Angry and scared
This forum... is just like all other forums.
It has a strong community feel.. it has good people with great intentions.
It was my oasssis..and still is... when i am lost in a sea of cancer.
But i'm scared...
I'm scared you all are gonna be like ...every where else..
Judgemental.. condescending..is usualy not the norm here...
dont get me wrong.. i have felt very welcome ever since my dx...
But i'm scared...
I don't want to leave a place that gives me balance...
I dont want to discontinue coming here...because a few just dont understand me..
But i'm scared
I'm scared you dont understand me
I'm scared the negative energy, is going to attract some more negative in my life...and in yours.
I'm scared you dont see how this affects you
i'm scared the mods are not hearing me
I dont want to leave...
But , this community is starting again to show signs of "clics" and the cracks are worrying me...
"it's ok..it's stage 4, we gotta understand"... boy thats a biggy dont you think?
There is no PLACE FOR DISCUSSING THESE ISSUES... all threads are public
There doesnt seem to be much place for growth and change here...
Stage 4 need a PRIVATE place to post... hell we ALL need a private place to post... ALL THREADS ARE PUBLIC...
shrug..i doubt anyone is truly listening...
I live my life trying to keep balance... yes i vent... but i dont do it were it will damage or affect others...
I surround myself with positive thoughts and experiences... i dont avoid the neghative but i dont try to amp it up
and
if my behavior..negatively affects another... id ont try to explain it away LOGICALLY... (Sigh)...i just say i am sorry and try to make the person feel better.
All i read here are people trying to make excuses... and everyone forgot that people got offended or hurt in the process...
I am hoping to create dialogue...but i fear... the gap between BCO and i..is getting wider..
Comments
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Celine,
Yes, bco is a public forum and as such is not much different than the real world. If you find discussions or individual members are not suited to you then block them or just don't read them. I know I do. I'm not sure, that as a public forum, bco was intended to be a place where we all agreed or express ourselves in like manner. As a matter of fact, I think that would be pretty darn near impossible. What upsets or offends one may not upset or offend another. The rules are guidelines and things are just not that black and white. This makes me neither angry, scared or upset, it's just a microcosm of life. Just stay away from what you don't like and stick to the areas that make you happy and add value to your life. These boards are big enough for all.
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well said...and i agree, and i believe thats why i stay...
Rules are more efficient when they are not "written in stone". being able to judge situations as they arise can be difficult as administrators or members of a forum like this...
but...
It just seems to me.. that BCO, oscilates from one side to the other.
At times , we are careful as to what information is shared... because we do not want to share false hope or misinformation, we as patients and survivors MUST be vigilent ..but ..
At other times... we allow our true colors to shine tru.. we are human.. good and bad.
But the lack of leadership, leads to people being not only disrespected but also a lack of communication...
So.. we need to change or... IMHO...if we remain stagnant, these issues will just repeat.
1- Stage 4 members need a private forum to expres themselves
2- There should be a MEMBER only section
3-Rules should be more clear
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Celine,
Yes, some of the issues will repeat themselves. Things heat up, things cool down. Clearly this has a strong effect on you. Again, a reflection of life, so you can choose to remove yourself from those threads/members that bother you. The rules are quite clear, but the mods have the freedom to interpret and apply them as situations merit. That is their job, not ours. I suppose you could inquire about how to become a moderator on these boards. Members only section? Perhaps if there is enough support for such a thing, it could happen. Lastly, and I speak for myself only, I have no interest in a private stage IV forum. It is working just fine for me, but again, if there is enough support for such a thing it could happen. I love bco, warts and all, and I just can't get my knickers in a twist over the all too human stuff that goes on here. But that is just my opinion.
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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.
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Kayb, thank you! I just want to add that no members of this board have caused me any problems. Just the opposite in fact. But I'm "up to here" with other stuff.
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"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.
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i never said.. to block stage 4... i dont need PROTECTION from their reality... pls dont assume i do
but i think it is UNFAIR to have them post anywhere they want...but others not... its makes people feel like being stage 4.. is somehow "more important" then others...
stage 4 has different needs then the rest of us that i admit... but
You cannot compare struggles..
No one knows here.. if a stage 1's life is easier or harder then a stage 4...and to make that assumption is insulting.
Yes stage 4 is obviously a different struggle with a huge emotionsl, physical a spiritual impact on all...
I HAVE 0 ISSUES with the stage 4 posting publicaly.. i have issues with stage 4 members posting and other "stages" told not to... this is a creepy kind of favoritism going on here...sigh.
Obviously if 2 prolific members are saying theres an issues..maybe... SOMEONE SHOULD LISTEN?????
and not just tell us theres no problem...sigh
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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.....
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Good post Racy, thank you for reminded me that i love this site to.
But love is not all flowers .. sometimes it needs special attention, to the little things.
it is not always safe... people judge others here...just like they do elsewhere.
our reactions to it.. SHOULD be what differenciates us....
