New Here . . .

Mike; Hope you are doing well. I don,t know about you, but I'm just not to sure in cases like this how far to lead someone, don't want to lead them to much, but don't want someone to needlessly die either??? Glad you're there to help.
Duke

Thank you Duke . . . I just turned on a light bulb in his direction. We'll see if he's willing to keep it on.

Yes, God bless Cynthia and everyone here. In the short time I have been here, people have come to my rescue and given me the courage to let my husband know exactly how I feel about this.

The facts are, we have both done studying on this neo bladder cancer for 5 years. He's gotten explicit details from our doctors and have all the information we need to proceed. It's the "sex" thing that is worrying him the most and he thinks that waiting yet another six months, when the doctors have told him he's way past due and liable to have this cancer jump the reservation at any given point, is going to what? Make our sex life better? I gotta tell you frankly, I'm not that turned on about him risking his life.

The stress of waiting and worrying is causing a lot of tension between us. He thinks I'm not on his side, but he couldn't be more wrong.

He thinks I don't want to have sex with him and have, as what he thinks our last days be our "Last Meal". He couldn't be more wrong there either. Our sex life is wonderful and I have every hope that with his extraordinary health, and the fact that his prostate is in excellent condition that the doctor's will be able to save the nerves.

I'll keep everyone posted.

Best regards, Rayn

Sorry about that Rayn. My damn iPhone changes what I type sometimes.

I misunderstood. Didn't realize he picked the neobladder surgery for six months from now.
Hopefully he will still be able to get the surgery if he waits that long.
Good luck getting him to change his mind!!!

Cancer doesn't put itself on hold while we procrastinate.

Mike

P.S. I am using my iphone because I am skiing in the mountains of Colorado right now!
How's THAT for "quality of life".

Rayn; Hope you are both doing well. Just as mike said on the epidural. With the epidural still in i was wondering what the big deal was all about, this isn,t a problem. When they took out the epidural, i new right away what the big deal was. But it's still doable. As for psychological part of this whole thing. I had been through the medical system for twenty years, and the first scope set me back a little. And the first time i had to have a cath for a few days was not good. But surgery or no surgery you still go through all of that. When I was worrying about the surgery and what type to have, I was able to talk to a friend of my daughter, that had the same Dr. and same surgery, and at the same time i found this site ( God bless Cynthia for that ), for me it was like a light went on and i knew where i was going.
Where ever it leads him I hope your husband fines his light.
Best wishes.
Duke

Hi Mike,

I'm 58 years old . . . I've been around illness most of my adult life, so I'm not embarrassed by too many things regarding the human anatomy. I like straight talk and being clear about things.
It has never been more important then now.

Thank you for the tip on the epidural. That is very important and I passed your "Folks" story and your last post to me to my husband with an e-mail of my own to him.

He'll kill me if he knows I'm here. I'm just telling him I'm getting information from what I'm reading from some Bladder Cancer support sites. Frankly, at this point, I don't care. His life is more important to me then his anger at me for doing what I think I need to support him. Love and support doesn't always come candy coated in a package with a pink bow. We may have to go to war about this but it's too much stress having an elephant in the front room that isn't potty trained.

I'm hoping he'll reconsider waiting for another six months or more to have this done. All the specialists have agreed over the last two years that he's way past due for this surgery. He may think he's right, but he may be dead right.

Sorry for the vent. I can't eat or sleep and I'm having nightmares and migranes from all this. If we could just move into preparing for this surgery and take action, I'm there a thousand percent, but to have to wait and worry . . . there's no quality of life in this for either of us.

We'll see what he says. My e-mails to him, even when he's in the next room, have usually gotten the point across sometimes better then facing him head on. This way, he has a chance to calm down and really think before we start talking face to face.

Thanks for all your wonderful support.

Oh, it's "RAYN" not "RYAN" it's easily confused.

Rayn,

Glad that gave you a chuckle. I was a little worried that I'd gone over the line with that comment.

To answer another question you had, he should ask the surgeon if he can have an epidural for the surgery. If they use that, then he gets much less pain meds because the block covers the pain. The pain meds increase the risk of ileus and helps the intestines to 'wake up' sooner. The sooner the intestines wake up, the sooner he gets to go home from the hospital.

I did not have it for my neobladder, wound up with an ileus, and that's why I wound up in hospital for 12 days instead of 5 or 6 days. It was hell on earth. It's amazing how terrible you can feel when intestines aren't working!

The single biggest factor in success of the surgery without major complications is the skill and experience of the surgeon. This is not something you have the local urologist do. This is something you get done at a major bladder cancer hospital with the best surgeon (does 50 or more a year) you can find.

We push people pretty hard on that around here. The ones that listen tend to have a pretty good story to tell. Those that didn't have some pretty terrible horror stories. That's the reason some of us push to the point of being real pains in the butt about it.

It is really not so bad living without a bladder. The prostate issue is a big deal. But, of those that get the nerve sparing surgery, are "up" and around (so to speak) in a few months. Some take much longer (up to a year or two) and still others never get erectile function back without using something to assist in the process. That can be anything from just taking Cialis or Viagra to using a shot (yes...there) or an pump implant. The feeling is still there and orgasm still happens, just nothing comes out. The shot is scary to think about and I went about 8 months before giving it a try. Then I was kicking myself for waiting so long. Teeny, tiny, short little needle but it had great result. Still, the idea of it is pretty darn scary. Once one gets over that fear and does it, it's like "Well damn, that wasn't so bad!" AND, it works!!! That certainly makes it work a little stick.

My point is, even if things don't work just as well as before, there are things that can be done to help the situation. Given the number of doctors and researchers that are men, you can imagine the amount of time, attention, and research money that goes into solving problems of this sort. It's not quite the same as for women, but that's a story for another day...

Mike