Just been advised I need Radical cystectomy

I'm female and actually chose surgery over BCG, so a bit different for me. It does all feel a bit overwhelming - I decided to look on it as a project, prepared food, clothes & entertainment for post op and did lots of abdominal exercises. In some ways, not having too long to wait is better than a long period of worry and uncertainty. 

Do you have someone to help at home post op? You will be very weak and tired at first, but have patience and gradually strength and energy will return. Emotions can be very fragile for a while too. I recommend eating little and often (even a bite or two every hour or so) and drinking plenty, also try to keep building up walking (slow shuffle at first) a little each day, in between lots of rest. Hope all goes well for you.

Hi Frank123,

Yes I can relate to your feelings. But what I will say is that 'life changing' and 'life saving' are 'big' phrases whereas the reality need not be so daunting. 

Yes it's a long operation and you'll need to pace yourself during recovery. But once you get used to having a stoma (or neobladder if you choose that) it's a matter of learning a few simple skills - emptying bags into the toilet (as a man you already stand up to do it, I'm very pleased to be able to empty and go without half-undressing!). Cleaning yourself - if you've ever changed a nappy you already know what to do. Plus with a stoma you use a night bag so you can sleep right through the night - great benefit!

Once used to a stoma and bag you hardly give it a thought, and nobody knows you have it (unless you tell them). And people have lived for many years without their bladder. 

I empathise with the feeling 'rushed' part though - procrastination is my middle name. But if you need it out the sooner the better in many ways, no dwelling for example, and afterwards you can get on with life. You may find you need to make adjustments to what and how you go about things but there are many here who have gone through it and know how it feels.

Macmillan has a lot of useful info about it as well which you can download.

All the best,

Latestart

Good evening, I had a radical cystoprostatectomy in March, I got told in February. Yes it's life changing, but you get used to it. You will have good and bad days to start. Help is there with stoma nurses etc. My wife was my rock she was amazing.   The other replies are spot on what they have said. Stay strong and get it done asap. I didn't want it at all, but there's no other choice tbh 

Hi Frank123,It is a lot to take in.It happened quickly  for me too.It is good to have someone around when you first come home.I could wash and dress myself slowly but my sister was on hand to make sure I could get upstairs safely and fetch food and drinks.After a week or so I was able to manage alone.You may not feel hungry at first so eating little but often as Teasswill has advised is best.It is important to listen to your body.If you do too much you will feel it and it’s best to take it slow and steady.Bowels can be a bit erratic post op,you may be given a low fibre diet to follow.I introduced my usual diet slowly.It shouldn’t take too long to get used to the stoma if you are having one.You will feel tired to begin with but energy picks up over time.Recovery can feel slow and have ups and downs.I remember by the end of the 3rd month waking up one day feeling as if I had turned a corner and energy really increased after that.I found having a gentle hobby helped with the recovery process.Before the surgery when I was anxious I did a lot of jobs I knew I would not be able to do for a while post op and that was useful.Best wishes Jane 

Hello Frank123. The 2nd anniversary of my RC is coming up in a few weeks. My diagnosis was T1G2 and was advised BCG but I just couldn’t face the idea of a long course and a high chance of recurrence. I thus opted for RC with ileal conduit. I had a robotic procedure which took 4 hours. I was discharged home on the 4th post operative day. I was very lucky to not have any complications. The surgery is big and you will feel very weak initially but gradually your strength will return. I was very active and fit preoperatively and was back walking long distances after 4 months or so. You will get used to managing your stoma quite quickly. It just takes extra 10 minutes in the morning to change the bag. I’m back doing almost everything that I was doing before (except heavy lifting and certain other exercises to avoid parastomal hernia). I was back in work as a Consultant Surgeon after 6 months and having a stoma hasn’t caused any handicap in work, except that I take a ‘toilet break’ to empty my bag, when doing a long operative case. There is no doubt that RC is a major and life changing operation but my story will hopefully show that there can be good life after RC. You will, no doubt, have lots of questions as the op date comes closer but please don’t hesitate to ask as there is a wealth of experience amongst the members of this forum. My very best wishes.