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Posted 4/20/2020 9:56 AM (GMT -5)
I first visited this "neighborhood" in 2010 and found it a really helpful, friendly, and informative group of men and women who helped me and many others deal with their prostate cancer.

Fast forward to the current listing of topics, and the focus sure has changed:
Still in the Zero Club, 16 replies
When do Lupron SE's start? 15 replies
Compiler Update, 9 replies
Gleason 6 SBRT, 9 replies
Bleeding 5 years after radiaton, 3 replies
Small Cell Carcinoma, 7 replies
etc.
BUT:
Toilet Paper Poll, 18 replies
OT Song Suggestions, 118 replies
Rant and Rave, 69 replies
Fake Web News reports, 700 replies!

Looks like the old "neighborhood" just ain't what it used to be. May put the house up for sale.
Posted 4/20/2020 10:22 AM (GMT -5)
Well, with everyone sheltering in place, we do have a bit more time to wander off topic...
Posted 4/20/2020 10:58 AM (GMT -5)
I think everyone is looking for distractions from their troubles right now.

But you bring up a good point. We have been uber-focused on Coronavirus, and its effects on us, like the rest of the world, but it would be great if we could make sure to respond to any PCa questions that come up, where we can. Especially from Newbies. I know i'm guilty of not being real interested in PCa these days, or reading about it, and i'm sure a lot of others are as well.
Posted 4/20/2020 11:29 AM (GMT -5)
Current events brother, current events, with the occasional journey to nothingness.
Posted 4/20/2020 11:40 AM (GMT -5)
Also, a lot of PC patients aren't being seen at the moment due to doctors and hospitals reducing contacts.

So there aren't that many newcomers at the moment to talk to.
Posted 4/20/2020 11:46 AM (GMT -5)
Clock you will find corona is the dominant topic of discussion on almost any forum on the planet, medical or otherwise.
Posted 4/20/2020 12:14 PM (GMT -5)
Out of curiosity I checked some of the other HW forums. Some have no CV discussions. A couple have limited discussions. I guess for the PCa, we're a bunch of old men with nothing better to do than voice our strong opinions. LOL.
Posted 4/20/2020 12:18 PM (GMT -5)

InTheShop said...
Also, a lot of PC patients aren't being seen at the moment due to doctors and hospitals reducing contacts.

So there aren't that many newcomers at the moment to talk to.

Very good point, i didn't think about that.
Posted 4/20/2020 12:18 PM (GMT -5)
Mattam, At least we know that our collective T levels are good lol
Posted 4/20/2020 1:51 PM (GMT -5)

mattam said...
Out of curiosity I checked some of the other HW forums. Some have no CV discussions. A couple have limited discussions. I guess for the PCa, we're a bunch of old men with nothing better to do than voice our strong opinions. LOL.

Yeah, but Healing Well's forums are not really a good sampling... many of the other forums have no new posts for quite some time - I mean, like years. Of the ones that do, quite a few have corona posts - not like ours though. Prostate cancer is the second busiest forum Healing Well has, but we're NUMBER ONE for corona.
Posted 4/20/2020 9:47 PM (GMT -5)
I agree with ITS, there is no new activity in the medical business nowadays so nothing happening to bring new people to HW or changes to existing people’s status. The current posts are largely frequented by a small group of people who happen to be active at this time and very few new inquiries or new situations.

clocknut - I am a relative newbie and have had the same thoughts. Not much substance in the discussions regarding PCa but it is not the fault of anyone. PCa has been locked down as well in the last two months so we could go dead like some other forums but instead talk about the new disease on the block or music or TP. It is not very helpful to anyone other than those posting but at least it is helping someone. Come back in a month or two and it will be back to normal, whatever that is in the future.
Posted 4/20/2020 10:26 PM (GMT -5)
The action these days is on Facebook. At least eight prostate cancer support groups there. One for newbies and general info, and many specialized for surgery, anti-surgery, protons, AS, wives, etc.

I like spending time there because of all the just-diagnosed men (and wives asking for men) showing up every day. I have an advocacy against overtreatment, so it affords me a soapbox.

I still check in here, but, IMHO, when TA left, the star attraction was lost.
Posted 4/21/2020 8:22 AM (GMT -5)

clocknut said...
Looks like the old "neighborhood" just ain't what it used to be. May put the house up for sale.

It isn't but that doesn't mean one has to go up and knock on every door.
Posted 4/21/2020 8:43 AM (GMT -5)
It's a beautiful day in this neighborhood,
A beautiful day for a neighbor,
Would you be mine?
Could you be mine?

