1. < Prostate Cancer

Survivor guilt (?)

Posted by northoftheborder @northoftheborder, 4 days ago

I was in a critical medical condition in 2021: besides a de-novo stage 4 prostate-cancer diagnosis (and the expectation that I'd live only a small number more years, some of them very sick), I had a cascade of other serious medical issues.

Since then, a younger, healthy member of the extended family (by marriage) passed away in a sudden freak accident; my childhood friend died when his lymphoma from 20 years ago came back; and I just heard that the mechanic who helped take care of my plane when I was in hospital back in 2021 died of an unspecified type of cancer last month (he was a little younger than I am, still in his 50s).

"Survivor guilt" is a technical term. I wouldn't say that I feel guilty per se, but it seems strange and even unfair that I was the one everyone was worried about back in 2021, but I'm still here for some reason (and actually doing fine), and they're not.

I'm sure some of the rest of you have experienced this as well. I did everything I could to help myself, of course, but so did my friend with leukemia (probably even more so); in the end, it's just dumb luck.

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

northoftheborder | @northoftheborder | 1 day ago
In reply to @brianjarvis "I was fortunate that I first heard about prostate cancer and PSA testing in the mid-90s..." + (show)
@brianjarvis

I was fortunate that I first heard about prostate cancer and PSA testing in the mid-90s when I came across articles similar to these (see attached).

It was then that I committed to getting annual PSA tests when I turned 45y (in 2000). So, exactly 1 week after my 45th birthday, I had my first PSA test (it was 1.3 ng/mL).

If it was going to happen, my goal was to catch prostate cancer early. About 12 years later (at 56y), I was diagnosed with low-grade, localized prostate cancer.

If I hadn’t seen those articles in the mid-1990s, not sure how I’d be doing today.

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That worked out well! It's great that you caught it early, while it was still low grade. ❤️

The type I'm talking about isn't the one that starts low-grade and develops later, but the one that starts already at the top of the scale (Gleason 8 or 9), is maybe near the outside of the prostate (??just guessing on this point), and somehow escapes the prostate quickly into the bloodstream to form distant metastases. That one is a really hard to catch in time, because there's almost no warning or build-up. I suspect it's overrepresented here in the forum, because we're the ones who are young enough to be online a lot (not that we exclusively own computer ability; my mother in her mid 80s is very Internet savvy, too), and we're lifers, so we keep coming back month after month, year after year. The people with 3+4 or 4+3 that's quickly resolved probably don't hang around more than a few months.

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northoftheborder | @northoftheborder | 1 day ago
In reply to @scottbeammeup "I don't feel survivor's guilt per se but there are a few people I know that..." + (show)
@scottbeammeup

I don't feel survivor's guilt per se but there are a few people I know that died unexpectedly and there are things I wish I had said to them. I really try hard now to let family and friends know I love and appreciate them.

My biggest guilt is probably that my mom had to die among strangers from COVID and we weren't allowed to see her and that I had to attend her funeral on Zoom which was awful--she deserved so much better. If I had to do it again, I would get some scrubs and sneak into the hospital to see her consequences be damned.

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That is terrible. I was in hospital post-surgery for two prolonged COVID outbreaks and ward lockdowns in 2021-22 (no one allowed in the room except nurses and cleaning staff in biohazard suits), and while I didn't contract COVID myself at the time, I really felt for the people whose lives were ending in those conditions. You can't imagine what the isolation feels like until you've experienced weeks of it. And your scrubs thing might not have worked: they stationed a security desk and locked door at the my ward entrance each and checked everyone entering, so don't feel bad about not trying that.

In the end, it's your whole life together that counts, not just the last days or weeks. I know you had many good years and decades with your mom, and I hope those memories far outweigh the short, difficult end. ❤️

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airportone | @airportone | 16 hours ago
In reply to @grandpun "Thanks for initiating and adding too this string of posts. Yes, survivors' guilt comes in many..." + (show)
@grandpun

Thanks for initiating and adding too this string of posts. Yes, survivors' guilt comes in many forms. My dear wife of 53 years had multiple sclerosis (MS) for the last 20 years of it and I was caregiver. In Jan of 2022 we both contracted Covid. Mine was like a bad cold, her's started that way but the autoimmune disease modifying therapy (DMT's that suppress the immune system) sent her on a fast track to lung failure.
Could I have done more? Made her more comfortable over the years of quadriplegia? Challenged her more to retain function? And worst of all, could I have been somehow glad to be relieved the stress and strain of her cursed MS???
Don't know. And in spite of super support from our 2 grown and very wonderful sons - it still haunts me.
But life does go on. And I try, sometimes too hard, to make the most of every day. Fun and service to friends, family, and God (choose your concept) are great distractions.
(PC is now only an unwelcome distraction at this point of zero PSA's for the last 3+ years)
Blessing to all you guys and prayers you can enjoy some of all of your 'bonus years' after diagnosis.

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Diagnosed in May 2004, prostatectomy & Radiation in September 2004. My wife diagnosed with advanced Breast cancer in November 2004. She passed in 2009 after 33 years of marriage. Later I married a widow who lost her husband to cancer. The survivor guilt lessens but never goes away.

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