Update on dad

Hi Owen

That’s brilliant news that there appears to be no lymph node spread; that gives him an excellent chance of long-term survival after the Cystectomy. The Radical Cystectomy will involve removal of his bladder, prostrate & surrounding lymph nodes, which will all then be analysed for microscopic cancer spread post-operation. He should have the choice between having a urostomy bag with an ileal conduit or a neo-bladder.

The advice I was given, when RC was recently being discussed for myself (with a fair wind I will hopefully have that operation in the next couple of months) I was given the advice that the RC operation was the equivalent of running a marathon - get yourself match-fit! I was advised to take an hour long brisk walk (hills / heart pumping) twice a day, every day leading up to the operation.

Best wishes to you, your dad & the rest of your family at this difficult time.

Gareth

A mere babe at 66! Depends if he has robotic or open surgery & if any complications occur as to how long in hosp. expect a few days to a week. Initially he will feel extremely weak & tired, with various tubes but shouldn't have any pain. They usually get you out of bed within a day, to start walking (slow shuffle, accompanied by drips). He may be given special nutritional drinks.

Recovery can seem frustratingly slow. Important not to overdo things, or you pay for it the next day. Try to walk a little more each day (2 short walks better than 1 long) with lots of rest in between. When he can eat, little and often eg a small snack every couple of hours in between small meals, concentrating on protein & carbs, and plenty of fluids. When I came home I was able to wash & dress myself but little else. By 6 weeks he should be a lot better eg able to start driving again, but still with lots of rest. By about 6 months I was back to doing all usual activities (including commuting to work) but it was 8 months post op before I finally shed the end of the day fatigue. Allow one month for every hour in surgery for full recovery. 

Emotions can be up and down post op & he may appreciate peace and quiet & avoid needing to concentrate on anything important.

You will all need to be patient too! Hope all goes well for him.

Hi Owen777,Your dad will feel tired and weak to start with but over time energy levels will pick up.Any pain will be well controlled with Morphine but he may not need it for long.I managed well with paracetamol only after the first couple of days.I was in hospital for 10 days.Teasswill has given you good advice.It’s important that your dad listens to his body.If he needs to rest he must rest.I felt very sick if I did too much.It’s not uncommon to lose your appetite along with weight post op.It’s best to eat little but often.I lived on snacks at the start of the recovery.Your dad is likely to be on a low fibre diet to start with while the bowel recovers..

Emotionally the surgery can take a lot out of you and you can feel depressed and tearful.I was told by one of the dr’s on the ward that this is quite normal following a big operation.I think that helped me on days where I didn’t cope as well mentally.I found it was helpful to sit in the garden and enjoy the peace and quiet.
Your dad will have good days and bad days post op it can feel very up and down during recovery.
When I felt a bit better at the end of the third month I started to paint and draw and did genealogy to pass the time.Recovery can seem very frustrating but it can’t really be rushed.

There is plenty of advice here and we will all help to support you and your dad.Love and best wishes Jane x

Hi Owen777, I have no experience of RC as I am on Bcg treatment, I just want to send your Dad my best wishes for his opperation hope he has a good recovery with you at his side. Lynn