Radical cystectomy

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Hi all 

My mum is going to have a radical cystectomy. She is 76 and really worried about it. Is there anyone of a similar age that can offer any advice?

thank you x

  • Hi  and welcome to the group. I have not had RC but many here have and should be along to offer help and advice. I hope all goes well for mum. Best wishes.

    Best wishes to All,   rily.

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  • Hi Shell1234purple,Welcome to this friendly group.Cystectomy is a big op but we are here for advice and support.Is your mum having a stoma ? I’m younger than your mum but went through this surgery in 2019.It’s usual to spend some time in intensive care/high dependency straight after the op just due to it being major surgery.They offer plenty of pain relief if needed I wasn’t in too much pain but you do feel incredibly tired.If your mum is able to get out of bed and move around this will help the bowels to start working.She may be shuffling to begin with.Pack loose fitting clothes and slippers/shoes that slip on to save bending.When your mum comes home she will need someone to help out for the first few days at least.I could manage to wash and dress myself but my sister fetched drinks and food and went shopping for me.Eating little but often is best as it’s common to lose your appetite.Build up walking distances gradually.I felt very much better after 3 mths but it was 8 months before I went back to work.Best wishes Jane 

  • I was also somewhat younger when I had my op, but they won't offer it unless they deem the person fit to cope. I have known plenty of people your Mum's age, and older, who have successfully gone through it. Often the anxiety in advance is worse than the actual experience. 

    Many hosp have an enhanced recovery programme involving special nutritional drinks and early mobility. Time in hosp can vary but expect around a week. Initially she will feel extremely weak and tired, but day by day she should gradually improve. Overall recovery does take several months, she may feel a bit down about the slow progress. Depending what sort of activities she usually does, she will be able to start doing more normal things after about 6 weeks. 

    Initially she will need someone else to do household tasks, cooking etc. She may not have much appetite, best to have little & often (even a few spoonfuls every couple of hours), concentrating on protein & carbs. Drinking plenty and trying to walk (shuffle at first) a little further each day - pottering at home, or round the garden. Several short walks with rests in between, nap during he day. 

    I hope that doesn't sound too daunting. Best wishes for smooth recovery.

  • Hi. This is what I may be facing on the coming months and following chemotherapy. I am sending you my love and best wishes. I totally agree with the comments, I am sure this would not have been suggested if they were not confident your mum is a good candidate for the operation. Xx
    Liza x

  • Hi Jane. 
    This really is an amazing group! Everyone is so kind. 
    yes she will have a stoma. How easy is this? It is that part that is worrying her the most. 
    thank you for all the great advice. 

    Michelle x

  • Thank you for the advice. It is so daunting for her but she is in good health s hopefully it won’t be too difficult for her. 
    Do you have any advice on looking after a stoma?

    Best wishes 

    Michelle x

  • Hi Liza. 
    thank you for your kind words. I hope that everything goes well for you in the coming months. 
    Michelle x

  • Hi Michelle,I’m sure your mum will adapt to having a stoma.There will be stoma nurses at hospital to show her what to do.The stoma changes shape and shrinks down in the early days of having one.It’s important to cut the hole in the stoma bag/pouch so that it fits well to prevent leaks.Once the stoma settles shape you can get pre cut bags/pouches.I’ve been lucky and have used the same make of bags since the start.Some people do have to try a few different makes before they find one that suits them.At night the bag plugs into a much larger night bag so you can sleep through without having to empty it.Let us know if your mum has any particular worries/questions as there is usually someone who can help.It does all seem daunting at first but it’s amazing how quickly you can get used to it.Does your mum have an op date yet ? Jane x

  • I had mine 2 years ago aged 76. Had it done robotically at Leicester. I honestly can say that it is nothing to be afraid of. Had hardly any pain afterwards. In hospital for 10 days and doing well. Just had  my 2 year scan and all is good. Wish your Mum good luck xx