How do you want your friends, family, and others to talk about you, vis a vie prostate cancer? When others talk about you, what do you want them to say?
When others talk about you, what do y... - Advanced Prostate...
When others talk about you, what do you want them to say?
DarrylPartner
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Darryl
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From the original post, how do I want people talking about me and metastatic prostate cancer?
Well for one thing, I don't want anybody in the workplace talking about it!
And as for extended family and friends, I'm not enthusiastic about them talking about it a lot, especially when they get confused between a terminal diagnosis which is metastatic prostate cancer and their uncle who lived till 90 with non- metastatic prostate cancer.
In many situations the whole thing just becomes unproductive and unhelpful gossip.
Talking about support though, and even better, providing support, and situations where one debilitated in some way, or where there are financial pressures etc., that's different.
Or learning about navigating the healthcare system too.
And as for immediate family, one doesn't want to hide the situation I suppose, but there's value in putting on a brave face. This is not a popular approach these days. (Stoicism is making a comeback though!)
Let's consider the opportunity cost of talking about one's health and feelings all the time.
Highlighting the presence of illness, especially before serious debilitation shows up, takes up thinking time and talking time. This is especially true if talking about illness is just unproductive rumination, and not talking about real health decisions and understanding. (The focus on feelings provided by many healthcare organizations isn't really that helpful, to my mind.)
I think we all know situations where the only thing that is talked about in any given family is problems, problems, problems all the time. And people do have problems!
Yet time is precious to us! Are "feelings about problems" what we want to fill our remaining days with!?
Consider instead the talk of real life: humour, work (or lack of it), progress at school, history, family history, friendship, politics, religion, friendship, philosophy, a book or a movie or a program, culture, sports, music, family operations and chores, plans for the future - one could go on.
These discussions are the kinds of things, including the challenging things, that make a child or a young adult who they are. (Unless of course one holds with recent views that parents and family don't matter.)
If a health discussion becomes the definition of identity, it's kind of sad.
So in writing this note I've got myself to the place of questioning the premise.
The original question was simple and direct. It becomes worthwhile if we accept that "how much" and "for what purpose" and "the right kind of" are part of the question. Admittedly the context of my note is that I am still high functioning and don't have serious debilitations yet.
Therefore, thanks for highlighting the question!
Coincidentally today: x.com/AdamMGrant/status/183...
How do I want my family and friends to talk about me, regarding my prostate cancer?
I Dx'd in Spring 2019 and my immediate family who are scattered around the country are the only ones I have told, with a request not to repeat it. Some will repeat it anyway but those they tell I'm guessing will not discuss it with me. Even my next door neighbors don't know.
Why, because I'm not just being stoic but because I don't want to be treated any different than anyone else. I dislike pity parties and having to hear, "how are you feeling today". So unless you are a doctor what would my reason be?
JJ
Nice approach. I'm not sure that it isn't in fact a pretty good example of being stoic! 😃
Thought you might say that but privacy is more important to me.😶
BTW, I am going to try and post a QoL in the morning , check it out 😏
I shudder a little when ‘being stoic’in everyday language is confused who stoicism as a philosophy which certainly is not stiff upper lip and hiding feelings ! But sorry that’s my hobby horse!
What do you think Sim of today's modern world where feelings become a commodity? And we are encouraged to become peacocks of emotion?
I don’t really either see this as the situation. Of course, I am going to be be guilty now of saying and trying to clarify the question, if it is a question and not a statement.
First , the phrase ‘today’s modern world’ - that is huge scope and risking huge generalisations.
So what are you referring to ? USA, UK, Spain, Italy, China, Australia, Russia, - poor, rich, old, young, city dwellers or rural -, religious or atheist or agnostic Etc etc… so my first query is who or what are you referring to, who and the modern world is too vague.
Feelings as a commodity? - well feelings are obviously can be used by advertisers, politicians propaganda, religious leaders, social media users, etc etc. to manipulate people by using our natural human susceptibility to feelings, this has and always will be part of all societies - not particularly just todays modern world . Read the Greek tragedies or some Tolstoy or Puccini or poetry, good and not so good. Full of emotions and yet reflect our lives even if written centuries ago or from a different not modern world. I’d hate to dismiss this as just some ‘Peacock, or is it ok if expressed as ART, but not as just ordinary people?
Maybe learning to be more emotionally literate and express the reality of how we experience our lives and struggles, pains, joys, fears and pleasures is a good thing.
I’m not talking about some kind of emotional incontinence that has always and will always exist at times and in places such as propaganda and manipulation.
However on balance given there is a sub message to your question, if I try to answer that my thoughts and feelings are that we maybe confuse genuine expressions of emotions with surface and shallow manipulation by some groups and cults which I do think is a problem but not sure it’s hugely different today.
