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Posted 4/4/2022 4:11 PM (GMT -5)
When I was first diagnosed with PC, I looked to the internet to see if I could find help on what it meant. What options I had. When I typed in Prostate Cancer support, Healingwell.com came up. I clicked on Prostate Cancer and this forum came up. What I read was prostate cancer survivors giving great advice on everything from tests, side effects from various treatments and personal histories. I read many posts and was extremely happy I found a site that could help me make a decision on how to proceed and what to expect before, during and after treatment. I also saw the compassion given to those suffering from this horrible disease. I saw forum members using humor to help relieve anxiety produced when a PC diagnosis is learned. That is still the topic of many posts.
I am not certain what I would have thought if the first post I read was, what do people think about what happened at the Oscars. I know I also contributed to this thread as I never back down from a direct question. For that, I should have kept my opinion to myself. When a thread is started with OT not related to PC, I wonder what it adds to help those seeking help with PC. I am not a moderator nor wish to silence debate, but this forum is headed with Prostate Cancer Support. IMHO, Shouldn’t that be what is discussed here? I would think that all other topics, Political, War, and what Hollywood is doing could be better discussed in another forum. Sorry for stepping on such a rich debate, but any newbie coming on is looking for help with their newly diagnosed PC. I really do appreciate all the help I have received here. Always, my best wishes to all,
Jack
Posted 4/4/2022 7:17 PM (GMT -5)
Jack, I tend to agree with your observation about too many off-topic posts on the forum. I also wrestle with it from time to time and try to think that it is helping someone with prostate cancer in some manner. There is a rule about politics and religion for obvious reasons as well as advertising and flaming posts. Guideline 10 says "Stay on topic. Posts which are not relevant to the forum topic may be deleted." which I suppose would try to limit the OT posts if one wanted to be the enforcer of such things.

I only go back to 2018 but I have seen an ebb and flow to posts over that time. I would agree that there seems to be quite a few OT posts lately that could be easily consolidate into the endless "No subject (Part 5)" threads which seems to wander everywhere but is only one post. Hope you get some responses, If not change the title to "MLB starts this week".
Posted 4/5/2022 12:25 AM (GMT 0)
Jack, your point is well taken

A couple of years back, when Covid first came on the scene, and everybody at the same time was worked up over the political situation, we Mods made a joint and unanimous decision to give everyone a little rope, as we felt we could all use an outlet, with all the tension and pressure in the air. Over time, some of the political stuff became a bit out of hand, and we stopped that. But some of the harmless off topic subjects were left alone. I think , and this is just my personal opinion, that there is nothign wrong with some off topic posts here and there. And i realize i am guilty of starting one of them recently. I dont think it would turn off a new member, as long as its not rampant.

We remain vigilant to not let things go totally off the rails. I dont know if there is a right answer, but i think we all need a place to vent, rant or otherwise pontificate once in a while. And i think its ok, as long as we respect each other and differing opinions.

Again, JMHO.
Posted 4/4/2022 7:30 PM (GMT -5)
jack -- this forum has been a here a long time, and when you needed help
Posted 4/4/2022 8:47 PM (GMT -5)
I made a thread on this forum back in 2019 on the subject of just what kinds of threads do get started here. Were most of them strictly about PCa, its treatments, its medications, its impacts etc. on people? Or was there more here than that?

I was already aware that then, as now, there were indeed threads being started here that were only marginally related to PCa, or even entirely OT.

So out of curiosity I did a little sampling of forum thread creation back then, looking at a couple of months or so of posting done at that time, and identified what seemed to me to be the primary thread subject areas back then, and which are probably still so today.

Here's the thread describing that sampling,

https://www.healingwell.com/community/default.aspx?f=35&m=4133171

and here, excerpted from it, are the thread subject areas that I identified:

O requests and pleas for help ("I was just diagnosed with PCa and ...") ("My husband was just diagnosed with PCa and ...")
O requests for information ("Does anyone know about this drug and how effective it is?")
O reports on recent medical advances ("The FDA announces the release of this new drug ...") ("New breakthrough in treatment ...")
O cancer-related topics (sometimes about PCa, other times not) ("Cancer genome in families...") ("Social views toward cancer changing")
O medical topics more generally ("Hospitals becoming hi-tech") ("Medical schools updating training")
O personal reports from members, how we're doing ("My PSA went down") ("Starting treatment next week")
O personal reports from members, actually personal ("My grandson did this the other day!") ("We're going on vacation!")
O person-to-person (Member A posts message to Member B, but we all see it)
O humor threads, especially Friday
O forum policy, especially as explained by the mods, including warnings to tone it down
O Off topic. Occasional threads on lots of non-cancer stuff, posted to amuse or inform, and to take the edge off some of the seriousness that can build up around here.

