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

At some point during our individual journeys down the PCa road, there has probably been one moment so far which stands out as the worst for us in terms of physical or mental pain. That moment is probably very prominent in our memories.

What it could be varies for each of us, but as a group it is likely that some of these pain events are in fact common to many of us. Hence the survey above which may cover some, but granted not all, of them. Please feel free to vote for your "favorite" pain event.

But I do think a discussion such as this about our own worst pain experiences so far is more than just an exercise in morbidity. I think there is a value in identifying both what bad pain events are likely to occur along the way and when they are likely to happen. Also, there is then the opportunity to discuss what means we have found to be effective in stopping or alleviating the pain, whether through medication, exercise, etc., whether for physical pain or mental pain.

Such information when shared can then be very useful both to current members and to new people coming here, to alert them as to what they may expect in their own upcoming journeys, including possible encounters with pain. Discussion of and giving advice on pain management has a place here.

So, after voting in the above survey (which is certainly incomplete as pain events go, with "Other" covering a lot of ground) please post and describe your own pain experience (especially if you're an "Other") with any advice that you have to offer on how best to manage it.

Okay, I'll start. In looking back on my own two year journey so far, beginning with BPH and urinary obstruction in June 2011, I have identified my own personal worst pain moment. (In fact, I think I described it once in another thread).

I was in my hospital room recovering from TURP surgery in July 2011. I had a post-surgery catheter tube coming out of me and hooked up to a collection bag hanging on the portable metal stand beside the bed. The tube at that time happened to be under the sheet that was covering me, so I wasn't thinking about it. I was watching something on the TV mounted on the wall facing my bed. Bored with the program that was on, and wishing to change the channel, I propped myself up on my elbow and lunged over to pick up the TV remote laying on the tray beside the bed.

Unbeknownst to me, however, was that my elbow at the time was resting right on top of the catheter, which, of course, I couldn't see because it was under the sheet. The effect was to yank pretty hard on the catheter tube as I grabbed for the remote.

The pain was absolutely excruciating. I believe I mentioned in the other thread that it was sort of like accidentally sticking your finger into an electrical outlet. At least that bad.

I let out a loud yelp and fell back on the bed and lay there for several minutes experiencing exploding pain in my urethral/groin area. I was alone in the room at the time, and no nurse heard me yelp and came running in to see what was the matter, so I got to suffer in silence. Finally the pain let up after several minutes, and fortunately I observed later that there was apparently no long term damage from the event (such as blood showing up in the collection bag or such). Just a really, really awful pain event.

Moral of story: know where your catheter tube is a-t a-l-l t-i-m-e-s.

So, that was it for me. Now, does anyone else care to relate their own memorable little experience with pain, as well as any means you may have found that helped eliminate or lessen it? Remember, the pain can be physical or mental.

Hopefully, others can read and benefit from our experiences.

Thanks for posting this - I agree that it will be helpful for the newbies with respect to sharing our own experiences - the primary reason BTW that I'm still around HW. . . .

I voted "Shock of PCa diagnosis." I have always maintained a very healthy lifestyle, from the foods I eat, to the level of exercise - both cardio and weight training - that I do. No PCa in my family tree, and feeling incredible great physically and mentally - and then "You have Cancer."

That in itself is why this was an easy choice to me - but in addition to that I also felt no physical pain along my journey. I was sedated during the biopsy so no pain there, and no pain at any time during my LDR seed implant or post recovery. I went out to supper after the implants on a Friday afternoon, took it easy over the weekend and went back to work on Monday, cardio two weeks later and weight lifting a week after that.

For it's been the mental/emotional issues that have been the most painful. Depression being the worst. ED doesn't help that much.

I did radiation which doesn't have the same level of painful things compared to surgery. There has been some physical discomfort but no real pain.

Andrew

Not sure ED fits in the Mental group.
Anywho, that alone is my regret or "pain". :-\

I would say that the pain was the pain of disappointment. I had retired at age 58 just four months before the diagnosis. Was feeling fit and hail and anticipated an active life style going forward. The radiation treatment and the HT have held me down a good bit. The HT became burdensome about the second year when my strength and vigor left me like a deflating baloon.

As for physical pain I have not really had any related to the disease.

Don

The recovery room and the whole day in the hospital wasn't fun to me... I remember begging the nurses to help me to pee while I was in recovery.. Course I had a cath in...

