Disappointed About Being Shooed Off the Stage IV Boards

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    Kim,

    Thank you for your kind words. I had a spinal tap years ago in a third world country. The memory is still vivid. I know yours will be better and , hopefully, the results will be too.

    Caryn

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  • patti13
    patti13 Member Posts: 89
    edited March 2013

    after much thinking about this thread - have blocked st4 forum - makes me sad but i feel like i've invaded even just reading - to all st4 - my thoughts are still with you.  white light coming your way.

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  • ali68
    ali68 Member Posts: 1,383
    edited March 2013

    This is so sad I know a few stage 4 girls and most are happy to talk to lower stages. Just read another stage 4 lady has passed away and it makes me think. Live, love and be happy!!!!

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2013

    Yes, I have blocked too - at least for now. It just seems that there are some who prefer to remain private and I don't want to feel tempted to post. Best to say "If you want me, you know where to find me" and leave it at that.

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  • placid44
    placid44 Member Posts: 497
    edited March 2013

    All - There are lots of great posts from Stage 4s on other forums. Just recently I've seen advice from a stage IV to a DCIS sister about gummy implants, to a 1a about recovery on the surgery forum, to other lower stages about likelihood of metastasis and about reconstruction issues. Lots of opportunities to interact about the things we have in common! (chemos, radiation, other treatments, etc.).



    I spend the most time on the TNBC and "stage 2b with positive nodes" threads as well as Chemo and Radiation. I start radiation next week.



    Have a great weekend, everyone!

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  • patti13
    patti13 Member Posts: 89
    edited March 2013

    placid - yep - that goes with if you want me you know where to find me.  I am sure that there are many 4's that want to help lesser stages.  I can't group 'all' for the 'some'.  Best of luck with rads.... it's a doable.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2013

    Many of the Stage IV women participate in other forums, offer support all over the board, and socialize with everyone else in the social threads. Of course there are some who prefer to stay on the Stage IV forum.  However through this whole discussion I didn't hear anyone who is Stage IV saying that Stage IVs want to wall themselves off completely from everyone else.  They simply asked for 1 forum where posting is restricted to Stage IVs only. There are over 70 forums on this board (yes, way too many, in my opinion) and there are even 4 other forums that deal with Stage IV issues and concerns. How this simple, completely understandable request and the compassionate agreement by BC.org could have turned into such a big issue is truly beyond me.

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  • patti13
    patti13 Member Posts: 89
    edited March 2013

     I have a place in my heart for family and caregivers...i guess it's the way canadagirl was treated - or made to feel.  She's gone.  I'm not making a 'big deal' - but I have to say I don't feel welcomed even reading a post from 4 only at this point - and that's fine!  I guess I have always been respectful of stage 4 - but truly - didn't give staging much thought unless someone was close to my diagnoses.  Goes for religion...region....all of that.  It is a simple request - you are right - and I will honor that.

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited March 2013

    My impression, it turned into an issue for those who didnt take the time to go to the original thread that Athena provided a link to. I want to believe that empathy and understanding would have come from knowing the broader reasons that we discussed. Athena tried more than once to put it into words but time and again that was greeted with a simplistic dismissal and more angry retorts. It seems the angry response generated more angry responses from those who seemed only to focus on a belief that this issue was about exclusion and not our request for understanding of how certain emotional titles and entreaties from family members were seeking solace and support for their pain on a forum specifically for those hanging on by a thread to each other for support while reserving our energy for our own family members needs in our hearts.



    But it is what it is. Another circumstance where those not faced with their own impending mortality jumped to conclusions about what it's like. May you never find out.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    Beesie,

    As usual, you are spot on. I don't presume to speak for others but I believe that is what many of us want. Simple, as you stated.There was a time when I was not stage IV. I saw the little note in the forum header and never dreamed of not honoring that request. It certainly did not diminish my experience on bco. How I wish I was still in a position not to post in the stage IV forum or pay attention to stage. When you're stage IV, that luxury is gone.



    Caryn

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  • kira1234
    kira1234 Member Posts: 3,091
    edited March 2013

    Beesie, as always You are so right! I've been on this sight for 3 years, and agree just use respect!

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2013

    Nobody is "right'' or "spot on" ( no disrespect meant to Beesie). We all just have our points of view and the are equally valid. It's best when the scolding tone is cut and we are all able to speak as the equals we are. Let's respect everyone's position. The plight of stage IV sisters goes without saying. The plight of Canadagirl and her mother remains unaccounted for. And everyone making their decision on where and how to visit these forums  also deserves respect.

