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Alice..i think you are just reeling from the effects of the BCG right now which is putting you in a negative frame of mind. Don't put the cart before the horse. Wait and see what the new uro finds in there and make sure you get the pathology report.
As for my new diversion i'm completely happy with it...i still have a bladder...its just in a different place. Recovery varies from person to person...but you do recover and can do pretty much everything you did before. I'm 4 l/2 yrs out and i now wonder why I made such a big deal of it...easy for me to say right!!!
Just take it a step at a time....and make sure your new uro knows of your reaction to BCG. Pat
First I have to say that Im a man so I can't really comment too much on the effects of this operation on a woman's physiology except to say that I have heard a lot of really positive stories about women who have been through it. There's a woman I know here in my town who I chat to occasionaly who has had her bladder removed and is now back at work doing, to my mind, a pretty strenuous job working with young children. There are also many women on the site who are going through or have gone through your circumstances.
Perhaps if you post to the womens section on this forum someone will be more helpful than me on those specifics such as how the vagina is affected. I do remember being pretty freaked out before my op though and, although it's not the same exactly, the list of giblets they take from a man during a cystectomy had me feeling pretty queasy. I read a lot of things like the material you quote and while it was useful it didn't really prepare me for how I would feel. And I don't mean it's a lot worse - in a lot of ways the surgery was nowhere near as bad as I was expecting. Sure there was some pain but a lot of the sensations were more like discomfort and the inconvenience of tubes and bags dangling off you all the time. Like everyone else I got quite undernourished too.
I had the same operation as Zachary - I haven't had quite as much hardware installed as him - but I'm working on it!
The weeks after my surgery, like everyone else (again), I felt understandably rough. But little by little I got stronger and around about the 2 month mark was beginning to feel a lot more normal. 8 months on I don't have much of a sensation of something having been taken away now. The wounds have healed. I get the odd twinge but really nothing to be concerned about. My days now are totally normal. My nights a bit damper but improving all the time.
In terms of relationships, Im lucky enough to be with a really understanding partner. If I wasn't I probably would have anxieties about the prospect of being loved again and having to broach the issues of my continence and the fact that my erectile function isn't quite what it used to be. But in my heart I'd like to believe that, ultimately, if you find the right person then it really shouldn't matter to them if you have an elephant's trunk grafted onto your forehead. And that my illness also serves to weed out the time wasters! I know sometimes it doesn't feel like that but if the situation was reversed I wouldn't give a rat's ass if the person I fancied had been through something like this. In many ways I would respect them more for having played so well with such a tough hand. The things that make the experiences of being with other people great in whatever capacity; friend, girlfriend, ships passing in the night, have not been diminished at all by my bladder cancer. My relationships with certain people have actually become a lot better.
Sexually, as I said above, it has made a difference to me. Mainly, my erectile function has suffered. But it is actually starting to get back to normal without meds. I have the meds but I'm kind of seeing what happens without them. My partner and I did have sex in the first two months or so after my op and it just felt a bit weird. I felt pretty delicate and, physiologically, a man can't ejaculate after a prostatectomy which just felt a bit wrong!
Things that I found useful before my surgery were speaking in the flesh to people of a similar age and the same gender who've already been through it. That made me see that there is a good life beyond cystectomy and a pretty normal one. Ask your docs if they can direct you to someone.
I can relate to your losing your sis from my own experience. My sister was 38 and died within 3 weeks of diagnosis. I felt she would have been rooting for me when I chose my cystectomy! Maybe you'll never have to make that choice but if you do it's a well-trodden path.
All the best
OH Alice..you are reading about ileal conduit which is an outside bag......there are other options....one is the Indiana Pouch which is what i have...it is very successful in women...its an internal pouch made from intestine and you catharize thru a stoma..mine is at the belly button which i personally like...its easy to get to. Tim has a neo-bladder which is extremely successful in men because they have a longer urethra...it is placed in the same position as the old bladder and you have to exercise the kegal muscles in order to pee....hypercontinence is sometimes a big problem with women who get the neo-bladder. But its your choice. Look up each of the diversions and try to make an informed decision. Don't worry about the vaginal wall....you still have the vagina...its just a bit shorter but it can be stretched. Some places dependent on the location of tumor/tumors are preserving the female organs and vaginal wall....indication is that the BC does not spread to those areas...but if you no longer want kids go ahead and have the uterus and ovaries and vaginal wall removed...one less thing to worry about. If its just the sex issue removing the vaginal wall does nothing to minimize pleasure. OUr plumbing is different..........Anyway go to http://blcwebcafe.ora/financial resources.asp......for places to help you financially. And read up on the different diversions.....Indiana Pouch and Neo-bladder. If your doctor only offers an ileal conduit its because he probably can't do the others. Pat