Do most people really want to know how you're Really doing?

Posted by fritzo @fritzo, Jun 20 7:03pm

OK, I'm doing it again. Thought Hans brought up some good points about how most people who know you have cancer actually don't really want to know how you're doing...they want the heroic answer that makes them feel better.

He has some retorts to the question that probably do trigger people. It reminds me of my son-in-law, who when people asked how he was doing, would say with great intensely, "Great!" The catch was that you didn't know if he meant great in a positive way or meant it sarcastically. It would definitely would stop you for a second.

Anyway....another link to Hans column and a graph from it....

“The truth, I have come to believe, is that much of illness in modern society is performative. We have collectively agreed that sick people should remain inspirational because actual suffering makes everybody terribly uncomfortable. Nobody wants honest illness. People claim they admire bravery, but what they really admire is tidy suffering, suffering that smiles politely, expresses gratitude, posts optimistic updates on social media, and generally avoids introducing unpleasant realism into brunch conversations.”

The Curious Performance of Being Fine
https://open.substack.com/pub/nutmegphantasy/p/the-curious-performance-of-being-dbf

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

Profile picture for surftohealth88 @surftohealth88

@jim18
" In most places ..."

Yes, most places in the USA : (((.

In Austria and Germany, for example, employer would go to court for that and have serious fines because of very strict labor laws. Only if patient is terminally ill or will be permanently disabled there would be so called initiation of dismissal but worker would have a compensation for life and in amount that is almost the same as was the salary.

Interestingly the same applies for USA companies that have their offices in Germany ! Workers in Germany have those same protections while workers in the same company in the USA have none in those circumstances : (

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@surftohealth88

Crap! I should have moved to Germany. I was laid off about 3 months after my RP. I got a nice severance but a lifetime comp would have been GREAT! haha

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I believe in the "need to know" philosophy and respond with "So far so good" or adding "One day at a time is a pretty good pace and thanks for asking." In other words, if there is not a real "need to know" about my condition I keep it simple. For close friends or others going through similar cancers I am more detailed. "Hey, how about coffee and we can talk." This can lead to deeper, meaningful conversations for both of us. Sharing the good and not so good is a healthy stance benefiting myself and hopefully the other person in similar straits.

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Profile picture for wheel1 @wheel1

Men get worried that prostate cancers mean ED and incontinence when people hear it, probably more concerned about the topic around women or what it means in a relationship while some women are likely concerned with discussing breast cancer around men and believing men would not want them with a mastectomy or double mastectomy as men feel women may not want them. Any stigma their was regarding breast cancer with women appears gone and women today having all the benefits of reconstructive surgery that they did not have in the past possibly helps them as they process and navigate their cancer’s and treatment alternatives as we do. Men also have so many new approaches to the side effects than they had in the past but I think the stigma with men and ED and incontinence has a way to go where prostate becomes do discussed so openly as breast. Breast cancer awareness month is huge and the importance of mammograms and self checks is all over. It is not drilled into men the importance of PSA’s nor all over the importance of getting checked. What is all over is ED and all the different pills, medications and testosterone ways to get ready for that night which that is what the emphasis and everyone knows of not getting checked for prostate cancer.

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@wheel1 Candidly, before diagnosis....I knew nothing about prostate cancer. I didn't know about incontinence or ED, let alone the variations of those side effect profiles with all the various treatment options.

I was clueless and oblivious....till I wasn't. I didn't even know where or exactly what the prostate did.

But, you're right. Knowledge of the breast cancer journey is well known even to most men. And, yes, perhaps it's the stigma of the reality of PCa treatment is what keeps it from being known beyond our small communicties.

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Profile picture for thig350 @thig350

I have been thinking about this a bit more and I think it is an interesting and very relevant topic. The whole prostate cancer diagnosis and related process and procedures is not glamourous. How does one describe the prostate biopsy process to another? If I were to share how I was doing at the initial stage of the process am I really going to tell someone what I had experienced during the biopsy procedure (why being awake didn't work for me and I needed to be sedated....)? No way. Or what the waiting felt like for the biopsy results. Nope. We all know what that was like but I wouldn't share with someone who was asking how I was doing. Same for what it is like choosing a treatment plan. Like, yeah, I can hammer my body with radiation or brachy therapy with seed-like implants and hormones or I can have my prostate and other tissues removed and a catheter inserted in you-know-where. People don't want to know this nor do they want to know what it i like to face ED and incontinence and the impact both have on a relationship. And let's not forget on-going PSA testing which will, in part, dictate the future. And they definitely don't want to know about one's thoughts and feelings regarding if it gets bad am I going to be around to watch my child's wedding or celebrating my own milestone wedding anniversaries. Yes, people generally mean well. They try to be kind and supportive. Perhaps some can handle the truth. But I opine that most can't handle the truth. Which is why aside from my wife, I keep the details private and I am grateful for the folks on this forum who provide knowledge, empathy, truth, and humor.

