Disappointed About Being Shooed Off the Stage IV Boards

I'm so sorry Canadagirl.

Sorry Canadagirl - it's happened to me too.  I totally get that there is a comraderie amongst the warriors and that caregivers are just considered "support staff" (therefore shouldn't be in on the meetings because there is no way we could ever understand their journey) but....it still hurts to be kicked out of a "room", no matter who you are.  Supporters/caregivers go through their own special pain and often feel like there is a freight train bearing down on them as they stand there, tied to the tracks.

Such is life, though, on an internet message board.  I also belong to a chronic pain site, on behalf of my husband who suffers from cluster headaches.  Same thing happens there, trust me.  In the beginning of that site, it started to get to be a huge problem in that supporters were regularly shunned by sufferers.  I took the bull by the horns there and started the Family Services Group in an effort to help other supporters.  I've since resigned because of all of the politics that ensued, but the group remains to this day.

I think it's a pretty common phenomenon that people have way more courage hiding behind a keyboard and would never actually say the same hurtful things if they were face to face.  It sometimes removes the "human" element from interaction and a byproduct of that is that posters can skip away guilt free, after they've hurt someone, because they don't have to put a face to the characters on their screen.  It's not right, but I doubt it will ever change.

I know you understand all of this and that I'm basically just preaching to the choir here but I just wanted you to know that you're not alone.  Keep posting where you need to post - ask your questions and take what you need to help your Mum.  Sometimes supporters do have to have pretty thick skin and the ability to dodge bullets.

Hang in there, lady.

Hugs,

Margi

good point, Upstreaming.  Well said.

Margi

While I can;t say I totally understand the IV ladies point of view -- as I am not as yet IV myself -- I have been following IV for a long time as a family member is IV.  I am a bit surprised at the reaction to Canadagirl as I do recall others posting on the IV forum on behalf of relatives.  Some of them became important members of the IV community.  It is a shame.  However a suggestion, perhaps if you post on the "not IV but have questions" thread you would get the benefit of their wisedom without treading on toes. 

Well, now I'm pissed off angry.

I had better not post what I want to otherwise I will be censored and blocked.

This has happened a few times over the years I have been on the stage 4 forum and it has even caused a few lovely women to stop posting on the forum when they have heard how those who are not stage 4 dare to ask a simple question or express a concern or fear have been treated.

It is not acceptable to me and I HAVE STAGE 4 CANCER. It does not excuse poor behaviour and a lack of care and understanding. It is just plain rude and very unkind. 

And to do it with private messages, so not even being up front about it. At lest then those of us on the forum could answer for ourselves. And believe me I would have something to say.

I have followed canadagirl and her mum since she first came. She has been nothing but open and honest and has never stepped over any line. She is respectful and asked very relevant questions about what has been happening in all their testing and waiting. We do not live in a vacuum and what happens to those of us with bc affects our families as well. There are other specific threads for expressing caregiver concerns but sometimes it is only those of us directly affected that can tell those of you who are very involved with caring what is likely to be going on or how to ask onc for help etc.

I'm so mad I could spit. We have just lost a wonderful woman over on the stage 4 forum. Are we only allowed to have known her and mourn her passing if we have stage 4 too. This has just about reduced me to tears and I know canadagirl you would never have meant that to happen. Life is hard enough without being treated so unkindly by a few small minded people.

There is a very good chance I should not be posting here, after all I'm not a stage 4 carer and apparently I should only be on the stage 4 forum in case I offend those of a lower stage who might overwhelmed by my presence.

I do not want to offend anyone. I am just so hurt by how canadagirl was treated and today has been a very sad day for me.

My deepest apologises and please canadagirl I would like to invite you to come back and feel welcome on the stage 4 forum.

Maybe I should have private messaged canadagirl but I will own my opinions and be upfront. 

Moira

ETA: Moira, I am glad to see and read your post - and, to look at things from the opposite end, no stage IV person should ever have to feel uncomfortable posting elsewhere on BCO.

This is our house and we all share it. Folks who disagree, IMO, may be better off starting their own password-protected stage-specific group.

Correction: I see the description of the stage IV thread was recently changed and, after years, no longer includes "and their caring supporters." I wonder what happened??

Mods, please clarify - under these new specifications this means others can't even offer condolences. Either you need to enforce that )and I just posted in relation to someone passing) OR tell whoever is doing the complaining to eat it.

Besides, don't we have enough forums already? This is getting a wee bit tribal, IMO, and I don't want anyone whining (especially early stage lackeys) to me about how I don't understand if I don't have this or that condition. I've started my own illness-specific thread on BCO and never imagined it would in any way by ok to allow sufferers only and not loved ones. So I do know, and I don't agree. I have also been to illness-specific in-person support groups that always welcome and learn from family and friends. Arrrrggghhhhh.

Moira - you may want to take back your comment about my calm.