I am In favour however of any attempt to encourage people to feel free to say what they feel or NOT to, but that choice should be free and not constrained by other and met with support and empathy.
Is it more a commodity today than in the past ? I’m not sure, I think it does change over time and with different eras, cultures, countries and even within different families. On balance I think we do not do enough thinking about our emotions and how to share and express them.
Not sure that answers your question though,
interesting question Daryl. The short answer is; loving & caring husband, dad, grandad & friend. I don’t want to be defined by my cancer diagnosis. I know many cancer sufferers find it helpful to be viewed as fighters / warriors & if this helps them then that’s great. However, I just don’t find that’s how I feel. As an ex-engineer and project manager I made a plan after diagnosis and just try to stick to that plan and tweak it when needed. So from an APCa perspective I’d like to be thought of as someone dealt a bad hand relatively late in life and trying to make the best of it for me, my family and friends and still having some fun. I also want to be seen as being truly open about my cancer and treatments if anyone wants to chat about it. When I had my full complement of Testosterone I was more of a ‘man up’ guy now I’m more of an ‘open up’ guy 😊
Hmmm, “open up guy” that happens to me when my estrogen is high 😀
In August 2002, US public radio's "This American Life", out of Chicago, hosts all had their testosterone tested.
Shockingly (although some unsympathetic people were not shocked) all their T levels were lower than what most doctors would suggest would be a reason for intervention.
(Let's not even bring up the question of the relationship between progressive ideology and testosterone.)
thisamericanlife.org/220/tr...
J I M - I couldn't stop laughing. have to finish later though. I'm trying to Post and need to add two pictures but HU only lets me add one, can anyone help me?
Hobierat
JJ
?? you can make them into one picture fairly easily with any picture editor ??
OK,thanks
I probably take a very different view on this Both from a personal and professional perspective.
I am definitely not in favour of avoiding or hiding health related issues. I have maybe a different history of being a disabled person and health professional before being Dx with PCa in late 2019 aged 69.
I was one if the last kids to catch polio before vaccination was widely available in U.K. in January 1956 (unlike USA where it was given the ok earlier).
So I have lived with the paralysis which was total initially and then extensive, but mostly upper body arms and breathing- so I lived through a time when diseases and disability were often hidden, people avoided public discussion and even families (not mine) avoided talking about their disabled children or relatives. Many learning disabled people were hidden away as society didn’t want to see them as part of the whole society we live in.
I’ve married x2 and had children and worked all my life first after 4 years at art school as a designer and artist and film maker and then in my early 30s went back to university to become a psychologist.
After initially getting to walk again, I have now again used a wheelchair off and on for the last 30 years - now more often and used a ventilator at night to breath since I was 50 and now some of the day. I still work and have navigated my Gleason 9 ok til now 🤞albeit by insisting on medics treating me with the intention of my life being more than a few years - misunderstanding that my polio isn’t going to kill me first!!!
My point is not to pat myself on the back or claim any special abilities, but to say that I always tried to be me, not hiding my disability (as if I could) and any impairment was of course not helping me it just protected others from embarrassment or facing the reality of all our lives, theirs as well - I have cancer (they could have cancer one day) and is part of my life now, like being disabled ( again one day you might be disabled person too) - if I hide it from anyone, in my experience it eventually makes things more complex and definitely prevents others from both empathising and helping.. all our physical and mental states vary across and within life’s journey and we all share that … just some of us are more impacted than others.
So I want everyone to accept that I will mention it when it’s relevant to me at any time and, within appropriate social and work contexts, anyone can ask me and I’m open about my prostate cancer and any effects, worries, sexual or other things I am experiencing.
My experience is that it’s OTHER people who want to avoid it - even if I mention it be that my polio and disability experiences or PCa.
I think maybe I have a different perspective and because a lifetime of fighting prejudices and discrimination at works and in society taught me there’s no mileage in denial, hiding or keeping medical issues a secret ! And as a psychologist I am well aware that letting it dominate who you are is not ok either, but it IS part of who I am, both the cancer and my impairments.
Sorry that was a bit of a long unedited ramble !
we don’t talk about it, nobody’s business but my own.
I actually prefer to talk about this only with strangers on forums.
I try to live as much of a normal life as possible. Outside of my wife and kids, the rest of the family does not even know I have cancer. I do end up turning down most family events that are in the evening but that's because I am simply drained of all energy after 19h00 when on ADT.
I want them to say "Did you hear he has prostate cancer? He also has a urinary infection and a festering carbuncle on his anus."
It can get unproductive and a huge downer. Within limits, genuine support is a benefit.
