My husband saw the urologist today (5 months after the cystectomy) and a week after his CT scans. We got the best possible news, no sign of cancer anywhere. It kind of makes all the trauma and trials of the past 6 months worthwhile, although it wasn't me that had to go through it all.
Apparently the impotence can take up to 2 years to heal, which is also good news because we thought that the time frame was 6 months and things are not happening yet.
Living with an external bag is going to continue to be a challenge but at least now we feel that we can get on with living, rather than worrying about what might be next.
He still needs to see the doctor every 5 months and have other tests, but it is all looking much brighter.
We tried a free sample (one 20mg) Cialis last Friday night. It did work the way it was supposed to, but my husband has had a severe headache since the early hours of Saturday morning and it's just wearing off now, at 5pm Tuesday. He had three "light" beers Friday night, so maybe that didn't help, but the instructions did say that it could be taken with alcohol. We will just have to wait until the 20th when we see the specialist again. He's finding this side of things pretty frustrating because he thought it would gradually "get better" on its own (he did have nerve-sparing surgery) and it's now 5 months since his operation. Otherwise, things are still going pretty well for him.
Does anyone else sleep with a bucket next to the bed? He hadn't closed his night bag tap properly one night so we had wet carpet - his solution - hook the bag up with some wire to stand up in a bucket! Better than wet carpet. Lucky we both have a pretty good sense of humour.
I do take daily but that seems to be a theory that my Uro's mentor follows. It does seem to be catching on but at least in the states, it can not be prescribed as a regular treatment yet. According to my script records, I must have a lot of sex!?
If Viagra is a problem, you might try Cialis.
Believe in yourself,
RC w/ Neobladder 8/22/06
Thanks for posting that clip for me. Life's been pretty busy so I haven't been back here for a couple of weeks. My husband continues to recover well, but is still concerned at the impotence problem. Viagara may not be for him, as it gives him terrible headaches, although it was successful to some extent. It is also extremely expensive here - $80 (Australian) for a pack of four, which for us is almost equivalent to the weekly shopping budget. We probably didn't ask enough questions or weren't given enough information- we thought he should only take one tablet when required, whereas it sounds like you were taking it daily? We will ask about this at the next Dr appointment.
I am glad to hear your husband is doing well after surgery. I have been updating my story "Life with a Neo-Bladder" under the Storyboard. I pulled a clip from my last which discusses sex and Viagra. I found straight forward sharing and information helpful and offer the same to those who want it.
OK... move on... One of the huge benefits I find in this site is the feeling of not being alone. Reading about others that are or have experienced similar feelings or events. For this reason, I am going to move on to the subject of sex. Men... I know this is a subject we avoid but is always top of mind. Since I was terrified, I wanted to share and hopefully help someone down the road.
At my 6 week checkup the Dr asked asked if... as he said "Any signs of life down there?"
My wife and I had yet to try. Doc said it was time to start breathing life back into it. I did have a nerve sparing surgery and My Uro recommends a routine of 25mg Viagra daily to help with recovery. He suggested a full 100mg dose and then get busy at least 2 to 3 times a week. My wife was on her way out of town for a long weekend so all we could do was look forward to a good homecoming.
Well... being the man-pig I am and also being a LOT nervous about ability, I thought I'd just give things a "Test" run myself. The reason I tell my story is because while I did take the Viagra... the results were not what I had hoped for. In about 45 seconds I proceeded to have what felt like a very weak and totally un-satisfying orgasm and there was no erection what-so-ever. Now I was really scared! Was this what sex was going to be???
Obviously I was very upset and concerned. What was my wife going to say when she came home and we tried with similar results! After a day, I decided to give it another try. The outcome was only slightly more encouraging. Perhaps 30% erection but similar feeling for an orgasm.
When My wife got home, it was getting late and I had an appointment with the Uro the following day so the homecoming celebration was put off (whew). In the morning, as we woke up I just felt like I could. Long story short... I could not and that's when I explainied that I had tried over the weekend. She was very supportive and understanding but deep down I'm sure she was wondering herself.
At the Uro that afternoon, we discussed exactly what had happened. He looked us both in the eye and said "Just keep working at it. You've been through major surgery and it may take a some time. The fact that you had some erection is a step in the right direction. You didn't wake up from the surgery and start running down the hall... everything is little steps."
I knew that if things did not work properly there were many treatments to comsider, but like any one, I wanted things to be as close to before a possible.
Later that evening we decided to try again. I wanted to take some pressure off and for me that's relaxing her first. With that behind us things just seemed to progress naturally. Now I'm not going to claim 100% on the erection side that quickly but my fears about a very mild and un-satisfactory orgasm were put to rest. Since then... things are getting better every time. Small steps lead to great success!
Men... be patient. I'm sure there will be some fear but be patient. Also REMEMBER... while your partner may not share this with you, they are VERY nervous about touching you. They do not want to hurt you and may be very timid. Let them know that you are fine and lead them if you must.
Again, I write this in hopes of helping someone understand that they are not alone. The unknown creates the greatest fear. When my Uro reminded me that this was a journey that takes some time, I just felt better. My concerns faded and I was ready to keep working at it. Do not give up and remember... attitude is half the battle!
Believe in yourself,
RC w/ Neobladder 8/22/06