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Posted 11/19/2014 2:22 AM (GMT 0)
From time to time I wonder whether those who have been dealt lousy prostate cancer cards, and have advanced prostate cancer, think that those of us who have curable, low-Gleason cancer don't understand what it's like to have advanced prostate cancer. Is that true? Am I the Prostate Cancer Village Idiot for thinking that I do understand?

I've followed many guy's stories here over the years since I first came on the forum and really feel for them and understand about what they're going through. Sometimes I respond to posts, sometimes just read (For someone who has been a forum member for 8 1/2 years, I don't have a high post count). Sometimes I don't know what to say that won't sound trite, and write nothing. To write "I understand" seems trite unless I've gone through the same experiences, but at the same time I think that at a deep level, and because I've taken the time to read what others post, I do understand.

And there are times when I read a member's post(s) and feel like I'm listening to Abbott and Costello's classic "Who's on First" dialog.

What do you think?
Posted 11/19/2014 2:35 AM (GMT 0)
I feel a little like I need to speak to this, because I've sort of thought about it a few times. I have been running around like a crazed lunatic here for the last two weeks, which I guess maybe makes me Abbott (or Costello , not sure which)

I'm one of the lucky ones, so far, with G6 disease, and while *****ing and moaning and worrying and looking for someone to tell me it's all gonna be ok, I've paused a few times and said to myself, geez, maybe I should shut my mouth because I see guys here who would give their left nut to be in my position.

But, selfishly I guess, I think about it and then continue to voice worry about my own situation, while I read signature blocks with 9 of 12 cores 5+4, ETC.

So I think I need to give my apologies to some of you, and just say, I never meant to be insensitive, I'm just not the most even keeled person in the world (in case you didn't notice) and I've been in a panic. I will probably continue to be fr a while, so I'll also apologize in advance in case I continue in my current mode,

I DO think of the fact that others here are not quite as lucky as me, and especially some who have reached out to me via email. And because of that I appreciate the support, and your situations, more than I can express.
Posted 11/19/2014 2:50 AM (GMT 0)
Pratoman,

It's perfectly natural--and expected--to totally freak out when you find out you have prostate cancer; doubly so in your case because you initially thought you were a Gleason 8. As you've discovered, there are a lot of caring guys here who have reached out to you in support.
Posted 11/19/2014 3:13 AM (GMT 0)
I am just the opposite. Lol I don't know didly about surgery radiation peeing my pant catheters etc. there are times I would give my left nut "hell I would give em both, they are pretty much worthless" to be cured but we play the hand we are dealt I suppose. It's not what we like but it's what we got. I was dealt a 2,4,9,6,jack. None are the same suit but with the right attitude I have lived a royal flush. People may think I am nuts but in many ways this disease is the best thing that ever happened to me.

It's cool guys. We celebrate with you. Besides. I been on H/T for 8 years have a t level of 5 and still get wood. Life is good.
Posted 11/19/2014 3:34 AM (GMT 0)
If you are "lucky" enough to have low-Gleason prostate cancer and don't realize how lucky you are NOT to have a high Gleason diagnosis or advanced prostate cancer, it simply means is you have not read very much here.
Posted 11/19/2014 4:12 AM (GMT 0)
I find it best not to compare "stories". Each man's journey is unique, each one has its own ups and downs. I don't consider any example of PC as being "easy". Depends what twists and turns spring up in one's journey.

For those of us dealing with advanced PC, or with complications, or both at the same time, its probably not always easy for anyone on the outside to truly say that "they understand". Goes back to having to walk a mile in that person's shoes, to truly understand what they may be feeling and suffering on a given day.

For some here, everyday might be all sunshine and pretty clouds, while for others, they are in the thick of a major hurricane with darkness all around them. It can vary to such extremes, and still be under the mantle: Prostate Cancer.

