Radical Cystectomy...

Hello DippyHippy and welcome to this friendly and supportive group, although I see you are no stranger to the community. Not had this op myself so not much help. Just to let you know many here have successful experiences and should be along when they pick up your post. Best wishes.

Hi Dippy,

I was 78 when I had radical cystectomy just over 2 years ago and life has been good for me, in fact an improvement from the year before the operation. Being male the operation included removal of the prostate which combined with the bladder problems meant I was off to the bathroom 4 or 5 times every night. 
The operation is major and took about 10 weeks before I was out and about taking short walks daily. I built this up gradually and now walk for one hour each morning which is more than most 80 year olds can manage. 
Whilst recovering in hospital I was given instructions by stoma nurses on how to cope with stoma bags and was not discharged until judged stoma competent.,My hospital stay was 9 nights in total and I was so glad to be home away from hospital food and constantly disturbed sleep.

Once home my stoma nurse visited twice in the first two weeks and set me up with monthly supplies of everything needed to live with a stoma. The routine for me is a daily change of stoma bag which takes only 15 minutes. There were a few embarrassing leaks at first until I perfected the changing technique but now have had no problems of that kind for more than a year.

 Now for the good thing about all this. SLEEP. After years of disturbed sleep, once connected to a night bage I sleep undisturbed for between 7 and 8 hours each and every night. This makes so much difference to the way I feel and my general outlook on life.I may be one of the lucky ones but I recovered well and have had no major problems. Just coming up to my next CT scan and subsequent meeting with surgeon so fingers and toes crossed everything continues to go well.Hope this helps in knowing what to expect.

Hi DippyHippy,

If you click on my name you will see how I described the op etc for my bio. I have a stoma and bags and so have described that but others here can tell you about neobladder. I have also written replies to others like you several times, which may still be findable as well.

The short answer is that it's a tough op and they keep you in hospital until you are up to living independently - in most cases around a week I think. 

During that time they make you sit out of bed daily and for longer periods from the time you reach the ward (I spent 2 days in the ICU, which is about par for the course I think) and in my hospital I had daily walking and exercises to do. The physios assess you and they let you out when they think you can cope.

Hospital food is bland but edible, it takes a while for the bowels to recover from being handled, chopped and sewn up again so that's what the nurses look for - re-established bowel habits, which can take a few days. Movement helps. At home I ate normally. 

I felt very good after the operation, probably because they'd saved my life, which was very cheering. I think you may feel the same, and especially as this isn't your 'first rodeo' by the sounds of it.

While in hospital the stoma nurses come and teach you how to manage the stoma and bags - you wake up from the op wearing a bag and they attach a night bag to it during the day until you move around, when you rely on the one stuck to you during the day. It seems peculiar at first but you know you'll be having one so nothing too difficult. Changing the bags needs a routine, which is very similar to changing a baby's nappy I think. 

When you leave hospital they tell you to keep moving - I borrowed a walking stick from the physios for a week and relatives used to take me out daily to walk around a local square - stopping for coffee and pastry in a nearby cafe (my days are very similar to yours). After that I increased my walks as I felt stronger, soon being back to normal.

They tell you not to lift anything heavier than a full kettle to begin with ( they don't want us to form a hernia after the stoma is created). 

We are supposed to drink a lot of water - 2 ltrs is average so I use large gym bottles so I remember. Writing and sitting can make one forget but we do need to keep moving so as to avoid blood clots etc. I used to set a timer, not least because the bag fills up quickly and you need to empty it regularly.

Stoma nurses will visit you at home and set up your supplies and delivery company, as well as helping you to deal with leaks - they will happen as you get used to things but should settle down once you have the right equipment.

If you can, get help around the house to begin with, but I could do more or less everything I used to from quite early on. I found it helpful to push myself a bit and not rely on others too much.

3 years on from the operation, I'm going strong, life is more or less normal, I sleep better than I did (nightbags are great) I wear the same clothes, eat what and when I like. Although I drink less alcohol as my kidneys aren't as healthy as they were - no loss. I'm in my 70s so am not bothered about climbing mountains or extensive trips abroad but people so all that with no bladder.