I'm afraid I have no data on frequency of occurrence of each of these, although the higher the topic is on the above list, the more threads of its kind were likely to be appearing on the forum, as I recall.

The above list indicates that medical and treatment issues are indeed more toward the top.

So I believe my study shows that the forum's stated purpose, to exist as an information source for those coming here to gain such information about PCa, is being served.

On the matter of new people coming here and then being put off by what they may perceive as too many off topic threads, I certainly haven't seen that in my own experience.

I say that because in addition to this forum, I am active on three others (ones on academic librarianship, veterans' issues, and Florida politics), and all of them are tolerant at least to some degree of occasional marginally relevant or even OT discussions.

And yet in all of them I have continued to see an ongoing influx of new usernames, as well as posts from such people, who have not seemed to be put off by the presence on those forums of those "other' threads.

Yes, this is a forum dedicated to PCa and its issues. But I think most of us are going to feel that it can be successful at doing that while still allowing a degree of acceptance for additional discussions.
Posted 4/4/2022 9:15 PM (GMT -5)
I don’t mind the OT threads. As in most communities that have a purpose, there is some small talk at meetings/gatherings, and I see the OT threads in a similar vein. They also give me a chance to better glimpse other members’ personalities, senses of humor, etc. I think it adds to the “community” aspect of our dealing with our unfortunate situations. That being said, I don’t feel compelled to click on all of the OT threads.
Posted 4/4/2022 10:15 PM (GMT -5)
Prato, Mumbo and all, thanks for your replies. As expected there could be hundreds of replies based on each person’s personal preferences. Just as there are with the question, should someone be laid out for disrespecting a spouse or love one. This forum is for prostate cancer support. How the previous scenario fills that need, I don’t see it. I can understand the need to blow off steam and to rant on occasion. Still, is this the place to do it off topic? I have to agree with what Mumbo said and that off topic posts could be started in the no subject thread. However, that seems to have become a monster long thread. Maybe a new thread could be started with a title like. “Everything about Everything,” to compliment the thread,”Nothing about Nothing.” LOL.
I love the OT humor on Friday, as we all need to smile every so often. 81gys remarkable stats on everything is an eye opener. As is the veterans knowledge about everything PC.
I am not here to change anything that has been going on for years, just trying to see if this forum could be a little more on topic.
My wife follows the Breast Cancer forum on Healingwell. I have looked it over as well. Seems they can stay on topic continuously. I guess we men, just can’t help ourselves. So who wants to talk about the upcoming MLB season? LOL
F8- not sure what you implied? As I said in my post, this forum has been invaluable to me for all the help I have received and will continue to receive. I hope someday to give back what was given to anyone that has a question I can answer. I have directed several people I know that have PC to this forum as I still feel it is the best I have seen so far for everything PC.
My best to all, and moderators if you would like to delete this thread I wouldn’t mind. My opinion has been noted.
Jack

Post Edited (Jack64) : 4/4/2022 9:30:44 PM (GMT-6)

Posted 4/4/2022 10:38 PM (GMT -5)

I feel that when I was first diagnosed, I was VERY focused on threads that carried medical information.

My treatments commenced immediately upon "diagnosis day" --- my PSA was skyrocketing & I felt like I was in the middle of a medical WHIRLWIND.

I was SO thankful to find other members here who shared some common threads with me, in terms of diagnosis and treatment.

Suddenly, I didn't feel alone in my diagnosis!

But --- as time went by --- the members here became so much MORE than just fellow medical patients.

As one spends more time here, it's nice to see that our members here are LIVING LIFE, beyond diagnosis and subsequent treatment.

It's nice to hear about their hobbies, interests, travels, careers, and endeavors --- details that are infused in the context of this medical support forum.

If we simply shared PSA scores & the names of our current medications, interest in this website would nosedive quickly.

Once new members spend more time reading here, that sense of camaraderie and fellowship follows --- and within that, the sense of medical support follows.

That's what builds enduring readership and membership.

The designation of OFF-TOPIC in the subject heading also allows readers --- both new and veteran members --- to quickly skim through threads that most pertain to them. We all seek different types of posts, at various times!

Along the way --- we've shared posts on our favorite music, our "first cars", favorite concerts, favorite books ...

It's like enjoying an occasional morning coffee break with a colleague or enjoying a stop at the pub after work with a comrade, in the midst of it all.

