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Chatroom

Forums General Melanoma Community Chatroom

  • Post
    dian in spokane
    Participant

    hey.. I would normally think of this as an OFF TOPIC topic, but..the chat room is on topic for some and off for others.

    It doesn't get much use anymore, but that's just because of the changes that have gone on with the boards.

    But, I see there are hundreds of visitors right now and '10 members' . If I am right, only members can log into the chat room these days, but still, those who are logged in as members can pop in at any time.

    hey.. I would normally think of this as an OFF TOPIC topic, but..the chat room is on topic for some and off for others.

    It doesn't get much use anymore, but that's just because of the changes that have gone on with the boards.

    But, I see there are hundreds of visitors right now and '10 members' . If I am right, only members can log into the chat room these days, but still, those who are logged in as members can pop in at any time.

    Usually, people don't use the chat room here because the see no one listed. There's a spot on the left side of the board that says something like "who's chatting?" that shows a list of people in the chat room, and if no one is in there, then no one comes in. why bother? BUT.. after many years here (I've been coming since 2003) I know that if one goes into the chat room and hangs out there, then new people see your name and come on in (well.. if they are LOGGED IN!)

    It is a little used resource with the new boards. But that's a shame, because over the years, the chat room has been a WONDERFUL resource for many people. I've spent many hours there, hours when I was stressed out worrying about scan results, or during treatment. I've chatted with people who were on their computers in their hospital rooms! And I have talked to others from my hospital bed.

    It can be very rewarding, being there to talk to someone who is new and scared, and it can be very comforting to chat with others who know how you feel on those nights when you are just …obsessing and worrying.

    I'd like to see people using it more, so that's why I am bringing it up on the main board.

    Over the years, there have been different people who just..stuck with it, and hung out in that room, even if they were all alone, for hours at a time. When I first came it was Lynn from Oz..and Charlie and Barth. But many people have done it over the years. Sometimes, there are many of us in there horsing around, and sometimes it's just jokes and celebrity gossip, and sometimes it's someone who is having to figure out how to say goodbye to their kids. But..there's always been someone who did it for weeks at a time. JerryFromFauq was our last guy to hang out there for hours at a time, before his horrible horse accident. And a year, it was Mykka, and before that Barth. Lots of times, these guys just forgot to log off! and you'd go in to talk and they wouldn't even be 'present', but their ghosts would bring people in, and others would come.

    I used to do it. Just hang out there for hours while I watched tv or did other things in the evening, but now I travel too much. So hey..you regulars..come chat. Just, log in, go to the chat room, then, if you are alone, minimize that window and open another to read the board. Stay logged on while you read the boards. If no one comes in by the time you finish, then just..check on out. It helps for newcomers to see someone's name in that chat window.

    My public service topic of the day.

     

    dian

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  • Replies
      King
      Participant

      Great post, Dian.  And if I wasn't so tired, I would go in and join you right now.  I really hope to Chat more.  The ChatRoom was where I really got my support and information in the early days.  And, yes, it could go from very silly/fun topics to very serious in a second.  I think that's where we first met…

      Great PSA

       

      Stay Strong

      Kathie

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      King
      Participant

      Great post, Dian.  And if I wasn't so tired, I would go in and join you right now.  I really hope to Chat more.  The ChatRoom was where I really got my support and information in the early days.  And, yes, it could go from very silly/fun topics to very serious in a second.  I think that's where we first met…

      Great PSA

       

      Stay Strong

      Kathie

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        dian in spokane
        Participant

        hey! we had a nice turnout last night. DonW mentioned you, wondering if you were going to come in, so he must have seen your post while we were chatting. It was a good time, but it was all the old regulars (which Ioved) but not a single newcomer. Still, I think it helps to have a name in there in case someone new is browsing and sees someone in there

        So I think I'll try it again tonight. I have a tiny bit of  online shopping to do.

        dian

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        dian in spokane
        Participant

        hey! we had a nice turnout last night. DonW mentioned you, wondering if you were going to come in, so he must have seen your post while we were chatting. It was a good time, but it was all the old regulars (which Ioved) but not a single newcomer. Still, I think it helps to have a name in there in case someone new is browsing and sees someone in there

        So I think I'll try it again tonight. I have a tiny bit of  online shopping to do.

        dian

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      Charlie S
      Participant

      Excellent post Dian, and as you know, I have been extremely critical of the "path forward" of the MRF in regards to MPIP.

