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Posted 11/7/2008 12:42 AM (GMT 0)
 

 I have a comment to make. Why is it when people ask about your surgery, it seems that there are some people who always have to ask whether you can get an erection yet. I think for PC people like us, who have had to go through our surgery and some have to live with radiation treatments and leakage, should have to not even acknowledge that question. Where I work three guys have asked me if I can get it up yet. My surgery was Sept 18 and theres no way I can get it up yet. Theres alot of guys out there that think your not a man if you can`t get it up. I`m not going to acknowledge any more little comments about being able to use it or to still be able to.... Please the old lady. Anybody else run into this situation. And if you have how do you repond?

Fred

Posted 11/7/2008 1:22 AM (GMT 0)

First, I can't believe anybody would be so inconsiderate. Obviously they aren't very well informed, which isn't surprising. You could go into great detail explaining it to them, but would probably be a waste of time. Since my surgery, I have the feeling I should educate everyone I see about the danger of complacency regarding this disease.

Instead, I would ask them if they've had their PSA level checked lately, and then give the big thumbs up and say, "Yeah, baby....hard a rock." smilewinkgrin

Paul

Posted 11/7/2008 1:24 AM (GMT 0)

Hey Fred -

Well, here's a response from a non pc guy on the very question of ED. I'm sorry you have to go through all you guys have to go through. But I do know of the comments and questions from other men. Pretty insensitive, but men can be pigs, as well all know.

Being in the ED boat for 27 years, I get lots of questions and comments about the very same thing, as most everyone knows of my condition.

I know some of the comments and personal questions directed at me were really a round about way to get some information - they are curious. There are a lot of guys that have the very same problems with ED that do not have PC. I have had many, many dialogs with men that I barely knew when they found out about my ED and treatments.

Personally, it never bothered me much. But when someone irritated me I would always tell them "man, it gets rock hard, like I was 18 again" - smile and walk away. Usually I never got another question or comment from them.

Welcome to the board - there are some exceptional people here, always taking their time to help.

All the best to you.

Posted 11/7/2008 2:33 AM (GMT 0)
Hi Fred,
Great post. I agree with your points. I have learned to live with it. I am very open about what I have lived through. I do so to let people know it's why we need a cure that doesn't maime our bodies. But just as bad as the comments about whether I can get it up or not, my own brother's best line when we see each other twice a year is whether I have grown boobs or not because of the hormone therapy. It is insensitive, but I love my brother dearly. I have basically let it go like water off a duck. But for every guy who has had incontinence, his modesty stripped, his ED exposed, or his pride dinged, I pray that they remain hopeful and that they can ride this out with the courage it requires. That is why this board is so valuable! We can all share without concern that we would lose our dignity in the face of this adversity.

I can't recall how many times growing up as a young buck, that we would talk about how studly we are and how it matters. But I am refreshed when my son asks me how I am doing, and he fully understands what I have endured.

My two cents!

Tony
Posted 11/7/2008 4:11 AM (GMT 0)
I had a few guys ask me, but even more women ask my wife. I think it is a sort of sadistic tease they enjoy. It is a private thing but some just boldly ask. My nerve sparing surgery worked well and I started getting partial erections back within a week post op so we were not lieing when we told them yes. Most did not believe it. So why even ask. Because they wanted to talk about it with their spouses and friends. Gossip. We still get asked if I can "get it up". Well the truth is 80% natural and 100% with 10mg Cialis. I do not go into detail but now just say "Hell Yes" !!! Some still do not believe me. I do not know how to prove it unless I take a picture of it with a current event headline on a newspaper behind it. LOL.
Posted 11/7/2008 12:16 PM (GMT 0)
Two ways to answer this - and yes - it happens surprisingly often.

For the simple clods who just don't mean to be rude, I answer quite flippantly "I'm doing fine!" with a a raised eyebrow as if to ask why they would even ask such a question. The truth is, "doing fine" includes not even exptecting anything for a long, long time after surgery. So, you are being completely honest when answering with "I'm doing fine."

Then, for the true clods (usually the hyper machismo) who deserve to be embarrassed for asking such a stupid question, I add a tag line like - "I didn't know you wanted to know me that way."  or  some other intimation of their orientation when it comes to my sex life.  If they ask it in front of other guys, these lines really get them to shut up in a hurry!

