You may see a new pop-up regarding good behavior in our community. I hope it will help reduce all internacine toxicity and maintain our community as the worlds most helpful space for peer to peer discussion. Here is a preview of the pop-up, which will display the next time you post anything.
Be kind, respectful, and understanding of one another
Actively listen & have in mind that everyone deals with their own private challenges.
Do not post member-to-member personal or direct challenges or attacks
Our community is a safe space. If you don't like something, click the "report" button.
Post from your own experience
"For me, this worked..." rather than "You should do this..."
Written by
Darryl
Partner
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Please refrain from this woke approach. No need to make changes,, This is our place to share and express ourself. Be loud, be soft, be emotional, members are dying and is emotional. God bless
Well, perhaps you offered a good example. Restricting personal attacks is not a "woke approach," (which I will assume you did not mean in a deragatory way). Emotional expression about your disease is totally cool. Vicious an hominem attacks against your peers in our community is not ok.
Thanks, Darryl, good idea. There are too many personal challenges and/or attacks in this forum. I am pretty sure many members do not post because they may be afraid to be criticized or attacked ,
I liked :"Be kind, respectful, and understanding of one another" and "For me, this worked..." rather than "You should do this...". There are too many "you should do this", from people without any clinical experience in treating PC and without knowledge of the full clinical situation of the person.
I like your recommendation that we post from our own experience.
It would be nice if members didn't "Highjack" a post. Members post for information, not to create a platform for off topic discussions among other members. I recently deleted a posting because it transformed into a completely different topic.
I’ve been too sick to post but I can’t resist yayahahahaya ya ( I can hear the the ohhh boys from all the way over here 😂😂😂). This group is rather diverse ... it’s mostly PCa patients and their caregivers. Beyond question the cadre of very important medical knowledge imparters .. Tall_Allen and Nalkrats jump to mind , there are many others .. these people form a backbone critical to the informational needs of the group ..BUT .. They are not the only “ need “ here and far as I know, none of those guys address the other critical needs that pave this group. Then there are the “ know betters “, “ this is my space, I staked it out “ do’ers, the sheriffs , the whiners and many more. Basically the same cross section seen everywhere on the web and everywhere in life.
There are a lot of sentiments already expressed here and I’ll add this one as the surpreme example of the” total failure “ of the group to do its job right. I think that many on the group, particularly a few ( you know who you are ) posting here in this thread are egregious in this respect.
The guys here range from guys that have PCa but are in remission with few to no symptoms for years ..... to guys that are swimming in the worse that PCa has to offer , swirling the drain ...looking over the side of the abyss. It’s probably self serving , selfish even, but I think those of us swirling the drain are the rockstars here ... the rest of you will be here too soon, but it’s here and now for us. We deserve the critical recognition. People here seem to be dying like flies lately ... those are the rockstars here. Just Imho.
So, let’s get to it : Raise your hand if you’ve heard of “ Cisco “ ( com’on now ) .... raise both hands if you were among the army of “ know betters “ that attacked him and drove him off the group .... better be a forest of arms up now.
Did any of you bother to visit his Facebook page and discover that he was a nationally acclaimed journalist ..... that he was a globally acclaimed poet , recognized world wide ....... NO ? I didn’t think so.
What you did: what he presented as was a troubled man caving in from the weight of mental disintegration and impending death ...reaching out , the only way he knew how, poetry, for comradeship and someone to understand and hold his hand. Like partners in death.
What he got: ridicule , personal attack, humiliation and much more .... guys here attacked and drove him off the group.
He offended people’s sense of “ this is my staked out space “ , or this isn’t what “ my “ perceived picture of this group should be “ ..... and I could go on and on. Of course poor Cisco passed shortly after being rebuked and disemboweled by this group ..... I think “ all “ of us ( yes even me that tried to help him ) had a responsibility to a brother that this group failed.
Anyway ........ my point is that many ( most ) off us are someplace in between Cisco and those in remission.... that all of us should have a place here and the rest of us should try to support and prop up the most needy and not attack them. Not attack anyone here. We might have to bite our tongues sometimes and even eat a little crow to make allowances for the guys driven crazy by this or those suffering mentally from years of cancer drugs. None of us are psychiatrist nor are most of us doctors as well ... that still shouldn’t prevent us from lending a comforting hand or telling an obviously needy guy his poetry is great ..... from time to time. It’s not going to kill you to let a few whacked out guys trying to make feeble humor to attach to your thread occasionally ... or make seemingly nonsensical posts ... their Lupron fog and brain deterioration starting to show a bit ( raise your hand if your speech is slurred noticeably .... my hand is up )
We’re all brothers here ..We all share the common prospect of death .... I for one can shine on stuff that I may have taken exception with only a couple years ago ... I think all of us can and should do the same thing as a collective community. We should go out of our ways to give people support rather than be the naysayer.
I hope you can stop and give this some thought, I know that some will reel in indignation .... other just dismiss me ... that’s human nature ... I hope you can read this in the personal , and constructive vein that it is intended to be .
My wife and I had some take in Chinese food a few nights ago. So time comes to "eat" those fortune cookies which I detest cause I've eaten the paper fortunes by mistake a couple of times. Well anyway this time I broke mine open and here is what was written on my fortune:
"You are one of the few whacked out guys who is trying to make feeble humor to attach to your thread occasionally ... or make seemingly nonsensical posts"
I nearly fell out of my highchair when I read that, it's spot on.......and the damn thing was written in Chinese....
