How do you deal with your friends' ignorance about your condition?

Posted by tomf @tomf, Mar 28 7:32am

I have been open and frank with my golf and pickleball buddies about my incontinence after my RALP of several months ago. They have come to understand the bathroom breaks that take longer because I'm changing pads due to stress incontinence. I make jokes about the ED. ("Damn my hearing problems. I thought my doc said I'd be a unique guy for quite a while, but he actually said a eunuch") The other evening I was flabbergasted as our foursome went out to dinner with our wives. My wife was enjoying the evening and opted for a second glass of wine, a rarity for her. Another wife (a very close friend who knows about my surgery) leaned over, smiling and whispered "I bet you're gonna get lucky tonight". Now I wasn't offended by the nature of the statement, we all joke like that. But I was saddened by the lack of knowledge of what a prostatectomy does to a man's abilities. All of us in this group are in our 70's and we each have been open about our health issues. I guess I was dumbfounded that this friend hadn't done any research on what my surgery would do. Instead of embarrassing her, I just told her to read up about prostatectomies. Back when I was first diagnosed, I told another acquaintance of my situation and the response was "Well, thankfully it's only prostate cancer." I don't hold a grudge in either case, but I wonder if anyone out there has similar stories? Has society downplayed this diagnosis so much that people have no interest in it, especially with regards to their friends?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Maybe you are being over sensitive about your friends ignorance of the ills of prostate cancer and prostatectomy. I was fortunate to not have incontinence but dealing with this cancer is ongoing. Sure, I have ED as a result of this but, I deal with it. I have a girlfriend who is understanding and without my suggestion, she is educating herself to my condition. We have wonderful sex because we are very open minded and use the tools available to me for erections. I certainly wouldn't be offended by a friend saying to me in a similar situation that I might get lucky tonight. It's what people do and it isn't offensive to suggest such a thing. I suggest that you may need to get some counseling to deal with your insecurities about your condition. You'll live a much happier life if you just chill about this. You could be enjoying great sex with your wife and maybe even make her happier.

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I had Life with Cancer appointment yesterday and I discussed this very matter with the NP. She said that people seem to have varied responses. I feel like people that know I have stage 4 prostate cancer are uncomfortable around me. Almost like they are afraid cancer will jump on them. Other just do not know what to say, and other have no clue and just stay away. This is why in some way I do not feel like part of this world anymore. Not in a depressed manner. In fact, I am very positive and I am a fighter. But in the sense that everyone walking around (or most people) does not have a possible early expiration date looming over their lives. And therefore, they cannot relate at all with my new normal. So, for those who are generally interested I explain that my condition while serious is not a death sentence anymore and that I am in a very good place two years after my initial diagnosis. That I am in "Deep Remission". That seems to comfort them a little.

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@harvey44

Maybe you are being over sensitive about your friends ignorance of the ills of prostate cancer and prostatectomy. I was fortunate to not have incontinence but dealing with this cancer is ongoing. Sure, I have ED as a result of this but, I deal with it. I have a girlfriend who is understanding and without my suggestion, she is educating herself to my condition. We have wonderful sex because we are very open minded and use the tools available to me for erections. I certainly wouldn't be offended by a friend saying to me in a similar situation that I might get lucky tonight. It's what people do and it isn't offensive to suggest such a thing. I suggest that you may need to get some counseling to deal with your insecurities about your condition. You'll live a much happier life if you just chill about this. You could be enjoying great sex with your wife and maybe even make her happier.

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harvey44 I am afraid you read too much into this. I said I wasn't offended, and I have no idea why you feel I need counseling about insecurities. I am saddened when people miss opportunities to become more aware of things affecting their friends. One friend was recently diagnosed with Parkinson's. I read up on Parkinson's so I would understand his situation better. Another friend recently told me he had a suprapubic catheter surgically inserted. I asked him all about it. I know that curiosity killed the cat, but I wish people would take some time to get up to speed when their friends share their medical issues. I assume they are sharing because they are reaching out and want someone to talk to.

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I think that people with a life threatening and life changing disease, think and research and compare notes with others etc about the disease many times per day. People who are free of such diseases are simply not so involved with such matters and this leads to their uninformed comments that offends us. They are innocent and not involved and not knowledgeable. In order to cope, I think that you need to be a selective listener and quickly forget stupid and innocent statements that are made. This forum is a good place to vent with people who are dealing with a similar issue, all be it, we are at different stages of this journey. Being a selective listener is easier said then done. Good Luck

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I bet she was deeply embarrassed, if she read the literature. However: there are other avenues of fortune for women in bed with a man who loves her. And you might be complimented that whatever limitations this cruel disease imposes, they do not openly reflect on your masculine presence.

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I guess slightly embarrassed when ED is brought up, At 69 I can't blame it on the cancer. I often joke with my wife that she can't look at me "that" way because I'm on meds. At this point in life I just laugh it off. As to the conversation of "you'll get lucky tonight" I would take as fun joke. I only talk about my cancer with certain folks, it can be a real downer to most. I'll be damned if I'm going to let it pop my balloon. Also, I can not believe how many on here, older then me "are getting lucky". Go for the Gusto!! Best to all.

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Cancer is an incredibly difficult issue to discuss socially. Some days I can't talk about with myself.

Two buddies same conversation. Both long term friends, best friends since college. Bob, struggles with discussing cancer, so he jokes about it. I get, its his defense mechanistic for talking about uncomfortable things. Been that way his entire life. I granted immunity. Joyce, on the other hand is a cancer survivor. She get its. Our discussions are always helpful and healing in such away as only long term friends can comprehend. I am blessed to have their friendship.

The most common cancer discussions I have are with my workout club buddies. At the club most of my buddies are over 70 and are excellent in discussing cancer, heart issues, memory issues, every ache and pain imaginable. Lucky to have comradeship.

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@gently

I bet she was deeply embarrassed, if she read the literature. However: there are other avenues of fortune for women in bed with a man who loves her. And you might be complimented that whatever limitations this cruel disease imposes, they do not openly reflect on your masculine presence.

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A lot of guys don’t even know they have a prostate.
😏

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I think, like many things in life, if you have not personally experienced something, it remains somewhat abstract. I was guilty of thinking my father, father-in-law, and brother's prostate cancers "weren't serious". Then, years later, I was diagnosed - by a rather insensitive physician - who literally made me feel I would die soon - I went home and "googled" "what to do if you only have one year". Fortunately, all scans and tests revealed no spread anywhere and had surgery. But the after-effects of surgery have been a "challenge". So many things one takes for granted for one's entire life can be gone. No one truly understands this until they have personally experienced it. It can, in some ways, be a "lonely journey". Fortunately, there are many great supports out there (like this forum) to help.

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