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  • Stormynyte
    Stormynyte Member Posts: 650
    edited March 2013

    I agree that that cancadagirl shouldn't have received a PM. In the original thread that started all this it was said many times that we needed to be sure not to hurt feelings or make anyone feel unwelcome and that PM's or moving posts would be left to the mods.

    I don't think anyone said they wanted an "exclusive" thread either. This has been blown way out of proportion.

    I believe all that was actually asked for was a place for family members to post and find support other than in the stage iv forums.

    It is horrible that such a simple request has turned into this and made so many feel excluded and hurt. That was never the intention and I now feel like crap for adding to the vote to have it done.

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2013

    Please don't feel like crap, stormynyte. There is nothing wrong with having your wishes respected. The new forum is now here, and people are using it, which means it is serving a purpose. In fact, it was rather a stroke of genius.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    I don't feel like crap about having been part of that decision but I do agree that it been blown way out of proportion.
    Let me amend my comment to Beesie: In my opinion, and mine alone, your post was spot on and reflects exactly how I feel about the issue.

    I will happily trade away my (dubious) privilege to post in stage IV in exchange for becoming a lower stage and never posting there again :)

    Caryn

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2013

    I agree that canadagirl was treated poorly. Many of us who've posted here have stated that we are concerned with how she was treated. In fact, within 25 hours of her original post, and on the first page of responses in this thread, the Moderators spoke out and clearly explained to canadagirl that she should not have been shooed away from the Stage IV  forum. The Moderators then changed the description of the Stage IV forum so that it clearly includes canadagirl and others in her position, i.e. those who are posting on behalf of Stage IV patients who don't have the ability to post.

    So as I see it, canadagirl's concern was well and properly addressed.  Hopefully she decides to come back but that decision is up to her.  This thread is now on page 7.  The issue has gone well beyond what happened to canadagirl and frankly, that's what I don't understand.  How did this become such a hot button issue for all these other people, people who are not Stage IV and not in canadagirl's position of representing someone who is Stage IV?  That is the part that is truly beyond me.

    From the posts that came after my most recent post, I thought I should clarify this in case anyone thought that I didn't understand or appreciate canadagirl's original concern. 

    Caryn, thank you! I had assumed that you and kira were speaking only for yourselves! Smile

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  • kira1234
    kira1234 Member Posts: 3,091
    edited March 2013

    Beesie, yes only speaking for myself I greatly respect your opinion!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    I, too, speaking for myself, have found all of Bessie's posts here to be exactly my opinion, as well.



    It saddens me that canadagirl left before a resolution was created. I hope she returns on her mother's behalf.

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2013

    Ok - amidst all the disagreement, maybe all of us on this thread can share some "awwweee" moments (even though we eah have our version of what that is). Here are some of mine, posted elsewhere today:

    (this one's just for us here):

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  • floogendad
    floogendad Member Posts: 41
    edited March 2013

    I have read through this whole post as I am the spouse of a wonderful woman who has progressed from Stage 1 to 3 to 4 (for the last year)..  I have posted in the Stage 4 forum asking for similar experiences in order to balance the experience of those who have gone through similar treatments, etc.  So I can improve the care I give my wife.  I received some good responses but also more than a few PM's stating I had no business there as I was not Stage 4.  After reading through all the posts in this thread alone there is no right answer.  But I will say this and it is no way meant as disrespect to anyone diagnoses with BC at any stage.  True caregivers may not understand what you are going through.  However we see it we hekp you deal with it , and in regard to Stage 4 we keep everything else running smoothly so you, as a patient, can focus on treatment and family as those are the two most important things (at least my wife and I choose to deal with things this way).  Yes we know that a Stage 4 diagnosis at some point will not have the happy ending that most people wish to have but at the same time as a caregiver w edo our best to keep spirits up.  There is no call for any deragotory comments about anyone, but much like I was told in a PM that I shouldnt post in Stage 4 foums because I dont understnad what it is like to be Stage 4 then I would like to turn it back to those individuals and say then don't post in a Stage 4 caregivers forum because you do not understand what it is we as caregivers have to face day in and day out to help you focus on going as far as possible.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    I am sorry to hear about your wife. Other than condolences or good wishes, I don't post in any forum in which I don't have personal experience. I would no more speculate on what it feels like to be a caregiver than I would on DIEP flap surgery. So, you are absolutely right, I have no idea what it's like to be a caregiver. As to pm's, I can imagine (not know) that it must be uncomfortable to get one. I did send someone a pm once but that's because she posted a cheery holiday greeting in someone's angel thread. She thanked me and deleted her post.

