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

I stumbled onto this forum 3 years ago when my husband was first diagnosed and I was lost in a sea of terms I didn't understand about a cancer that I knew absolutely nothing about. I was scared and angry and adrift. I read posts for weeks before I finally posted. I got support and empathy and useful information. When, just 7 weeks after Randy's surgery, we found out that margins were positive, Lymph nodes were positive and PSA was persistent, I came back here with my hair on fire, and the folks on this forum were good enough to extinguish it for me. Kind works and reminders that there were still plenty of options and treatments pulled me back from the ledge so that I could be stronger and support my husband. Reading posts from other wives, many of whom were so much further down the road, strengthened my resolve to be the best possible advocate that I could be. Questions about side effects that popped up along the way were answered by folks who had experienced the same thing. Somehow, it was better than the answers from doctors and PA's who'd never experienced these things for themselves.

I was impressed that this forum didn't support the "shark cartilage, extra vitamin C, juices and extracts kind of 'cures' I saw on other forums. (Seriously, one forum advocated abandoning conventional treatment in favor of intravenous vitamin C !) I liked the knowledgeable members who were ready with science-based answers to some really scary questions and links to studies that supported those answers. I liked the fact that if certain substances make YOU feel better, you can say so. And those who disagree with you can say so. I understood early on that there was a surgery faction and a radiation faction, but neither ever tried to second guess our treatment choices. We were doing enough of that for ourselves.


I still read a lot more than I post. There have been times when I felt like questions were answered with a 'grain of salt'. But, I decided early on, that I should always assume that anything that came across as less than civil, wasn't meant to be so by the poster. If I'm correct and nothing rude was intended, then no harm, no foul. If the poster was trying to be less than polite, then it's their problem and not mine.

Yes, there are times when I have been frustrated by posts and responses, and I don't always agree with other folks' opinions. Some of the members are....shall we say Direct. Others are more gentle. But, almost all have had something constructive to add to the conversation (most of the time).

We're all in this same leaky boat. We're (mostly) all scared, at least some of the time. We all face the uncertainty of PCa. Most are dealing with side effects and either the specter of recurrence, or recurrence itself. It's a nasty place to be. All here deserve a little Grace. We just need to understand that none of us are perfect, so this forum won't be perfect. So, to answer the question: Of course, there are problems. As long as imperfect people are involved, there will be problems. However, in this case, the benefits far, far outweigh the problems. I personally appreciate all who post, and all who respond. I come here because it has made, and continues to make our journey a little easier.

Donna

Having been here on and off for going on seven years, I will gently disagree with the original poster. There's really nothing wrong with this forum that doesn't afflict humanity in general. This forum is just a microcosm.

In this world (and in this forum) we have the arrogant, the superior, the hyper sensitive, and the know-it-alls. We have people who are genuinely very knowledgeable and those who are less knowledgeable but who love to argue. We have very nice people who only want to help and we have people whose egos get in the way of their best intentions. We have people who require that any dissent be put to them very, very gently or they get their feelings hurt. They're all here. You can find them in any forum, bar, church, organzation or workplace.

I have tried to focus on the knowledgeable individuals who genuinely wish to be helpful, and there are a lot of them here. There are lots of other types as well, but if you want a perfect society you've come to the wrong planet. I never cease to be amazed at the goodwill and good information that flows from this place and I've met a number of people whom I consider to be good friends. I've personally learned a great deal and I believe the things I learned were very helpful to me.

Yeah, medical advice is dispensed by unqualified individuals. People do leave. The mods make bad calls sometimes. People go off on other people and other people get their feelings hurt. It's all very imperfect. But I think the information and support that many of us have experienced greatly outweigh the negatives. On balance, I think it's a good tradeoff.

I hope you do come back some day and I hope you find the benefit that I've found here. For me it's been very enriching, and I think that's true for a lot of people. It got me through some dark days and I think that's true for many others too. I guess those who find it helpful ultimately stay and those who don't leave. Many stay. I think it's for good reason. For those who don't, I hope you find the information and support you need.