I personally, feel and empathize for any man dealing with prostate cancer, regardless of PSA, Gleason, staging, etc. For most men, it can and often is a life-changing event in their lives, one way or the other.
Posted 11/19/2014 4:16 AM (GMT 0)
Well, after reading your post Tim, I started thinking about how that works for me and my husband. When he needs me, really needs me to hear what he's saying about what he's experiencing in regard to this disease I cannot help but to sometimes say "I understand". And yet how can I? I'm not a man and I don't have cancer. What I do offer though is empathy because I know him. I know what he stands to lose. I know what this disease has taken from him. I know how admirably he has fought and will continue to fight until he no longer can. Through him, I know that attitude has so much to do with where he is, despite how his stats look because he's more than that.

Now, when you say "I understand" even though you're not Stage 4, I believe its because you say it with the right attitude.

Susan

"Who's on First?" Yes, that's a great description!
Posted 11/19/2014 5:05 AM (GMT 0)
I try never to say, "I understand." I will say, "That sucks" or "I know that part of what you're saying" or similar.

I have made it a policy of mine to only respond to a post when I think I can add something - encouragement, hope, empathy, or just to acknowledge that I've listened.

I can't compare myself to others too much - don't even try and for every post I do chime in on, there are many more where I keep my fingers off the keys.

Tim - over the time I've been here I've thought you to be helpful and voice that should be heard. But I think I get part of what you're saying and often feel something like it - I mean how many times do we have to repeat ourselves on some subjects?

Hang in there and keep posting. All voices are needed here.

Andrew
Posted 11/19/2014 6:33 AM (GMT 0)
I arrived just after Tim did and just before myman. I went through hell and back with an unfavorable diagnosis, a myriad of therapies, and emotions and fear like I had never felt before. But having the Tim's and the Susan's here encouraging me and bringing me hope I frankly didn't care that our cases were all different. Those encouragements were needed badly for me and like so many men (and loved ones) that come here that need to hear it. I know when one first arrives here regardless of Gleason or tumor size, they usually arrive with the anticipation that they will receive encouraging words.

And once someone has been sticking around for 8 years at being here for others, I have to believe that not only would they understand, they may be able to lend a helping hand. Again, regardless of Gleason or tumor size either way.
Posted 11/19/2014 10:18 AM (GMT 0)
Tim G. I think this a fantastic post and your “thoughts” are probably the same as a lot of the guys here, but you are probably one of the first to voice them in this way. Well done.

I in no way see you as “the village idiot” You are one of the chosen few who have been given the very special gift of empathy. There are a lot of people in this world who have no clue on the difference between empathy and sympathy. In fact if you asked them they would say that both had the same meaning, but they are worlds apart. Purgatory kinda nailed it there. Sympathy is where you are walk alongside someone just nodding your head. Where with empathy you are actually walking in that persons shoes. BIG difference.

Since coming here a couple of months ago, I have gone from the “woe is me” panic mode, to that of empathy for others here who may be less fortunate than myself with regards to there condition. I have even tried to support those who are more fortunate, or are in the early stages of discovery. Being here has defiantly helped me in that way.

I see life as a journey and PC as a vehicle that we may have to drive on that journey. My car may have a much smaller engine than some others cars here, but ultimately both do the same job. The guy with the big car will have to make many more stops on his journey than me, because running and maintenance costs will be more frequent and costly, but he will still probably reach the end of his journey before me. He may keep up a faster pace than me, but I am the kind of guy that would stop and offer help if I saw him stuck with problems by the side of the road, because our destination is the same, no matter how fast we travel.

Now who is starting to sound like the “village idiot” here! smurf

Great post. turn
Posted 11/19/2014 11:11 AM (GMT 0)
I read somewhere that we will never be "tested beyond what we can bear" (probably some biblical verse). I always think that my dilemma is sufficient for me, and that I will cope!
.
Posted 11/19/2014 3:32 PM (GMT 0)
Tim G -

The very fact that you are raising this question, and expressing your own concerns about it, is an indication that you DO understand.
Posted 11/19/2014 3:54 PM (GMT 0)
I commented here earlier this year, unhappy that my wife had made a comment about my operable G7 (barely a 7) not being "real cancer". Having dealt with the real side effects of that cancer, I found that comment tough to take. But, when I read others' comments here, people with incurable advanced disease, I feel like my wife was right. I'm really happy that our common bond here is a disease that is treatable and survivable for many years, for most of us. As a lifelong runner, I remember George Sheehan writing in Runner's World that he was determined to make prostate cancer be the cause of his death. By that, he meant he was going to stay as healthy as possible as long as he could, and force the prostate cancer to be the cause of his demise, rather than some other ailment. Regretfully, he did eventually get his wish.

