Mini survey - Do you feel there is a problem with this forum?

I have found the feedback on this forum a real help. I am glad I found you guys. Just the fact I can touch bases with people in the same boat is comforting. This disease is the worst, I struggle everyday with it, the fact I can let out frustration is more than beneficial for me. People here give the best they can, I appreciate it and say carry on.

<<<YAWN>>>

If ya gonna leave - don't let the door hit ya where the good lord split ya

I love the reference to "good ole boys." It kind of implies some people would rather get help and feedback from cancer virgins.


LET'S MOVE ON - THERE'S NUTTIN TO SEE HERE.

Starfinder,
I've had a couple people, both of whom I know well, tell me how to cure my cancer. One recommended green tea and the other said to drink a solution of baking soda. I know they meant well and told them I'd look into it. But inside it really made me feel sad that people are so cavalier about throwing out such nonsense to someone with a deadly serious disease.

It's know it's off topic, but I just really identified that part of your post

starfinder said...
...
Being someone who has stage 4 prostate cancer, I have little patience for some of the healthy people I know trying to tell me what will cure my cancer. I've heard everything from Atkins Diet to Yoga. The difference is that MY life is on the line, not theirs. It's really easy to tell other people what's best for them when you are not sick yourself. ...

Please excuse a little drift of the thread topic - I have a theory about that. Cancer scares the heck out of people, and yet it is so common. To cope with the risk, to avoid too much fear, people like to latch onto what is essentially a fantasy. They like to think, "Well, if I ever get cancer, I'll (insert alternate treatment here) and that'll cure it. Don't wanna, but could do.". Then, to validate that whistling-past-the-graveyard mentality, they suggest it to you too. If you don't do it, and you have a bad outcome, well that just validates their fantasy. Avoid sugar, drink weird teas, coffee enemas, and on, and on. We've all probably heard a lot of these.

Some, I'm sure, say it out of genuine hope that whatever it is might be effective. They don't know anything about your cancer, its risks, or treatments. They just know the Big C word is scary, and someone said something somewhere about something that might work. So, no worries.

By the way, one other thought on the thread's primary topic, the ignore button is easy to use. It's that thumbs down icon in the top right corner of posts you see if you're logged in. If there's some member who routinely raises your blood pressure, that you find too abrasive perhaps, by all means hit the ignore. You can edit that list in your profile later if you want to see their posts again. It cause a little confusion because while you don't see their posts, others do and may respond. You'll see posts answering to something else you didn't see, but I find it to be manageable. It has definitely improved my experience here recently.

Redwing57 said...

starfinder said...
...
Being someone who has stage 4 prostate cancer, I have little patience for some of the healthy people I know trying to tell me what will cure my cancer. I've heard everything from Atkins Diet to Yoga. The difference is that MY life is on the line, not theirs. It's really easy to tell other people what's best for them when you are not sick yourself. ...

Please excuse a little drift of the thread topic - I have a theory about that. Cancer scares the heck out of people, and yet it is so common. To cope with the risk, to avoid too much fear, people like to latch onto what is essentially a fantasy. They like to think, "Well, if I ever get cancer, I'll (insert alternate treatment here) and that'll cure it. Don't wanna, but could do.". Then, to validate that whistling-past-the-graveyard mentality, they suggest it to you too. If you don't do it, and you have a bad outcome, well that just validates their fantasy. Avoid sugar, drink weird teas, coffee enemas, and on, and on. We've all probably heard a lot of these.

Some, I'm sure, say it out of genuine hope that whatever it is might be effective. They don't know anything about your cancer, its risks, or treatments. They just know the Big C word is scary, and someone said something somewhere about something that might work. So, no worries.

By the way, one other thought on the thread's primary topic, the ignore button is easy to use. It's that thumbs down icon in the top right corner of posts you see if you're logged in. If there's some member who routinely raises your blood pressure, that you find too abrasive perhaps, by all means hit the ignore. You can edit that list in your profile later if you want to see their posts again. It cause a little confusion because while you don't see their posts, others do and may respond. You'll see posts answering to something else you didn't see, but I find it to be manageable. It has definitely improved my experience here recently.

-OR-
Maybe its really not all that complicated. Maybe some people who spend a great deal of their time (even enjoy) spending hours reading research occasionally like to share when they find something interesting, and when its based on solid research. Or even something that actually worked for them. How that can be a bad thing, I'll never understand. Especially since its no secret to anyone it can take a very long time for funding, when there isn't an opportunity for a boatloads of money to be made. That's just an undisputable plain fact. There is a lot more out there than weird teas, and coffee enemas. Since Vit D is a popular topic here. It was only about 5 to 10 years ago it was considered >>dangerous<< to take more than 400 IUs of vitamin D. Things change, we've learned a lot since then. Again, I don't get how just reading that upsets people. But if that's what people want so be it.

By the way the supplement complaint, is mine and mine alone. Not a single person that I have spoke to offline even brought it up. Except for maybe BillyBob, but I wont speak for him he does just fine on his own.
The most common complaint lies elsewhere.

