Lower Stage Posting on Stage IV Forum

I agree. Unforutunatley, sometimes the damage is done. There were so many ugly things said last time around that women were simply alienated from that forum. Some were chastized and humiliated and even it wasn't directed at them, I think they got the message. Here I go reminiscing again, but I remember when I first joined, losing my mind, because I thought I was going to die next week. Half of the women who responded were metsters and half weren't and one in particular who wasn't, sent me a pm at 3 o'clock in the morning just to see if I felt any better and to tell me "goodnight". She still posts on other forums regularly, but never ever posted on the Stage IV forum again. I doubt she'll remember this because I was just another hysterical newbie, but maybe she still reads here and will find out what it meant to me because, come to think of it, I never got a chance to thank her. These are the caring people we've lost on the Stage IV forum forever. As great as it would be to just start over, the hurt ran deep and I really doubt they'd ever come forward again.

Gracie and Cynsister .. thanks for posting.  It really does show how far a little kindness will go, especially when someone is afraid and vulnerable. 

hugs,

Bren

  I just do not understand why it is a big deal if a lower stage posts on a Stage lV forum.  I know I am not your typical Stage lVer.....have been doing fine living with mets for 14 years and in truth more than that since it took them so long to finally listen to my complaints and do a scan.   And I did not do tamox as preventative, used it as treatment after I was diagnosed Stage lV.   And it is only now that I am doing Adriamycin which is the chemo most Stage l breast cancer patients get as a lst treatment and since it is new to me, I have actually gotten and appreciate information some Stage l women have given me so far as SEs.....yes, some of the women who are now Stage lV may have had it, but time sort of fades memories and it is the Stage l women who had it not that long ago who have been most helpful in telling me what to expect.   This may not pertain to a lot of you because as I said nothing has been really "normal" about my cancer from the get go, but I just cannot understand what the big deal is and still maintain we are all in the same boat.  I do not feel different now that I am Stage lV, certainly not special,  and sometimes am just as scared and worry about things the same way I did when I was newly diagnosed.   It's sort of like highschool.....guess Stage lV makes us Seniors and the newbies are the Freshman, but we are still are in the same school...and I feel we learn from each other. So far as changing things, the moderators can do what they feel is best, but I honestly just don't understand what the problem is. Oh, and Joyce, thank you for your kind words, but there really do not need to be more of me around here......am sure my husband and people who know me would agree with me on that one.....also those of you who do not agree with me on this topic.     Peace. Marybe

I would just like to applaud gracie, cynsister and marybe''s posts above.  I think their posts show incredible sense, compassion, and an understanding of what is important here.  Which ever one of you said that it takes just as long to gently direct someone in the right direction as it does to berate them - AMEN. 

The reaction by some - NOT ALL - stage iv women to the lower stagers is always surprising and sad to me.  The complaint is that lower stagers and new posters sometimes say things that are upsetting, although I have never once seen someone say something with that intent.  Well, the stuff that is sometimes said to or about those persons in reaction is equally upsetting and it seems is often said with that very intent.  The thread about being brave is a perfect example of that. 

While I have not ever had any ugliness directed at me (at least not to my knowledge), the way some posters are treated on the stage iv forum is offensive to me.  There are a handful that almost never fail in their snark to lower stage posters.  Personally, I will never again post on that forum for any reason.  The chatter over the last several days has made clear that my welcome there is very one-sided and limited only to certain and unpredictable circumstances.  I would rather not bother.  That is sad because many of the stage iv women are lovely, intelligent, funny people who I enjoying communicating with.  I want to support them, as well as learn from them. Unfortunately, the actions of a few ruin it for the rest and there is always going to be someone who is unhappy no matter what.  But I guess that is how it has always been here and really just about everywhere. 

Just my two cents worth.  Good luck to you all in working out a solution on this.  I hope you can come up with something that works for everyone involved.

Cynthia, I'm not Stage IV but as someone who has always treaded very carefully around the Stage IV forum, and who has never felt that I have any rights or role there (except to offer support and condolences), I get it.  When you post in the Stage IV forum, you should have the freedom to be able to say anything you want to your fellow Stage IV women, without having to worry about being criticized by those who are not Stage IV and without having to think about how someone who is a lower stage might feel about what you say. 