My wife is going to have surgery for an advanced and aggressive melanoma on Friday. She will have permanent scarring on her face, and the risk of a severed facial nerve is very real. Hopefully, they can obtain clean margins and the lymph nodes will be clear. As I watch her being nervous the way I was a year ago, all I can think is how much I wish I could take this on myself, rather than her having to deal with it. In contrast, my PCa really does seem like it's not a real cancer. I think my kids need their mom more than they need their dad, and the thought of losing her to melanoma is terrifying.

As cancer has invaded my life from all directions in the past 18 months, I have truly learned the lesson of bonus days. We all have a finite number of days, but it's easy to forget that and just treat some days as throwaways. As our time runs out, I bet we would do anything to have just one more of those throwaways to be with our loved ones.

Sorry. Rambling, I guess.
Posted 11/19/2014 5:50 PM (GMT 0)
Awesome, thought provoking thread Tim G, thanks for putting this out here.

dmlvt - "As cancer has invaded my life from all directions in the past 18 months, I have truly learned the lesson of bonus days. We all have a finite number of days, but it's easy to forget that and just treat some days as throwaways. As our time runs out, I bet we would do anything to have just one more of those throwaways to be with our loved ones." Wow. . . .


*LIKE*
Posted 11/19/2014 5:53 PM (GMT 0)
Yoop!!!!!!$ just sayin hey
Posted 11/19/2014 6:52 PM (GMT 0)
One of the important things to "get" -- which not everyone "gets" right away -- is that prostate cancer is really two VERY DIFFERENT diseases. While I have become familiar with it's history in medicine, it certainly seems destined soon to be broken out into two ACTUAL different disease names. It does a true disservice, in my mind, to the 10% of men with very serious PC disease to be lumped together with the much larger number of cases which have given prostate cancer the reputation as "not real cancer." At the same time, the men with the low-risk cases have also been poorly handled by the current status quo by giving them the life-changing label of "cancer" which they probably didn't really need to receive...unnecessary PTSD for those men.
Posted 11/19/2014 7:50 PM (GMT 0)
Lots of little kids get cancer and die. That's the worst to me.
Posted 11/20/2014 12:23 AM (GMT 0)
TimG, nice thread you started here, thanks!

As a G9, with a tough battle to fight, I appreciate all responses to my posts and never once questioned someones comments based upon their disease stage. That being said, like Todd commented, I have a difficult time contributing to posts of those dealing with early stage issue, as I just cannot relate. I don't have a lot of time to post, but monitor and contribute if I sense value. The diversity of PC stages represented here on HW is extremely valuable; #1 it keeps the forum extremely “active” and #2, you never know when information that is one day non-relevant, become relevant. In my case, my brother was diagnosed with an early stage PC, he did a year of AS,and just recently completed LDR Brachy. It was a decision that he was personally comfortably with, and was backed up by information presented here.

HW touches the lives of active members, and often well beyond. When someone comes here seeking advice, there is almost always someone here that can relate, and they reply. On some forums it take days to get a response, but here, ummm minutes. If I had any “negative” to express; the activity here can move a post to page 2 rather quickly and cause important posts to get lost in the chatter. We should all monitor for this unintended consequence and “bump” such posts.

PS.I had some extra free time tonight...love this place!
Posted 11/20/2014 12:32 AM (GMT 0)
What?  Advanced Prostate Cancer isn't curable?  Someone talk me off the cliff.  None of my doctors ever told me this.  And I've been posting here for 5 years.  I must be the village idiot.

-------------------------------

Todd --- I think deuces and one-eyed Jacks are wild.