    Caryn

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    Exbrnxgrl..sorry if you took what I said the wrong way.... I can see how it would have come off like that.

    Bessie...I think the WORLD of you....I tried to express my reasons for disagreement as well as I could. I think they are worthy of some consideration...but I'm over it.

    The mods have made their call....it's time to respect it and move on.

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  • patti13
    patti13 Member Posts: 89
    edited March 2013

    floogendad...i hear your voice.

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  • patti13
    patti13 Member Posts: 89
    edited March 2013

    i once believed this was a good disussion...i now believe is all stage bullshit...DONE!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    Cookiegal,

    Thanks for clarifying that. I see you edited out the part about no condolences, no (paraphrased) congrats. That's ok. We all know where we're headed and what a tough road it is.

    Caryn

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    I recall Coolbreeze being treated rather poorly by her Stage IV sisters (nasty PM's) just because she had surgery and was NED at the time and because she is a woman who says what she thinks. It was like they thought she didn't belong there anymore.

    I feel very sorry for canadagirl - her posts were respectful, so I don't see why they could have upset anyone.

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  • tortoise
    tortoise Member Posts: 71
    edited March 2013

    This all makes me very sad, especially when it gets a bit too edgy.  For what it's worth, I don't mind what stage anyone is who posts in Stage IV (though sometimes I worry that going in there will upset them). 

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  • CelineFlower
    CelineFlower Member Posts: 875
    edited March 2013

    stage 4...are not the only ones dying

    its outrageous how callouse and contrived at the same time..this has all been,

    I should have realized that this place was no better then anywhere else on the internet.

    There are some gems amongst the stones...and i am grateful for that.

    During the most horrible time of life this forum offered info and support,.... stupid me saw it as caring

    The mods are not fully honest with the members... the members can be judgemental and indifferent... 

    Out of the 100k + members ..only a handfull post regularly... mods, ever ask yourselves why?

    Who pays for this forum? is it run on donations? if so... then the members IMO should have a greater voice.

    I have ALWAYS been respectful and will continue doing so... but i knlow realise that the mods are part o a clic , they have ignored most of my pm's ...typical....shrug

    The so called rules here are based on whim and cohersion... for the most part IMO.

    I am tired of living in a world were people are dismisses and clics rule.... feels like high school.

    Cindy rose... is a stage 4 ..and has opened herself and her experience to all, so that we may learn...and whats in it for her? not feeling alone ...love... respect...honor...sigh. Thank you Cindy ..you have no idea how many people love you ...

    So for me... like i said above , i will continue to be the same as i was, respectful and honoring others... but i will no longer look to the mods for resolution or example...this is truly dissapointing... 

    Perhaps Breast cancer needs a new forum all together....

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited March 2013

    CelineFlower - that's a bit harsh.  What I have learned from this discussion (and I have not chimed in until now) is that we are a very diverse group of women (and men), with differing opinions about this issue (and many other issues).  The Internet is a microcosm of the world at large - it's not that any other breast cancer forum would be any different from this one.  Of course only a handful post regularly - that's the way it is on most internet forums.  Not everyone is comfortable with this forum, with computers or with sharing.  So those who are will post most often.  Simple as that.  Nothing to do with cliques.

    By and large, IMHO, this forum "works" - it provides women who are down on their knees when they first hear the words "You have breast cancer" with a place to go for support, information and camaraderie.  Most people are nice, a very small minority, not so much.  The mods are trying to balance all of these differing personalities to the best of their abilities.

    And who am I or anyone else to judge what women with Stage IV disease want or feel comfortable with?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    Joan,

    I agree! This forum, or any other, is not perfect and due to our diversity we will not always agree. Some will be unhappy and leave, some will look and never post. That's just life on the net but by and large, it works. I personally, post in forums that discuss issues with which I've had personal experience. I've never felt part of a clique, sorority or exclusive club and I sure don't think the mods are. They have the unenviable job of balancing a wide variety of interests and opinions. They will never be able to make every single person completely happy but I think they do quite well.

    Lastly, thank you for understanding the unique position that stage IV women face.

    Caryn

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