I'm astounded at the total lack of empathy and understanding that I see exhibited here. Reading the more recent posts and it seems that a group of women are patting each other on the back for being mature enough to not get fussed about who posts in the Stage IV forum and for not getting upset when someone who isn't Stage IV posts something that is inappropriate.  And a group of non-Stage IV women are complaining about how the board should be open to everyone and how some Stage IV women make them feel unwelcome in the Stage IV forum.  It's as if a group is saying "we are better than you are because we don't get concerned about this stuff".  Or maybe they are saying "what I believe is right is right; what I want is what's important; what concerns you doesn't count".  Sorry for making it sound so harsh, but that's how it reads to me.

I just don't get it.  So let me try a rather absurd example.  Suppose I like dogs.  I love it when they come up to me, all excited, and jump up and lick me. I think it's the best thing in the world.  I live in an apartment building where pets are allowed. The building has received complaints about dogs jumping on people in the halls and the elevators so they are considering putting in a rule that all dogs have to be on a lease and the owners need to keep their dogs from jumping on people. I don't see the point of the rule. I don't want the rule.  But should it be implemented?  Of course, because some people are upset about the dogs. There are people who are afraid of dogs. That's incomprehensible to me, but that doesn't change the fact that there are some people who are terrified to have dogs jump on them. So of course the rule should be put in place. It may not be the best for me but in truth it will barely affect me.  And it's necessary for the peace of mind of some other people.  That's the way a civilized, respectful society works. 

Isn't that how it should work here?  The Stage IV forum is the home on BC.org for all Stage IV women. If something is upsetting to some of the Stage IV women, even if it's not upsetting to all, shouldn't it still be addressed?  A change might not be what everyone wants but to some who live in the Stage IV forum, it's important.  Isn't that reason enough to do something?  Or do people truly believe that their wishes are more important than someone else's concerns?

Well said Beesie!!!

The top line of the IV forum says for women "braving" more treatment. I do understand why people feel uncomfortable there.

I have stopped posting in the forum for a while if not permanently.

I know Konacat wanted us to all share, but she is gone.

On twitter and FB and blogs it's not an issue...so why here? 

But hey if I can make things a little better by staying away, it's the least I can do.

I think anyone who takes part in a clinical trial is truly brave, and has earned our gratitude.

Bessie, you have misread my point.  My point is not that my feelings matter and those of the stage iv women do not.  My point is that ALL of our feelings matter.  That is also what I took out of the posts that I thought were very well written. 

I understand that the "brave" thread was a reaction to a specific post by a specific person whose comment is even quoted in the thread (something about "dear brave ones").  I am sure she can figure out the post was in reaction to her even though her name is not stated in it.  Does that person's feelings matter any less that those who complained about her?  That fact that it was posted in the stage iv forum does not mean the feelings of the individual poster and group of women she belonged to go by the wayside, in my opinion.  All of the forums are open to everyone.  The titles pop up in active topics for all to see.   I would be equally offended - and I bet you would be too - by a thread in the stage i forum titled "If one more stage iv woman complains about stage i women being inconsiderate to their feelings, I am going to lose it!" 

Take your hypothetical.  Suppose through an innocent mistake, you violated the dog leash rule one day.  In response to that, instead of simply offering a reminder that leashes are required, one of the dog haters makes a big stink in front of everyone about how disrepectful you are and then they all got together and discussed what an insensitive person you and dog owners in general are.  Is that fair?

I am not someone who thinks in terms of us versus them on this board.  I think we all have things to contribute irrespective of stage.  I also think we all need to be aware of each other's feelings, irrespective of stage.  That is my point.

As far as I am concerned, this issue is resolved.  I will no longer post on that forum, not that I frequented it to begin with.  No hard feelings; I just think it is easier that way.  