I hope you find this reassuring - there are many others here who can advise as well.

I suggest you also have a look at the Urostomy Association website where you will find information on life with no bladder as lived by all sorts of people. 

All the best,

Latestart

Wow, thank you, very very helpful and very reassuring...thank you for the details and timelines, yes your right not my first rodeo...radical hysterectomy first time round, not as bad as this operation I think, but I was up the day I came round from the operation.  Me neither, not wanting a great deal from life just being able to keep my own routines and what I like doing... excellent on the food front, I do like my food...!!!  I have dodgy kidneys anyway and up and down to the loo very frequently so no hardship there.  Go read your bio now...again thank you, very informative and makes me feel even more confident than I was before.

Thank you ...!!! Again I have been put at such ease... difficulties seem practically overcome, the same niggly problems seem to be had by everyone...leaks... I so agree with hospital experience, I was glad to be home from my first cancer operation which was two weeks in hospital...and the food...!!!  Very upbeat your words and it is such a good feeling that life has its quality after such an operation.  And the sleep thing...I'm up several times a night, a good through sleep would be welcome...!!!

I wish you all the best and I'll keep everything crossed for you and your CT scan...please let us know how you get on.

For your lifestyle, I should think you'll soon be back doing all you enjoy! 

Time in hosp depends on roboric or open & if any complications. I had open surgery neobladder and was the minimum 7 nights in hospital (age 57). Very weak and tired at first, plus nausea and qooziness from the anaesthetic. By the time I got home, I was able to manage stairs and all my personal care, but not any household tasks. One or two daily walks (or shuffles) round the garden, gradually building up distance. I wanted peace and quiet - spent a lot of time reading/watching TV and resting (including a daytime nap and early to bed). Eating little and often in between light meals - concentrating on protein and carbs.

At 6 weeks I started going out to leisure activities and was doing most chores - well spaced out. By 3 months I managed a phased return to work and by 6 months doing all usual acitvities. Was 8 months before I shed end of the day fatigue. It's said you should allow one month per hour in surgery for full recovery. As I had neo, I was doing 'training', which had its own issues, takes rather longer than stoma to settle down.

How did I feel? Relieved that I still felt me, no mourning bits missing. Mr T said I was a bit snappy - I thought I'd been very restrained! My emotions were a bit fragile - even around 3 months, I burst into tears at the GP over an issue about an appt time. Recovery felt very slow at times - I kept a diary of each new achievement which helped me see how far I'd come. Just pace yourself, rest when you need and you'll make steady progress. Hope all goes well for you.

My goodness, that is very real account and absolutely exactly what I was looking for, as with the last two replies, thank you so much...I am getting more confident that going through with this will be worth it all.

Had my RC in Nov 24, robotically assisted. Bladder, prostate, lymph nodes, seminal vesicles. 7 hours in theatre. Was ok afterwards, on strong painkillers. Was up and about quite quickly, and discharged home 4 days later. Daily visits by the cancer specialist nurse for 2-3 weeks after to check up on me and help me manage my stoma. Recovery was slow both physically and mentally, but I was out eating Christmas dinner a few weeks after surgery. I had a few UTIs which required hospital treatment. To be fair it took me about a year to feel normalish. I manage the stoma just fine, and sleep well. 

Most importantly I am currently cancer free. Which is brilliant.

I am certainly learning that it is a major operation and the recovery is slow but steady...thank you, I am getting very good information.

Hi DippyHippy 

i had a different surgery which was more extensive, but had my bladder removed in March 2020.

My recovery took longer due to it being a bigger surgery, but I’ve never regretted it, and am considered cured as I’ve gone more than 5 years without recurrence.

Life quickly becomes very normal with a stoma (I have 2) and you soon get into the way of managing. I would echo others in the tiredness directly after surgery-I was exhausted to begin with! 

However, I’m sure you’ll see from the very positive replies you’ve had here that many of us are living quite happily without their bladder! Not needing to get up in the night in the winter especially is a huge plus! You should expect to be back to all the activities you enjoy once you’ve recovered-just take it easy in the first weeks. Hope all goes smoothly for your surgery.

Sarah xx