Paul

Posted 11/7/2008 12:42 PM (GMT 0)

....one of the reasons I wear the blue bracelet, if people have questions, I tell them ask away. Heck I'll tell them what kind of pad I'm wearing and if it has wings or not......I've explained, and shared what it's like to be watching TV, eating my sandwich for lunch.....with my pump and accomplishing my daily excercise! The difference between Viagra, Levitra  Guys and gals alike....no secrets here, nor does it make me feel any less of a man. When I first came to this site, one of the vets told me, "this is not a time to be macho".....they were right and actually, I feel dealing with this male issue....makes each and everyone of us bigger men than any of us ever thought possible. I mean, like Ive said over and over, we didn't stand in line and ask for this stuff! But we can  beat it, live with it, and educate others about it....and while doing all that, stand  tall and be proud of who and what you are, what it's taken us to get to whatever point on the road we're on, and all of our brothers that are doing the same thing...and if not for ourselves, then for the memories of those that did fight this beast to their last breath........I just feel like it's up to us to spread the word

      Good luck my brothers one and all...

 

Posted 11/7/2008 1:13 PM (GMT 0)
Don't recall anyone ever asking me if Paul could "get it up". I have had plenty be rude and thoughtless with my favorite comment... "Oh, well that's no big deal. Prostate cancer is curable these days." My comment back? Tell that to the 30,000 families of men who die each year in our country alone. Being uninformed, ignorant, leads to insensitivity. I guess it's our job to educate them.

Swim
Posted 11/7/2008 1:56 PM (GMT 0)

Very well said indeed, Bluenose

Frank

Posted 11/7/2008 2:21 PM (GMT 0)
So far about half the people when finding out I had PCa...responded with "Oh good...you had the type that is easily cured". And to top it off...a male co-worker (much younger) piped out..."Oh that cancer...man it's no big deal" You can imagine the look I gave him. Sad but true people don't understand this cancer very well.

I have only had a couple of people ask me about the ED part. The answer I give them, is that I am still recovering, but won't be an issue with me. Keeping that confidence up is necessary, cause sometimes I really worry about it inside and I definitely don't want others to know about my doubts.
Posted 11/7/2008 2:41 PM (GMT 0)
I've not had a single 'outsider' to ask how its going with ED, so don't have to answer that question. Friends and family are always asking how I am feeling and how things are going, but in a general medical sense as to return of cancer or recovery in general. Most people seem to know about the incontinent issues, but not the ED issues involved.
Neither has my wife been asked, or even hinted. I have 3 'semi-friends-co-victims locally and we don't ask about it either, strangely . We have discussed every other detail of our journey, including info about using injections or ed drugs, even the pump, but only in the sense of helping rehab. Never ask is it working and how much. The assumption is it is, and the other stuff is to improve on it...lol
turn
Posted 11/7/2008 3:34 PM (GMT 0)
It's obvious that we are all on the same page here. When I turn to someone that says "it's the good one to get" I think the comment I make that get's the most attention is that over 500 men will die a week in the continental US alone, and in any two months the death toll from prostate cancer will exceed 9/11 and Katrina combined. And half of the survivors I know at websites are living with ED, incontinence, or in fear for their lives because it wasn't caught early enough. I don't hesitate to mention it's not uncommon either for the disease to relapse several years after a cure was thought acheived.

We have lost two guys in the last month alone here at HW. That is very frustrating to me.

Tony ~ with a tear in the eye.
Posted 11/7/2008 4:15 PM (GMT 0)
A gentleman I sometimes do business with happened to have PC surgery shortly after me. I was in his very upscale, quiet waiting room recently. As he opened the door to invite me back, he said, very loudly, "You still peeing in your pants?" I immediatly turned red. All I could think to say was "yes, but I do it on purpose now to keep the salesmen at electronics stores from messing with me."

I also get the 'you gettin it up yet' comments from other guys. Makes me wonder if the situation were reversed if I would ask someone that. I hope not, but can't say for sure. I guess the way we respond is linked to our personality type. Outgoing people may not mind sharing. Introverts, like myself, are not comfortable with others knowing our business, especially something so personal. Not being a good liar, or a quick thinker, I usually respond with something stupid like "I'm working on it".

Posted 11/7/2008 5:14 PM (GMT 0)

....I'll tell ya' Smokie, I'll talk about it with anyone, but, in a case like that, especially with a fellow member of the club. I think I may have told him no not in my pants, but I think I might go back here and whiz all over your office carpet!  What a jerk! sorry, just my two pennies! 

 Well said Tony. I have struggled with a response to  that one too...I've always mentioned some of what you say, but not all. If you don't mind, I'll be using your reply to that statement....our two brothers here have been on my mind as well. May they rest in peace..

Posted 11/7/2008 6:39 PM (GMT 0)
To tell you the truth it does not bother me one iota.

about Men:

 

about six months after surgery I was at my daughter's travel hockey tryouts shooting the crap with a bunch a other dad's.  Eventually someone asked how I was fairing with my cancer, as he had been on my daughter's team last year.  At that point it became a free for all of questions about PCa and it's side effect...  a taboo subject for them shocked  .  I answered every question I could along with the ones on ED.  I stressed that they needed to get in for annual PSA checked.  At one point during the conversation one of the wives walked over to see what we were talking about.  They knew it was not sports related so were currious.  tongue All conversation stopped until she was asked polity to leave.....  At this point I brought up the importance of working as a team to beat this thing.