Omg yayahahahaya yayahahahaya ...go get ‘em boy. No one here’s brain is more damaged from cancer treatments as you are brother ‘cept maybe me. 😂😂😂. You are the best ... the feeble humor king whose talent I dearly admire.
The last fortune cookie I had, with some Covid era home delivery of course, was last week ..... it was blurry so I had to use my glasses ( which I had trouble finding because ...... I need my glasses ). It said “ this fortune is for someone else “. Drat.....
Thank you Kaliber, well said. I'm new here, only a couple posts because I was attacked by someone for sharing what has worked for me. I'm six years in stage 4 and fortunately I've been blessed so far compared to some here. It's not easy to share..but we need that space. I appreciate your candour, and honesty. Sorry to hear about cisco.
Thank you so much 4Rosebud. Sometimes we see people on here actually hawking/ pushing unproven ....even ridiculous cures ...oftentimes they have a financial interest as well. There’s nothing at all wrong with mentioning what works for you, your supplements , diets etc. there are several very knowledgeable and wise members here with real medical knowledge and personal success with supplements, for example. My morning medication regimen is literally “ loaded “ with supplements I gleaned knowledge about, from them. Doing due diligence on the web and Google is a must with all of these . Most importantly, tho, speaking with your medical care team is the main thing you want to do , before you put anything like that into your body .... run it by them to get their input and direction. Sometimes an obscure contradiction exists or they just plain don’t want you to do that. One size doesn’t fit all in these cases. You trust them with your life .... you have to respect their medical direction as well.
I hope you continue to be an active member here , expressing what you need to say. Hopefully the brains here can offer their own takes , if they feel like they should ...especially for your safety and good SOC. I hope they reach out thoughtfully and with kindness / compassion to help your PCa experience be the best it can be , with support of the group. If you need a “ lift “ ....feeling down, hopefully us clowns here can take your mind off things for a bit, even make you smile for a minute as well. This is a community... it takes all of us to make that community be it’s best.
thank you buddy, I came for support...I'm super healthy and attribute it to what I do, I spent 30 years in diagnostic radiology. So I've learned to question everything, just my nature. I check everything. I appreciate you reaching out. I was thinking about leaving, but I do support for new inducties? if you will here in sonoma county..
I have a question for you. Do you work or have outside sources of income or do you know of funds available for alternative treatments..Thats what I do but its expensive, medical pays for my homeopath, integrative doc. as part of my team but treatments cost extra..Any ideas would help. Covid is making things difficult.
where do I find the more natural approaches here in this group...
Hey 4Rosebud .... small world , I installed, maintained and repaired radiology suites ( tri spiral tomo etc ) for 30 years myself. I’m 74 now, a biomedical engineer... retired over 20 years ago and my wife retired from the medical world this past October. She worked for UCSF Medical Center , S.F. . She was a trouble shooting doctor’s liaison for the medical center. We both live on our modest fixed retirement incomes , S.S. Etc. I’ll croak pretty soon which will reduce my wife’s retirement income substantially. we own our house, my pickup truck is 11 years old ... it will be my last vehicle. myself , thanks to ADT and a lot of painful bone joint mets , I’m pretty much reduced to being an invalid and near wheelchair material ... I can’t walk 40 - 50 feet without help. I escaped hospice 26 months ago ... my first diagnosis - offer of medical help was directly into hospice. I’m still kicking but I’m running on miraculous fumes yayahahahaya I have few to no expectations past being alive here and now, today, and having hope I’ll wake up alive again tomorrow morning. My daily QOL is ...... well ..... marginal at best ... as my wife is fond of saying, “ it’s better than the alternative “. Guess I’m kinda far past thinking of sources of income or working at all .... its a bit late for me . It costs about $11,500 a month to keep me alive but my great insurance pays for the majority of my Kaiser medical center expenses.
There are numerous very knowledgeable guys here on the group into homeopathy, supplements and numerous similar medical and holistic interests, I’m sure you could engage in a lot of informed and interesting dialogues with all of them. Most of them love to discuss these topics. The primary focus of the group, tho, is and has been “ standard of care “ mainstream medical practice and all related items. This group doesn’t allow talk of sales or direct member business on the group.
thank you s I r. Its admirable of you to spend your time with me here. ha It is a small world. I had my surgery at UCSF. How long has this been going on with you. have you documented your journey.
Sounds like quite a trip alright. You have a great attitude, I find that goes along way. The old they can kill you but they won't eat you mentality so hard being such a long slow journey.
How would I get to the natropathic group. do I just search it here's, Are you able to get any financial support from the companies your taking med's from.
My zytiga is paid $8700 mo. I hope your able to as well for financial hard ship. I'm sure you've tried.
I hope your able to be comfortable through this. I'm sorry you've had such a ruff journey.
I feel so fortunate, that even though my was siphered as moderatel agressive and doubling monthly immediatel post op I've avoided the pain for the most part.
I have a pain pump in my rump with a catheter to L2 that trickles retro and with diated a provicain that kills any back pain there and a totol hip to remove a golf ball size tumor and marrow in my left femur.
be well my friend. Have you tried massive carrot juice several 8oz per day for 30 days.?
Kumbaya is sometimes hard to come by in these parts buddy .... I dunno why so much. It’s the same everywhere I think tho, probably no more so here than many other places. It’s human nature and these are harsh times for all of us. Covid lockdown is an antagonist no one needs ... never mind the elephant in the room.
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