Aggresive bladder cancer.

I've not heard of a neobladder demonstration - I'm intrigued!

Anyway, whichever you have, when you come round you should be pain free, either with epidural or morphine pump. Probably loads of tubes in different places, plus you will feel immensely tired & weak. They get you out of bed on Day 1 or 2 & encourage walking which will help bowel work again. Usually about a week in hospital during which you will start you get a bit stronger, start eating again and so on. Expect a few weeks before doing anything significant at home. Recovery is long & slow but eventually you will be fine. I was advised 3 months off work & needed every bit of that - did a phased return and by 6 months was back to doing all usual activities, but around 8 months before end of the day fatigue lifted.

Hope all goes well for you & feel free to ask any specific questions. I had Rc & neo 7 years ago.

Hi Paula I just like to share my cancer story. I was 70 years young when I had surgery to remove my bladder and prostate. I am 14 months post operation and no regrets. My operation was cancelled twice, third time lucky. We have great N.H.S. Regards my  stoma bag you soon get use to changing your bag. Your stoma nurse will show you and they will make sure your happy. My surgeon told me it would take me about 6 months before l got back to normal,  I still take things easy but every patient is different. To to finish I am doing most thinks I did before my operation, ie playing bowls,swimming, ride my push bike.I hope my story helps you and anyone else who is face the same treatment Bobby

Hi Paula

I am 7 weeks post cystectomy and have a neobladder. I feel well and scars healing well. With regards to surgery I can honestly say although I have had some discomfort I have not felt any pain even straight after surgery. I guess one of the hardest things for me was trying to sleep and getting comfortable laying on my back due to catheters in place. Once these were removed after 4 weeks life was a lot easier. So now I am using my new neobladder, but because it takes time to stretch to full capacity I am still incontinent and self catheterise daily. (which is easy when you know how). You get a lot if support from nurses to manage post op. My husband has been amazing and it is important to have really good support at home. With regard to work everyone is different but i have heard of people going back after 6-8 weeks. I am recently retired so am not going back to work but I feel I could go to work now. 

Whatever your decision I wish you well, there is a lot of support out there and here on the macmillan community. Big hugs