Angry and scared

This will be one of my last, if not last, posts. I completely relate to what Celine is saying. I have seen a pattern of harassment and discrimination that I find very disturbing. And I need to end this right here. 

"I think that anyone who's offended should block those forums themselves, but please don't try to "protect" the rest of us from the full spectrum of life with BC. Life isn't always perfect, people are not always perfect. Online, we're exposed to many different people, many of whom we probably would not become friends with in real life because our personalities clash. I think that's just the nature of the internet. We have to control our own exposure to the things and people we encounter online."

Well said, kayb. It really is that simple.

I love this site, which has shown to me that, wherever we are around the world, we have much in common as women / men / human beings. It is good that this is a safe place where we can share our true feelings and knowledge intelligently and compassionately. I have befriended members at all stages and post, with discretion and respect, on stage 4 threads.

Wishing best to all with BC. xxx.....

Celine - I so relate to what you are saying. When I first joined this forum I posted something on Stage IV. It wasn't the content of the posts I took exception to, it was the horrific language and boy I got hammered for it by one member. The language used didn't compare with the hostility I got from this person. There was no agree to disagree it was more like I didn't have the "right" to say anything because I wasn't Stage IV and I didn't understand. No I am not but I certainly am familiar with BC. My mother had it, my sister has it and I have it so because we aren't Stage IV we have no worries? Seriously? We all know how tenuous BC is no matter what stage you are and that it is more problematical for the ladies dx with Stage IV. My heart and prayers go out to them but that doesn't mean the rest of us are home free...not by a long shot.

The recent onslaught of posts about AR from GMA was disturbing not because we don't have a right to our opinions which of course we do but she was vilified and I believe it was patently unfair. So now we have to tell our stories according to a prepared text or we are somehow not taking the disease seriously or don't have compassion for others who are suffering more financially and physically than she is? Give me a break. We have no idea, but we could guess, what her internal turmoil is. She has to be upbeat to do her job. What purpose would it serve for her to relay all her aches and pains and worries. I think some women were jealous because she hasn't experienced the debilitating symptoms they have. I am sorry they feel that well but maybe the rest of us could be jealous of women who don't have BC at all and on and on it goes. What a sad commentary. diane

Celine,

I read the thread in the DCIS forum as well as the one in the Stage IV forum regarding Amy.  I've been around for a number of years and have seen the changes here on BCO.  The issue of whether non-Stage IV gals can post on the Stage IV forum has come up many times in the past.  And the decisions that were made evolved into what we have today.

You may be angry or feel it's unfair that the Stage IV gals have their own forum ... but that's the way it is.  I've seen it a few times over the years where some non-Stage IV person gets riled up about something posted in the Stage IV forum.  This is not new in the history of BCO.  But what has evolved is the "practice" or "guidelines" if you will that we have in place now.

I have many friends throughout BCO and quite a few with Stage IV disease.  We have been together for a long time and many of us get together in person regularly.  We are close friends.  I don't post in the Stage IV forum ever ... the exception being if it is someone who is a close friend and I want to add my encouragement to a tough situation she may be in.  That's it ... I can read it if I want, but I need to respect the boundaries that have been put into effect.

Hope this clears up some of your questions about why things are the way they are.  Maybe I should have put this in the other thread you started about the history of BCO.

hugs,

Bren

This is all just so sad to me. First of all, I have absolutely no problem with bad language. I myself have a mouth like a sailor when it comes to cancer and I actually chuckled that the title of the AR thread was changed to "aarrgggh". Talk about being stifled. If I want to say FU, I can't think of a better place to do it. Everyone's sick to death of the cancer machine and there isn't a more appropriate word to describe it. 

