I am awaiting a radical cystectomy for bladder cancer

Hello giggus and welcome to the group. Not had this myself but we have many members living active lives post cystectomy. Late evening now but I am sure others will be along to share experiences with help  and support going forward. Best wishes. 

Hi giggus,Welcome to the group.Most people find it takes a few months to recover from a cystectomy.I had mine 4 years ago.I felt better after 3 months but it was 8 months before I returned to work as a full time carer for my mother.If you are fit and active that should help recovery.You can expect to feel very tired post op but gradually energy levels pick up.You can still lead a full life after cystectomy.I have a stoma but others here have neo bladders and can advise.Feel free to ask any questions.It is a daunting prospect facing major surgery but we are all here to offer support.Best wishes Jane 

Initially you will feel extremely weak & tired, but this will gradually lift. They will get you up and walking, even if it is just a slow shuffle at first. There are a few main keys to recovery - gradually building up the walking (a little further each day, but two short walks are better than one long one) - plenty of rest (daytime nap) - eat little & often (even a  few spoonfuls every couple of hours in between light meals) - drink plenty - and pace yourself! If you push too hard & do too much one day, you will pay for it the next. 

When I came home after 7 nights in hospital, I could do all my personal care with adaptations eg sitting down to dry after a shower, but relied on others for all housework, cooking etc. By 6 weeks post op I started resuming going out to leisure activities & at 3 months a phase return to work. By 6 months was doing all usual things but didn't shed end of the day fatigue until about 8 months. 

Be prepared to have some emotional ups & downs as part of the recovery. It may seem frustratingly slow at times, but have patience and you will gradually pick up your life again. Best wishes.

As Teasswill has mentioned you will feel tired and weak post op.If you live on your own it will be helpful to have some help at home for the first few days at least.I managed my personal care but was wobbly going up and down stairs and my sister was on hand to make sure I didn’t fall.She fetched drinks and food.When she went back to work an elderly relative came to help me.After the first 2 weeks I was able to manage at home alone.My sister left out non perishable foods at a height I could reach without bending.She filled the kettle for me at the start of the day.The fridge was slightly more challenging as it’s low down but I gently slid down and back up to use it.Jane 

Thankyou so much for replying I am so very grateful for your comments and wish you continued good health

Thankyou for taking the time to reply I have been so worried about going forward but the positive messages I have had have made such a difference I wish you love for your forward journey

Thankyou for your kind te

Thankyou for your kind reply I am so grateful to the kind people who have taken the time to write and reassure me it’s made such a difference to the way I view my forthcoming operation love to you all

It is natural to feel worried but hopefully we can reassure you a bit.It is a big surgery but once you start feeling better you can look forward to getting on with life.It is suprising how quickly you can adjust to having a stoma or neo bladder they both come with their own challenges but there is advice here.I used the short time I had pre op to do some heavier chores and housework which took my mind off the impending surgery.I found it helpful to have gentle hobbies I could do once I felt better.The recovery period can drag on so it’s good to have something to pass the time.Love Jane 

Hi giggus 

You've had some very good replies here which I hope have reassured you about the future. My bladder removal was part of larger surgery so would be different, but my father in law who is 78 had this surgery at the start of September. He too was a very active chap, and fit for his age, so this will stand you in good stead for surgery. 

He has, I think, been surprised by his levels of fatigue, but is having no issues managing his new stoma. He has lost a considerable amount of weight but recently has had a meals on wheels service which is proving to be excellent, and he is enjoying so hopefully he will gain some of what he has lost. He is still resting a lot, almost 2 months down the line and taking things easy. But he also has a very large hernia (which was there pre surgery but could not be fixed) so that makes his life a bit more difficult as regards his mobility. Best wishes going forward with your own surgery. 

Sarah xx