Wally, thanks, I appreciate your words and understand any anger or frustration. There are over 145,000 members at HW in general, and I can't please all of them, all of the time. I leave it to the moderators to tone down things when they get out of hand, and they do a great job in my opinion. There are just a handful of simple rules to follow here, and it shouldn't be hard for anyone to follow them. Other than those few rules, we have a lot of latitude here at HW PC to say what we want.
You would think that a person that's dealing with a difficult journey and living with constant severe pain, would not be a target for attack, just out of human decency, but when it happens, its speaks volumes about
the character of that kind of poster. Plus, we all know its easy to talk big and talk tough, when you are not facing the person in real life. I make an easy target at this point, if someone wants to kick my a**, either verbally or physically (lol), I would go down fast, not much fight left in this tired body.
Again, thank goodness for good moderators, and thanks to Peter for allowing such a forum to exist.
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Casper,
It was locked short term by Tud, for him to clean up a few things, and allow to boiling pot to cool down. Been fine since, and I hope it stays that way.
You spelled out a big difference, that some folks here seem to forget or choose to forget. If you have PC where the tumor is effecting something directly, or pushing on something, etc - then HT could help with that kind of pain. Absolutely agree. But my cancer pain is due to severe damage done by PC treatments, not the PC itself at this point. So in my case, HT would not only not help, but my doctor feels it could elevate, just by the nature of the beast. So despite a small handful of critics here, I am following sound doctors advice.
As far as following advice, I do so more than I get credit for. Most recently, been following Sonny's journey. He and I, PC paths, are so identical in so many ways. The lesson I just learned from him, is that I will insist on a C11 Acetate PET scan in Feb, when my dr. gets me scanned again. The C11 apparently has the ability to pick up mets that other scans have missed. Just like he was buying time, so have I.
Yes, I have a great and normal sex life, I don't feel its bragging. I am thankful, it wasn't suppose to happen, because I had wide margin surgery. Lost my left bundle, right bundle couldn't be removed, was left damaged, yet zero ED. And to be honest, rather have the dry orgasms now that I am use to them, because orgasms are so much longer and deeper. But, and there's always the "but", I am not avoiding treatment because of the sex. I don't know why that same few people, don't get the point. I am not saying no to HT, or chemo, because I don't want to, or because it will mess up my sex life, I am saying no, because my doctor is saying no. When and if my window closes, I will have to make the same choice that every other man in my situation has to offer.
With a psa of 83 and still climbing, my doctor and I know my window is closing, if I am lucky, I might be able to buy another 6 months, mabe a year, before choices will have to be made. I hope no one begrudges me that.
Plus many that are pushing HT or are on it themselves, haven't been dealing with all the other issues that I have for over 5 years like I have. If they did, they might have a different view on the subject.
I still feel bad for you with your multiple battles. I know you are in pain, and glad you too, are on suitable pain meds. Oxycodone didn't work for me, we tried it. Got an entire bottle of it sitting here, and a whole bottle of Diludid, it didn't work well either. For me, the Fentanyl takes the bulk of the pain away, in theory, lol, and the Norco (formerly Lortab) takes care of the pain that breaks through. But there never, ever is a moment, that I am not feeling pain. Pain that would bother a normal person.
It is difficult for anyone to imagine being in pain for years. There are some at HW CP that have been in pain for over 10-15 years, even longer. For me, its been 3 1/2 years, and that's been bad enough, and the worse part, it still spreading through my body, which makes it harder and harder to control. I really need this scan to show something, anything, to help my doctors treat me in a different way. They are hoping for this too.
My best to you, as you continue your personal battles, I think of you often in your circumstances.
David
Post Edited (Purgatory) : 12/4/2013 7:37:43 AM (GMT-7)