I know there has been some discussion and debate about this recently and so far I have said nothing as I respect everyone’s right to post on this forum, but today when I looked at the daily email and found 7 out of the first 10 posts were musings by the same person, I felt I had to comment.
I, and no doubt many others, rely on this forum to gain concrete information and invaluable advice about advanced prostate cancer from people who are immensely knowledgeable and thankfully willing to share their knowledge, but its becoming harder and harder to find the posts that I need to read.
Please could said musings be limited to one a day? I definitely think they have their place but I really need to be able to easily access factual information about advanced prostate cancer.
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hansjd
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Some of us have a limited concentration capacity due to drugs we are taking and " sorting the wheat from the chaff" is becoming increasingly difficult on here as a result of said .......now VERY frequent ...musings.
Please let the page be .....within common sense reason.........what it is designed for.
Agreed. Also, let’s not muddy our community with photoshopped images that don’t relate to prostate cancer. Images as comments or cute asides to other members are ok on rare occasions. Instagram is the place for all others.
Maybe a happy alternative is to see if the developers can implement a "mute" member or "hide posts from this member" type of functionality. As a developer myself, and one that spends part of his time working on a message boards system much more robust than the one we use here, it would be a relatively simple change request to implement.
I suspect “Musings” can be helpful for the muser and musee-
I agree this is a forum to get facts, opinions on treatment etc.
Sometimes the heartfelt feelings are very helpful as well.
I was a little frustrated too - like oh this isn’t intel I want right now. Not sure what the answer is but I hope people will continue to share and feel safe doing so. I hope Cisco is ok and will come up with a way to get those ideas out. Like you said, maybe in one longer post. I don’t see this as an ongoing issue but maybe I’ve missed some of these.
We all are party poopers when we feel we need to be! And of course we all have a finger to scroll down as needed.
I really don't think it's just a matter of skipping posts. When you are looking for posts that have value for your life threatening disease and almost the entire page is filled with unrelated content, it's discouraging. It requires more work and it's completely unnecessary. We don't need to tolerate this. I think there were 9 posts yesterday, could have been condensed to one with the small amount of content in them. One person's obvious need for attention should not become a problem for the rest of us who are using this forum to help us stay alive. Sorry if that sounds mean.
This is death cancer board , like any death board , is by its own nature a dark , grim and dismal place . I believe that most of us death sentenced brothers here seek company and support of as much or more value as the occasional trickle of useful beneficial cancer information available anywhere , including here.
I believe keeping this place encyclopedia like and disregarding or casting off the human emotional side of us people directly facing death would be a disservice and let people down.
Having said that, I agree there has been a lot of stuff happening that would be beneficial if throttled back a lot too. One thing for sure it has been a deep look into different minds and how different people might experience their own mortality, differently than others.
What the answer is , I don’t know. The nearly unbearable load it puts on Darryl isn’t fair to him as well. How do you tell a person losing their life to get lost ? I dunno for sure , I couldn’t... seemingly other people here have no problem with that. Most of the time things seem to work pretty well here. Maybe we could all try to return things back to that place. I’ve been trying, maybe others could as well. Evolution and change are the basic things reality is made of ...
Whatever ... I don’t have a pat answer myself ... this is just my two cents worth . Maybe we can all work together with Darryl to make things more acceptable to everyone.
I agree that it's good for people to share the emotional side and other non-medical issues about prostate cancer. I have done some of this. But I also tried to keep the content related to cancer since that is the topic of this forum.
No one here is saying people can't express that side. What we are saying is there should be some relevance and the forum shouldn't be flooded with posts by one person. Making a reasonable request for someone to change their behavior is not equal to kicking them off the forum.
I’m sure you mean to say the technical medical issues rather than “ non-medical issues “ because almost nothing being said on this forum is not related to someone / something in death phase cancer. Just talk of a trip to New Orleans, chat about controversial applications of vitamins or someone hurting internally emotionally trying to vent .... are all about cancer .. death phase cancer or they wouldn’t be here. Lots of guys here have been around for many years , lots of people here lead a fairly normal daily life. I know it’s hard for those of you in that fortunate situation to relate to those of us that struggle on a daily basis just to put on a pair of pants , make it to the bathroom or try to be as pain free as possible. Those of us that are trying to find an outlet for mental anguish with brothers that know of what we speak. Some here want to pretend to be more normal than they really are and are in denial... they surely don’t want to face gritty downer talk about people struggling physically or emotionally. I sure get that.
