Bladder Cancer

Greenmaz . Hi Maz and welcome to this friendly and supportive group. Not had RC myself but many here have and I am sure others will be along to share their experiences. Best wishes.

Hi Maz,Welcome to the group though I’m sorry you find yourself here.I’m sure the men will be along to share their experience of cystectomy.I had mine done in 2019 and at that time was full time carer for my disabled mum.I was able to return to caring for her 8 months post op but I did have a slow recovery.It might be helpful to see whether you can get some assistance.
Most people do need some help for the first few days post op due to tiredness/weakness.We have had men on here who have recovered fairly well after 3 months though.Mum was in a wheelchair and had multiple health problems plus dementia so I needed extra  help from carers when she came back home from respite care.Feel free to ask any questions there are a few of us on here who have undergone bladder removal and are doing well.Best wishes Jane 

Hi maz and welcome.

Sorry to hear about your circumstances. I recently had my bladder removed along with the prostrate. This is a big operation and the hospital will make that clear to you if you decide to go that path. As winkers had said post op recovery is vital for this type of operation it takes time to rebuild your strength. Your consultant will go through everything with you the pros and cons. Please do not be too daunted by this when I was in hospital getting my RC there was  a man in his 70's in the next room to me who had one done. 

Don't hesitate to ask any questions the great people on this forum will be only too glad to help.

Best wishes

Mark

Hi Greenmaz,

I was diagnosed 3 years ago with bladder cancer and had chemotherapy and then bladder removal. I was just 70 at that time (my husband was 79 and was going to be my carer but  was taken ill while I was in hospital - heart attack because of the stress). I tell you this because today just over 2 years later we are both fit and active, making the most of our time together.

My operation was around 6 hours long and they checked me several times in the months before to see if I was up to it - as I was having chemo all that time, I was becoming progressively weaker but I kept exercising as much as I could.

I tried not to think of the operation as anything terribly difficult or gigantic because the simple truth was I had no alternative - my tumour was trying to escape through the bladder wall. 

In the end, I had my op and my husband had a triple bypass 10 days after that. So we were as weak as each other when we returned home.

Our situation was helped by the fact my daughter and her husband moved in with us for a few weeks. And I found that I recovered more quickly than expected as I had to help with my husband's recovery - in fact we propped each other up. I would imagine that you will be in that position too (but with less family help).

From my experience, I would say you need to plan thoroughly for your husband's stay in and return from hospital. We got some carers to come in for my husband in the first week - 2 hours each morning was enough for us but I should think you might need help yourself while he is in hospital as well in mornings and  evenings as well as  afterwards. We paid, but your GP might be able to get some free local help for you. 

Your husband will be visited by stoma nurses for help with applying and changing the daily bags for urine (and will probably be as pleased as I was that using a night bag means no waking up in the night to stumble to the toilet. The stoma nurses will sort everything out for him while still in hospital but having home visits afterwards builds confidence and you can ring for help too.

I would say that having a stoma may sound scary but in real life it is doable and once your husband becomes proficient it's all quite easy. My husband had been worried about whether I would end up an invalid. But only a few months after the operation he turned to me and said that everything was back to normal and how he had never expected it. I hope you will find that too.

All the best,

Latestart

Hi Maz, I had the surgery last November and have recovered well, with a few bumps in the road. Not as bad as I thought, though it’s major surgery of course.

Hi. I made a decision to have RC after a prolonged contemplation. I have discussed my reasons elsewhere on the forum. It was not an easy decision to undergo a major surgery but I’m nearly 7 months post op now. I had a robotic cystoprostatectomy with ileal conduit and was out of operating theatre after 4.5 hours. My stay in the hospital was uneventful and I was discharged after 4 days. I have recovered well since but the recovery has been very slow. I’m doing most things that I did before and have got used to stoma care etc. I’m an NHS consultant surgeon myself and have started back in work 3 weeks ago. I did my first operating list last Wednesday!!! My story will hopefully give you a positive perspective that life can be fairly normal after such surgery once you’ve recovered. This forum has been an immense help and you won’t find better advice and support elsewhere. Please feel free to ask any questions. Best wishes. X

Good to see you back doing your work hopeful and I’m sure the NHS will benefit greatly from a person with your experience from not just what you know in your field but also your life experiences recently

Ste

Thanks Ste. You’re absolutely right. Having cancer myself has made me ‘truely’ aware of what our patients with serious health issues and their families must be going through. Hopefully that will make me more empathetic. All the very best. 

Hi Hopeful786, congratulations on your return to work, it is a huge leap forward and back into Hospital in your capacity as a Consultant and not a patient.

Sending love, Ade xx

Thanks Ade. Yes it’s a big leap and I’m glad to get out of the house and into work after six long months! Hope you’re keeping well. Best wishes. X