Stage IV forum

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leggo
leggo Member Posts: 3,293
edited June 2014 in Comments, Suggestions, Feature Requests
Stage IV forum
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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    For all that get pissed every time someone who is not Stage IV posts on their forum, why not join the secret, by invitation only board that a member started last time this happened. I'm sure most of the Stage IV's know her....at least I think so, because she sure seemed to have a lot of overwhelming support. I don't have the name of the site anymore, but I'm sure if you all put your heads together, someone will know. All those like-minded can then have their own board. Easy peasy, problem solved.

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    ....and here come the pm's. No I will not answer and I will not provide "her" name because I'm not about to give her any attention....and yes I have mets and I use " dots" and no, I don't display my diagnosis, it's my business to share with those I wish to... and if it's that much of a problem answering non-metster's questions why don't you just ignore it?. And no, I don't post my condolences because I don't think it's necessary for everyone to see that I have, I prefer to do it privately if they are indeed important to me. And yes, sometimes I edit my posts for spelling without saying I did...big deal. Think that about covers it. Good grief, some of you guys are really a piece of work.

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    ....and it would be much appreciated if before you rag on me you'd learn to read. There is more than one Grace, Gracie, whatever on this board. Don't give me sh*t for something someone else posted. It just reminds me how you're too narrow-minded to READ facts before pm'ing.

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited October 2009

    Moderators,

    There has never been a 'you are not welcome if you are not a stage IV', I apologize for the mis information out there.

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    Fitztwins, with all due respect,(and I really mean that because your posts are the most joy I get out of the forum),  your statement is incorrect. Two ladies I am in constant contact with regarding my bone mets (one with, one without) have been told this first hand, via pm, in language I can not repeat that they are not welcome. They were also told via the board, only in a nicer fashion so nobody would know how nasty they really are. Too bad I can't prove it to you though, because that whole thread from last year disappeared. So it seems it doesn't even matter if it's a metster or not.  Athena, your idea sounds like a good one, but I know someone who's just been diagnosed with cancer is not going to have their total wits about them and are not going to bother reading what forum they're posting in or about the forum. I know I didn't....and I think it's unfair to expect them to. Who's in their right mind when they hear those words from their doctor?

    Edited for clarity.

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  • shokk
    shokk Member Posts: 1,763
    edited October 2009

    Gracie your style of posting and words seem so familiar............it seems that you have been around for a lot longer then April 09........you must have gone by a different screen name.......which is fine.......but if she is irritating you.......why don't you just put her on ignore.........then you don't have to read anything she post and you can go about your business.........just a thought........Shokk

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2009

    Puhleez, Fitztwins was just fine.  She politely told Brookside there was a more appropriate forum for her question.  Period.  End of story.

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited October 2009

    Hey Shokk .. how's things?

    Frankly .. I get nervous posting anywhere on BCO anymore.  I'm not a newbie and I'm still early stage .. so, where do I go?  Most of my friends have moved on from this site .. and I sure as heck won't post to old friends in the stage IV forum anymore, but I do read there to see how they are.

    I don't know what happened, but somewhere along the way, BCO jumped the shark.  I used to be on the Wagon Circle thread .. since that thread started we have lost Mena, Karilynn, DebC, lv2cmp, Cy and many more.  In the old days, it was okay to post on the stage IV thread to your friends.  I posted on one of the threads the other day .. by accident.  And the only other post was on Amy's thread. 

    Like I told Gracie1 .. I miss the old days when we could be friends all across the site.

    Bren   

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited October 2009

    (((( Athena-Lioness ))))

    Bren

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  • stateofgrace33
    stateofgrace33 Member Posts: 59
    edited October 2009

    My suggestion to anyone on breastcancer.org is that we all have way too much life and death issues to deal with - let's not tell each other how to be, how to take treatments, how to feel, make judgments, blame, feel left out, etc.  The disease itself is cruel enough.

     I think most people come to these sites to feel better and feel safe.