      In that regard, I would like to offer something constructive and hopefully instructive, informative  and hopefully introspective for the MRF staff and Board of Directors to consider……and supportive of your post.

      I've chatted with a LOT of people here over the years and it stands out that many were scared, terrified, felt so all alone, were pleading for a friendly ear, almost like a child who had lost their mother and who felt lost and alone.

      Chat saved them many a time, because someone was available to talk with instantly, all they had to do was ask and share.

      In real life support groups I have attended and still do attend,, it is a walk in kind of thing.  You don't have to fill out any forms,make reservations, tell your name, come up with a code name or anything………just show up and share.  That is real life and I'm unsure if the MRF has lost their way on this point of immediate need, and how it fosters discourse……………..or stifles it.

      I totally get the registration for posting,(even though it is cumbersome and not user friendly) but I soooooooooo do not get that requirement just to chat. 

      I personally have met in person Mary Mendoza who is the Community Enhancement person with the MRF.  Though a delightful person, Mary made it  very clear to me that she does NOT like being a person to person individual on a podium or doing face time with patients, , but rather likes to work behind the scenes to facilitate patient interaction via other means other than face to face, and she does a good job of doing that.. 

      Mary was even hesitant to have her picture taken with me(okay, in fairness, I can understand why someone would not want to be seen in public with me !); but she was clear and believable in her convictions about Melanoma.   It's just not the cut of her jib to be a poster girl, but she DOES make an impressive impact and touches many; she just does it in a quiet and private way.

      To emulate her impact, chatters should be afforded the same avenue.

      No registration required to chat, just sign in with whatever name you like and chat…………..period.  Yeah, yeah I know about imposters and all that…………….but for crying out loud, there are no absolutes; have a little faith……..after all, isn't that what we are all expected to have and offer to others?

      I've met Tim as well.  He's a real go getter, although I would like to know how many times he has ran or attended a real life cancer support group…………….or for that matter a real death cancer support group.  It is very easy to remove ones self  from the individual in support of the group that you imagine.  I do have to wonder how many melanoma patients there are on K Street.

      Now, let's get down to Shelby Moneer, the MRF Health Educator.  Where is the education?  How does creating boundaries to sharing on-line patient experience via chat support enhance that?

      Anyway, all of this insulation, adulation, promotion, all the while further isolating the melanoma patient from a live, instant via chat experience during a catastrophic experience is mis guided .

      It is just that instant sign on and instant sharing of fears/feelings that made this place what it was………unfortunately, not what it is.

       

      Charlie S

       

       

       

       

       

       

       

       

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      Charlie S
      Participant

      Excellent post Dian, and as you know, I have been extremely critical of the "path forward" of the MRF in regards to MPIP.

      In that regard, I would like to offer something constructive and hopefully instructive, informative  and hopefully introspective for the MRF staff and Board of Directors to consider……and supportive of your post.

      I've chatted with a LOT of people here over the years and it stands out that many were scared, terrified, felt so all alone, were pleading for a friendly ear, almost like a child who had lost their mother and who felt lost and alone.

      Chat saved them many a time, because someone was available to talk with instantly, all they had to do was ask and share.

      In real life support groups I have attended and still do attend,, it is a walk in kind of thing.  You don't have to fill out any forms,make reservations, tell your name, come up with a code name or anything………just show up and share.  That is real life and I'm unsure if the MRF has lost their way on this point of immediate need, and how it fosters discourse……………..or stifles it.

      I totally get the registration for posting,(even though it is cumbersome and not user friendly) but I soooooooooo do not get that requirement just to chat. 

