Neobladders in the UK

That's some story Sarah. I think it's more common in the U.S. than we might think, there's not enough awareness about women's issues post bladder cancer. There are quite a few women out here making noise, though, and changes are happening. You can see how many are networking over this forum and our email group....a lot!

If you're feeling better and up to it, perhaps you could volunteer to be a 'mentor', where women facing surgery could contact you via email or phone. If there is not such a program in place, well, there oughta be and it sounds like you'd be a perfect candidate.

Wishing you well,
Wendy

Hi Sally

Nice to hear from you, and I hope that all goes very well on the future cysto's. You have to make the presumption that if no-one said anything then all is well? But the fact that no-one does say anything means you have to wonder and possibly worry.
I do sympathise on the "feeling like a number", there is such pressure on the staff at clinics - the one I go to is always overbooked and the wait can be anything up to two hours after your appointment time. It can't be helped - the urologists are in theatre and then on rounds and if something goes wrong or they have an emergency, clinics take second place, and rightly so. However your well-being takes big dents in circumstances like this, and I strongly believe that positive support and a sense of being cared for is such an important part of recovery that it is almost as essential as the surgery....hope you can find it in your family and friends
Kind regards
Sarah

Hi Sarah

I was found to have the tumour 2 days after my 44th birthday. Had one chemo instillation after surgery. Check up 2 months later then 2 x3 months then 4 months. Now awaiting 6 month cysto in June.
Felt quite confident in my surgeon at first but when my cystos were originally raised to 3 months just went into day surgery, didnt see any one other than nurses on ward. It has been like this ever since. No sign of consultant not even a registrar. Proceedure done then packed off home and told to see my GP if any problems arise. It has made me feel just like a number, in fact it quite upset me when I last came out because know one had bothered to tell me findings or th lack of.
Love

Sally

Thanks for the welcome Rosemary and for the insight into non-insured health care in the States.
We are very fortunate in the UK to have the NHS (I worked in it for six years so I am a supporter), but it is a very complex beastie that works incredibly well in most ways, but goes through non-joined up phases in others. However it's not free...it's rather expensive and we pay handsomely for it through our taxation system. BUT, I wouldn't swap it for anything else, we are very lucky to have it and I think it's the best in the world of it's nature.
In the UK, the expertise in most disciplines is in the NHS, going privately (or through health insurance) just means you get a better room and quicker treatment for non urgent care. The NHS is where it's at for surgical expertise and oncology.
I really would be interested in what other UK based patients' experience of the whole neobladder thing was like.
Sarah

Hi Sarah,

I just want to say "hi" and I'm glad that you posted.  I won't be able to have a lot of input here, because I have not had the surgery.  I would like to make a comment here though, that there are many, many times that I wish that we had socialized medicine in the States.  If you do not have insurance, then I do not know how people stay alive in the States.  This may sound a little off topic, but to give you an example, my niece who was a student needed brain surgery and had no insurance, so the Baptist Hospital at Wake Forest very kindly agreed to do the brain surgery, but would not agree to keep her afterwards.  Her Mother had to rent a hotel room and nurse her while she recuperated. She was booted out of the hospital, pronto.   That was scary.

Anyway, I'm glad you found the site helpful and I'm glad you posted to tell us so.

Very best regards to you.  Maybe Tim will pop in here in a little while.  I bet he has some stories about his health care in the UK, too.

Your friend,
Rosemary

Hi everyone
I have been a "lurker" here for quite some time, but thought it was time I expressed my gratitude to the wonderful people who run and contribute to this site.
The reason I have finally posted is that I would welcome some feedback from other people who have had their treatment in the UK.
Some background first...
I am female and was 49 and premenopausal when I was diagnosed with T2 G3 and CIS. I had a RC with neobladder in July 2006. I had a phenomenal GP, and a superb surgeon, and can thoroughly recommend the British NHS for acute care. However, I was discharged with absolutely no guidance on what happened next, what to expect, how to look after my neobladder etc etc, and without any advice on hormone replacement therapy. When I woke up every night two weeks post surgical menopause drenched in sweat and miserable the (male) urologist insisted it couldn't be hormonally related....if it hadn't been for this site and the huge resource it has become to me, I would have been at my GP's office every week. With his help I got HRT and very sympathetic support.
I suppose that the luxury of still being here ten months later has allowed me to start reflecting on what has happened and to start to feel sorry for myself!!
Seriously though, the changes that this has brought have been so far reaching that I am beginning to marvel that the hospital let me out on my own, with no advice or accessible advice resource other then my GP, who although wonderful has no experience of neobladders and how to advise me on what I should be doing and what to expect.
My follow up appointments at the urology dept of the hospital where I was treated have been with a different registrar each time, and I have not yet seen the surgeon who operated on me, not even while I was in hospital! The only time I saw him was whilst I was in the OR having my cystogram 6 weeks post op, and he was passing through on his way back from theatre. He patted my foot and told me I now had the bladder of a two year old boy (?), I think he meant girl...and I was to discover that potty training was a solo effort, undertaken with the sterling advice I found on this site. I shudder to think what might have happened if I hadn't had blcwebcafe....
To end on a high note, I am immensely grateful for the expertise of the doctors and surgeons who cared for me, and I thank God every day for my life. I have two wonderful boys aged 13 and 16 and a very supportive husband, who has coped admirably with all the huge changes this has inflicted on him.
I am in no doubt that I must find the positive in every aspect of what remains to me, and I hope to be able to do this in good health for as long as is possible.
It just seems that my experience shows up the dichotomy between follow up care and treatment in the US and the UK - what do you think?

Sarah