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@thig350 Oh yeah, you describe the whole emotional/physical roller coaster ride well.

I found that only a couple of my really good friends who are note PCA patients might politely listen to what is going on with me....but think I"m surely freaking them out at the same time.

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Profile picture for northoftheborder @northoftheborder

@surftohealth88 You're right, but I'd suggest that "dementia" scares people even more than "cancer".

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@northoftheborder Oh yeah, don't go there! (my mom had dementia....so yeah, dementia wins for sure)

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Profile picture for thmssllvn @thmssllvn

In Florida when routine friends socialize the 'organ recital' often starts the conversation. Many people forget the ceremonial use of language. 'How are you' is merely a silence breaker not a solicitation of a litany of ailments. Part of the reason I like to curtail detail is that it gets repetitive and boring. I often reply by saying. 'Everyday above ground is good but it used to be great'. A variant opener to 'How Are you? "All the better for you asking" That said occasionally revealing
an ailment may be very helpful to others if you can steer them in the right (informed) direction. Similarly, useful advice is a two way street. However there is no substitute for this support group for advice.

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@thmssllvn I agree...there is no replacement for this support group. Candidly, I've tried several forums and several online support group meetings.....this forum has been the bet of all for me.

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Profile picture for TurtBean @turtbean

Here’s how I handle the generic “How are you?” question with someone who’s aware I have PCa:

“Hey, Turt, how’re you doin’? You makin’ it ok?”

“Yeah, I’m fine, thanks. Last screening came back undetectable, so that’s good. Next one is in…two months. Still peeing myself, though…not nearly as much as I used to, so I’m down to lighter pads now and wearing them longer, so I’m on the right path that way. Hopefully, another two or three months and I’ll be pretty much back to normal. Of course, the ED issues are still there, but I get some glimmer of hope every now and then, like I woke up to go pee the other night and actually had half an erection - that’s encouraging, to say the least. How’re you doing?”

“Uhhh…um…I’m fine. I’m startin’ 9th grade this year so…uh…yeah, that’s excitin’…um…I think I hear my mom callin’ for me…I gotta go…”

Ba-dump! 😆

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@turtbean Hah-made me laugh!!! Not sure this would work as a pick-up line in a bar either...

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Profile picture for prowler6b @prowler6b

I share fully only with one close friend who has had prostate cancer at a much younger age than I and has had a better outcome. Other people, no matter how close a family member, really only want to here that you are FINE.

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@prowler6b Yes, and yes. It can be very isolating. But, just know that there are a lot of great poeple here who are super glad to listen and support.

You don't need me telling you this, but feel free to share here whatever your state of mind is.

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Profile picture for rwski79 @rwski79

I believe in the "need to know" philosophy and respond with "So far so good" or adding "One day at a time is a pretty good pace and thanks for asking." In other words, if there is not a real "need to know" about my condition I keep it simple. For close friends or others going through similar cancers I am more detailed. "Hey, how about coffee and we can talk." This can lead to deeper, meaningful conversations for both of us. Sharing the good and not so good is a healthy stance benefiting myself and hopefully the other person in similar straits.

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@rwski79 I really like that approach...."need to know." That's how I've managed at work (only one person at work knows and its for that reason.

Someday, maybe I'll be the pubic education and advocacy guy....but right now, it's just my closest friends.

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Profile picture for fritzo @fritzo

@northoftheborder Oh yeah, don't go there! (my mom had dementia....so yeah, dementia wins for sure)

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@fritzo Colon cancer took my father before his dementia prevented him from recognising me and remembering helping to raise me. That's not a silver lining; just two nasty things.

p.s. Even if you have advanced/metastatic prostate cancer, keep getting those colonoscopies, everyone.

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