(eta:  I am not singling out the brave thread as the worst thing ever said here.  It is simply the most recent example of what I am talking about and seems to have been what instigated much of the forum protocol discussion in the last few days.  I do not believe the person who started that thread is one of the handful of people who constantly complain about lower stagers.) 

Removed my post....no longer relevant.

Lisa, I agree with you that everyone's feelings count.  And I believe that everyone here is equal. And no one should judge or disrespect another person.

What I don't believe is we are all equal everywhere on this board. In the Stage IV forum, it's the feelings and concerns of the women who are Stage IV that should take priority.  So I care if someone who is Stage IV is offended or upset by a post from someone who is lower stage.  And if someone lower stage wanders in, says something that is concerning to someone who is Stage IV and gets verbally slapped for it, I'm not too fussed by it. I would prefer that everyone be polite and that the lower stage individual be dealt with politely, but that doesn't always happen.  So be it.  

By the same token, if someone who is Stage IV posts in the Stage I-II forum, or in the "Not Diagnosed but Worried" forum and puts down someone or dismisses their concerns because she is 'just Stage I' or 'not even diagnosed', then I would jump up and defend the Stage I or not diagnosed woman.  And I wouldn't get too fussed if someone verbally slaps the Stage IV woman for her inappropriate post, although of course it would be better if the individual is dealt with politely.

So yes, I agree that everyone's feelings matter.  But I also believe that if there is one tiny corner of the board that is designated for you and those like you, then in that one tiny corner of the board, your feelings matter more than someone who is stopping by to browse or comment.  Keep in mind too that this board has 67 forums. Most relate to diagnosis, or treatment or interests - no stage.  Given all the places where we can all gather together and share stories and experiences and advice, regardless of stage, why is it so important that everyone have the right to participate equally even in those tiny corners that are designated for special groups? 

As for the "Brave" thread, I read a lot of this board and it never occurred to me that the thread was directed at any one individual. If someone is taking it personally, and even if it was her post that triggered that thread, this individual should realize that it's not really about her. It could just be that her post was the straw that broke the camel's back because in fact there have been hundreds of posts on this board telling Stage IV women that they are "so brave". I notice those words because I cringe when I see them; they bring back an experience from my life. Some time ago I went through one of those life-changing experiences that you would never wish on someone else. At the time I was often told how "strong" I was in dealing with it.  I would thank people for saying that but in my head I would think "they are clueless".  I wasn't strong; if I was anything, I was a good actor, making it seem like I was fine and everything was normal.  The reality was that I was in a situation that I wanted no part of, and I would have sold my soul to change what happened.  But it had happened and I had no choice but to deal with it and continue to live my life. So I happen to be in the camp that finds statements like "you are so brave" and "you are so strong" to be trite and inappropriate in a situation where someone is dealing with something completely outside of their control and where they really have no choice but to deal with it.  When I saw Cynthia's "Brave" thread, I chuckled and thought that I could certainly identify with the sentiment.

gracie, it sounds as thought you see each inappropriate post as a small, benign situation and you put it out of your mind immediately.  That's great.  But someone else might see each inappropriate post as an ever-increasing pile of intrusions into the one space where they thought that they wouldn't have to deal with things like this. 

I hope that for the sake of those who do want a change, that something is done to reduce the number of inappropriate intrusions in the Stage IV forum.  And I hope that for the sake of those want to keep the Stage IV forum open to all, that whatever action is taken still allows appropriate participation from non-Stage IVs.  A fair solution that attempts to address the concerns of all those who are Stage IV (and frankly, forgets about what the rest of us think!).

(((otter))), thank you! 

Is otter saying that we "can't smell our own farts?" 

(Instant apologies, not meaning to to antagonize any of my flatulently-challenged sisters.)

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Kindest Wishes to those who are Stage IV. 

Good Luck Mods. 

Irr: I'm sure you didn't mean to, but your comments come across to me, at least, as being quite flippant. The OP seemed to be expressing some honest emotion (her feelings) and to respond in a snide fashion seems a little inappropriate to me, to be truthful. Or maybe you were just joking?