Post Edited (Jazzman1) : 8/14/2017 6:16:40 PM (GMT-6)

the perspective, knowledge and support on here, anytime I've ever needed it...has been...well....spectacular, if not overwhelming.

people helpin' people


Donna (of "RandyJoe" fame)....great post

Thought I would jump in, being a member for nearly 9 year, one of the last regular old timers here.

The Mods do a great job. Don't believe, try being one. I was honored years ago to be one, I resigned in about a month, couldn't take the pressure of the job with what I had going on. If anything, the Mods aren't strict enough at times, not the other way.

And yes, over the years, there is always one or more member that thinks they have all the answers, but they don't, and just remember, no one is a doctor here, so don't get sucked into thinking they have some higher enlightment.

The rest of it, is just people trying to get along. For one, its easy to be rude and talk tough on-line. Some of the bullies would probably be found out to be wimps if you met them face to face. Just comes with the Internet.

I don't hardly post any more, but with nearly 26k post I obviously had plenty to offer at one time, I tend to just give updates from time to time for those that still care. Been on a horrific journey, and it still goes on and on.

This is the only PC forum I have ever been to or belonged to, it still works for me, have a feeling it does for most members.

No one is forced to join or stay here, if its not your cup of tea, then dine elsewhere.

Yes ,I said I was gone .....
Just can't leave a group that has given so much to me and so many others. As I have followed the recent posts that quite obviously spurned from something I said. Let me say that I never intended for this to go this far. I see my name mentioned throughout this post and the other thread that preceded it.
I have learned a lot this past weekend as I followed the advice and suggestions of many of you as you let your feeling be known.
I have been trying to process all this and quite frankly, I have been pretty upset about it all. I tend to jump to conclusions about things and have not been myself as of late. I am impatient, easy to anger and basically don't feel right. I'm in pain that won't seem to go away and I am suddenly, slowly ,realizing that I will never be the same. I've never felt this way ever. It seemed that one day things were going along pretty good. I had plans on how I was going to retire and how I was going to start to set things in motion for that to happen. Now, everything is up in the air. I live with unknowns
So ...much of what I have learned through this recent uproar is that I can't control other people and what they say. It certainly isn't my job here.
It's not my job to protect the new guy from what I believe to be rude comments. It's not even my job to figure out what's rude and what's not.


I have never felt that someone was ever trying to sway me one way or another on my treatment choice. I do see the divide and the tension between the 2 apparent sides, but have never let it bother me.
I do get my feathers ruffled easy and that was never me. I didn't even realize I was being angry, touchy, easy to snap,etc. I now know that it is the treatment. It messes with you. It takes from you as it supposedly is giving you a cure. Would I do anything different? No. I would not. But it is good to figure out what is going to happen from all these treatments. Anyway that's for another post.
I just want to get back and feel ok with being here. I need it.

Battle On Brothers......

The Artistic One - Mark

I'm sorry Mark, this wasn't meant to be about you. I reached out to Peter weeks ago, I'm sorry for the timing.
It was nice chatting with you, great to have you back, I'm sure many will agree.

Mel, that's the thing... we aren't just folks behind a computer screen, we are real people with real feelings and real issues. That is what I think made this thread the best one I've seen in my years here. We are truly a band of brothers. That's evident in this thread.

Mark, so glad you are back.

Hi,

I have read thru the postings on this subject and while I have only been a member only a few months I just
wanted to say I am thankful I found this site. I find it to be a useful site with members sharing experiences about their prostate cancer and treatments and outcomes including successes and complications and side effects.

Nothing is perfect and there is no way in our world to make a site like this perfect. The site and information serves a valuable purpose in my opinion. I do not feel there are significant problems with this forum.