      I personally have met in person Mary Mendoza who is the Community Enhancement person with the MRF.  Though a delightful person, Mary made it  very clear to me that she does NOT like being a person to person individual on a podium or doing face time with patients, , but rather likes to work behind the scenes to facilitate patient interaction via other means other than face to face, and she does a good job of doing that.. 

      Mary was even hesitant to have her picture taken with me(okay, in fairness, I can understand why someone would not want to be seen in public with me !); but she was clear and believable in her convictions about Melanoma.   It's just not the cut of her jib to be a poster girl, but she DOES make an impressive impact and touches many; she just does it in a quiet and private way.

      To emulate her impact, chatters should be afforded the same avenue.

      No registration required to chat, just sign in with whatever name you like and chat…………..period.  Yeah, yeah I know about imposters and all that…………….but for crying out loud, there are no absolutes; have a little faith……..after all, isn't that what we are all expected to have and offer to others?

      I've met Tim as well.  He's a real go getter, although I would like to know how many times he has ran or attended a real life cancer support group…………….or for that matter a real death cancer support group.  It is very easy to remove ones self  from the individual in support of the group that you imagine.  I do have to wonder how many melanoma patients there are on K Street.

      Now, let's get down to Shelby Moneer, the MRF Health Educator.  Where is the education?  How does creating boundaries to sharing on-line patient experience via chat support enhance that?

      Anyway, all of this insulation, adulation, promotion, all the while further isolating the melanoma patient from a live, instant via chat experience during a catastrophic experience is mis guided .

      It is just that instant sign on and instant sharing of fears/feelings that made this place what it was………unfortunately, not what it is.

       

      Charlie S

       

       

       

       

       

       

       

       

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        dian in spokane
        Participant

        Charlie,

        Thanks for your thoughtful response. I, of course, agree with you that no one should have to register to enter the chat room. The need for immediate help is too strong to have to wade through the registration process.  I don't think the registration process is that tough, but when one has just been diagnosed, sometimes those extra steps are just too much. And heck, if you are using one of these newfangled notebooks with a track pad, you might just get your registration done and have the whole thing disappear on you before you hit 'submit' It's all too much to bother with when you are scared and/or crying.

        Still.. I can't do anything about the registration requirement. And, as always, I'm doubtful that anyone at the MRF is reading this (maybe they are, but I am universally surprised when someone does answer!) So..you know my nature. I can't fix that, but maybe I CAN do something about the fact that the room is always empty.

        It's up to us members to make that room grow. The MRF staff asked a few months ago what they could do to make it better. They suggested hosted chats with relevant topics and the regular chatters pretty much put the Kibosh on that, all of us saying 'that's not what we need' I feel like they put most of the hours of their days into melanoma research, so I can understand why they wouldn't want to spend their nights hanging out in the chat room. That's up to us.

        I'm glad to see a post from you. I was just thinking about you yesterday (but failed to see this post!) Did you happen to notice that your 'stage IV roll call" post has had over 2800 views??

        dian

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        dian in spokane
        Participant

        Charlie,

        Thanks for your thoughtful response. I, of course, agree with you that no one should have to register to enter the chat room. The need for immediate help is too strong to have to wade through the registration process.  I don't think the registration process is that tough, but when one has just been diagnosed, sometimes those extra steps are just too much. And heck, if you are using one of these newfangled notebooks with a track pad, you might just get your registration done and have the whole thing disappear on you before you hit 'submit' It's all too much to bother with when you are scared and/or crying.

        Still.. I can't do anything about the registration requirement. And, as always, I'm doubtful that anyone at the MRF is reading this (maybe they are, but I am universally surprised when someone does answer!) So..you know my nature. I can't fix that, but maybe I CAN do something about the fact that the room is always empty.

        It's up to us members to make that room grow. The MRF staff asked a few months ago what they could do to make it better. They suggested hosted chats with relevant topics and the regular chatters pretty much put the Kibosh on that, all of us saying 'that's not what we need' I feel like they put most of the hours of their days into melanoma research, so I can understand why they wouldn't want to spend their nights hanging out in the chat room. That's up to us.

