Radical Cystectomy

Hello Leoheart and welcome to the group, although sorry to hear of your recurrence after this time. I've not had removal, so unable to help. Always a bit quieter here at weekends, but I am sure someone will be along to share experiences. Best wishes. 

Hi Leoheart,Welcome to the group.I’m sorry your cancer has come back.It’s almost 2 years since I had a radical cystectomy.The best advice I can give you is to get as fit as you can before the surgery.A healthy diet,exercise and good sleep if possible.Mine was done urgently and I wasn’t well at all beforehand.I had an ileal conduit but I haven’t had any problems living with a stoma.I got through the op relatively unscathed.I did have the common complication of paralytic ileus where the bowel goes to sleep.It’s usual to be taken to Intensive care/high dependency straight after the surgery because it’s major surgery.I was moved to a urology ward after about 14 hours in ICU.I was offered plenty of pain relief but was so sick on morphine I managed on paracetamol after the first day.I chewed sugar free gum as requested by the hospital to stimulate the bowel to work.I didn’t feel like walking but made myself get washed and dressed and walked up and down the ward holding onto the wall bars.You will probably feel weak/wobbly and tired for some time.Take in loose fitting clothes for comfort.You will probably need help at home for the first few days.I found the recovery slow but you have to listen to your body.I ate little but often and took short walks.I felt better after 3 months but had improved a lot after 8 mths.Before the op I tried to do chores that I knew I wouldn’t be able to do straight after the surgery,eg heavier housework,cleaning out the drains.I found this helped keep my mind off the impending surgery.I hope you find this group helpful there is plenty of advice and support here.Best wishes Jane

No Worries rily Thankyou For Your Kind Thoughts And Best Wishes To You . 

 Hi Jane Thankyou For Your  Information / Advice Yes Am Keeping Fit As Possible Plenty Walks Ect. As They Say You Recover Easier / Quicker Post Op if You Are Relatively In Good Health Which I Am - Sorry To Hear You Went Through The Mill Somewhat Before Your RC To Be Honest Am Not Concerned / Worried About The Op Itself Its Just Good To Hear Peoples Experience Of Post Op Recovery Thats Uplifting For Me And Am Sure Am Going To Be Ok I Have My Wife / Daughter At Home And Plenty Of Family Support Ect So Thankfully No Worries There . Much Appreciated And Best Wishes To You . 

Hi,I think most people would say the recovery drags on a bit but provided you are prepared for that you should be fine.It’s good that you have some support at home.My sister looked after me for the first few days but I was able to manage on my own after that.It’s common to lose weight with a RC,I lost a stone but was nil by mouth for virtually the whole hospital stay.I was able to return to full time caring for my elderly disabled mother 8 mths post op.Best wishes Jane

Yes Forewarned Than Forearmed Is Good To Hear Thankyou And Am Prepared To Envisage What Could Be A Fairly Long Road To Full Recovery . Glad To Hear You Got Through It Ok Jane Take Care / Stay Safe . All The Best To You . 

I expect the others will be along to share their experiences.I wish you well moving forward.Jane

I had my RC 10 yrs ago age 57. Everyone seems to underestimate just how tired & weak you feel post op & how slow recovery can feel. I had no significant complications, spent 7 nights in hospital. When i got home, I was able to do my personal care but little else. My tips are to build up walking day by day - two short walks better than one long one, plus pottering at home. In between, plenty of rest - don't push yourself too hard or you will suffer the next day. Eat little & often, eg a few spoonfuls or a biscuit every couple of hours in between small meals, even if you don't have much appetite. Whatever you fancy, but concentrate on protein & carbs. I preferred finger food or things easy to manage with just a fork or spoon. Also plenty of liquid, gradually, throughout the day. 

I started to go out to leisure activities about 6 weeks post op - paced myself so only one signifiant activity per day. Managed a phased return to work at 3 months & doing all usual activities by end of 5 months, but around 8 months before shed end of the day fatigue. Then i was able to rebuild my fitness so i ended up fitter than pre-op. Hope goes all well for you. 

Hi Teasswill Many Thanks For Your Message . I Will Bear In Mind Much Of Your Experience Post Op / Recovery And Hope I Am Similar To Your Good Self Ie Only A Week In Hospital I Have Been Told A Fortnight Is The Norm .  . I Take Pride In My Fitness I Dont Smoke Drink Little Alcohol Ect. So Am Sure This Will Put Me In Good Stead For Whats Oncoming . Grateful To You For The Sound Tips . Take Care / Stay Safe And Sincere Regards . 

Hi Leoheart,I was discharged on day 10.I started off on the enhanced recovery programme with robotic surgery,chewing gum to stimulate the bowel afterwards and plenty of fortisip and fortijuice drinks.This had to be abandoned when I had the bowel complication.If I hadn’t had that I would probably have been home quicker.The surgery started off robotically but ended with an abdominal incision as well.My scars faded well and are barely visible.It’s good that you are fit,that should really help you get through the op and the recovery.Jane