The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

New Board… The Magic is gone

Forums Caregiver Community New Board… The Magic is gone

  • Post
    Jerry from Cape Cod
    Participant

      The once dynamic community has left. Some return in dribs and drabs and go away again.  It sure is pretty, but it doesn't have the sense of "being" that the old board did.

      The chat room is difficult and now hardly ever used, but it sure is pretty.

      It's no longer easy to look at posts and scan replies, but it sure is pretty.

      Someday this may develop a "community" feel but it won't be the one we were used too. 

      I've made a lot of friends here who are now drifting.  There are a few who post now and then.

      The once dynamic community has left. Some return in dribs and drabs and go away again.  It sure is pretty, but it doesn't have the sense of "being" that the old board did.

      The chat room is difficult and now hardly ever used, but it sure is pretty.

      It's no longer easy to look at posts and scan replies, but it sure is pretty.

      Someday this may develop a "community" feel but it won't be the one we were used too. 

      I've made a lot of friends here who are now drifting.  There are a few who post now and then.

      It's just another cookie cutter corporate identity site "sanitized" for better appeal to the large donors. "Look what fabulous things we do for patients and caregivers"

      Just my humble opinion.

       

      Jerry from Cape Cod

    Viewing 5 reply threads
    • Replies
        King
        Participant

          Jerry,

          I really hope that many people will drift back and the newcomers will find us.  The information and people on this Board are too valuable.

          I've heard from a few via email that are having a lot of trouble with registering/logging in, etc.  They are frustrated, of course, but are reaching out for assistance.

           

          Stay Strong
          King

          Stage IV 7/05 Liver mets

          King
          Participant

            Jerry,

            I really hope that many people will drift back and the newcomers will find us.  The information and people on this Board are too valuable.

            I've heard from a few via email that are having a lot of trouble with registering/logging in, etc.  They are frustrated, of course, but are reaching out for assistance.

             

            Stay Strong
            King

            Stage IV 7/05 Liver mets

            LV
            Participant

              All those who cried for censorship and registration should be flocking here in droves, now that everything has been sanitized for our protection. No need to worry now about newbies being scared away by the free-flowing exchanges that went on here – they'll just be turned off by the site itself. This is a great example of what happens when we give up freedom for the illusion of safety.

              I am reminded daily of one of my favorite Kurt Vonnegt short stories: Harrison Bergeron.

                jag
                Participant

                  LV, wasn't Harrison Bergeron a funny simplified version of John Galt? 

                  LV
                  Participant

                    Maybe, John, and it's also way shorter!  I'll take a funny, simplifed version every time. You know I'm lazy.

                    Bonnie Lea
                    Participant

                      But those people are not flocking here are they?  they dig up stuff, disturb our karma and move on!

                      TinaR
                      Participant

                        You might consider that  insisting everyone maintain your idea of karma and standards is part of the problem and is the reason so many people are not inspired to participate or return. It's a good thing you're not in the television programing business or maybe you are…NBC,CBS, by chance?

                        Bonnie Lea
                        Participant

                          sorry buddy, my chain doesnt get yanked by anonymous people.  speak up in true personage or dont speak at all.  the people who whined about "moderator please remove posts' know who they are and it would never be me, as I believe in the freedom of speech. But why bother explaining to an anonymous person such as yourself? one with so much to hide? 

                          either you are way dumb or think you know people?  what is NBC or CBS? TELEVISION STATIONS in the USA? now why would I work there?

                          Compared to people like you I am a sweety!heart

                           

                          LV
                          Participant

                            I don't get this insistence that everyone use a name all the time. So what? I can understand why someone might feel the need to disguise themselves when posting an opinion that doesn't agree with all the hearts and flowers that go on around here. No one wants the wrath of the BLFC to rain down on them. But maybe that's just me.

                            Bonnie Lea
                            Participant

                              well, it is mainly me I guess, as I cannot seem to write to someone without a name.  (didnt even understand the song Horse with No Name)  its easier to respond to LV than to say anonymous.  As for the BLFC kinda neat but its not anyones concern, its just so nice to know that people out there do care, since it is not that way here in real life. cept for my family.

                              Over the years I have made many many friends on MPIP  I am sort of on the quiet side, except when the board seems to be in a ??? I have had so many reach out to me in cyberhand holding throughout all my 'things' and continue to do so, that it is kind of neat thinking you feel I have a fan club hahah.  Thankyou for that

                              Sometimes on a cancer board hearts and flowers are what is needed.  the darkside had its place for sure, as I guess many of you don't feel the need for hearts and flowers and non mind weighing things.  I havent lost anyone to melanoma but did lose my dear brother to prostate cancer, and I guess I shall be the only one (thank goodness) in my family with melanoma so I do not know how it feels to lose a loved one to mel.

                              ah well.  I dont think this is a debating site, there is no right or wrong opinions, support is what is needed.  The knowledge to know when someone is scared, hurt or simply feeling yucky.  Anger yes at having this stupid insane disease and all that it encompasses.  the Main board is not the place for me unless its to do with treatment, or symtoms. 

                               

                              Sorry you feel it is too much heart and flowers.  I happen to love….love and care for one and all (even those warts)  (I have plenty of real ones too it seems though not real warts I guess) hahah.  If my BLFC get to you simply take extra dose of ENO fruit salts they do work wonders on queasy tummys (or so I hear)  or Pepto Bismal  (if that is in the USA)

                               

                              LV
                              Participant

                                Yes, I can't say that I felt my karma was disturbed in any way by the posts. And I don't need the Standards & Practices Police to protect my sensitive sensibilities.