        I'm glad to see a post from you. I was just thinking about you yesterday (but failed to see this post!) Did you happen to notice that your 'stage IV roll call" post has had over 2800 views??

        dian

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      JoanR
      Participant

      hi Dian, my thoughts exactly, I really really miss all my chat friends, and when I come on line and don't see anyone there, I just read the postings and am gone. I would imagine by now I will have to get a new password and that will take weeks (for me)..so Best Christmas wishes to all my dear friends, and please keep Pat M in your thoughts.  Cheers Joan

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      JoanR
      Participant

      hi Dian, my thoughts exactly, I really really miss all my chat friends, and when I come on line and don't see anyone there, I just read the postings and am gone. I would imagine by now I will have to get a new password and that will take weeks (for me)..so Best Christmas wishes to all my dear friends, and please keep Pat M in your thoughts.  Cheers Joan

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      Jan in OC
      Participant

      I read Dian's post and went to the chat room the other day for the first time.  Thanks to the people there who let me vent!!!!  One of my complaints was that i couldn't leave the room and come back to the board without logging off altogether, then logging back on…what a pain.  And I have a hard time remembering all of my stupid passwords…need a spreadsheet just to keep track of them (everyone has different criteria). And yes, Dian, I looked for the little X, unless it was jumping up and down saying "click here to leave" I couldn't find it.  Can they put a little button in there for us idiots???? LOL

      Jan

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        all Come In
        Participant

        I don't think "they" care.

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        Bonnie Lea
        Participant

        I find that when I go to chat to myself most of the time I cannot keep tabs on the boards.  If I skip out to the boards, I have to re log into the chat room.  I cannot seem to minimize any thing anymore, perhaps its me,  ah well.  I will always have this place and those I have "met" in my heart always.  I quote, I use the people here their words and wisdoms, and some even made up wisdoms to tell my doctors that so and so says this is what they did, why cant we….  the doctors all say   well, lets try  so we do  it either will work or it won;t.  hahah

         

        I miss the times of chats the times of good fun gabbles and babbles.  on Off Topic and Main Board strong supoort.  It will be back one day in one form or another. 

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        Bonnie Lea
        Participant

        I find that when I go to chat to myself most of the time I cannot keep tabs on the boards.  If I skip out to the boards, I have to re log into the chat room.  I cannot seem to minimize any thing anymore, perhaps its me,  ah well.  I will always have this place and those I have "met" in my heart always.  I quote, I use the people here their words and wisdoms, and some even made up wisdoms to tell my doctors that so and so says this is what they did, why cant we….  the doctors all say   well, lets try  so we do  it either will work or it won;t.  hahah

         

        I miss the times of chats the times of good fun gabbles and babbles.  on Off Topic and Main Board strong supoort.  It will be back one day in one form or another. 

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        Bonnie Lea
        Participant

        I find that when I go to chat to myself most of the time I cannot keep tabs on the boards.  If I skip out to the boards, I have to re log into the chat room.  I cannot seem to minimize any thing anymore, perhaps its me,  ah well.  I will always have this place and those I have "met" in my heart always.  I quote, I use the people here their words and wisdoms, and some even made up wisdoms to tell my doctors that so and so says this is what they did, why cant we….  the doctors all say   well, lets try  so we do  it either will work or it won;t.  hahah

         

        I miss the times of chats the times of good fun gabbles and babbles.  on Off Topic and Main Board strong supoort.  It will be back one day in one form or another. 

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        Bonnie Lea
        Participant

        I find that when I go to chat to myself most of the time I cannot keep tabs on the boards.  If I skip out to the boards, I have to re log into the chat room.  I cannot seem to minimize any thing anymore, perhaps its me,  ah well.  I will always have this place and those I have "met" in my heart always.  I quote, I use the people here their words and wisdoms, and some even made up wisdoms to tell my doctors that so and so says this is what they did, why cant we….  the doctors all say   well, lets try  so we do  it either will work or it won;t.  hahah

         

        I miss the times of chats the times of good fun gabbles and babbles.  on Off Topic and Main Board strong supoort.  It will be back one day in one form or another. 

