It certainly seems daunting, but remember, the surgical team will be familiar with it! You will of course be asleep during the surgery. Depending on hosp protocol you will go to some sort of special recovery ward/HDU for perhaps the first 24 hours. Then to a normal ward. You will feel extremely weak & tired. They will get you up & walking (even if a slow shuffle) but probably only on liquids - may be a special nutrition drink. With robotic surgery your stay may be less than a week. With open surgery & no complications, I was the minimum 7 nights in. When you are able to start eating, you may not have much appetite.
Day by day you will improve but there will be blips along the way and recovery can seem frustratingly slow. Initially I could wash & dress myself but little else. I started going out to leisure activities at 6 weeks post op & managed a phased return to work at 3 months. Although back to my usual routine by 6 months, was about 8 months before I shed end of the day fatigue.
The main tips are to eat little & often, drink plenty, gradually build up walking but just go at the pace your body dictates. If you do too much too fast, you will pay for it the next day. Best wishes.
Hi Leo.It is a big op and recovery usually takes a few months.Pain wise I wasn’t in too much pain after the first day or two.I managed on paracetamol via a drip.I was up and dressed and walking/shuffling for most of the admission.I had a mixture of robotic and standard surgery due to complications.I needed help when I first came home as I was very weak and tired.I could wash and dress unaided but was wobbly walking.It’s common to lose your appetite so eating small amounts often is best.I felt better after 3 months but it was 8 months before I was able to get back to work.I was a full time carer for my disabled mother.It took a long time to fully recover but I was underweight and weak prior to the surgery so it was bound to be a slow recovery.I found the recovery tough mainly due to being home alone during the pandemic.There were a few ups and downs but I used the time to paint and draw and do other hobbies once I was stronger.If you are considering cystectomy get as fit as possible beforehand if you are able.It will help.Best wishes Jane
Hi Leo. RC is bladder removal right? I'm not up on all the terms yet (probably never will). I don't have a choice, they are taking it out.
I am worried that the surgery is risky, even more so in my case due to other medical issues. But my mind has been set as ease a lot just by reading how others have gone through it, are going through it, or are about to go through it.
You are not alone and this is a great place to share you concerns and feelings. I've found the folks here to be super supportive so if you need to talk, we're here.
Yes RC is a major surgery but you can do a lot to prepare yourself. Try to make as much exercise as possible before the intervention, stop smoking (if you smoke...), loose weight (if applicable...), eat fruits for vitamins. And keep closed to your family and best friends. Do what brings you the most satisfaction. My husband had RC in August 2022 (11 hours intervention). He spent 36 hours in intensive care unit. The first week was rather difficult (problems with stomach and bowels). When he came back home we used to walk everyday. First in our garder for 5 minutes and 500 meters after one week. He used to eat 5 times a day, small quantities. He returned to work 3 months later (he is a dcotor, so does not need to carry anything heavy).
He was 71 years-old at that time and had a severe heart attack in 2011 (after intense physical effort on a mountain bike).. He has a neo-bladder which is quite confortable BUT he has to awake every 4 hours, otherwise the neo-bladder will expand to much.
I had the RC back on October 23rd, having been highly recommended to the option by my Surgeon, Mr.Rami Issa. He insisted on performing the Robotic procedure himself, being a pioneer in its field over many years. He took the Prostate & Seminal Vesicles as well, plus 12 lymph nodes for checking (all of which were declared clear some weeks later). I had 17 staples across my navel lateral line which healed very quickly after being removed 10 days later. I was 6 days on the recovery ward, with little pain but quite a degree of discomfort. Getting the bowels going again took a few days, with prescribed laxatives to help (which I seldom need now). I'd elected for the Stoma, not a Neo Bladder, so it was purely a case of getting used to the changing of it every other day, & ensuring I checked for capacity on an hourly basis, especially as I'd had to increase my fluid intake. Getting around was a bit of a struggle, but like the food, 'little & often' worked best. I was back to my desk working a week after returning home, again, pacing my hours, but feeling improvement every day! The whole thing is becoming a bit of a blur now to be honest, but the worst part of it all for me was feeling so down when on the recovery ward, as I was surrounded by so many sick people. Really makes me now realise how fortunate I've been, so I hope this helps you forge a mindset that acknowledges that if you do have the RC, the result will be (to quote Mr.Issa) "cancer free & 90% cured, so get on with your life!"
That's a shame Leo :-( I'm in Epsom, Surrey, but the surgery was done in St.George's in Tooting, which is of course London! Would that be too far for you to travel?