                                Bonnie Lea
                                Participant

                                  one of the points I was trying to make, is to add  the people who cried for 'sanitization'  have not come back in droves! now that the board is the way they wanted complete with moderator? 

                                  Were they indeed what we suspected  "the disturbers from the deep?"  those that just stir up mud? or ones that keep on 'trying to beat that poor dead horse'  (what a dumb saying)  ones that insist on bringing up ancient history, getting everyone who is still here who would remember (or even care) all up in arms, and thus the wars begin?

                                  they never seem to sign their names just that magic  anonymous coverall.  be it  one two or three etc.  We def do not need to lose members over anything even this new pristine santized board.

                                  we can make it our own (the whole membership of MPIP) again….

                                Bonnie Lea
                                Participant

                                  Ah Jerry do cheer up.  All good things come to those who wait.  And hey we are all great at waiting aren't we?  Look at how much patience we patients have?  I too find change hard, but accept it as a personal challenge to try to overcome.  I would hate to try to 'splain to someone how to do anything (never could, but now I would never be able to even think about it)  It is way over and beyond me.

                                  I mourn the loss of old friends posts….sometimes something crops up in my life, when I know someone said it, and now it is gone from old archives.  But new memories are bound to be forged.  I don't like seeing someone state what is obvious that "this has been discussed at length"  of course most everything has, but for me, my memory is not what it used to be, and I cannot find a explanation.  Thank heavens most folks here are ever so patient with everyone.

                                  Do not wander away Jerry from Cape Cod….we must always strive for that bestus steak, or in my case Lob-ister  (speaking of Lobister)  I saw on the news of a yellow one, caught somewhere around you!  know you would not touch it with a ten foot pole though. hahah

                                   

                                  Bonnie Lea

                                    jag
                                    Participant

                                      Bonnie, once again, you make me laugh.  I guess all of that bear fighting while camping tought you how to adapt to change and survive, all the while  enjoying a Lobister an Steak.

                                      Jerry from Cape Cod
                                      Participant

                                        Bonnie…. All I can do is to grin when I hear from you.  Wouldn't eat those bottom dwelling, garbage eating bugs if you paid me.  Yellow, green, blue or red…. yes they are like mutant turtles… who the heck knows what they got into to change the color… could be an old offshore radiation dump… smiley

                                        Jerry from Cape Cod

                                        Jerry from Cape Cod
                                        Participant

                                          Bonnie…. All I can do is to grin when I hear from you.  Wouldn't eat those bottom dwelling, garbage eating bugs if you paid me.  Yellow, green, blue or red…. yes they are like mutant turtles… who the heck knows what they got into to change the color… could be an old offshore radiation dump… smiley

                                          Jerry from Cape Cod

                                          JMart
                                          Participant

                                            Hey Bonnie Lea,

                                             

                                            That lobster was caught in the waters right off my hometown……Newport Rhode Island!!  Thanks for giving it some recognition.  Didn't know that news travelled so far!

                                            By the way, the lobster will live out its life on display at the local fisherman's co-op. 

                                            Janet

                                             

                                             

                                             

                                          dian in spokane
                                          Participant

                                            Jerry, please don't give up hope for this place. I know that the  changes are difficult to adjust to, and that it seems like our community is asunder. But it's the PEOPLE that make this place what it is, not the format. We've lost many people over the years, many of my favorites never came back here after the DS went down. We've had people leave for plenty of reasons, Fountainhead, BW, BG Dencolt, all mostly absent for quite some time now. And I cannot even count how many people here we have lost to death. It's important, I believe, for the long term members to stay around to aide with the the transition. Please try to get used to these new boards, and we'll see if there isn't some way to revive the spirit of this place

                                            hang in there!

                                            Dian

                                              TinaR
                                              Participant

                                                There is only one way – bring back the

                                                 

                                                Bonnie Lea
                                                Participant

                                                  if the darkside helps you guys then why not start one up?  'ahem…move your bowels or get off the pot'  signed

                                                  BONNIE LEA (who used to also enjoy reading the DS and never trashed its need) 

                                                  LV
                                                  Participant

                                                    Maybe, like you, we like(d) it here, and feel it is our home too. Why should we have to move out?

                                                    Bonnie Lea
                                                    Participant

                                                      you are just being contrary…..  Some one upper posted about darkside even showing a logo.  I hope you guys never leave it adds spice.

                                                    jag
                                                    Participant

                                                      Jerry, not to be critical, it's just that well, your icon looks like the melanoma grim reaper.  Might scare people who would normally be your pal.  Maybe Chuck Norris?

                                                        Jerry from Cape Cod
                                                        Participant

                                                          Look closely… It's a monk, notice the dove on the forearm and the heart on the hood.  Some have commented on a Jedi type of relationship, but the sword at battle ready is definately pre Jedi. 

                                                          Anyway,  everyone sees images through their own eyes and experiences.

                                                          Jerry

                                                          jag
                                                          Participant

                                                            really? thats a dove? looks a bit more like a fur seal to me-even if I used my imagination.  Faceless image and hood more Grim/Reaper/pre Darth Vader to me.  I'm telling you man, Chuck Norris, now that is a guy who is the ultimate warrior

                                                      Viewing 5 reply threads

                                                      Tagged: 

                                                      • You must be logged in to reply to this topic.
                                                      About the MRF Patient Forum

                                                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                      The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                      Popular Topics