    I'm a Stage IV mets person who's come close to death 3 times now and I have to say it's been my experience that most people who aren't Stage IV or don't have had extensive experience with others at Stage IV can inadvertently give advice that is not really appropriate - it doesn't preclude that some people are well meaning.  But I have had to tell well-meaning people in my life (even close friends) to back off because on a very profound level, it's not respectful to assume to give unsoliciated advice that doesn't really apply.  It would do us all well to ask permission to comment on one's diseases and conditions, whether physical or mental.

    If anyone wants to come on the Stage IV forum just to discount or argue about what we all might be doing, consider looking at why one would do such a thing - why does anyone need to attack another?  

    much love to everyone (without exception) 

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  • KLynn
    KLynn Member Posts: 1,407
    edited October 2009

    Shame on you........

    Shame on you.......

    Shame on the trouble makers.....

    You are as UGLY as the cancer running through ALL of us...Shame on you...

    Go ahead ....bash me too..I can take it..after all I'm stage 4 and I must one of the "beotches"...

    I hope when you are here in the stage 4 forum..the trouble makers don't follow you...

    Your life may be shorter than you thought too.....

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited October 2009

    Okey dokey .. I am done with BCO, again. 

    Geez Klynn .. I don't know what or who you're talking about.  I don't do shame anymore. 

    But when I do hit stage IV, I'll find another site. 

    Bren

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  • pitanga
    pitanga Member Posts: 596
    edited October 2009

    KLynn,

    I can hear that you are upset and hurt. I´m sorry about that. But I think what we really need at this point is to get past the issue. It came up, it ruffled some feathers, unkind remarks were made on both sides, followed by more constructive and measured comments and perhaps we have elarned something from it. Lets try to keep the more hamonious energy going and leave the anger behind, please.

    Lisa 

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  • konakat
    konakat Member Posts: 6,085
    edited October 2009

    That was a bit extreme Lynn.  Brin, please don't ever leave us. 

    I hope no one leaves.  We all get "feisty", it's normal.  We're living, breathing, hot-blooded women.  We have emotions, opinions, disagreements, camaraderie.  It eventually simmers down.  I'd be bored to tears if we were lovey dovey all the time.

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  • KellyC
    KellyC Member Posts: 834
    edited October 2009

    .........For all that get pissed every time someone who is not Stage IV posts on their forum, why not join the secret, by invitation only board that a member started last time this happened. I'm sure most of the Stage IV's know her....at least I think so, because she sure seemed to have a lot of overwhelming support......

     and here come the pm's. No I will not answer and I will not provide "her" name because I'm not about to give her any attention....

     Hmm....I'm going to assume this was about me? And if it's not? I would still feel the same way about your very ANGRY little postings up there!  My goodness, such ANGER!  lol

    Yup, I did have a private Stage IV only forum, haven't been to it in ages, don't even recall the name of the board, stopped being active on there after we lost more than a few of the members.  I would GLADLY start another one though......so if anyone is interested? You all just let me know. ;-)

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  • konakat
    konakat Member Posts: 6,085
    edited October 2009

    Maybe just a better description of the Stage IV forum -- a safe haven for Stage IV women to discuss their issues.  And in the description direct the "I was wondering if..." to the Worried about Mets/Recurrence forum. 

    I've missed seeing you around Kelly -- I've always loved your signature line!!

    Edit to add:  And so what if someone / a group of women wanted to get together and create their own private board?  Why not?

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  • konakat
    konakat Member Posts: 6,085
    edited October 2009

    Hi Athena -- I'm very much a night owl!  Rarely do I get to sleep before 3AM.  Even later if I'm into a good book -- just one more chapter, just one more...

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  • KLynn
    KLynn Member Posts: 1,407
    edited October 2009

    Shame on this site for letting this go on....I'm out of here too....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

       I have to disagree with Athena Lioness's  one statement that no one has it  worse than someone who is Stage lV  and that no one can dispute this.   I am Stage lV and have been Stage lV for ll years and think I have had it fairly easy when I read about what others have gone through and talk to others I meet at treatment.  Perhaps I am an exception and have just been extremely fortunate, but we all are affected differently just as we all respond differently to treatment and all Stage lV people cannot be lumped into one.  I am not saying it is a good place to be.....I was very scared when I was diagnosed and very depressed when I read about staging and found out I was at the end of the line.  But that was 11 years ago and for the most part they have been very good years. 