I mentioned publicly in my small church that I had prostate cancer, but did not make a big deal of it. I privately mentioned to our two ministers that I had a condition that could be terminal. The initial diagnosis was level 5 severity, Gleason 9 in half of prostate. I was non-metastatic.
Over nearly the past year I received ADT and SBRT. The first follow=up post radiation showed no active cancer and my oncologist declared my cancer in remission. I am 85.
Nowhere in my treatment locations was there a bell to ring. So. . ., I took my real brass bell from my model ship to a church service and rang it loudly. I declared myself at the end of a successful treatment and killed all the gossip. Worked well.
What was useful was the number of other men who shared their prostate cancer journeys with me. This development was welcome and a great comfort. I had no idea so many others had experienced the same problem.
My experience.
I told my immediate family when I was diagnosed and let them know how my treatments went. After that life goes on as normal.
I have not noticed any real changes in our immediate family dynamics. We are a close small nuclear family - wife, kids and grandkids with no other family to speak of for my wife or I.
Wife and I married after college and moved 3000 miles away and never returned. By the way that was the best thing that ever happened to us. It made us truly independent, self reliant.
I told a lot of friends originally; to explain my absence from activities. I bring it up occasionally if talking "health" with friends, esp younger men. The few I explain the "temporary" SEs too are stunned. The fewer I explain ADT, Trimix, etc to are horrified. So, I really limit it to close friends who are interested. I don't share my personals other than the fun of being totally incontinent for a couple weeks after the surgery.
My biggest disappointment has been my female friends. The few I have talked to about the temporary or permanent SEs, esp impotence, are almost uniformly unsympathetic. These are long time friends who I knew as they went thru pre-menopause, menopause, and post, and all the "fun" things that happen to women during and after. So, I get the strong sense of "Welcome to My World.". I think the big difference too is that libido/potency do not define most women, like it does most men. Women define themselves differently. Mother, wife, matron of the family, etc. All speaking very broadly of course.
I'll leave it on a high note and recommend people watch the Seinfeld epsiode "The Contest", which very humorously and tastefully addresses the differenced between men and women.
; )
7 years ago it was an open discussion and friends and family got educated. But then when I was about to enter hospice as my body was shutting down the communication totally stopped except those who were full of the Holy Ghost and the prayers were non stop. When doctors and medications gave up those prayer warriors didn’t. That was 7 months ago and now we have a discussion how good is god.
For the prayers of the righteous avail much, where 2 or more are gathered in his name God does hear and if it’s gods will to answer those prayers even mountains can be moved.
So the discussion of praise continues in and around me and those non believers in my friends and family don’t say nothing. As they don’t have the Holy Ghost living with in them and don’t understand the magnitude of prayer and a loving God.
At this point I tell them obviously God has a plan and isn’t done with me yet. Most say, that’s nice, that’s wonderful, and my favorite “I don’t believe in that stuff”
And that’s the end of the discussion.
I live in a small town surrounded by a huge city. I am very involved locally. Retired, no kids but a huge circle of friends. When I received my Dx, we told a few friends, one of which told "the mouth of the south". I was soon getting well wishes from a lot of people I didn't know.
I then decided to put my story out on Face Book. I felt it was important to tell as my PSA was "normal" 3.5 and I had to advocate big time for myself to get to my G9 metastatic Dx. I ended up going to a Uro as my GP stills does the digital exam and noticed some enlargement and firmness. My story was shared a number times after the FB post and I was sent notes from more people I didn't know thanking me.
Since then, I now have 4 friends who have gotten their Dx of G7-8. They all say it was due to my story that they were able to find the cancer. Others in the community have also come up to me to thank me as they are now more vigilant.
I don't get the sympathy card from folks. I can seen every morning walking the sidewalks for 4 miles, people just say I'm looking great. If I can be a conduit to help others, I'm all in.
This is a highly personal decision.
I’ve obviously made the decision to be open, maybe too open, about my diagnosis and prognosis. This appears to be unusual as most of the guys here seem to be of the stoic persuasion. I figure, if this thing ends up killing me, I’d like to leave a mark on this earth, maybe educate others, so I made my comic. I’m happy that others have seen elements of their experience while reading it, so that’s gratifying.
I share everything with my soul-mate, my loving wife, who makes things easier. She’s my best (maybe only?) friend, so who else can i share this with? I do feel guilty about what she has to cope with. I also share all of my medical info with my daughter (our only child) because she’s smart (she’s an emergency veterinarian), and seems to want to know the details.
I will occasionally “use the cancer card” if someone in public isn’t being helpful or is being annoying. What the heck! I have it, I might as well get some benefit from it.