And there's where the deeper bonds evolve --- as we seek to support each other, through thick & thin.

Thoughts, experiences, reflections ~~~
CYCLONE - # Iowa State University

Post Edited (Cyclone-ISU) : 4/4/2022 10:05:10 PM (GMT-6)

Posted 4/5/2022 12:49 AM (GMT -5)
Cyclone, above all else, I respect your opinion. I certainly respect your longevity given the cards you were dealt. Most of all, your welcoming and compassionate posts is what gave me the courage it took to start asking questions. The off topic posts you mentioned, such as, favorite music, cars, books, hobbies and more personal info is indeed enlightening. It does bring the group closer together and bonds us as brothers. However a poll on which forum posters side or don’t side with assaulting someone seems al long way off topic. What support value or bond with members does it create? The only reason I posted my opinion was that everyday it was the main topic of discussion. Like I posted, I do appreciate all the help given here. It just seems a support forum for PC shouldn’t include topics that could divide us. My best to you for continued success in fighting this disease.
Jack
Posted 4/5/2022 2:46 AM (GMT -5)
On one hand I couldn't help but notice the ever increasing number of OT posts compared to the past. And was thinking it's not all a good thing.

On the other hand - I've started some of them. The vast knowledge of the members here is priceless to me.

Maybe we should just keep OT posts in mind and limit them if we can.... I think the Will Smith types of threads are very much unneeded... I went through a stage recently where I was posting a lot of JOKES... I'd always seek out a Friday Humor type of thread and add to it versus starting a new one.

Maybe ALL OT post should have a beginning to the title-> OFF TOPIC or at least OT.
Posted 4/5/2022 8:04 AM (GMT -5)
I look at only some of the OT posts, but as long as they have "OT" in the thread title, members are free to ignore them. If there are so many that they take up too much real estate, especially on page 1, that's another issue.

Djin
Posted 4/5/2022 2:22 PM (GMT -5)
Jack, as the culprit who started the Smith vs. Rock thread, I suppose I should respond to this one. Though, and I say this with intended levity (insert smile emoji), that it's a bit ironic to have an OT post that is created with the intent of complaining about OT posts!

You have only been with us a few months yet we respect your opinion as we do of all members. Hopefully you will stick around and "pay it back" as many of us have done. If you do, I think what you will find is that this has become more than just a "facts" forum but as others have pointed out it has become a bit of a community. A number of our members have felt the bond so much that they meet a couple of times a year in person. Those of us who have not done that still feel that many of the posters are our friends. We all certainly share a common bond with our cancer.

So, as Prato said, the mods unanimously agreed to loosen the net a little bit and let friends enjoy some OT posts. I have not heard of any of these threads that scared away new members but of course that's always a possibility and we need to be mindful of that. In any case, we will likely continue to allow OT threads until/unless they get out of hand and then we will do our best to find the right balance.

Thanks for your thoughts.

Jim
Posted 4/5/2022 2:29 PM (GMT -5)
I liked you commentary, Tudpock18.
Posted 4/5/2022 3:28 PM (GMT -5)
Personally, I appreciate the presence of the OT threads (as long as they don't overwhelm everything, I suppose). This forum is kind of like wandering through a cocktail party filled with various conversations -- some of which may not be for me, and that's fine. And, quite honestly, I don't want to spend every waking moment dwelling on my PCa. And I do find it enjoyable and helpful to chat with others who are dealing with the same thing, even if it's OT.
Posted 4/8/2022 1:53 PM (GMT -5)

I just wanted to say --- with various perspectives to consider that were presented in this thread --- this was a brotherly way to discuss things, here on the forum.

Thoughts were shared --- perspectives were considered --- viewpoints were voiced --- respect was shown to everyone, throughout.

Just an appreciative line, to each & all ~~~
C-Y-C-L-O-N-E ~~~ # Iowa State University
Posted 4/8/2022 2:09 PM (GMT -5)

Cyclone-ISU said...

I just wanted to say --- with various perspectives to consider that were presented in this thread --- this was a brotherly way to discuss things, here on the forum.

Thoughts were shared --- perspectives were considered --- viewpoints were voiced --- respect was shown to everyone, throughout.