 

This is not a subject that their fathers had talked to them about.  I only learnt about PCa when both my father and my father in law were diagnosed in the early 90's.  I also learnt how serious it was when I closed my father's casket and said my goodbyes.

 

about Women:

 

My wife has had long conversations with other women and also with my mother in law about ED.  Yes my mother in law.  She was trying to pass along some advise from her experiences when my father in law was treated for PCa.  It was funny to hear he say what drugs worked best for them.  For the most part the questions raised relate to a fear of the loss of intimacy.  Women in their 40's still like to have sex. yeah  

 

In Conclusion:

 

Both Men and Women are asking about your ED not necessarily because they are clods, but because they are SCARED confused of this side effect.  They want to here that everything is ok and that they will not have to worry about this side effect when PCa comes knocking.  They want to be reassured that they have nothing to worry about.

Posted 11/7/2008 7:41 PM (GMT 0)
Great post. I don't get many questions but when I do I smile and say I am cancer free. From the start, for me, it was always about the cancer and not the erections. My doctor told me i talked to him more about the incontinence than I did about the ED issues. My order was cancer, incontinence, and then worry about the ED. sure enough I had ED but I am continent and so far cancer free. I am a very LUCKY person and that is what i tell people. This site is good because we know what we went through. I believe a lot of people just don't know how to ask questions about cancer, etc. That is why i rely on you guys so much because we are going through the same issues.
Posted 11/8/2008 2:59 AM (GMT 0)

I am glad that I started this post. I agree with what everyone is saying. I also don`t appreciate it when people play down our type of cancer, because they all seem to have a uncle or great grandfather who had it and it, and they make these comments such as, oh they were just fine. They don`t have any idea what its takes physically and mentally to get through all of what we go through.

 I guess all we can do if keep putting the word out there to others to keep up their PSA tests and not to be embassassed, or afraid, to get checked out ,to find out that they may have cancer. If we all can do that, and save one or more individuals, then we can say that there was a purpose to our cancer.

Fred

God Bless all

Posted 11/8/2008 4:36 AM (GMT 0)
I am glad you started the post as well. It seems that some people, esp guys, like to behave like a schoolyard bully, finding an assumed weakness and making light or fun of it. I feel like a lot of people in our society relate ED to weakness in character and it making you less of a man. I have been surprised by the complete lack of sensitivity shown by some, even friends, who are calloused in their approach. Also, I have mentioned here before how one of my pet peeves is being told that if you have to have cancer, this is the one to have. I was even told this by my first urologist !! If anything, the public awareness of the disease in real terms is really lacking. For the most part, the average person thinks you get diagnosed, have surgery, and live the rest of your life in one of two ways, one being completely normal immediately, or second, a incontinent, impotent second rate man. Sorry for the rant, I feel better now.

Randy
Posted 11/8/2008 11:38 AM (GMT 0)
So, is it rude to barter for PDE5's? I've traded a Doc's student (employee) tutoring. Hope it isn't too insensitive but it really gives DH a chance to test all doses and types on the market.

:>)
Posted 11/8/2008 12:48 PM (GMT 0)

 For all of us who have gone through the ordeal ,we`ve gone through, deserve to rant and rave a little. Its good therapy for bundled up stress. I work at a Ford dealership as a salesman for 23 years, and when the guys aren`t busy, all some of these guys want to talk about is every female that comes through the door they want to do them. Since my surgery my life has changed and though sex is still important to me, its not them same importance as before. A few of these guys ask me about it because they don`t know and they ask me hoping I tell them I can`t get it up, so behind me back they can have a joke or 2 about it.

One of them made a comment about in his words.. a bummer not being able to blow a load again.

Well it ticked me a little and I asked him if his wife preformed oral sex on him, and he kind of looked funny, and I said well I thought so. I then said well thats to bad, I bet shes afraid of the mess of the semen, well I told him my wife is so happy about my situation without the semen, that my oral sex will increase for me...too bad for you and I walked away

I hope this post isn`t to offensive to others on HW but I think it needs to be talked about. I`m

still a man whether I ejaculate semen or not. My rant

Fred

 

Posted 11/8/2008 1:57 PM (GMT 0)
Lungman, you are 100% correct. when i posted people don't know what to say you stated it better. People have told me pc was the best to have and they know xxxxx who had it and he is fine. people that say that do not know gleason, margin, etc. They don't know (and I hope they never find out) what it is like when the doctor tells you "you have cancer". To be perfectly honest, initially when i was told I had cancer, I couldn't say the word without crying.
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