Your worst pain (physical or mental) during your PCa journey so far

I voted for "post-surgical issues, including catheter". It was close to a tie with "mental".
I wasn't shocked by my diagnosis, since I had been circling around it for years. It was almost a relief.

I was depressed in the hospital and struggled with the catheter. I wasn't sure I could manage it at home. Things got much better, however, once I was home, and after a few days at home, the catheter became more of an annoyance than anything. At first though--wow. It threw me for a loop.

I had some minor post-radiation issues that resolved on their own. No big deal.

I suffered from a lot of anxiety and morbid thoughts when my PSA rose after surgery. Getting started on SRT quelled a lot of anxiety, and then I was elated with the results, and the fact that prostate cancer wasn't going to kill me before my son went to high school.

So both mental issues and post surgical issues have affected me, but it's the first few days after surgery that stand out as a dark time.

The worst for me was being forced by my original urologist to read outloud my biopsy report to my wife and him. I guess he couldn't tell me I had aggressive prostate cancer at age 44...he preferred I'd tell myself the great news.

Jerk...fired him the next week.

All -

Thank you all for participating! As usually happens, we have had a good number of exceptionally insightful responses to the question of what has been for each of us the "worst pain." And the results of the poll above are useful, and perhaps even a bit surprising.

I had actually thought the poll would indicate a wider spread of pain experiences. But so far about 75 % of the responses have indicated that mental issues (including reaction to initial Dx) are dominating our pain perception. And within those mental issues, as to what drives them, fear seems to be the overriding factor.

Personally, I was especially struck by two of the posts made. The first, by Redwing57, in which he said:

"The mental aspect was wrenching. That night, or the one after, I woke up about 3am and couldn't sleep. Sitting on the sofa, I listened to some music that was meaningful to me. I found myself actually, physically, trembling for no reason other than abject fear. I've never experienced that before in my life for any reason. That was the worst time in this whole journey."

Thank you, Redwing57, for your extraordinary candor in sharing with us your state of mind on that awful, stressful night. I think your words have captured what many of us probably felt ourselves on that first post-Dx night: fear so powerful that it made us tremble. Thank you for your remarkable insight, and for taking a moment to share it with us.

I was also struck by Purgatory's remarks, similar to what I had observed, that the poll results above pointed to mental rather than physical pain as our dominant concern. David, it would be understandable in your case if your attention might be concentrated on your physical pain much more so than your mental. However, I would also suggest to you that in your case it's probably more that you have such a strength of will, that you have dominated the mental aspect of your pain and simply made yourself the master of it. Hence, it doesn't concern you as much as your physical issues. I have always very much admired your strength of will in your situation, and I think that is what is going on here, you have just said "no" to the mental pain and made the decision that you will have none if it. In that regard, you have always served as such a model of pain toleration, both mental as well as physical, for the rest of us.

But if the poll is right, I think it does offer certainly one valuable suggestion: that when people come here to the forum expressing their anxieties and fears about pain that they fear will come with their PCa experiences, we can inform them that the experience of those who have preceded them would seem to indicate that it is the mental pain that is likely to be their worst enemy, and that when they understand that, and learn to control the mental pain they are or will be feeling, especially their fears, then they will be past the worst of it, and they will be all the better for it.

Indeed, it can be pointed out to them that mental anguish from the Dx has possibly been shown to be the single worst instance of mental pain in this journey, and since they have already gotten past that, then they should have reason to be hopeful about their pain issues for the rest of their journeys.

I think this thread has established some very valuable points about pain in the PCa experience, and I know I have learned from it, and I hope we all have.

Again, thank you all for your participation!

A true seminal thinker, you my Bruddah!

Tim G said...
Coping with the knowledge that I had prostate cancer was the hardest for me. My first thoughts were "Why Me?" and self-pity grew like lard on a pig. Over time my thoughts changed to "Why Not Me?" That has made all the difference ever since.

Good post, and a great saying I hadn't heard before. That's the second one I hear today that made me laugh. First one was a friend talking about her kids who said "it's like herding kittens".

I guess it depends on where "mental" evolves into "pain."

As I mentioned on another thread a while back, obviously hearing "you have cancer" was a shocker, and it was not even said to me. HE has cancer.

