New Neobladder Please Help

I concur with the above comments. Depression is insidious, can be very serious and may need medical treatment. I have spent years depressed, much of it associated with physical discomfort due to what I found out was undiagnosed BC. But an interesting thing has happened since I was diagnosed and treated – I’m not depressed anymore. I ascribe it to having to confront this disease, the possibility that it had advanced to an untreatable level and the personal reflection that lead me to decide if I was going to engage and fight it or not.

Having my catheter out was one of the worst experiences I ever had; at a time when I didn’t think things could get worse. But it’s hopefully also the main transitional point between treatment and recovery.

For me having my catheter removed was the apex of a painful, demoralizing, depressing and simply brutal process. This is the point where the bandages come off and the physicality of being a man changes - the old body is gone and you’re not exactly sure what’s left. I was filled (and still am) with questions: to what extent will I recover, gain strength, virility, vitality, how will I become a man again with essential functions possibly gone and pieces missing? The bottom line is; this is a huge change in a short amount of time. Change is inevitable, but so much so quickly is a shock.

Self catheterization is an all time low in terms of self image. With pain, scars, weight loss and weakness keeping it company.

I was so weak I rarely got out of bed for two months (after getting out of the hospital), I was beginning to loose faith. But I can tell you the body heals and hopefully within month’s things get much better. I didn’t believe it, but it’s finally happening. As far as the broader picture, all things considered, I feel lucky. Although this operation seems almost medieval, it has a very high success rate.

For me it boils down to quality of life – I would not opt to stay alive at any cost. As far as cancer goes, so far, I’ve gotten off pretty easy, I know that first hand. Everyone has to come to this understanding individually - for me life is definitely worth living. I’ve spent years feeling depressed, (for all kinds of reasons) now that seem foolish.

Linda, my husband's cancer center had a brochure about cognitive behavioral therapy, and also groups for cancer survivors. It might not be time yet to get into a group, but it would be good if he had someone he could talk to. I nagged my husband into the CBT group, and he complained the whole time, but he got some nuggets out of it.

I know that a lot of men don't like to talk about their fears, but does he like to read? Maybe our list could suggest some reading materials for you to have on hand.

Also, how long was his surgery? I have heard that it takes a month for every hour of surgery to get back to "normal".

At three weeks, my husband was still not leaving his recliner, and figured his life was over. Five months later, he was playing his sax in a big band for New Year's Eve.

'Course the next week he was in the hospital with an infection, because this is a long process, BUT......things do get better. If he can't or won't visit this site, keep coming back yourself, and see if you don't get some strength from the visits, and you can pass it on to him.

Stephany in Iowa

Hiya Linda
Three weeks is very early days and I think most of us with Neo bladders felt pretty low at that stage. Everyone is different and it's a tough op and recovery. Some more details about your husband would be useful. The point at which the catheter is removed is a very big crossroads on this journey. You are sort of cast adrift after a long time of being looked after and the hourly needs of your new plumbing being managed by tubes and drains. It's suddenely like you are on your own and expected to get back to normal and pee again. you feel like your bladder has been replaced by a lifeless sac over which you have very little control. I leaked like a sieve when my nurse "de-tubularised" me. Every time I got up and sat down, sat in the car, moved suddenely out came the pee. I had to sit on a towel whenever watching tv and sometimes even that wasn't enough. But little by little, things improved. suddenely you find you've managed to go out for dinner or taken a hefty walk without running to the toilet and life begins to get back to normal again. A year on and my daytime continence is really 100% now. Nitghttime is a bit iffy but improving and ive been a bit lazy with kegals! The situation is far from hopeless. I imagine that your husband was given all kinds of medication in hospital which has probably contributed to a grim state of mind. It sounds trite but eating as well as I could and getting out at every opportunity helped me a lot. even if i just staggered down the road in the countryside for 100 yards. all the best to you guys. it WILL get better.

Tim

PS If your husband is up to it at any point please get him to stop by here with any questions or just to share a problem. He'll always be welcome and he'll see that there are loads and loads of people who have been in his shoes and ready to offer support. No one can see your problems exactly as you do but it helps to talk to others who have been there.

Hello Linda,

Your husband is definitely not alone in this. And I don't think you mean he's depressed about his lack of continence, although that is certainly a factor.

Depression is really insidious, sort of like a low-grade infection that never goes away and just wears away at your will. I really agree with Cynthia that he needs to talk with someone about this.

You didn't really give many details about your husband--his age, his health, whether he's retired or working, what his mental state was like before the diagnosis and surgery--these are all fairly important factors.

And right now he's in pain, incontinent, helpless, probably impotent, and feeling very mortal. It's tough to whistle a happy tune when that's the not-so-rosy lens you're looking at the world through. But, and I can't emphasize this enough, it does get better, and it can get great again. Like with any setback, your husband needs to take a long-term view of his situation. In a few months he'll be much better, he'll feel better, and much of his continence will likely be back. I'm 19 months out of my own surgery, and my life is back to where is was. Better, actually.

My advice to your husband is to focus on the good things in his life and to take a long-term view of his condition. I know that sounds simplistic, but it works. And please check your personal messages.

Zach

Hi All
My husband had RC surgery three weeks ago. His catheter was removed yesterday and he is beginning the process of using his new bladder. Any advice for helping him through. The staff at the hospital was wonderful in explaining time voiding,kegals etc. They did not however deal with onset of depresson and sense of hopelessness. I would welcome any advice on how I can help him through the process
Thanks
Linda