Bladder Cancer

Hi AnnieC,

Welcome to our friendly group. I’m sorry to hear your cancer is back. I had bladder removal back in 2019.I was a carer for my late mother then. It is hard to have to think of yourself because you automatically put the person you care for first. If you can get as fit as possible before the op that will help. A few of us on here have had this surgery and can help and support you through it so ask any questions.

Jane 

Dear AnnieC,

Welcome to the group. Being scared of the unknown is how we all feel before this op but I would encourage you to look at it as a helpful change and one that is perfectly doable. The following may give you some idea of what is involved and I hope it reassures you. It is probably true you need to put yourself first for a while but maybe not for too long. I am giving you an overview of how we managed as I think this may be useful for you in planning things.

I'm female and had my bladder removed robotically aged 70 (and at the same time my husband had a heart attack and a week later a triple bypass - he was 78 then). We employed a nurse for the first couple of days after he came home and after that a week of carers - each for 2 hours a day - for him not me. So I have some idea of what you are facing.

 After the op I was quite weak (having also had 4 cycles of chemo before that) and spent the first week after being discharged with my daughter and son-in-law and then we all moved to our home and my husband was released too. He was extremely weak. It was good to have them on hand to help for a few weeks in case of emergency and for eg food prep (as I've never been much good at cooking). They of course had their work and other commitments and soon were with us mainly in early mornings and nights. We managed much better because of them.

In fact having to help and encourage my husband - he seemed much weaker than me after his open heart op despite being a keen tennis player before that - meant I almost forgot about my own op and so I recovered quickly. For example, I kept up with the laundry which is something that modern machines make fairly easy in any case, but which made me feel that life was continuing, We have a cleaner as well but have had one for years now.

And the local stoma nurses were very good at helping me get used to the stoma, day bag and night bag. Using them soon became routine and I have managed very well with them for nearly 2 and a half years. I chose that as tried and tested technology and also because I did not feel that temperamentally I would enjoy having to train a neobladder. (Macmillan's booklet on Bladder Cancer is a good place to start as it explains these things simply and easily.

Before diagnosis I was very fit, walking a lot, going to the gym and doing Pilates, (mat work and reformer). The daily walking has kept going since then but the gym has been slower and I haven't got back to machines for Pilates - I have perhaps been over-cautious of my core because of the stoma but am now pushing myself on mat work . 

By the end of 6 months after helping one another recover without daily help for around 4 months, my husband and I both felt as if we were back to normal, although I have also had a few difficulties with Atrial Fibrillation which I think has been caused or at least exacerbated by the chemo. I now have a cardiologist at the same hospital, who has prescribed medication.

3 monthly checks with the oncologist after a CT scan and blood tests have kept me on an upward path and she also tried some immunotherapy (nivolumab). I managed 3 months of that but developed peripheral neuropathy and so had to have steroids to dampen down the tingling. That worked, although may not have done much for my osteoporosis - swings and roundabouts. I am about to have my first DEXA scan since before covid so we shall see. Since the end of April I am now being reviewed 6-monthly and the oncologist is pleased with me. 

Overall, I would not have believed before the bladder removal how straightforward it has been. I hope this has made you a little less scared. You can do it!

All the best,

Latestart

Thank you so much for explaining so well. I am lucky to have my daughter living near and teenage grandchildren who help with my husband. I am amazed at how many people have had this op with very positive outcome. This really has helped me understand what to expect and not so daunting. My urologist keeps telling me that I will hopefully be cancer free and I know it is all for the best. I will keep in touch with this group , it really has been so helpful, thanks again

annieC

Hi AnnieC,It’s best to have some help for the first few days when you come home from hospital.My sister stayed with me and brought food and drink and was on hand to help me up the stairs.It’s common to feel weak and tired to start with.You may find you don’t have much of an appetite and eating little but often is best.I used to snack and that helped to get back to eating larger meals.Build up walking distances gradually.It can take some time for energy levels to get back to normal.I felt much better by the end of the third month beginning of the fourth.After 8 months I was able to resume caring for my late mother but I did have to have 2 carers in to help.That was more to do with mum’s deterioration with dementia but I did find it hard bending over her wheelchair.I found the recovery tougher than the actual operation as it was slow and frustrating.But it is essential to listen to your body,rest when you need to rest but do try and keep moving every day.I still find I will feel sick if I do too much so try not to get to that stage.If you are having a stoma the important thing to remember is that it will shrink down in the early stages.You need to ensure that the hole in the bag is cut to the correct size to prevent leaks.Once your stoma settles to its size you can order pre cut bags if you prefer.You will get a template to measure the stoma with your supplies or you can use the plastic on the reverse of the bag.There is plenty of advice here and we will all support you through the surgery.Jane x