We had about two weeks to dwell on the shock until our first appointment at MD Anderson. In those two weeks, I was able to garner just enough knowledge to scare the begeezuz out of me.

Once we got there, I quickly discovered what I would later call "my walk of pain."

With each new appointment on each new day, the news just kept getting worse and worse.

After each new finding, I would walk outside down to the corner to call family and let them know the latest news. Sometimes, I just walked out there so my husband wouldn't see me crying. He was already hearing the same bad news and it was HIS body they were talking about. I couldn't begin to imagine what he was feeling, if I felt such immense pain in my own heart.

Indeed, it was a "walk of pain," as my heart ached in ways it had not, aside from the passing of my little brother.

The first year, we remained pretty numb. We spent approximately 100 days at MD Anderson that first year. It seemed impossible to get relief from the numbness, with so many stays there.

Aside from the side effects, we have now mostly been able to put prostate cancer in the rear view mirror. Sure, we have to wait for PSA tests, but they don't alarm us as they did in the beginning.

One thing this beast has taught me is that worrying about tomorrow only robs me of the joys of today.

When/ If the other shoe drops... at least we will be able to look back on the last year (and hopefully many more years to come) and know that we didn't give that time to the beast too!

Soooo, I was stuck between "mental" and "pain" when choosing.

Post Edited (MsWorryWart) : 11/15/2013 1:06:03 AM (GMT-7)

MsWorryWart –

Your post above was very touching and moving.

Maybe I should have added a choice in the worst pain poll above just for our forum sisters like you:

O His pain

I certainly know it would have been the instantaneous choice of so many of you fine, devoted ladies.

Thank you for sharing your feelings and God bless.

Just after being told that the PCa was confined to the capsule, nerve-sparing and no positive margins (all darn good news) to have the surgeon tell me that he'd also dissected three enlarged pelvic nodes and that there was lymphoma in all three.  This hit me out of the blue.

Pain is a relative issue.  Nothing that I experienced during the diagnosis or surgery of my prostate cancer caused me to acknowledge any real pain.

However, I have suffered from an inoperable degenerative back conditions for much of my adult life.  Stenosis and spondylosis pain caused by heredity and overuse have allowed me to mostly ignore other transient painful conditions.  It's not like I am a stoic , I complain all the time, just ask my wife.

I just never felt any pain during prostate diagnosis or treatment that was as severe as the chronic pain I suffer every day from my back.

It is hard to imagine the pain caused by end stage cancer, but prostate surgery unless there are complications is pretty lightweight.

 

in addition to my earlier thread saying the diagnosis was the worst thing for me.
i would like to add that the following 4 mornings i woke up i hoped it was a bad dream.Then i realised it wasn't!! won't forget that. at least am now out on the other side and hopefully through it(depending on psa result in a few weeks time)

Havanon, the uncertainty will be greatly resolved in a week or so when you get your pathology report. You'll know where you stand and I wish you nothing but good news.

The physical pain you descrbe will go away quickly. Every day will be a great improvement.

Lieutenant,
As you may have noted my 1st response was "shock at being diagnosed" followed closely by mental. I feel sorry for my brothers who may have to endure hormone therapy for life. Although I have mentioned "high" and Lows" of lupron I have never mentioned to anyone my horrible "flashbacks" which I haven't had for many years..Old age, lack of physical activity, the pain of members on this post, or lupron. I have violently objected to Tony's recommendation of orchiectomy for some patients. Unfortunately, I wrestle daily (nightly) with past experiences of delaying calling med-evacs based on soldier's requests wnen they hit a chi-com anti-tank mine and their lower body parts were destroyed and death was preferred for these young men..Dammed if I do and dammed if I don't..Maybe I'm just bad!
Bill.

For me Id have to say the treatments.....The side effects of Zytiga while bearable are probably the worst thing Ive had to go thru....mainly the fatigue it causes and the morning sickness I seem to have every morning...lasts about 1-2 hours....never really throw up but I feel nausea almost every morning. I never had any pain with IMRT, 10 days of radiation to the back and now radium 223...maybe just a little fatigue during the radiation.

Never had any continence issues but am experiencing ED issues from Zytiga/HT combined. I guess Id have to say the very worst thing Ive had to deal with during my 2 and a half year ordeal is losing my active sex life. Its gotten better, or Ive come to accept it but it was rough accepting it at first.