RC and complications: Advice Needed

Hi CaroleLC,I’m sorry you are both struggling.Your husband has been through a lot with the sepsis and complications and these will have added to his exhaustion post surgery.Recovery rates vary but it certainly took me several months to shake off the exhaustion.Lack of appetite is common.I ate what I thought I could manage and eating little but often helped.I ate cheese and biscuits,soup,sandwich thins as I found bread too filling,omelettes,jacket potatoes,yoghurts,rice puddings,mousses,mashed bananas.Once my appetite returned I was able to go back to healthy eating.I kept a jug of water/juice handy and sipped throughout the day rather than drink a big cupful.It is difficult when you don’t feel hungry.It’s important to listen to your body during the recovery.If you need to sleep it’s best to sleep.Hopefully with time your husband will start feeling better and regain energy and appetite.I wasn’t given much after care either or advice.I joined this group when first diagnosed and I hope you find it as helpful as I have.You will get support here.Do you have support from family or friends? Best wishes Jane 

Hi and so sorry to hear what you are going through. Could be worth writing to the GP to ask if they will prescribe Fortisips/Ensure drinks to help his nutrition. 

For yourself please try contacting your local Carers' Association. The support they offer varies but it's worth checking. Could be telephone, coffee and chat, outings, signposting to other services, all sorts. And don't forget the Macmillan helpline is available 8-8 seven days a week.

Regards, 

Denby

I think it's not surprising that he feels exhausted. The set-backs have put him almost back to the start of the recovery process. If he can gradually build up walking - even if that is a short, slow shuffle at first - that will help. Little & often (eg a couple of spoonfuls every couple of hours in between small meals) is the key to getting nutrition in, concentrating on protein & carbs. For more liquid type foods, I used to have custard, petit filous, weak gravy granules/stock cube with complan, cheesy sauces, milky drinks etc

He probably needs to nap during the day. I used to do this sitting up, using pillows on the sofa. Having a snack & drink by the bedside may help when waking at night. Best wishes, hope he starts to feel better soon.

Thanks for your responses.  It's good to feel less alone. I don't think we were prepared for the 'ups and downs' of this journey but knowing that others have faced similar and made it through certainly helps

Your husband has had a rough time of it,I feel for you both.I found the recovery very slow going but when I felt better was able to paint,draw and do other hobbies I hadn’t had time for before.It can be an up and down recovery but the bad days won’t last forever.There are several of us here who are leading full lives since cystectomy.Love Jane