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        all Come In
        Participant

        I don't think "they" care.

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        Janner
        Participant

        As the chat room is opening up, there is a link that says "Open in Popup".  If you can get the chatroom in a popup window (my default preference), then you can just click on the BB to see what's going on there.  If the chatroom isn't in a popup window, then once you try to go elsewhere, you exit the chatroom.  I, personally think they shouldn't use the integrated version at all and have everything in the popup.  It just works better with "multi-tasking" people.

        Janner

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        dian in spokane
        Participant

        I never use the popout :) But… I guess I don't understand the problem. I just minimize the window, like I would any time I am multitasking. I am using IE, but even on Firefox it's the same. I might have a window open with the ot board, another with the main board another with a news page, another with facebook. They can all be minimized, and I just go from one to the other.  Can't everyone have 5 or 6 windows open at the same time??

        The only time I accidentally leave chat is when I forget to freeze my trackpad.. I I have my trackpad on, I am constantly losing stuff by accident (whole posts) or exiting windows I don't want to. I have my mouse disabled right NOW, because if I don't, I'll finish typing a whole post and my thumb will brush up against the mouse and take me back a page, and all my text will disappear..going forward again doesn't recover it. 

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        dian in spokane
        Participant

        I never use the popout :) But… I guess I don't understand the problem. I just minimize the window, like I would any time I am multitasking. I am using IE, but even on Firefox it's the same. I might have a window open with the ot board, another with the main board another with a news page, another with facebook. They can all be minimized, and I just go from one to the other.  Can't everyone have 5 or 6 windows open at the same time??

        The only time I accidentally leave chat is when I forget to freeze my trackpad.. I I have my trackpad on, I am constantly losing stuff by accident (whole posts) or exiting windows I don't want to. I have my mouse disabled right NOW, because if I don't, I'll finish typing a whole post and my thumb will brush up against the mouse and take me back a page, and all my text will disappear..going forward again doesn't recover it. 

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        Janner
        Participant

        I never use multiple windows.  That's why they invented tabs!  I do have multiple tabs open at all times.  So I just jump from one tab to the next.  However, I find this method a little cumbersome with the chat window.  I lose my place scrolling.  The popup is easier for me to keep track of.  I can put it in front of any other window.   For people not used to multi-tasking, I think the popup is easy.  Then they can navigate and look at what they want in the browser (like the BB) while still keeping the chat room active.

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        Janner
        Participant

        I never use multiple windows.  That's why they invented tabs!  I do have multiple tabs open at all times.  So I just jump from one tab to the next.  However, I find this method a little cumbersome with the chat window.  I lose my place scrolling.  The popup is easier for me to keep track of.  I can put it in front of any other window.   For people not used to multi-tasking, I think the popup is easy.  Then they can navigate and look at what they want in the browser (like the BB) while still keeping the chat room active.

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        Janner
        Participant

        As the chat room is opening up, there is a link that says "Open in Popup".  If you can get the chatroom in a popup window (my default preference), then you can just click on the BB to see what's going on there.  If the chatroom isn't in a popup window, then once you try to go elsewhere, you exit the chatroom.  I, personally think they shouldn't use the integrated version at all and have everything in the popup.  It just works better with "multi-tasking" people.

        Janner

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      Jan in OC
      Participant

      I read Dian's post and went to the chat room the other day for the first time.  Thanks to the people there who let me vent!!!!  One of my complaints was that i couldn't leave the room and come back to the board without logging off altogether, then logging back on…what a pain.  And I have a hard time remembering all of my stupid passwords…need a spreadsheet just to keep track of them (everyone has different criteria). And yes, Dian, I looked for the little X, unless it was jumping up and down saying "click here to leave" I couldn't find it.  Can they put a little button in there for us idiots???? LOL

      Jan

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