Speaking of catheters... Had mine in for five weeks. I was able to wear shorts to work which made empting the cath real easy... But, I had two times where the cath slid down my leg and hit the floor... Still hurts just thinking about it..

The first few months I was dealing with big family problems and I'm not sure I will ever be the same as diagnosis/divorce/surgery/divorce/Hormones/divorce all intertwined....for too long I thought "how could this be" and it took a long time for me to realize "I let it be"...It took me too long to realize that I was responsible for myself more than falling back on my circumstances as my defense..the shock of being told at 41 then gleason 9 were shocks but I have 27 PSA tests alone that took a toll - If I contribute anything meaningful here it's support to those who are waiting and waiting and waiting...

This is a good thread (I also think I need to shorten my signature and will do so)...I did want to add that the worst moment, even though I voted for Mental) was being told 12 weeks post surgery with a PSA 6 that I would probably not live longer than 5 years (this was 4 1/2 years ago) - But the worst part of that day, learning we didn't get all the cancer after surgery - But it was my day with my kids - so I went to their school and they came bouncing as 9 & 10 year olds - I'll never forget that exact moment...being told what I was told - they had no idea - thanks for topic so I could share that...

Percy - Thanks for sharing that.

The mental and/or emotional part for me, was the least of my concern, being that it was my fourth diagnosis with a serious cancer in barely more than 12 years at the time.

In my journey, its all been about the physical pain. Don't think too many here had to deal with as much long term pain as been the case with me.

Starting post surgery, the 1 1/2 years I spent with catheters, the thousands of bladder spasms I endured, and still do every day.

Recovering from 7 other PC related surgeries wasn't fun either.

Then there was the radiation. From getting burned on the 4th through 39th treatment was bad enough, then living for nearly a year with a Suprapubic catheter, with the pain involved every 4 weeks when the Uro had to change out the tubes.

Then the Ileal Conduit Surgery, to bypass my burned up bladder/bladder nect - a very prolonged and painful recovery.

Then the rest of the radiation damage set in, leaving me with severe chronic pain, which I live with every day of my life. There has not been a single day since July of 2010 that I have not suffered with severe pain, despite being on large amounts of prescription pain drugs. Most of it attributed to severe radiation damage to my nerves in the lower half of my body.

So for me, its been about the pain. It never gets easier. It never gets better. And the only break I get is when I sleep, which is generally 3-5 hours per night. And according to all my doctors and experts, there is no hope of it getting better. If anything, the regions of pain are spreading further and further through my body.

And all of this, has been for naught. As my surgery failed within months, as did the radiation that so damaged my body for life. Meanwhile, my cancer continues to grow and grow.

It's been an unbelievable ride so far, one I never could have anticipated or planned around, but it is what it is, and I have to live with it, no matter what. This is why I promote quality of life over quantity of life. Until one lives the life of a Chronic Pain person, there's no total way for another person to totally understand what it is like trying to live a "normal" life, when some days, just standing on my feet, or walking about, causes so much pain.

Not complaining, its my lot in life, and I do the best I can with it. One reason I continue to try to help others, as it takes my mind off my own woes, and transfers my thinking to another person in trouble.

David

Base on the poll, am I really the only one here dealing with so much physical pain?

And looks like I may be the only one not really dealing with any dx. or emotional/mental issues, I would have thought that there would be others, though I realize our HW polls are very limited by sheer number so its easy to get high percentages with few inputting.

David

I voted mental just for the PSA anxiety that continues. Having to tell my wife was probably the most difficult part for me. In the pain catagory the bladder spasms were the worst pain I have ever experienced in my life, worse than any broken bone I've had. Fortunately for me I have not had to deal with any of the other side effects that many of you guys do. I wish the best for each and every one of you and your families.

I voted the initial diagnosis too. Kind of a fluke I took the PSA test to begin with, but I'm glad I did. The "C" word is one I wasn't prepared for, as many others have said, I felt fine. Luckily, during my journey, I have not experienced any real pain. Some uncomfortable moments with the balloon in my butt during radiation, the biopsy, etc, but that was not real pain. I'm fortunate. I did SBRT as many of you know, so I didn't have a cath or any of the post surgery issues, and so far, no side effects at all. reading this forum almost everyday, I know I'm one of the lucky ones. As long as my PSA keeps heading down toward my nadir, I'm good to go. A lot of you guys are true inspirations to me, with your courage and dignity.
Mike