Hello—just joined

Hello Twins and welcome to this supportive group. Not had bladder removal myself but many here have and should be along with some help when they pick up your post. I did have chemoradiation which I tolerated well. I hope all goes well. Best wishes.

Hi Twins,

I had muscle-invasive bladder cancer for which I had Gem/Cis chemotherapy and cystectomy with a short course of immunotherapy (but not the type your husband has had). This was 3 years ago so newer types are now available.

If you click on my name you can read my bio with more about my journey. (I had no BCG as my cancer was muscle invasive from diagnosis). 

I responded well to treatment and had quarterly reviews by Urology and Oncology for the first 2 years post-op. Oncology now sees me 6 monthly while Urology has extended to yearly.

I recovered quickly from bladder removal and gaining a stoma, I am now so used to stoma bags I forget I'm wearing them.

And,  coincidentally,  the email I opened immediately before this gave me my report on my recent CT scan (Pelvis and chest): no recurrence and no metastasis.

Pretty happy with how things are turning out and hope you are able to see the same soon for your husband.

All the best,

Latestart

Ps good luck with the biopsy

As far as cystectomy goes, he will feel exceedingly weak and tired at first. I was in hospital 7 nights (I had neobladder - internal reconstruction) which was about 8 hours in surgery. Recovery can seem very slow, it does take about one month for every hour in surgery to fully regain energy. Having said that, I started going out to leisure activities at 6 weeks (when allowed to drive again) and phased return to work at 3 months. By 6 months I was doing a normal week of activities but still very tired at the end of the day. 

Tactics to help with recovery are to eat little and often (small snacks every hour or two in between light meals) and drink plenty. Build up walking a little more each day (several short walks/potter round the house) in between plenty of rest. Just go at the pace the body dictates - if you overdo things, you pay for it the next day. 

Hope all goes well.