Just an appreciative line, to each & all ~~~
C-Y-C-L-O-N-E ~~~ # Iowa State University

<Like>
Posted 4/9/2022 10:48 PM (GMT -5)
While I do like to see off topic threads identified as such in the title I don't find the level of off topic threads here excessive. Since everything is political these days, anyone who writes an offbeat post that isn't immediately whacked by the mods for politics is being pretty careful and what they have posted is likely to be ok in other respects.
Posted 3/5/2023 12:31 PM (GMT -5)

Jack64 said...
When I was first diagnosed with PC, I looked to the internet to see if I could find help on what it meant. What options I had. When I typed in Prostate Cancer support, Healingwell.com came up. I clicked on Prostate Cancer and this forum came up. What I read was prostate cancer survivors giving great advice on everything from tests, side effects from various treatments and personal histories. I read many posts and was extremely happy I found a site that could help me make a decision on how to proceed and what to expect before, during and after treatment. I also saw the compassion given to those suffering from this horrible disease. I saw forum members using humor to help relieve anxiety produced when a PC diagnosis is learned. That is still the topic of many posts.
I am not certain what I would have thought if the first post I read was, what do people think about what happened at the Oscars. I know I also contributed to this thread as I never back down from a direct question. For that, I should have kept my opinion to myself. When a thread is started with OT not related to PC, I wonder what it adds to help those seeking help with PC. I am not a moderator nor wish to silence debate, but this forum is headed with Prostate Cancer Support. IMHO, Shouldn’t that be what is discussed here? I would think that all other topics, Political, War, and what Hollywood is doing could be better discussed in another forum. Sorry for stepping on such a rich debate, but any newbie coming on is looking for help with their newly diagnosed PC. I really do appreciate all the help I have received here. Always, my best wishes to all,
Jack

what i remember is that some guys thought "the slap" was staged. i mean really ................

https://twitter.com/dom_lucre/status/1632354462898483200
Posted 3/5/2023 1:13 PM (GMT -5)
I'm guilty of going slightly off topic.
My radiation side effects LUTS have gotten bad this last couple of months. I tend to get side tracked and delve into my emotional state.
Life is full of problems and they are not all related to Pca so I tend to air other issues that make the PCA related that much harder to deal with.
Maybe it's unfair but it has a positive effect on me when I get this stuff out there.
Hopefully I'm not straying too far.

Glen
Posted 3/5/2023 1:26 PM (GMT -5)
"I have rooted for Will Smith my whole life," Rock said, "...and now I watch Emancipation just to see him get whooped." (Smith plays a runaway slave in Emancipation)

hahahahaha woooohaaa!
Posted 3/5/2023 3:17 PM (GMT -5)
Probably enough has already been said about this topic of OT threads here on the forum, and whether they need to be regulated more, or less, or whatever.

Especially as to whether or not the presence of such threads might deter curious visitors from wanting to stay around.

But taking another look at this thread again today brought to my mind another angle, or way of looking at that question, based on a recurrent experience I regularly have at appointments with my uro.

He's a five-star guy across the board, and always has been for the twelve years that I've been with him, and the appointments with him always go very well.

But this thread's discussion about OT posts made me realize something about those appointments with my uro that I hadn't really thought much about before.

Namely, I had never really thought about it until re-reading this thread, but I now realize that whenever he would come into the exam room, smile and shake my hand, that he would immediately start off by making a few minutes of small talk about topics we had come to realize that we both had a mutual interest in: the fortunes of the local UF Gator football team, for example, or Gainesville city politics, or some other similar thing.

Then after a couple or so minutes of this, he would, without rushing, move the conversation smoothly over into how I was doing, was there something I cared to bring up, etc.

In the past I had always thought that this was just his personal manner of speaking to patients, but now I'm sure it was always more than that.

It was an intentional technique on his part designed to put patients at ease, by talking with them about familiar and comfortable issues first, before moving on to the patient's more serious medical issues.

I'm wondering if this is analogous to OT threads being posted here on the forum. Perhaps such threads can have a similar putting-at-ease effect on those who come here and see them, including visitors. Perhaps visitors, especially noting the "OT" designation at the beginning of the titles of such threads, would in fact not be put off by that, but possibly be relaxed a bit, and remain willing to look at the forum further.

If they're made comfortable at first, perhaps they become more interested in staying around.

As long as they're aren't TOO many such OT threads, of course.

After all, my uro doesn't spend the first twenty minutes of my appointments with him talking about football!
Posted 3/5/2023 4:07 PM (GMT -5)

81GyGuy said...


Namely, I had never really thought about it until re-reading this thread, but I now realize that whenever he would come into the exam room, smile and shake my hand, that he would immediately start off by making a few minutes of small talk about topics we had come to realize that we both had a mutual interest in: the fortunes of the local UF Gator football team, for example, or Gainesville city politics, or some other similar thing.

