Hi all,
Unfortunately my Bcg treatment has not worked so after 3 years of different treatments, and operations it looks like my bladder is for the chop! Whilst I'm not happy about this, I have run out of other options and if it means I can start living again then so be it.
My question is what's people's experience if neo bladder or urostomy? Pros and cons. Should j just go straight to the urostomy.? I'm a happy hacker horse rider and want to continue .
Current diagnosis is high grade non muscle invasive . Bladder is carpeted with it . Mitymicin hot and cold didn't work either x
Thank-you xx
I think it was between 8 & 10 hours. I wasn't allowed in hospital for the 11 days he was there bit of a shock when I picked him up he had list over a stone in weight. Obviously lots of pipes & kidney stents, 6 weeks later they removed all the pipe work & put back kidney stents, unfortunately in removing the lymph nodes around the pelvic area they found 1 was cancerous so.he then had to have chemotherapy, which that nearly killed him so much so they had to stop. However a good year & he was back to normal?? And things have just got better & better. I cannot imagine how hard for a woman especially catheterisation. I'm so glad it worked well for you. My husband was so brilliant. Really easy to look after I don't know how people would cope if they lived on there own xxx
You're so brave
Love Kim ️
Kimdav
Hi Kim,The weight loss is common.I lost a stone in 10 days in hospital and was told to expect that.I was very skinny when I came home.I had some help at home for the first week and a half but managed on my own after that.I remember before your husband had the op it’s brilliant to hear how well he has done.It will be 5 yrs since my op on the 30th Sept the time has gone so fast.Love Jane x
Hi Pugsy not an easy decision and I only give some experience of neo from male point of view.
Still feel very relieved I chose neo , 5 years on and only downside is I still leak a little during day and occasionally at night , especially if I drink too many beers lol.
I don't self catheterise although have done recently due to unknown chronic pain occasionally, can be month in between,which has come out of the blue. Reasons unknown. Not sure if helping with this , time will tell.
Apart from that normal life but always have that 2 or 3 hrs in my head where I need to find a loo. Can be awkward on long journeys etc , takes planning.
Good luck with it all.
Hi. My husband had a radical cystectomy in May. He's had no problems with the stoma and we just accept it as the new normal.our daughter has a horse and a friend who has a horse. The friend has had a stoma for a few years. She hacks out and also competes. No problem. Hope you get on okay. Just take your time when recovering. Best wishes.
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