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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Comments, Suggestions, Feature Requests

I wrote this as the thread was being frozen.

I don't know why I care so much about this, but I still believe there should be two forums, one open one closed.

I think there should totally be a place where people with MBC can post with no input from anyone else. Ever. Not a word.

BUT, I do not think that discussion of MBC should be limited to people with it, or their caregivers. 

Whether it is research, advocacy, treatment, or how it is portrayed in the media and literature.

Also some people with MBC like interacting with the wider community. (Well at least until now.)

I really don't care if one forum is literally closed or just carries a very stern warning. 

But I do not feel "walling off" discussion of such an important topic is the right direction for the leading internet site on breast cancer.

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  • sunny210
    sunny210 Member Posts: 292
    edited April 2014

    I agree. Over the weekend an earlier stage woman that I "knew" from before responded to a thread I wrote and I was just delighted to hear from her. It's the judgemental, critical posts from people who aren't in our shoes that bother me. And being called an inspiration, but I don't know what you can do about that. But if, as Cookie suggests, we could carve out a little corner for the more sensitive posts that are just for us, it would be great.

    Sandy

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2014

    I totally get what you are both saying. I admit that my feelings are not entirely clear on the issue. For the most part the stage IV forums work well the way they currently are, as most people are respectful about posting if they are not stage IV,or respectful of our feelings if they do post.  From time to time we have flare ups, such as the one we've seen over the last couple of days. It cools down pretty quickly, despite the "heat", and things go back to functioning well. Hence, my mixed feelings.

    Caryn

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2014

    glad I don't seem crazy....

    It makes me sad when people think MBC women believe early stage patients just read about stage 4 to rubberneck and feel better.

    It just seems there are two needs......

    I would think in order to advance MBC awareness and advocacy more interaction is better. We need to hear why you believe (or don't believe) a charity is falling down on the job. It is good to know about new treatments and how hospice and palliative care are working. 

    Basically you don't need to have something to care about it.

    One positive, in the past few years the number of women like exbrnxgrl who are responding well to treatment has increased.

    Also what I read on the forum helps me be a more informed supporter to off-line friends with MBC.

    But if some women feel some posts need to be in a totally safe space that is fine.

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited April 2014

    Cookie, 

    If you want to discuss mbc , there are tons of forums that you can discuss it in, such as the advocacy forum, or the trials forum or any of the other of the many forums.

    There are many stage 4 people who post in a lot of different forums ( rads, chemo,etc)  and if they want to interact with the other stages, they can in these forums.

    It just seems unbelievable to me that people can really be upset because those of us who are stage 4 and terminally ill, would like to have one forum where we can discuss our concerns among ourselves.

    Laurie

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2014

    Lauriesh not upset at all. 

    All for a totally private forum for those who want and need it.

    Just not sure that on the web limiting who can speak about an important topic makes sense, or is productive in a public website.

    But if I am wrong I am wrong.

    I will say no more on this, I think there are two different ways of looking at a web forum, one is that is it a topic for the open exchange of ideas and information, the other is that is a group with it's own dynamic.

    Not saying anyone is wrong,and never my intent to hurt or offend.

    I'm out.

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited April 2014

    Productive for whom? Most stage 4 women think the forum is fine the way it is. It is non stage 4 women who keep pushing for a private forum.  Shouldn't it matter most that the forum meets the needs of stage 4 women?

    Again, no one is saying that you can't discuss the topic of mbc in other forums. But the difference is that while mbc is an interesting "topic" to you, it is our life.

    Laurie

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2014

    Laurie you are entitled to feel that way. 

    The last thing I want is to upset anyone.

    I have been here for several years and heard a lot of women with MBC say they feel forgotten and underserved and invisible to the wider pinker BC community.

     To me, walling off that discussion seems like it perpetuates those problems, but if I am wrong I am wrong.

    It seems like perhaps I am doing more harm than good.

    But I respect that you feel differently.

    I will leave it at that.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2014

    I don't understand why anyone who is bothered by the stage IV forums can't just block them themselves and leave everyone else alone. I have Stage IV friends from the other threads that I care deeply about & what is happening to them. I read the threads to know how they are doing. I just don't post on those threads.

    Chickadee was my friend and I was heartbroken when she died. 

    We are once again discussing changing the whole board because a handful of people got their feeling hurt or got mad.

    I get mad at people here on a fairly regular basis. My problem, not theirs. I get over it. So what.

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