       I know that people cannot agree on everything.  We all have our own opinions just as everyone with cancer is different in the ways I mentioned above.  Everyone is entitled to their own opinions and when I come across these posts where everyone is sort of bickering and criticizing posts they don't like or agree with and saying people should be more or less banned from posting, I am just sort of amazed.   StateofGrace asks what is this need to attack one another and I am wondering the same thing.  This is a free country and we are all entitled to our own opinions.  When I offer advice or tell about my experience with something, I am not trying to tell anyone else how they should respond or that they should think about things as I do.  We are all different, but we have one thing in common regardless of the Stage we are at, we all have cancer.  Maybe I have been dealing with cancer for so long, it has made my skin thick, but I am not hurt or insulted when someone says something I don't necessarily like or disagree with.  I hope I haven't upset anyone with this post because it was not intended in that way.  And giving others the benefit of the doubt, maybe the posts that did offend some of you were not meant to be that way either.  Each of us is entitled to her own opinions and we should also be able to voice them without pissing each other off. 

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    Shokk, yes, I have been reading the boards since 2005 and rarely posted. I quit coming all together after KariLynn passed away. That one hit me particularly hard. AnnNYC, I don't recall saying Fitztwins did something wrong. I admire her for "gently" leading the poster to another forum....it's the craziness that followed. KellyC, I don't know why you would assume this was about you. I posted about a private site way before you made anyone aware of it on the other forum, and I don't know you so how would I be privvy to a site you started? Bren, I'm assuming KLynn was directing that at me and I don't get it either.... the post was lost on me.....and I know how you feel. Something has gone terribly wrong and it will never be fixed, as demonstrated by some of these posts. Nobody can seem to agree to disagree anymore without going mental. I totally miss the days where we all genuinely cared about each other.

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  • KellyC
    KellyC Member Posts: 834
    edited October 2009

    If anyones been invited to a private Stage IV board, I'd love to know who has done the hard work for us and I'd love to join!  I can't recall hearing of anyone else or of anyone I know joining another private board since I started one up last March, but I guess it must be "super duper private". 

    So if anyones holding out on me, lemme know. :-)

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    Since I lost sleep last night about a thread that I started, I'm going to get something off my chest and move on. I'll give you all an example of what's gone on privately. Lady #1 - "I sincerely hope you didn't mean to come off as your post would demonstrate. Not all of the posts offend us. It's the constant questions from non-metsters, that's all. I urge you to reconsider how you worded your post."  Lady #2 - "Who in the he** do you think you are? I doubt very much you are one of us and if you are it certainly can't kill you soon enough."

    So, obviously there's a right way and a wrong way to put people in their place. Lady #1, thank you for helping me realize that my post was out of line and Lady #2, whatever they've got you on, up the meds.

    I've deleted my initial post because it really wasn't worded the way I wanted it to be and I can't fix it. To some of you, I am really sorry I hurt you with this post. To others, nothing I could ever say would make a difference anyway, so let's just pretend we don't know each other.  

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  • shokk
    shokk Member Posts: 1,763
    edited October 2009

    Gracie this is what you do............you post that there is a private stage lV site that as far as I know does not exist...........then some of the gals here that are stage lV think that somehow they are being excluded.........why do you do this?...........you question about one gal if she really is stage lV because you don't like her............that is what your post was really about.........because you don't want her here..........she does belong to a private site but it has nothing to do with being stage lV.......in fact she is the only one in her private group that does have advanced bc.........she was an '05 member........and as you know you girls that came to bc.org in '05 are a very special close group...........she was stage 3 and now is stage 4 regardless if you believe it or not.....        ..you are not the gatekeeper here at bc.org............so yes why don't we all just move on.........especially you...........Shokk

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    Shokk, please don't make assumptions about who I don't like. Through your cryptic message I figured out who you're talking about. I follow her blog on the No Surrender site all the time and occasionally post because I do care what's happening to her. Just because I don't know her personally, doesn't mean I don't like her.  KellyC already made it clear that there was a private site for Stage IV's she set up and I was part of a different one for a short time so you're wrong about that too. Believe me, I GET your message...loud and clear.   