It's a neighborly day in this beautywood,
A neighborly day for a beauty,
Would you be mine?
Could you be mine?

I have always wanted to have a neighbor just like you,
I've always wanted to live in a neighborhood with you.

So let's make the most of this beautiful day,
Since we're together, we might as well say,
Would you be mine?
Could you be mine?
Won't you be my neighbor?

Won't you please,
Won't you please,
Please won't you be my neighbor?
Posted 4/21/2020 2:14 PM (GMT -5)
I rarely ever stop in here, anymore. The series of kerfuffles surrounding two or three notable and strong personalities here created so much animosity that it quickly became not worth the trouble. People would get all wound up at someone. If I reminded folks to use the handy "ignore" function, I got yelled at for just saying that.

It's progress, I suppose. When I was diagnosed 7 years ago in April 2013, this forum was an absolute godsend. I am good friends to this day with many of the people that were on here back then. There wasn't much, if any, PCa support on Facebook yet; that was just really taking off at the time. We had probably 6-10 members here who were relentlessly supportive, and there were very rarely any actual arguments. It felt incredibly supportive and informative, guiding me with information and questions through many critical early doctor conversations.

But the forum's character changed along the way. I won't go into any details, since it's better forgotten, but for the future it may be worth remembering that this is a support forum. Highly polarizing people, things said dogmatically, unthinkingly, attacking personally, do not make a welcoming forum. And sadly, a good deal of that happened here.

I created and maintained for several years a thread here for G9/10 cases, and it was helpful to some, and gratifying to me. That has pretty much died off too, as people have sought more supportive forums elsewhere. Facebook is also much easier to use, and more capable, than this forum's software. Ah well. Things do have a life cycle of their own.

Hopefully, we'll catch you folks elsewhere around the web!
Posted 4/21/2020 3:00 PM (GMT -5)
Redwing--unfortunately, the world we live in has gotten less friendly, more dogmatic, and less supportive to others who are suffering. The only thing I can do is look in the mirror and try to ask myself seriously--am I doing everything I can to be caring and gentle and good to those who are having difficulties? Do I do my best to not assume, to not namecall, to attempt to really listen (or read carefully)? Do I mindlessly repeat or repost what someone else says without thinking critically about what it says? Etc.

Ignore is a valuable tool. And not just using an ignore button--but actually choosing to NOT respond to something inflammatory or attacking. Just because someone says something I don't like doesn't mean I have to do anything in response. No matter how harsh, or demeaning or attacking it might be. I can choose to let it wash over me and do nothing.
Posted 4/21/2020 5:59 PM (GMT -5)
I'm all for civility and when we don't have it here, I can get bummed out. But while I'm not on Facebook, I'm also not sure why people there would be any more civil than people here. In fact, from what I indirectly hear about Facebook, it's not always the model of decorum. (But I will admit, I haven't seen these sites.)

And maybe I don't read the jerky posts as closely as I should. (Or maybe I'm one of the jerks and don't realize it.) But to me, I don't feel the tenor of the forum has dramatically changed over the years. When I first arrived here, there were some vicious arguments between the radiation and surgery guys...if anything, I feel like things have calmed down since then. (Just my opinion.)

I will also admit that it's too bad that we don't have TA's expertise. But as someone that got here as a newbie *before* TA was here, I'd have to say I still got expert guidance and support. And I'd like to think that we continue to do that. (Asides into covid-19 topics, notwithstanding.)

I guess I'm also disappointed to hear the "action" is on Facebook since I have zero intent of ever joining that platform. But that's just me.
Posted 4/21/2020 6:12 PM (GMT -5)
Thunderdome... two men enter, one man leaves.

;-)
Posted 4/21/2020 6:20 PM (GMT -5)
All online forums become snake pits without good moderators. We are very lucky here to have always had good and thoughtful moderators who, even if I sometimes (rarely) disagree with their decisions, blow the whistle or send someone to the showers.

These are strange and unfamiliar times, so it's not unusual that conversation here wanders off topic more than usual. It's no different on Facebook. I belong to a couple of local town Facebook forums. One is moderated by my total political opposite. But he runs a tight ship and offers a platform where we can stay tuned in to local issues. None of us are always right. Well, I am. But I try not to flaunt it.
Posted 4/21/2020 6:29 PM (GMT -5)
MichaelT,
I was thinking the same thing. It's hard for me to believe people on FB behaving better than we do here, but I suppose it's possible. With the permanent exit of a couple of very bad actors (yes, including the "famous" one) I feel like things have been a lot calmer here.