Yes, there are some individuals who might have an opinion about certain issues- so what. No one dictates what you have to do about your situation. I have been here nearly ten years. Come everyday. You learn who actually is smart enough to give accurate information. Yes some people get under your skin. The moderators are excellent! The owner has his rules - it is his sandbox, his toys. If you do not like the boys and girls here, go to the next park down the road. I bet there are people there just like here who do not pick up after their dog has pooped. There are cry babies and bullies. Remember this is not like being on the Mustang blog- this is about peeing on yourself, physical pain, the unforgettable sex that has limped away and for some saying good bye with dignity and love. I am grateful for the privileges we are afforded here. I am an invited guest just like you and everyone else. This park never closes, someone will be around most of the time. For some that brother or sister who responds on a lonely night or a singular holiday week-end brings a since of connection with at least another warrior. There is nothing wrong here that understanding compassionate people can not respond to. I am glad I am still in the fight and willing to help others as they start their journey.

Healing Well is the best thing that has happened to me/us during my DH's diagnosis and treatment. Neither of us had experienced any serious medical issues until this steamroller hit out of the blue 12 months ago, and I have found this forum an incredible source of support, encouragement and information. Still do. I visit daily - sometimes several times per day. I read almost every post, and try to reply to a few - with varying levels of success.

Yes, there have been times I've been made to feel a bit silly or overly hysterical, and that's probably because I am/was! I am also extremely hyper-sensitive, and have to constantly remind myself it's easy to misinterpret straight-shooting information delivered in a 'clinical' fashion as a dressing-down, but not all of us have the soft'n'fuzzy gene. I'll take what I can get - and try to accept it all as though it were given in good faith. Which I am certain it almost always is.

I am thankful for you all - for your candour, kindness, generosity of spirit and brilliant humour. I still laugh even today, when recalling Newton's story about the 'shart'. Freakn hilarious! And sometimes we all just need a laugh - even if it is at our own expense!
https://www.healingwell.com/community/default.aspx?f=35&m=3687485
Sorry - there I go being a dunce again - no hyperlink, but I know you can work it out!

Artist Mark - just know this forum really appreciates your input. At least I do, and clearly I'm not the only one!
To everyone else - ESPECIALLY the amazing mods - thank you. No... THANK YOU. For everything.

To the grumps, the sh!t-stirrers, the indecipherable and the 'elite club' - I love you all. One day... just ONE day, we will gatecrash one of your GFMPH events, and show you just how the Aussies do it!

Until then - best to you all. Always.
Jaybee&GG

Post Edited (Jaybee&GG) : 8/15/2017 2:47:30 AM (GMT-6)

Thank you JNF - a wrong turn of phrase at this end - my bad! We use 'crash' around these parts as in - we're gonna crash on in and make some noise (in the best possible way of course!!).
See? right there - you are so kind to come back with a lovely, open invitation like that. And I sure do wish we could come. Maybe one day. But it's a long way from home and with no leave owing right now, it's nose to the grindstone for the next 6 months at least.
But one of these days...!
Oh and I forgot to mention - I explored a few other forums in the early days but just stick to HW now - I very occasionally cast a glance at another PCa forum, but this is the only one I actively participate in, and read daily. I find the addition of individual signatures very useful as well. It's all good!

Just a follow-up to what ASAdvocate said.

This isn't the only forum I'm active on, as I regularly contribute my two cents not only here but also on a veterans' issues forum, a forum on Florida politics, one on academic library issues, and one on University of Florida (Gator) football. .

Of those other discussion forums I'm on, three are usually pretty peaceful, but one has some pretty nasty dust-ups between posters there on a regular basis.

So which one do you think it is that has the dust-ups? The one on Florida politics? Nope. The one on UF football. There are some folks out there who really take their football very seriously, and who aren’t at all shy about expressing their considerable disagreement (rather harshly, usually) with any and all of those whom they perceive as assailing their mighty Gators. On a regular basis, it seems like the mods over there have to take whip and chair in hand to separate said posters from going at it like tomcats in an alley.

So people can be pretty adamant about how they feel about certain things. Granted discussions about a possibly life-threatening illness should count for more than those on the fortunes of an athletic team, but people can be funny that way sometimes, as to what rings their chimes.