Then after a couple or so minutes of this, he would, without rushing, move the conversation smoothly over into how I was doing, was there something I cared to bring up, etc.

Interesting perspective. As it turns out I see three docs with some degree of regularity and now have known all of them for a number of years. My PCP likes to travel and almost always starts with, "what interesting places have you visited recently?" since he knows we travel as well (my wife also uses him). My dermatologist went to med school at the University of Florida (my alma mater) so we always talk a little football before he starts burning or cutting off skin stuff. And my orthopedic surgeon who gives me gel shots for my tennis (he also replaced my wife's knee and worked on my meniscus) is a tennis player whose kids both now have tennis scholarships so we always engage in a bit of tennis discussion while he's preparing the big needle.

I do think part of this is the intentional part of putting patients at ease that they learned in medical-charm school. But I think the other is simply genuine human interaction of people who have gotten to know each other over a number of years.

BTW, 81, who did your IMRT (you can email me if you like)? In the small world category there is some chance I know him or her since I have a few folks I knew who were local G'ville docs.

Jim
Posted 3/5/2023 4:07 PM (GMT -5)
One more thing.

While I'm at it, I would like to say something about the making of "OT" threads here, an aspect of it that I don't believe has been covered so far in the discussion.

And it's something I've done frequently, so I'd like to be bringing it up.

Okay, there are three kinds of threads that can be made here:

1) Clearly relevant threads: here's a new PCa drug. Current and ongoing research in new treatments. What are likely side effects if one does such-and-such.

2) Clearly off-topic (OT): Major League baseball. Hollywood movies.

But what about

3) Gray area topics.

Topics that are medical in nature, but not immediately or directly related to PCa, such as

hospitals
general medical research
history of medicine
medicine and society
discussions of other cancers

Personally, I have always taken the attitude that "gray" areas such as these, while perhaps not offering information of immediate value regarding PCa, might still provide information that could be of some value in a PCa setting.

Say, for example, I did a thread on "Waiting Room Etiquette." While obviously not of immediate PCa value, it might still offer insights that one might apply when present in a waiting room, there to see one's uro or onco. So such a thread did offer something of value.

I would think that such "gray" topics would usually have a place on this, our PCa forum.

I guess it would become a question of what is TOO gray, that a topic and its corresponding thread are technically medical in nature, but a bit out of scope for HWPC. Something like a general discussion about quack medicines, perhaps?

Anyway, we (or really the Mods) can always decide the matter on a case-by-case basis, of course, and that's probably the best way to go.
Posted 3/6/2023 7:58 AM (GMT -5)
Speaking of MLB,

Considering my ADT attention span, I think the pitch clock will allow me to enjoy some games this year.
Posted 3/6/2023 10:58 AM (GMT -5)
Mattam, I guess this is not OT now. It was about time something was done. However the rule should have been, stay in the box. The only time I remember anyone getting out of the batters box was when a pitcher threw at you and you had to bail out. My pet peeve is all the showboating and adjusting the batting gloves multiple tImes. There was no batting gloves when I first played. We would build up calluses and use pine tar in place of them. When batting gloves first came in, we could take anywhere from 50 to 75 pitches in the batting cage, off a machine, without readjusting them once. Back in the day if you showboated, a pitcher like Nolan Ryan would throw at you or behind you. Back when starting pitchers pitched complete games and players continued to play with minor injuries. Today, such pampering of the players. If they get a blister, they can’t play, no more iron men to be had.

81, I like the gray area posts that include your Friday humor. The rooting for teams and the reach out for emotional support if needed. I like anything that can help us all get through our journeys and bolster our spirits. However, IMO, there have been a few OT posts that I felt belong with other chat groups as the moderators deemed necessary. I started this thread because I felt the poll on “THE SLAP” was one of them. Again, just my opinion.

A question: Which Healingwell member was hit with a Nolan Ryan fastball during Spring training?
Answer: Me, First pitch of the game on the elbow. Maybe he thought I was showboating. LOL. I walked to first base with pride that I got on base for my team. No trainer came to check on me. My second time at bat, I hit a very high fly caught by the catcher in play. At least, I can’t be counted as one of his strike outs. LOL. My best to all.
Jack

Tudpock, maybe a new poll. How many have been in off topic discussions with their doctors?
My RA likes to asks questions to me about any upcoming vacations while doing a DRE. Not easy to talk while that is happening.😳

Post Edited (Jack64) : 3/6/2023 8:09:14 AM (GMT-8)

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