Caring for someone after radical cystectomy.

Hi Son turbt . Good to know the decision has been made. There is now something positive to focus on and make plans. Sorry, I can't help with your question, but I am sure others will be along to help. Best wishes.

Hello,

Do you know if your son will have a stomy or a neo-bladder ?

A stoma. Thank you. 

Hi,Your son will probably feel very tired and weak to begin with.Lack of appetite is common after cystectomy.Eating little but often is easier than facing a big meal.Snacking can help to build up the appetite.My sister helped me up the stairs and fetched food and drinks.I could shower unaided but was wobbly.It is good to have help for the first couple of weeks as that is usually when you feel the weakest.It’s important to rest/sleep but you need to walk/shuffle too.Love Jane 

Your son may not need much help.The hospital usually want you to be able to manage the stoma unaided before discharge.It is good that he will have your support.There is plenty of advice and support here for you both.I was able to manage at home on my own after the first two weeks.My sister left out non perishable food where I could easily reach it without bending.Opening the fridge was trickier as it’s a small low fridge but I slid down slowly to open it.Your son should prepare for some up and down days as that appears to be the nature of the recovery.I took the recovery time to do hobbies I hadn’t previously had time for like painting and drawing.I’m a keen genealogist and that was a good interest to have as I could lie on the sofa and use my laptop.I was able to return to work after 8 months but felt very much better after 3 months.I think it’s important to listen to your body during the recovery.I found if I did too much I would start to feel sick or get abdominal twinges.Your son is young so he may bounce back quicker.I hope this helps.Love Jane 

Thank you Jane. You are so helpful and caring. Cath x

Thanks Cath,It’s good to be able to help if I can.I have had so much support here especially since my mother died last year.Cystectomy is a major operation but you can lead a good life once you have recovered.Love Jane x

Hi Son turbt 

I see you’ve already had some good advice from Jane. I’d definitely agree that tiredness is a big issue after major surgery like this, so it’s good that your son will be able to start his recovery with you to take care of him in your home. 

I’d like to offer a bit of practical advice about things which helped me after major surgery and gaining two stomas-a waterproof sheet for the bed and some puppy pads. I hope your son will not suffer from bag leaks but they can happen and it’s very disheartening when they do. Being prepared helped with that for me. Don't be surprised at the level of tiredness, and let your son rest when he needs to-even small things can leave you worn out at the start of recovery. You should get some help with the nephrostomy if he ends up with one-maybe from the district nurse? 

Make sure he has plenty fluids, and don’t expect him to want big meals-little and often is easier. I’m 3.5 years on from my surgery and find it hard to remember what life was like before this, but be assured that you can live a full and normal life with a urostomy. I wish your son every success with his surgery.

Sarah xx

Thank you Sarah, very helpful x

My son had his Radical Cystectomy yesterday. He's back on the ward now and so far coping well. Thank you to all who offered me advice and support, it's really helped me. I'm so annoyed though, as I've got Covid for the first time and can't visit! What rotten timing, but thankfully we can video call. Much love to all, this group has been a Godsend. xx