Upcoming radical cystectomy

Hi pixie27 . Sorry to hear Hubby is feeling a bit down, but it is understandable. The medics always have to let you know the worst case scenario. Chemo doesn't help as it takes its toll on the body and mind. I did not have RC, but if it is any reassurance, I have monitored this forum for the best part of ten years and it is extremely rare that we lose group members. In those very few cases there has been something else going on. I am sure others will be along to share experiences. Best wishes.

Thank you Rily 

Hi pixie27,There Is hope.I was weeks away from being totally inoperable but am still here following cystectomy in Sept 2019.There are several of us in this group who have got through this surgery and are leading full lives.They do have to go through the risks and worse case scenarios.I had T3b G3 Squamous cell cancer.I found the recovery harder than the op itself as I was alone during the pandemic.I got lots of encouragement and support from here and that really helped.Love Jane

Thank you so much xx

It’s understandable that your husband is feeling depressed especially as he has lost his friend.I still remember how daunting it felt thinking about the surgery.If your husband can get as fit as he can be beforehand that will help.I didn’t have enough time to do this as everything happened so quickly.I’m happy to help if I can.Love Jane xx

Mine was non muscle invasive so I didn't have chemo, but I was told all the same statistics. Surgeon gave me some reassurance that those included everyone of all ages, fitness & stages of BC. My RC was 11 years ago, no significant complications & I was back home after 7 nights in hosp.

He will be extremely tired and weak at first & recovery can seem frustratingly slow, especially having had chemo. Encourage him to walk a little each day & gradually build that up (even if just a slow shuffle at first). Several short walks better than a long one, with plenty of rest in between. Appetite may be poor, but encourage little & often (at least a mouthful or two every couple of hours) concentrating on protein & carbs, but anything he fancies is OK.

Best wishes for both of you.

Thank you so much x

Hi pixie27,I was told to expect some weight loss.I was in hospital 9 nights and went home the following afternoon.I lost a stone in hospital as my bowels stopped working so I was nil by mouth for virtually the entire stay.My sister looked after me for the first few days as I was very weak and tired.I walked a little each day gradually building up the distance.Eating little but often is the best way forward.Initially I was on a low fibre diet to help the bowels recover.I added in my usual diet gradually.I couldn’t manage bread but found I could eat sandwich thins with cheese or meat.Cheese and biscuits were manageable,soup,yoghurts,mousses and snack type food.Basically whatever you fancy you think you can manage.Don’t worry if your husband doesn’t want a whole meal as appetite can be patchy.Recovery is slow going.I felt considerably better by 3 months and after 8 months was able to get my mother back home from respite care and continue caring for her.I did have to have help with her though.I complained a lot on here during the recovery mainly because I got depressed during lockdown as I couldn’t see my partner or mum.It wasn’t al bad though as I took this opportunity to start drawing and painting again and genealogy was something fun to do.I also read a lot and watched a great deal of tv.My aim was to get back to gardening which I love and I was able to get back to it after a few months.love Jane xx

Sorry to hear he is so down - it's a lot to deal with. My husband was told he would need cystectomy

Sorry he is feeling understandably low - my husband was devastated when he was told he needed a cystectomy. He was lucky and has not had to have it but is aware it may happen in the future. Time did help him accept the situation and I think making him feel that I needed him to stay around helped. Could the hospital arrange for him to meet someone who has been through it? Also trying to think of things to live on for - maybe a holiday, or other things to plan for. It must be so difficult for you - I hope you are getting the support you need too x