I posted on stage IV yesterday offering support to some one newly diagnosed stage IV as i have stage 4 friends doing well - today i received a prívate message from a stage 4 person telling me not to post.........



I stated i was not stage IV but feel sad we are not allowed to even post a kind message -¶ Glad to see your post here Moira

Canadagirl, please feel free to post anytime you like in the not stage IV but thread if your mum has any questions and I will do my utmost to get answers for her. I'm so sorry you were asked to post here as I do believe your questions were pertinent and not invasive.



If I an help at all please just let me know.



Love n hugs. Chrissy

First, we are so terribly sorry for you, and any other valuable, caring member, who has been shooed away from any forum. 

The definition and organizing of the Stage IV forums has been quite a challenge for us over the years. We are always trying to listen to the needs and concerns, and adjust the forums accordingly. 

No doubt that it is difficult to be Stage IV and have someone Stage I come in to ask questions, therefore we set up the Forum, "If you are not Stage IV, but have questions". Recently, however, it was brought to our attention that many of the members active in the Stage IV forum also had difficulty have caregivers in there as it was emotionally taxing on them to hear the rawness of their concerns. In response, we set up this forum for Caregivers of women with Stage IV. We admit that we were not thrilled about yet another forum, but it seemed important to enough of our members that we reluctantly did this, and also changed the title of the Stage IV forum. 

The beauty of the forums is that we can try things, like this, and see if it works successfully or not.

Canadagirl, you should never have been shooed off the Stage IV forum. We are terribly sorry for that! You were there on behalf of your mom, and you should be there, for her and for yourself! ! No question. This is an example of where the nuances of the situation should have been read. You belonged (and still belong) there. It seems that it should be self-explanatory, but we think that we will post some common-sense rules around this in the Stage IV forum.

We are very open to hearing your comments, either here publicly, or feel free to send us a private message.

Again, please accept our apologies.

Hear hear Selena!!

sigh..... 

Yes, the stage IV forum not longer includes the words caring supporters. This was at the request of many, though not all stage IV members. As a result, there is now a separate stage IV caregivers forum. We have had many discussions about this and although we know that many non-stage IV members have posted appropriately and we have embraced them, it has been stressful and sometimes invasive when inappropriate posts appear. Case in point, just yesterday, someone posted in a stage IV thread about how she understood a newly dx sister's situation, even though she is not stage IV and referred to it as a scare!i don't think anyone minds all stages expressing condolences at all but we really need a safe place. I used to feel much more liberal about this, earlier on, but it does get harder and harder to take well meaning but inappropriate advice or to comfort , console or give advice to relatives whose family members have what I have. Not to mention graphic descriptions of the torture your mom, sister, friend etc are going through .

This board is set up with so many forums where we can all gather together, whatever the diagnosis or stage or treatment.  And then there are other forums that are specific to particular treatments, stages, concerns, etc..  I don't see why it's this is so upsetting to so many people or why it's so hard to respect these distinctions.  If you want to post somewhere where you'll get input from anyone, there are lots of forums where you can do this.  And if you want to post somewhere where you will get input only from those who are in a similar situation to you, there are forums for that. Go where you feel comfortable and don't criticize others for feeling differently or preferring the other option.

For me, some of the reason for the separations is because there are distinct differences in treatments across different diagnoses.  As someone who spends a lot of time in the DCIS forum, I can't tell you how many times I've seen well-meaning women with IDC pass along completely incorrect information to someone asking a question about DCIS, often causing unnecessary concern about a prognosis or treatment. There is a difference in how triple negative is treated.  There is a difference in how HER2+ is treated. On these forums too I've seen people come in and post misinformation based on their own experience with a different type of diagnosis. I think in most of these forums everyone is welcomed... what's not welcomed is misinformation or inaccurate posts that confuse or concern those in that forum.

Then there's Stage IV.  So often on this board we see threads that talk about how people who haven't had breast cancer "just don't get it".  There are probably thousands of posts on this board about all the stupid things people say to breast cancer patients. Well, the way I see it, breast cancer and terminal breast cancer are two completely different diseases. I know what it's like to have breast cancer, but I have no idea what it's like to have a terminal disease. I know that I "just don't get" what it's like to be Stage IV. So I understand why some women who are Stage IV get frustrated when those who are not Stage IV post in the Stage IV forum. I don't read the Stage IV forum often - I just go there occasionally to offer condolences or check up on someone I care about. But even in my few visits, I've seen lots of head-shakers, posts from non-Stage IVs that startle me with their insensitivity.

This issue has been going on forever. There clearly are different opinions on this, even among those who are Stage IV. For me it's simple. The women who are Stage IV have enough on their plates and enough to deal with. If the majority prefer to restrict their conversations in the Stage IV forum to only those who are Stage IV, whether you personally feel the same way or not, why not respect their feelings?

one question...

is this a public forum? 

if ppl want privacy.. go to private forums

BCO is a very important ressource of education for all stages as well as ppl not dx with bc..