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  • Bugs
    Bugs Member Posts: 1,719
    edited October 2009

    There will always be people that like to stir the pot.  I have never, EVER had the feeling that I was unwelcome in the stage IV forum.  I've never read a post from a stage IV'er that says that others are unwelcome and shouldn't post. 

    But, even I was getting sick of reading "I have a headache, do I have mets" posts.  This is why the "not diagnosed but concerned" forum was made.  It is suppose to cut down on the tacky, insensitive questions.  Nothing wrong with being redirected to that forum.  

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  • KellyC
    KellyC Member Posts: 834
    edited October 2009

    Oh wait.  So your post WAS about my private board that I had for a hot minute because it was only in testing stages and we lost a couple of the girls so fast it just made my head spin so I didn't follow up with it?  Or it wasn't about my board?  I'm confused.

    I'm just ultra curious WHO has a private board!  I want to talk to them, maybe we can share notes and come up with a FABULOUS private board together. 

    So who was it?  Does anyone know?

     And I think I said it in my earlier post, even if this "isn't" about my board, I found your post rude and insulting.  Like Konokat said, who CARES if someone wants to open a private message board?  And the fact that whomever it was gets "overwhelming support' from others here? That's what this place is for isn't it? Support?  And you don't want to give "her" attention? What's up with that?

    I'm sorry but your post rubbed me the wrong way.  I don't think anyone should be sending nasty private messages, but you came across as bitter and hateful.  And I don't recognize your name at all, so I assume your using an alias and are trolling the boards here just to start an argument.  Deleting your own posts just kinda confirms that you know your in over your shoulders.  

    I feel awful that women are getting hurt here, I made so many close friends of all Stages and I love them all dearly, but there's always a rotten one in the bunch that likes to stir the pot.  It's truly sad to see.

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  • shokk
    shokk Member Posts: 1,763
    edited October 2009

    Well Grace it seems to me that you started this thread with a very Cryptic post that you started getting pm's wondering what and whom you were referring to.........and it looked like to me in your response to KellyC that you knew nothing of a private stage Vl site.........

    And it seems to me from reading your post from the Accountability in a Police State thread you do have a problem with her posting here.........you have made that loud and clear...........

    So let's not b*ll sh*t each other..............you have made it perfectly clear exactly how you feel about her............I am not sure why she irritates you so much.........because she has lots of people that care about her?.......she spent years not just talking about herself.......but addressing everyone individual on a daily basis...........what is the problem?.....is it because she does not post very often at Gina's anymore?.............you can't stalk her?

     You know Grace as beautiful as you are physically you sure do have a lot of emotional issues........and I am not talking about the cancer...........Shokk

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  • shokk
    shokk Member Posts: 1,763
    edited October 2009

    Kelly this really had nothing to do with you.........but goodness gracious you are very intuitive.....Shokk

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  • KellyC
    KellyC Member Posts: 834
    edited October 2009

    LIke I said, even if it wasn't about me, I disliked her post.  It was just downright mean.

    xoxo

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  • leggo
    leggo Member Posts: 3,293
    edited October 2009

    Kelly, sorry you disliked my post...it came out wrong and that's why I deleted it. Shokk, I'm stunned. The only people who know what I look like are/were Joanne1428, Kelownagirl and Joanij.  I doubt any of them would have used the word "beautiful" to describe me. There's no way I'd post pictures of myself on the net for my children to see, so huh? You obviously have me confused with someone else. The board went through some re-formatting in late 2006 and many who had not signed in for a long time had to re-register. Nothing cryptic, secretive or stalk-worthy about it. The "secret" Stage IV board I am referring to is for Canadians only, so I doubt anybody even cares. There were only 10 of us on it, and most have passed away and the lady who set it up had problems with an American poster who doesn't even belong to this board. Believe what you want.

    Edited to add: I could quite possibly be wrong about the date the board went through the re-formatting but it was when we lost the "who's birthday" and "who's online" features.

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