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exb:
i dont hide from what offends me... i try to find out why i am offended..and learn from it.
I also dont block people because i am dissapointed in them..
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Ok, I have to jump in here and add that my beef with the site has nothing to do with the ability to post on Stage IV. But, the pattern of discrimination and harassment (NOT by members) undoubtedly extends to many areas.
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agreed ... the pattern is everywhere online...including bco
Public figures are just that... figures that are public... i expect nothing less from them.. nut i expect a hell of a lot more from us
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your passion about these issues on bco is obvious. Good luck in your quest.
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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
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Just wondering how "F U, Amy Robach."
isn't defamatory?
I think one can express an opinion or concern....or disappointment without callling someone a twit or any other name, and without saying FU. It doesn't matter what "stage" you are or were, or however you think about it, but being respectful of everyone is the point. You can even be angry without calling names and saying FU in a public forum.
I am sure Amy was doing and saying what she thought was best for her own personal well-being and that of her family. I don't like the way breast cancer is being presented in the media AT ALL. Lifetime in October drove me absolutely insane and did make me angry, but I just respectfully try to spread more accurate knowledge whenever the opportunity arises, but I am positive I don't always handle things perfectly and I know I have confused and offended well-meaning acquaintances and friends. I just try my best.
My only issue with this site is the sometimes drama and hypocritical attacking and intolerance of others (but that happens everywhere in life), and also the sometimes gloomy, doomy scariness of it, but I just do my best to avoid what I don't think serves me well.
I am someone who was fortunate to have done well side-effect wise through 3 surgeries, chemo, and radiation, etc, etc....When people tell me I am tough, I agree with them. I am tough and I took good care of myself and made good choices, and was fortunate enough to have the resources to gain extensive knowledge and acquire very good care, but I always make it a point to mention to those people who compliment me (and many say that it must be because I am so positive.....even though they have no idea how negative I have been during many, many moments), that there are so many women "tougher" and more "positive" than me, that don't fare as well, and it's through no fault of their own. I don't call them names or tell them to F off, though.....okay, well maybe in my head sometimes.
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thank you.. you said that better then i could.. my heart, good or bad, always gets the best of me..
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You're welcome. I understood your point. I also wish only the best for everyone here. The possibility of Stage 4 terrifies me every single day and that is the truth. I am already angry enough and "bitter" as my sister so thoughtlessly called me during my vacation with my children this past week, so I want to also add that I am not judging for an FU or attack happening here or there. We have all been hurt and are sad and terrified a lot of the time, and Stage 4, I can't imagine, if I ALREADY feel this bad so much of the time. There are many moments during the course of the day, where it dawns on me that my life has been ruined. How is that for positive? I just hope and strive for more productive understanding and kindness to others even if they are saying non-productive things.
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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
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thank you Bren... though i still dont understand why change is frowned on?
i dont understand the "look but dont say anthing approach" ...
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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.
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leggo
thank you.. your post was also very helpful
and yes i realise not all stage 4 agree with the mod.. was there ever a vote?
and i wonder..why stage 4's are not encouraed to.. ignord as well... ?? sigh
IMHO discrimination is discrimination... if you play the stage 4 card...then you are in for an emotional battle.. one that.. like you said leggo.. no one will win
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Hugs Leggo!
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I also swear like a sailor, so you're in good company. It's not the F word I think is non-productive, in fact I like it....It's the saying FU directly to Amy Robach. I just don't know what purpose that serves. She meant no ill will directly toward anyone. She is just confused or maybe just trying to keep her job. I will never claim to know how she feels or why she says things.
I support all of you and respect your opinions.
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excactly LK... its the intention...
hey im french.. i make no excuse for swearing lol
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Celine,
I don't think change is frowned upon. Perhaps, not enough people want the change you seek, at this point. We've been here too many times, and even if some are very strongly in favor of change, I suspect (but don't know for certain) that the majority don't. I have faith in the mods and I think that if they felt that there was a change that the majority wanted or needed, they would act on it.
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well sorry if i dont share your faith..
and having a vote ...win or loose..allows people to have a voice.. nothign wrong with that, is there?
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No, no vote....and IMHO, a vote would not have made a difference. The forum was going down in flames and the mods did what they had to do or it would have crashed and burned. A vote would have added fuel to a raging fire. In a count of just friends I lost in the fire, there were only three. I'm sure others lost more. It was rebuilt, but with fewer, newer members.
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but with the same issue....
so whats to say the same doesnt happen again?
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I was a poster to the DCIS thread along with Celine Flower, TB90 and others. I felt comfortable to express my opinion there (despite the fact that I was in the minority) I discovered that the moderators changed the title of the Stage 4 thread to Aaaaargh, Amy Roback which I was happy about. But they shut down the DCIS thread!!!!! I couldn't believe that. I have always respected the Stage 4 threads not to post there. I am OK with that rule, I guess. In my mind, the shut down of the DCIS thread just seems to reinforce what Celine is saying.
MsP
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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
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