I want everyone to think back to pre-2009. Do you all remember those days? Everyone was allowed to post wherever they wanted. Support and love was always offered to Stage IV's by EVERYONE. Then it all turned to crap. Celine, I know where you're coming from.....kind of. I do think it is unfair that a Stage IV woman can and does post wherever and whenever they want but a lesser Stage is discouraged from posting to them. When I say kind of.....I mean that not all Stage IV's have that mindset. I personally think the board was ruined when only two Stage IV gals made such a stink and made it so ugly, that the mods had no choice but to cave and add the Stage IV caviat. It blows my mind to this day that two members and their cheerleaders accomplished that, but whatever, it's the new reality of this board and we can either accept it, or leave....and leave many did, and I miss them. I personally chose to use the ignore button in spades so I could rationalize staying without losing my sh*t. I can only suggest you try using it and see if it makes a difference. I know it's sad and unfair, but really what choice do we have but to ignore when we're that angry. 

Older members will know exactly what I'm talking about. The "cheerleaders" of those two members will be angered by my post (and can use their button) and the rest of us that were saddened by the ultimate change in the boards' feeling of community will agree. I often hoped that the site would go back to the way it used to be when those two members left, but I guess it wasn't meant to be. This is how it's going to stay and we all had to find ways to deal with it. I made a personal decision to avoid posting on the Stage IV forum whenever possible to keep my sanity. Maybe it would be best for you to ignore that forum all together as it is possible to do that now. You have to make a personal decision about the pros and cons of staying or leaving. It is what it is. I left for a while but then reconsidered and decided there was no way in hell I was going to let two women ruin my right to information that could save my life. Unfair and unpleasant for sure, but sometimes necessary to avoid conflict. It got REAL ugly back then and I'd hate to see it again. 

The down side is that everyone lost. 

Signed, A member who wishes things could be the way they used to be.

ETA: sorry Bren, we had the same jist, but it took me forever to type my post out.

Hugs Leggo!

LKSHER

"I don't call them names or tell them to F off, though.....okay, well maybe in my head sometimes."

I think maybe part of the point is that here you can say what's in your head sometimes and it's an outlet that way. Certainly nobody should say such a thing to another poster. 

Thoughts on AR & Reactions

My opinion as far as the AR thing goes, as a journalist she (and the network) completely ignored journalistic ethics and by doing so did exactly what those ethics are in place to avoid. A person who puts themselves in the public eye and is paid to do so has a greater degree of responsibility to the public (and to their profession) and faces much harsher criticism when they do not meet that responsibility. AR isn't your basic uninformed relative or friend; she has made herself into a national 'face' of BC - that makes the level of animosity toward her when she misrepresents BC in a way that does real and substantial damage to those people who have differing circumstances than hers much more understandable. When we speak of extending love, understanding and support to other members of this forum, perhaps that understanding - that we are not all saints and we make mistakes with our words sometimes, but also considering the circumstance behind them and cutting people some slack seems like it should be part of that. Recall that the people who made these posts were, although the words were not hurled at them, being labeled as cyberbullies, and uncaring, etc. A simple post saying that perhaps the criticism should be stated differently might have done the trick. As far as this being about stage IV getting special 'privileges' - it doesn't seem to have anything to do with that - it just happened to be posted by a stage IV person, had I made the post I suspect the mods would have treated it in the same fashion. 

The Thread Set-UP 

As far as the whole stage IV threads are concerned - personally I like how it is. I like to be able to read the threads because I know I might end up there one day - so I get to know some of these women a little and also it gives me some peace, because I see that they (simple women like myself with faults like mine and who are not necessarily 'tough' or better prepared to face that diagnosis any moreso than I am) are able to cope - and then I think, well, if I get to that point, I will be able to cope as well. 

I don't feel "excluded" at all - I mean here I am on a BC board - That means I'm 'excluding' women who don't have breast cancer. It's not because I think that they are not capable of empathy or understanding or whatever - it's just that I have breast cancer and it's nice sometimes to be among specifically women who share that particular set of circumstances. It seems to me that the same is true of the stage IV women - if they have expressed a desire to be among people who share the particular set of circumstances that are unique to them - then I don't understand why that has to be seen as demeaning or minimizing or anything else to anybody else. If they want to post on the other threads they can - so they have a choice. What is this thing about 'fair'? I just do not understand at all how this matters. I wish somebody could explain it to me because it seems to come up a lot and upset people for no good reason as far as I can tell