-----------

Tim,

Thank you so much for the years of support on this forum. You will never know how much it is appreciated by those that reply back to your posts, but probably even to a greater extent, to those you never hear back from.  That's a long time to hang out to lend an ear, spread your knowledge, and offer words of hope and encouragement to all those dealing with all forms of prostate cancer.  And you didn't need to do that.  Most guys that come around these parts and are cured...simply pass by and never come back.  You felt you wanted to help others out and you have.

Both the curable and curable-challenged guys have more in common than not:

- both have gone through the announcement that our PSA and/or DRE was not normal.

- both have gone through the humiliating, painful biopsy process.

- both have received results from biopsies.   Both have heard the term, cancer.   The biopsy is only a sample, so even if you're told it was all Gleason 6, the patient is still left wondering if those areas missed contain higher gleasons.

- both have gone through the anxiety that comes with a PC diagnosis.

- I'd imagine both groups have gone through the process of different scans (bone scan, CT) and the logistics, fears, etc..that go with those ordeals.

- a good portion of both groups have had primary treatment to address the diagnosis.  This includes surgery or radiation of some type usually.  Lots to compare with different treatments...strategies, side effects, etc...

Here's where it breaks down a bit:

- both know the feeling of fear when getting "not good" test results, but for an advanced guy, this can happen like the movie, "Groundhog Day".  It's a never ending cycle of testing, waiting, and the extreme emotions that come from the results.  Sometimes you can feel that your worst nightmare is better than when you wake up and realize that this thing just isnt't going away.

- A lot of advanced guys get to experience the fun and exciting therapy of taking testosterone away.  This is a lot of fun with all of its side effects.

- And when you hear (and visibly see it on scan) that your cancer has spread to other parts of your body...well, that's just a feeling that I wish on nobody.

These are just some examples of things that the cured PC guy might not experience first hand.  But, I think you get it.  You've been kind enough to read a lot of stories and you care.

My wife literally was blown around by a tornado.  Our 2 story house was completed destroyed 10 years ago.  She ended up on our kitchen floor looking up into the sky.  She turned to only see the remaining brick fireplace and half a chimney.  She spent a month in the hospital, recovered in about 6 months, but she survived. 

I bring this up because I did not go through that horrible event.  But, I have been with her every single day for the past 10 years.  I have seen her heal to a point that she could walk and then try to get on with her life.  She deals with pain all the time and I see it and deal with it all the time.  I understand to a great deal what she deals with.  I can only imagine what she went through and is going through...but my heart is in the right place in all that I say and do for her. 

Likewise, your heart is in the right place and I know you get it.

Thanks again,

Jerry L.
 

Posted 11/20/2014 1:02 AM (GMT 0)
We had a good discussion on this topic a while back, with some good insights expressed:

www.healingwell.com/community/default.aspx?f=35&m=2988967
Posted 11/20/2014 1:59 AM (GMT 0)
That was a very interesting comment regarding the difference between empathy and sympathy.

Empathy means someone has walked in your shoes and can relate and, hopefully, can offer some insight/suggestions based on that knowledge/experience.

I guess someone might desire only sympathy, or might prefer empathy.

Some people want only one or the other.

In that regard, I prefer empathy.

Yet, there are a few days where I just have to vent -- mostly those days where I am awaiting this or that crucial test. For example, late next week I do a PSA test and if it rises (the last few have risen) any decent amount, I am back on HT. I often get VERY nervous and upset during those times (oddly, not during other times). Those might be the times I just want sympathy. Most other times, I want experiences/knowledge, alias empathy.

Hopefully, I can also pay it forward and help newbies

This is quite a thought-provoking thread!

Mel
Posted 11/20/2014 2:54 PM (GMT 0)
Jerry sorry to hear about your wife. Living with chronic pain is very hard. My dad had emphysema and one day he said to me: "sometimes it just doesn't feel like it is worth going on" and it really hit me he felt that was as I saw him as Superman.
Posted 11/20/2014 7:52 PM (GMT 0)
Forget not empathy for the joy of someone else, which is its highest value……. Oh!, again a circle…...
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