Those of us with uncurable PCa struggle with deciding what to do about recurrence. We make treatment choices based on reasons we think are appropriate given our due diligence. If someone makes a different choice we might question it because it makes us wonder if we were wrong. We can't be wrong . Our life depends on it. So we defend our choices and may ridicule the choices of others. We all fear dying early especially if it's because we made some wrong choices.
Most of us on this forum have no medical background. All we can do is help one another by relating our experiences. Most of the threads here are from people trying to find out what's in their future based on experiences of guys with similar pathology. That's understandable but not really relevant because no two guys are the same. We can't give medical advice. We can share links from clinical trials or other medical white papers. And certainly criticizing others is not helpful.
I've not found this forum to be a problem. I've received great advice here and believe it has added years to my life.
Bob

I don't have have many posts on this forum. Have been on it since diagnosed. To me it has been the best source other than my urologist I have found about my disease. I learned long ago that I can skip threads I don't believe are helpful to me.

I love that some veteran members post when bad facts are posted. I treasure their study and wealth of knowledge. I shake my head at some posters use of the language but, again, I found I can skip those posts that are not meant to be easily read.

I would hope this forum would not change.

Tommie:

A few comments. This has been a great thread. Thanks for that.

However, it seems almost every one of your posts is complaining (either overtly or covertly) in nature.
It is obvious that you were hoping for a bunch of critical posts to confirm your own opinion.

That didn't happen. So what. Live with it. If this forum is not for you, then I'm sure an alternative or supplementary forum would be more to your liking.


Enough already.

I've told this story before; sorry to veteran members for the redundancy, but it applies here.

As a young school administrator, I had many strong opinions. I would push them hard at assorted meetings.
One day, a respected experienced administrator took me aside. He actually agreed with most of my opinions. But other folks did not. His advise: "Caress an idea; do not strangle it." That bit of advice was the best I ever received. It has served me well for over 40 years, although at times I still get carried away.

I offer that advice to you, free of charge. Please just consider it. As I recall, it took me awhile to assimilate that advice (at first, all I could hear was criticism, and it hurt). But, eventually (a few months) it truly entered my psyche.

Oh, incidentally, there is a reason the G-word is verboten here. If you ever want to get into a heated argument, start talking about religion (or politics). There are plenty of such boards for you to vent your views. Just...not this one! Wise move!

Pratoman: I guess we disagree. But I still don't get upset at too many posts. One reason is that I realize we are just people posting behind a computer screen. Hence, we sometimes say things we would never say personally (not to mention the obvious posters who troll us). But one other reason. I realize many of us are suffering. It might be the G-score or Stage of our cancer (often both). It might well be the HT. That is a MISERABLE tx and can cause emotional trauma that makes it into our posts. So, I will cut folks some slack for that. I've only put one person on IGNORE, and only because I am tired of trying to decipher his gibberish posts. I have some time, but not that much time!

Mel

Post Edited (compiler) : 8/15/2017 10:43:39 PM (GMT-6)

Goodbye Tommy, I think you have landed on the right conclusion, this place is not for you (and is possibly not for others as well), you see problems where most of us see a very good and supportive place to be. That simply means that this is not the forum for you, there are many others and I am sure you will discover one that fits like a glove.

I've really enjoyed reading this thread and seeing so many names that I haven't seen in a while. And just the other day Tatt2man showed up. Great to see him back, too.

Like many others, I didn't find this site until after treatment, but I've always been glad that I did eventually stumble in.

I'll confess that I've sometimes been a bit rancorous on the forum, but almost always because I found someone's response to a newcomer to be rude or even arrogant. If I've offended anyone, I apologize.

I don't post much anymore, because, frankly, I'm trying hard to push prostate cancer into the background of my life. I just turned 72 and would like to live the coming years without dwelling on cancer, as much as possible.

But even more to the point, it pains me to see so many newly-diagnosed people coming in the front door, so to speak, having to confront the same issues all of us have had to confront. Do I keep saying the same words over and over trying to be helpful? I just feel empty and frustrated that this just keeps happening over and over and over again.

This forum has been a great help to me. Many of us dealing with prostate cancer have no "community" of others who have even the faintest idea what we're dealing with. Heck, most men don't even know what a prostate gland is or does, where it's located, or even how to spell the word. It's been a godsend to find this forum, where I can instantly reach out to other men (and women) who can relate to the myriad problems and concerns that a prostate cancer diagnosis brings with it.

I applaud our moderators. What a thankless and difficult job they've voluntarily taken on.

Good to see Purgatory and Compiler. I think of all you guys frequently and truly, you're often in my thoughts and prayers.

Thanks again to Peter for making this forum possible.

Lol @ 1013.

Tommy even though I found you annoying, I seriously wish you well. Not every forum is right for everyone. I do find threads about diet and supplements useful, and interesting. But without the controversy.

Seriously again, bets of luck for a healthy future. Most of all, I hope you never ever receive a diagnosis of prostate cancer, or any other cancer for that matter.