I see there are many debates and contentious back and forth on why information is being prescribed and questioning of credentials and qualifications. I thought to myself, wow as if this disease isn't bad enough now we are going to stress ourselves out with this. I think that some here don't like others not agreeing with their thoughts and many think that theses disagreements could be delivered in a softer fashion. There are those here that are out to protect the vulnerable by making sure disclaimers are attached to the information provided. All good stuff but how do we accomplish this without attacking each other. I don't have the answer hence this post.
Here is my experience with HU and how I use the forum.
I desired to learn about a supplement regimen and I found fantastic advice and opinions from Nalakrats and others. Thank you!
I needed direction and advice for the next steps in my medical treatment and I received all I could handle from Tall_Allen and others. Thank you!
I try to take the information given in a clinical fashion and not in an emotional one. Easier said than done when facing death but one that is important if I am actually going to receive what I seek. If I get a harsh response or an arrogant one I take the emotion out read the information provided and I move on to the most critical step.... I research what has been given to me here and I make up my own mind as to how I proceed. What I don't do is argue with the person providing me this information. This would just make me feel worse in the end and I doubt I would gain a lot. I do however ask respectful questions and I get amazing answers!
I treat the research of PCa and it's treatment as a job and try to act professionally here as I would in the workplace.
This forum has been and will continue to be the basis for my list of questions for my MO & RO. I also take my doctors advice and opinions and throw them out here for feedback. It's great!
That's my story, anyone out there disagree? LOL!
Jim
Written by
Moespy
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I couldn’t say it any better, Jim. this is exactly how I look at it and try to follow the way you describe it. It’s NOT about who is right and who is wrong. It’s ONLY about making sense of the information being given to us at the moment we receive it, NOT after a 10 years from now when things had changed. Let’s help each other.
Well stated! Everyone here will benefit by trying to follow your example.
But . . . two points:
1. I see similar disintegration of "discussion" & "sharing" into "ad hominem" attacks & taking remarks too personally on other on-line groups; and
2. I remind myself that some/many of those posting are suffering side-effects of various treatments, especially ADT & depression, & may get overly emotional in response to comments.
So, I fully agree with you, Moespy, but can appreciate why some comments become so negative, even vitriolic.
Maybe one solution is to hold off from posting replies immediately. Take some time away & return to the comment of concern later in an attempt to post a more thoughtful, understanding reply -- or no reply at all.
There is a tremendous value in the collective wisdom and experience on this site. Some are prolific researchers who are willing to share their their knowledge with us. Others are pioneers of sorts who aggregate information on off-label drugs, supplements, and alternatives and are willing to share ideas and regimens. Yet others are advocates for evidence-based medicine and proven treatments. All are valued and appreciated and none are mutually exclusive.
This site is not only an incredible resource, but a refuge of sorts where I can communicate with and learn from people who have similar challenges in life. Needless to say, those who not have PCa do not fully appreciate the impact it has - not just physical, but emotional and psychological. Not just on us, but on our spouse and kids, etc...
Anyway, all that to say, I really appreciate all of you and hope we can continue to find ways to communicate effectively and respectfully without alienating or driving away people who really add value and/or would really benefit from staying involved.
Above all else, this forum is or should be a support group. We can certainly disagree with information presented but it should ALWAYS be in a respectful manner.
Personally for me, I appreciate and learn from lively debate. Are we to merely to sit here and accept as factual without question the postings of those who perhaps are merely expressing their own opinions without evidence to support them, without opposing argument from those who disagree?
For me controversy and debate is an opportunity as a learning experience that should not be lightly dismissed.
I also have the choice with the flick of a finger to move on to another thread if I am offended, irritated or bored by postings where there is rancorous debate among participants that I find of little value to my interests or circumstances.
Perhaps this is why in this world of political correctness gone berserk, I just throw up my hands in despair at just how far our society has fallen as so many appear unable to tolerate opposing argument and opinion.
What would our country have become if our great leaders who formed it some 200 plus years ago, thought as we do today, as they argued sometimes violently and often offended their opponents in support of their desires and opinions!
Of course all of this is merely one man’s opinion.
I have appreciated everyone's comments on here. I started this journey with no knowledge and quite scared. The information i got from nalkarats, tall allen and all others has helped me do my own research and put me at ease in learning to deal with what to expect. Thank you to all for everything
I have only been the recipient of rather negative response to something I said once and I just don't respond and agree with Lyubov. We are all sick and on so many drugs sometimes I don't believe what I say myself. Kindness and appreciation for the the people here that dedicate their time and knowledge to us is all is more important than a perceived slight.