With the "personnel" changes I think more people, including myself, are willing to participate without the fear of being berated by know-it-alls. I think the site is generally for support, rather than very specific medical advice. That's not say there aren't a lot of knowledgeable people here to help point members in the right direction in their treatment.
Posted 4/21/2020 6:36 PM (GMT -5)
Although I started this thread, it's only fair that in the interest of full disclosure I add some criticism of myself. I used to post a lot in the early days of my participation here, but not much at all anymore. As my personal bout with prostate cancer has faded into the past, I find it increasingly difficult to find anything to add to most discussions. Other guys here seem so much more knowledgeable about the disease than I am, and anything I might add just doesn't seem sufficiently significant to add to what others have already said. Still, I should at least add a few words showing support, and perhaps also showing that a lot of us do move on successfuly after treatment, and that the side effects, though disappointing, are not the end of the world if put into perspective.

I owe a lot to this forum. I haven't checked out any prostate cancer groups on Facebook, but I can't imagine that I would like them as well as HW.
Posted 4/21/2020 6:54 PM (GMT -5)

Redwing57 said...
I rarely ever stop in here, anymore. The series of kerfuffles surrounding two or three notable and strong personalities here created so much animosity that it quickly became not worth the trouble. People would get all wound up at someone. If I reminded folks to use the handy "ignore" function, I got yelled at for just saying that.

I think controversy has always been present here. And thats natural. Its a public forum, and its populated by men, most of whom still have reasonable levels of Testosterone (joke - you're supposed to laugh).

When i first got here, i was on two forums. The other one, since closed/merged with another less active forum, was moderated by a really good guy. Great moderator, more important, great guy. I asked him why he didnt frequent HW, this was back in 2016. He told me that he felt like every time he made a post about his successful surgery, and praising RALP as a great choice for certain guys, he was attacked, because there were so many pro-radiation guys here. So he left.

So i think there has always been controversy. Its not just recently I also think since the few bad actors left, its been way calmer here, so i dont think thats the reason for the lower activity level.

The TA thing, for those who've been around for a while, was a big deal, for sure. On some level, too bad we lost him, it was a big loss, in terms of valuable info. But we've got other guys here who are very competent, including one of the newer guys, who is a wealth of information. And the loss of TA on one hand was tough from a technical standpoint, but on another level, while we all (including me) wish it didnt happen, it has served to calm the waters.

I really think its in big part, a function of the times we live in (CV). Not much is going on in PC world.
Its also a function, of some long time, solid members, being around less often.
If we want this place to be what it was, and i think it will, it just ebbs and flows, we should all just contribute as much as we can, whether its opinion, encouragement, guidance, studies, whatever, and just avoid responding to controversial posts.

JMHO
Posted 4/21/2020 11:59 PM (GMT -5)
I will put this as simple as I can... Riddle me this...why do some folks help when they shouldn't...and do not help when they should...????oh well...the mansion has many rooms and a monster size basement...plz do not say we should help in any sitiation….a self serving sound bite which does anything but serve...particularly one self...try...just try to grasp that concept...pray on it instead of gettin all tribal and shat


"Hypocrisy is vices homage to virtue" ( good ole whosithow)
Posted 4/22/2020 7:30 AM (GMT -5)
I see some new/recent handles, myself. I have picked up links to PCa studies in the last several weeks that may help me make serious treatment decisions in the next few months. As I told 142 while we were discussing this sites racial, religious and cultural diversity some time back, I am here for the science. That may help me save or extend my life. The rest is less important to me.

If I can help someone I will, even if it is telling them that they are in the same **** soup as I am. sad

However, when I roll by Beaumont hospitals' cancer center and see 2 Police cruisers blocking both entrances, it makes it difficult to ignore C - 19 and its impact on me, my family and friends and my continuing cancer treatment.
Posted 4/22/2020 8:04 AM (GMT -5)
As someone who has been commenting online for over 35 years in a wide variety of venues, this one is relatively well-mannered. A big thanks go to the moderators for keeping it that way. I participate in many other forums, mostly hobby-related, and even those can get testy. Just post your opinion on digital vs. analog in a vintage hi-fi forum and you’ll unleash a flame war.

While I don’t feel competent to give advise on PCa outside of my own experience, I did become quite knowledgeable about urinary incontinence and the AMS800 I had installed a year ago and have been willing to share about that.

Back to the decorum issue, the Ignore button is of great value is is the ability to scroll, both of which I use liberally.
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