will gradually increase the number of holes, particularly if I can use a buggy, once the course dries out again.
KidneyBeen
Good to hear you starting to get back to golf again.Do take care though,it is easy to over do it.Best wishes Jane
That's great KidneyBeen. Great info/feedback too.
I have to have my right kidney removed too once they've dealt with my bladder.
Can i ask when you had yours removed ?
I trialled using a leg bag plugged into the stoma bag today, to provide extra storage capacity.
This worked very well, and if I had needed to empty it outdoors, the outlet from the extension is just above ankle height, so easy to open the valve fairly serreptitiously behind a tree. This may well be required when playing a full round as this can take over 4 hours if slow players are holding up the group.
However, if I want to wear shorts in the summer, this wouldn't be an option, as leg bag would be exposed. I haven't told anybody in the Golf Society what actual surgery was done, although they were told I had a tumour in my bladder. Some may have realised my situation, but I'm not going to broadcast it. However, I think I would be honest if somebody were to ask about it - I'm not sure really, as it is very personal, so I may bottle it and not say exactly what the situation is.
The tumour was removed is all that really matters, the fact they took all the bladder, my prostate, sperm vesicles and some lymph nodes is probably too much information!
KidneyBeen
My right kidney complete with tumour and associated ureter was removed 22/01/21. Subsequent bladder tumour removed 18/01/22. so it's not been the greatest year of my life!
The adjuvant chemo in between, although it nearly killed me with toxic shock, didn't stop the original cancer from having spread into my bladder. The follow up cystoscopy was left too long, due to how ill I was after the chemo. So by the time it was found, it had already invaded the bladder wall and muscle, so complete removal was the only option.
KidneyBeen
Oh thanks. That is as you say 'not the greatest year'.
You sound remarkably upbeat and positive now. And good on you. I suppose you've had a lot of learning/adjusting to do this last year.
I had a bladder tumour removed last friday. I have a large tumour on my right kidney that will be removed by keyhole the Dr thinks. I haven't got a date for that yet. They want to sort my bladder first. I am awaiting biopsy results as to what the tumour was.
Obviously, until i know results, i am checking out my options in case of certain paths my journey may take. And that includes chemo, Stoma, Neo bladder.
Thanks for sharing your experience and the continuation of your living with new challenges/ways.
..Del
Deloo - Good luck with whatever treatment comes next. If a stoma is required, I've found it fairly easy to adapt to the new arrangement for liquid storage and disposal. Bag changing can be challenging, as the stoma often chooses the moment between thre changeover to decide to pass some urine.
I could only do 5 holes last week, as no golf buggies allowed due to wet ground. Today was the first 9 hole half round completed so far, using a golf cart. So I'm pretty tired now, but at least my comeback is able to proceed at last. I will see if I can add a few extra holes on Thursday.
KidneyBeen
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