Scaring myself

The forum is great! Wonderful information and so many positive stories. But I also get scared as I read of some of the challenges. I'm in a waiting period right now. I am recovering from surgery and I know that my cancer sprmyself least to my bladder and that my surgeon was unable to remove all of the cancer. I don't get my follow up PSA for two more months. My doctor, who is the head of urology in this area, says he has never had a case like mine. Not what you want to hear, that I'm one for the medical journals! I'm working hard to stay positive, to exercise, to stay calm- and my wife is great, very supportive and positive. But, when I go to bed or stop for a minute at work, my mind goes to some places that aren't good. I know I can't be alone in this regard. How do you do it? How do you stay positively focused when this is such a battle?

Thanks in advance for your generous and positive comments.

Pat

Hey Pat,
Welcome to our corner of the world.
You asked how we do it. I can only tell you how I do it.
I didn't have the easiest post recovery. The second day post surgery I happened to stumble into the bathroom for some reason and caught a glance at myself in the mirror. It was shocking. Oddly shaved chest hair, head hair all messed up, face unshaven, I hadn't changed my clothes since the event. I was carrying the yellow purse in in a 5 gallon driveway sealer bucket attached to a camera strap draped over my shoulder so I would not walk away and forget it like I had done a few times already.
The image in the mirror was so ridiculous I started to laugh. "He did what to whom in his image?"
The guys here really helped me see the bright side and laugh even though it hurts.
Trust me, it is better to make fun of wonky winkies and pasty pee pads than to cry about ED and incontinence.

I truly believe much of it depends upon your outlook - and the drugs you take.

Good luck to you.
Jeff

Hi Pat,
A warm welcome to you from sunny and warm Florida!
Sorry to hear you have some challenges ahead.

We have had some distractions lately on HW that has taken some attention away from our real purpose of helping others deal with this beast called PC.

I got sober 23 years ago by hanging around others who were trying to get sober. Noone, at the time, could have helped me more than these people who knew what I was going through at the time. They felt what I felt, they understood the demons in my head, and we got together to share our experiences, strengths and hope.

That is what we have here in HW. A cyber meeting of brothers ( and sisters) who really understand what you are going through. Some of us have walked the same walk, others have sympathy and understanding that only PC cancer surviors can have. We are open 24 hours and there are no dues or fees. If you are just having a bad day trying to cope and want to let off some steam, you will find someone here.
That is how a lot of us manage this beast. Our friends, family and co- workers just can't relate to what we are going through.

If you have times when you can't believe that things will be alright, believe that we believe they will. Don't loose sleep over this thing. There is nothing you can do about it while tossing and turning in bed.

You will get through this, it is just another bump in life's road.

Keep the faith,

Bill

Thanks. I appreciate all the comments. I know my attitude is important and I am generally an optimist. I just get days where I fall into the why me trap. A common recurrence for me is to get caught up in all the bad odds I have had. When my dr first ran my psa he said it was likely nothing, don't worry and we will run it again in a month. The next month he said well that's still high, let's have you see the urologist. He said lets do a biopsy, but not to worry. In his experience, men with my psa are highly likely to have a negative biopsy. Then he calls me, when my wife and I were on a weekend to celebrate our 27th anniversary no less, and says sorry you have cancer. Then it's don't worry, you only had some cancer in one of twelve cores, and it's not likely to have spread. So I decide on surgery (very glad I did), and the dr's expectation is a good surgery with no complications. The reality was my cancer had spread, my surgery was very lengthy and demanding, and my hospitalization longer than I expected. Oh and you only have a small amount of bladder left, sorry. Then its we think we got it all, the initial pathology during surgery says we re ok. Then the final pathology says no, there is still cancer in m bladder.Oh, and before my surgery, the dr's ran through some potential issues that they said were very unlikely but just wanted me to know about. My anastesiologist (sp?) even said he had done this procedures hundreds of times and only ever had these complications once. So, I had each occur, blood pressure spike, vision loss, swelling that caused me to remain on the ventilator for hours after the surgery.....

I can really get my self down when the mood hits. Then I think about the good things in my life. I knew I had a great wife, but she's so much more than that. She's been fantastic, the best wife, best partner, best friend ever. My family and friends have rallied to my side. My kids are doing ok, though they don't talk much about it.

Sorry to ramble. I know this is a place where I can share what's going on, even if it's just to get it out.

Thanks

Pat

Bet ya feel that every time you stick your head up somebody or something gives it a kick. Sometimes life can be like that ----- things come in bunches. But hopefully all will balance out. Pre surgery most prognosis or expectations of what will be found is educated guesswork that can turn out to be better or worse after the pathology is done. Given that there must been positive margins to the portions of bladder that were removed it should probably be expected that PSA at the ultrasensitive level will be detectable in April and additional therapy such as radiation and perhaps a course of HT is on the cards. But strange things have happened ----- the blood supply to the remnant tumour may have come via that removed tissue and there is a possibility what was left may wither and die off. I am guessing the reduced bladder capacity will be a nuisance with having to piddle more often (I wonder if, once healed, consistently hanging off emptying the bladder for as long as possible will help stretch it increasing capacity and thus holding capacity). You have a lot of people on your side so my very best as you recover.

Oldguy,

You have me curious now. With most of your bladder removed, did you end up with an Urostomy (stoma) like me to urinate with. Or did they make some kind of neo-bladder inside so that you can urinate in a more normal manner? Or did you just end up with a tiny partial bladder, with the rest of your plumbing intact?

david

You were fortunate that your surgeon was able to retain enough of your bladder to keep it operational, even though it be smaller in capacity. Must have been a pretty good surgeon.

My bladder and bladder neck were destroyed by mis-applied radiation, and I was never able to urinate naturally without severe pain. After being on a catheter for 51 weeks, I consented to the Urostomy surgery and my bladder was by-passed for life.

I wish you well in the rest of your recovery.

david