Yes Cisco brought something new here ... and a lot of us found that irritating in many ways. Yea buddy . But
I think this is an opportunity for people here for self reflection and perhaps new thoughts of compassion. It’s a lot of trouble for some and inconveniences others . Some in denial just wouldn’t want any of it. And ... all that makes perfect sense.
I think that we as a group could work together for a common good. ALL try to gently guide and steer the “ really needy” to give them help and normalize the forum .in the process. Check some of my most recent posts to Cisco’s. We need to accept that people venting hurt and anger are just as relevant as people hawking controversial vitamin treatments. The human side probably counts the most really .. Everything else here just supports that.
Maybe a a-b board type of things ... a where Nal can perform his magic unhampered and whom wouldn’t want that ... vitamins galore go for it ... then the “ b “ board where people like Cisco can vent to their satisfaction and you can shuffle people like me ..
With my raw gritty death talk off to a convenient place where you can ignore it . Let’s shuffle off to “ B “ all the death notices , the wives thanking you for help and people like J-O-H-N with his great humor but always non technical medical contributions. No ? Doesn’t seem right either ? Yea ... not to me as well.
How about tossing In some ideas that includes ALL the brothers here and just not a select few ... that works for the mental hurt and frustration or an alternative that works for those hurting inside in places that pain meds just don’t reach ? People just needing like company in this time of need for all of us. It’s messy isn’t it ..... I know let’s dump it all in Darryl’s lap yayahahahaya yayahahahaya
Com’on brothers were all better than that ... and in this holiday season should quit looking inside so much and look out at the needs of others a bit too. We all can go back and focus on “ me “ later .... can’t we ? Let’s hear it ... how about some positive inclusive suggestions... and less hack ‘em off stuff ???
Yep it’s messy brother Darryl isn’t it. Usually most people here have a semblance of custom and appropriateness yayahahahaya. But seems like there is always an occasional one that the mental stress has gotten to ... bent a bit off the straight line so to speak. Some extremely different realities. I think I had a direct hand in unleashing some of this ..... yep I take responsibility for that. Still .... I think a “ few “ could band together to gently guide those post bombing to leave room for others ... or post more slowly ... weekly or every few days to give others time to digest their post or leave time for those that don’t come every day .... something like that. Too much of a good thing ...anything gets very tiresome .... for sure. Seems like it’s more appropriate for members to help guide and educate the newbies in a gentile responsible manner... like many have done with me. It doesn’t and probably shouldn’t fall on you for this. You more appropriately are the “ hammer “ of last resort , seems like to me. Hey ... we’re re nearly all croakers here ... let’s help each other out as brothers. When you are croaking it’s REAL hard to not think about “ me “ most of the time. Helping others can help “ me “ take our minds off things for a bit and make “ us “;feel better too. Together we are strong, we got this 💪💪💪💪💪
People like cisco are under tremendous stress and are venting too much unrelated material causing distraction and frustration in other members who spend their precious time on this forum looking for serious, authentic information and treatment choices. I agree with these fellow members and request that sanctity, purity and relevance of posts be maintained for everyones benefit. Cisco's needs can be met in counselling sessions with a trained therapist.
Thank you. Well stated. Just as this forum is not a substitute for professional medical advice, it is also not a substitute for professional counselling.
Another issue....I have things set so I receive all notifications to ensure I don't miss information or advice when seeking it. It's incredibly frustrating when one or two individuals "hijack" a post with comments that are completely unrelated to the topic I'm seeking info on. I get six or seven notifications only to find meaningless comments.
I respect your opinion, however, like our affliction itself; we deal with the disease as a community . Each of us as individuals stand to be encouraged within the community and may learn from each other.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is this a Forum on Advanced Prostate Cancer or Coronavirus?
QoL - It’s HALLOWEEN let’s party!!!!
SORRY, TO BOTHER EVERYONE BUT IT IS TIME TO HELP AGAIN
It is already happening
