Surgery options

Hi Giziecat,I had bladder removal in September 2019.I had mainly robotic surgery but ended up with an abdominal incision as well.The surgery took nearly 10 hours and I was in hospital 9 nights.I have a stoma.I haven’t had any problems adjusting to life with it at all.I had a couple of leaks soon after the op but none since.I cared full time for my late mother and was able to resume caring for her 8 months after the cystectomy.Women have a hysterectomy and the vagina is shortened during cystectomy.I felt weak and tired when I first came out of hospital.I lost a stone in hospital and a few more pounds at home.My sister looked after me for the first few days.You will not be allowed to lift anything heavier than a kettle for the first few weeks.Recovery takes time usually a few months.I felt considerably better after 3 months but by 8 months I had much more energy.In the early days you probably won’t feel that hungry,eating little and often is best.I am cancer free and doing well and in my case the stoma was life saving.Best wishes Jane x

Wow thank you for the run down Winkers60. Hadn’t realised it took that long in surgery!!

Ive been told womb will go, ovaries also but will discuss when I meet the surgeon.

can I ask if you don’t mind why a stoma and not a neo bladder? 
Sorry if I’m being too personal and it’s fine to say mind my business. Just trying to understand the advantages of either!

Thank you for sharing I’m very grateful much love 

Lorraine x

Hi Lorraine,I had a chronic bladder disease for over 30 years before I got cancer.The surgeon didn’t think neo bladder was suitable because of this and I had already decided on a stoma anyway.The surgery was supposed to take between 5-6hrs robotically but my tumour was bigger than expected.That complicated the op and made it longer than expected.It is a big operation but I live a good life with a stoma.I’m able to do everything I did before surgery.I was busy caring for my mother post surgery and that was full time as she was disabled and had dementia.There is no reason once you have recovered that you can’t get back to child care for your daughter.The fitter you can get before surgery the better.Being fit already will be an advantage.I had been ill for some months before diagnosis so I wasn’t very fit before the cystectomy.I joined this group when I was diagnosed and scared and it’s been so helpful.I expect the others will be along to share their experiences soon.Love Jane xx

Thank you Jane I really appreciate your sharing and in my head I’m thinking I probably won’t manage a neo bladder as I’ve weakened muscle control now!!

I think the biggest part for me is my daughter has tended to act as if nothing has ever been diagnosed.

After having 8 turbts now and many tumours some cis high risk she still hasn’t accepted I have cancer. 
I guess it could be due to the fact straight after an op I’m back doing with the kids manage to carry on even when on treatments I master the side affects. I recover and forget till the next treatment, camera or op!!!

Now 4.5 years on it’s a wake up call for people who have relied on me heavy over the years.
Im only grateful my dear Mother who passed away last year with covid doesn’t need to get worried as like you Jane I was her main carer and any long term recovery would make it difficult emotionally 

Im very pleased for your support and will keep you updated.

much love 

Lorraine x

I’m so sorry you lost your mother to Covid.My mum died nearly 7 weeks ago.This group is good for sharing experiences and advice.I’m always happy to help if I can.Love Jane xx

Bless you so sorry for your loss as well Jane stay well x

Hi Giziecat,
I am a 55 year old male so obviously can’t comment on the female aspects of your questions.

However, I do have a Neobladder and am so pleased with how things have worked out.
I had a setback after the operation which meant my catheter remained for about 6 weeks. Once it was out there is a strict few weeks of training the Neo. That means emptying and flushing hourly for 1st 24 hours, then two hourly , three hourly etc to gradually stretch it.
I was dedicated to that and hardly slept that first week, but long term it may well have been the reason my Neo is 99% as per my old bladder. That and my surgeons amazing skill of course!
After training I was 100% dry during the day but wore Depends at night. I continued with them for maybe 15 months, but they were hardly ever wet towards the end so now nearly 2 years on I am 100% dry day and night. 
I get an urge to wake now too so stopped setting my alarm for midnight, 3am and 6am.
Plus I have not self catherterised since Neo training.

We are of course all different in terms of underlying health and fitness etc,  and I am a male so maybe my outcome is not feasible for a female. I don’t know, but you can certainly use my experience when discussing with your team.

Cheers,
Chasam

Good morning Chasam

Thst sounds amazing and so it’s deffo true hard work pays off as it did for you.

Im very grateful to hear your story as it gives me an idea of the process.

Im going to be 67 this year and have always had a weak bladder after having children so this will be discussed as to can I manage the muscle control!!

Im pleased your fully recover and it gives hope to me blessing to you.

Lorraine x

Hi Lorraine, sorry to hear the BCG hasn't cleared your problem. I've had 27 doses and 4 reoccurrences. I'm due to go for my next screening cystoscopy at the end of this month so my fingers are crossed. I totally related to your comment about your daughter's response. I think often our kids cant bear to face up to the possibilities of cancer. It's not meant to be unkind, they just expect their mum to be the strong one who copes with frightening things! My daughter either panics and thinks it's the end or seems to ignore my results. I know she loves me to bits. Good luck with the choices you are making. There are some marvellous folk on this site who have had RC, gone on to enjoy fit healthy lives, and they are an inspiration. x

Thank you Herothedog

I get we need to show strength and I’ve been through a lot in my life so I am a strong lady.

I always want to make things better for others to lesson the blow and impact yet this time im at the end of the road where I come first!!

Ive been on and off the site a couple of years and know so many lovely people are a wonderful in here so I do listen and I’ve given to others many years.

HAve a great day and I’ll keep you updated once appointment is made love Lorraine x