 Anyway, speaking as someone who was told 6 weeks ago that my CT scan looked highly suspicious for mets - last week I learned it may just be infection/inflammation -  I can tell you that I lived a whole other level of terror until my follow up scan. Being able to read the stories of Stage IV women who get up and go each day made me feel that even if I do end up crossing from Stage III to Stage IV, I can handle it. But I'd personally rather receive support than ridicule. (I get enough ridicule from my kids!!)

Ummm, Irr...here's what you posted....

 As is evident by the recent rant about daring to tell a stage 4 woman she is brave, I think it is safe to say that the only safe ground on the stage 4 forum is "I am sorry" or "I am praying for you" or "Hugs"; and even then you will probably offend someone.   Best to just stay away.  Of course, then you are being offensive for ostracizing them.  

 If you don't think this sounds flippant, then I just don't know what to say. 

It seems to me that some folks are not reading this entire thread.   Maybe they just read a few posts and haven't read the entire conversation?  Because, mostly I see respectful conversation here.

People should judge others on the entirety of their posts on this forum and not one single post, and people should judge this thread in it's entirety rather than a page or two, or any arguments that have happened in the past. 

Not a single person has advocated for lower-staged people being kept out of Stage IV.  I think all of us want to keep interacting with our Stage 0-3 sisters, IN that section and outside of it.  I really hate it when people post appropriately there, yet still apologize.  "I'm so glad you got a good scan result and I'm sorry for posting here."  No need to apologize!  They shouldn't feel uncomfortable giving there.  

Since so many have pointed out that "it's a support group" than what is wrong for asking for ONLY support in Stage IV?  

And, now there is the brilliant thread on the top now where anybody CAN feel free to ask a question of a Stage IV lady, about scary symptoms or whatever, so it would seem the problem is being addressed. 

I had given up on this thread because I said all I wanted to say and the mods are not going to answer my question.  My opinion is out there, take it or leave it.  I probably will post my help and advice to people as I always have, no matter where it's posted.  I have tried to help everybody I can by sharing my experiences and will always do that.

Now, I am really posting to stand up for Cynthia and the "brave" thread.   There is no shortage of threads on this board complaining about things folks say to cancer patients.  I did a quick search for the word "stupid" on the Stage I/II, Stage III and across the board and came up with these:

The Dumbest things people have said to you:

OMG They found the cure for stupid 

How do you answer did they catch it early? 

So, what's your prognosis (insert sad face here) 

I'm sure I could find thousands more.  Obviously,  the things people say to us at all stages is a valid and common topic of conversation.   Something sparks those discussions, they don't appear from mid-air.  Sometimes, it is something somebody else has said on the forum.

I also think that expecting perfection from us in our responses is asking too much.  Many of us are in pain, exhausted, trying to juggle pain pills, doctors appointments, work, oxygen tanks, wheelchairs, scans,  nausea and maybe sometimes things don't come out perfectly.  We are human; hurting humans. 

Still most try to be nice and not hurt others.  I should not be going into Stage 0-IIIc sections and posting "get over it, you have a good chance to survive!" Just as Stage 0 to IIIc should not come into Stage IV and say, "I'm the same as you since I'm afraid"   None of it is true and neither is sensitive to what the other is going through. 

This board is divided up into sections, presumably for a reason.  If you venture into a specific section, then it is good netiquette to try and post from that perspective.  The Stage IV section is not ABOUT Stage IV, it is FOR Stage IV.

Or, is it?   

I see that happening all over this forum  except the stage IV section which can be overrun with questions from non metsters.  Everybody who gets scared wants for us to reassure them that they are not going to end up like us.  Some metsters are fine with it and some are not but now there is the sticky thread, so hopefully, everybody who wants to ask a question will post there and get an answer.

And, since this topic of conversation has apprently come up numerous times before, my guess is it will never go away until it is resolved by the forum owner.

The only question is now:  how to resolve it?  

The sticky at the top is a start.

And, I love my lower staged sisters and like I have said many times, you can post in any thread of mine you want.  And, if you have a question about liver mets, you may feel free to PM me. 

As always, my fingers work too fast - I just wanted to stick up for Cynthia.  Sorry for the ramblings, lol!