My husband asked me not tell his family that it came back (after prostate radiation seven years prior which they did know about). So only share here and with my own siblings and also an ex sister in law whose husband has this too and who is just staring triplet. I understand this view as otherwise people worry and think you’re going to die tomorrow and then they ask you about it every time they see you. He doesn’t want it to define him. Except now he has a little Lupron belly so his Speedo days are over!
I don't care who knows AT ALL. Before my biopsy I told family AND friends I was having a Prostate Biopsy and also said I likely had PCa because my PCP felt the lump in the right side of my prostate.
MONDAY morning April 13, 2015 my wife and I met with the Urologist for BIOPSY + SCAN RESULTS. Was told I needed to immediately begin ADT to which I told him I wanted an Orchiectomy. He tried to dissuade me and finally said OK. Hours later I had my Pre-OP at the Hospital and surgery was scheduled for TUESDAY afternoon April 14, 2015.
Tuesday Morning at 8AM on April 14, 2015 I bicycled to the Park where the Group met before our Bicycle Ride. Said HELLO and then said that I had Prostate Cancer and in a few hours I will be having *The Boys Removed* to begin my PCa treatment. Told them that if Lance could ride with ONE then I could ride with NONE. Being open and informative to others and continuing to RIDE HARD they call me PSYCHO JOHNNY. A couple of years later I had another biopsy for a recurrence and a couple of days following the biopsy I bicycled 5 miles on a Saturday morning to our LBS(Local Bicycle Shop) to see the group before they left for the Sat. AM Bicycle Ride. I just wanted to say high to all and apologized for not being able to ride that morning. They asked why I couldn't ride so I Pulled up my pant leg to reveal that Mr. Foley had come along for the ride and he was not in the mood to go fast and long.
I've never kept quiet about my PCa or treatment protocol and hope I give some positive insight about PCa to others so they can discuss about their situation if PCa enters their life.
“Told them that if Lance could ride with ONE then I could ride with NONE.”…standing ovation for your attitude! 😀
You're right Harold............ he really is a Schmuck....
Good Luck, Good Health and Good Humor.
j-o-h-n
Actually the best thing is for them to simply ask "How are you"?Then just listen to you.
If you laugh they need to laugh l.
If you cry then it's ok if they do too
When you are quiet they need to be quiet.
Might be hard but they need to be there for You not them.
I made no attempt to keep my diagnosis private after my initial biopsy and treatment 3 years ago. Inevitably, word spread in my community and soon I had a few people telling me they had heard I was terminally ill with only a few months to live. The actual truth in a word of mouth chain naturally deteriorates as more people add their twist to the juicy story.
The reason I don't mind people knowing/talking about my diagnosis is that through the grapevine I learned of other men that I knew that had been diagnosed with prostate cancer and were wiling to take with me about their treatment and experiences. This was exceedingly helpful to me the first few months/year after my diagnosis. I probably talked to 10 men in my community, some of which I didn't know had prostate cancer until word got out that I had been diagnosed. I have had the privilege of helping a few other men recently diagnosed. Had I kept my diagnosis secret, those men would not have been able to reach out to me.
my mother is 95, still independent and living on her own. To avoid killing her at once, she does not know. I was even able to pass my chemo hair loss as an attempt to make my hair healthier, together with my new diet. And thank god, my hair got back thicker and darker!! 🤣🤣
Apart from my wife, my brother and my sisters know as well as all my nieces and nephews. Then a select group of friend that are able to avoid gossiping. Not that I care about that, but to be sure to keep my mother uninformed! I must say this experience created some new and very positive and fun friendships with people I wouldn’t have imagined to care so much about me 🥰🥰🥰
I don't give sh--- one way or another.
Darryl, how about starting with this group and what I don't want others to say? Some members, one being the seemingly elevated _ , can be harshly judgmental, critical of members and even doctors.
IMO your platform has the most experienced and intelligent patients I have read in any group. Shame when some members denigrate others.
I ran into a longtime townie acquaintance, somewhat older than me. "How are you" lead to my telling him I have PCa. He said he has had four cancers so far and is doing OK. We now have a real common bond and my regard for him has gone up a lot.
PCa has certainly brought me humility and there is little point in trying to hold in such news when it clearly has affected one a lot.
I am on SS Disability, so my interactions are limited to family and friends. I am happy to have them ask questions about how I am and anything else related to the disease. I feel that complete transparency and discussion of the disease, especially with men is the only way to get men to take it seriously and get their PSA test and digital exams.
My husband's response to this question: "I want them to say, 'I am so inspired...' . My friends have known about my conditions for almost ten years and we have talked openly about it with them. Most of them pray for us."
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