I already left one abusive "support" group because it was rabidly anti-surgery, and the party line was fairly strictly enforced. Is this endemic?
I don't think so. It has been my experience on this site that there is a well balanced population with great minds on both sides of surgery and holistic treatment. Hopefully we will continue this balance as it is important to allow others to have and state their opinions. Differences in opinion should be encouraged but delivered with respect to the others viewpoint.
You are so right sir. I have had my feelings hurt a few times. But the lupron makes me very touchy. We are all here for the prostate cancer knowledge that others possess. And a little humor and entertainment along the way is just an added plus as long as I am concerned. And you guys rock! So tone it down for a little while. I will reluctantly watch Married with Children. And wait for human nature to take its course. Enjoy.
Good thoughts Jim. I too get upset when I see great guys who spend a lot of time helping others get trashed. I’ve learned a lot from them and it’s helped me in dealing with my physicians who aren’t as up to date as some of the gents here.
Another important aspect of this site is letting guys know they are not alone. This disease can be life shattering and it helps to listen to others and offer them consolation and perhaps even the benefit of their experiences.
We're all going through a tough patch. And for all of us some days are better than others. Cut the other guy a little slack and try to remember he's trying to help us also.
And cut yourself some slack also. When we're under the influence of side effects or some nasty therapy, it's easy to burst out with something that you'll regret later. We're all brothers here.
When I see guys going at each other it reminds me of me and my first wife. I made a video of one of our hourly "disputes". I'm the one on the left, she's on the right.
When I was first diagnosed with cancer I was stunned by the reactions I was getting, don’t be a baby, Uncle Joe had PC and he lived till he was 90. Others would walk up to me shake my hand and say it was nice knowing you. There are so many beliefs out there it was a mind trip. I didn’t know what to believe. It wasn’t till a doctor got tired of my questions that he told me that they don’t really know what will happen. The doctor had patience who started with him who had everything (high Gleason scores, tumors everywhere and are still alive after 30 years. Others with low Gleason scores and clean scans die after a few years. Some of us don’t suffer any side effects while others get the whole list.
We are all going to the same place in the end, we are all just going our own route. Some of us get to meander while others get a fast bullet train to the end. We are all unique. Our solutions and work a rounds are for where we are in this journey. That is what I like about this site, is the wide open range of advice I can get from here. I can find someone who is traveling a close path to mine for answers. I can also find solutions from someone on another path that may work for me. Take what you can live with and set a side that advice that doesn’t suit you. Be kind to each other, you don’t really know what path that person has traveled. Today may be easy and tomorrow a living hell. Live well and Good.
I have often thought how great it would be if someone created an app that examined and advised a suggested PCa treatment path. You would input all of your past treatment, your current meds, vitals, current PSA and the app would then calculate and provide you an answer. Such as, when your PSA increases to X then you should do Y. Or, you should get a scan in 6 months to determine X and then do Y.
I still struggle greatly with what's next; especially with all of the new drugs here and on the horizon. Thank goodness for this forum where I can ask questions and get great answers.
Hear, hear, Jim. My wife and I were in emergency medical services for 20+ years. We realized that everything is chance and statistics, including our treatments in the field. We saw "standard of care" change drastically over the course of those two decades in many ways. PCa is no different, and I hold neither my doctors nor their field wholly responsible for my care. I feel that I have many legitimate options, and that is both comforting and unnerving at once - I want to have a say in my choices, but I want to avoid negative outcomes. I have not found one individual on this site to be either definitely wrong or definitely right.... I listen to their voice and opinion, and admire those brave enough to speak and provide information.
As Mark Twain paraphrased: "There are three kinds of lies: lies, damned lies, and statistics." To think that at any point in our treatment our "case" is fully along one best-fit curve or another is just as biased as thinking that we are not. I share GoEZ's view, and yours. - Joe M.
I come here to get information ask some mild questions, and look for some hope. Occasionally I get a chuckle, or read some bad news. But overall I remind myself of what we are going through and do my own research.
Some day we will all meet and talk about our moral existence.
Then we will all turn to watch Nalakrats wrestle the gator while j-o-h-n provides color commentary and TallAllen gives us the stats. It will be glorious!
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