Disappointed About Being Shooed Off the Stage IV Boards

Celine you have only to block the forum and you will no longer see the forum. Though you insist there was no reason for this I ask you again to read the many reasons we discussed among ourselves rather than dismissing it out of hand as some unilateral decision.

I am not dissmissing ANYTHING

as i have said... stage 4 ppl want privacy...and i can understand why...but why, allow their sub forum to be public then?

Celine,

At the risk of being repetitive, you can post anywhere. The request to respect stage IV is voluntary. As for me, I rarely, if ever post in forums/threads in which I have no experience. The one exception would be threads in which information sharing is the main purpose. But that's just my choice.

Caryn

Then there is no reason to continue the discussion. We have reached.....make that impasse.

I have to say that any board member that takes it upon themselves to be the "board police" and send PM's to someone, purporting to speak for everyone, and telling them not to post in a specific section, has crossed the line. Period.  You do not speak for everyone in your forum, and have no right to do that.

If there's a problem with a member overstepping their bounds and "daring" to post in an unapproved secion of the board, there are moderators - let them do their job.

It's crazy that members are doing that to other members, regardless of stage.  No one wants to be here.  Why make it even more unpleasant?

So mods... what happens now if stage 0 to 3... want a "do not post " rule?

We are beating a dead horse but having been lower stage once upon a time, stage IV is very different in so many ways. Still, one chooses to respect the heading or not. Nothing prevents you from posting in the stage IV forum. The "rule" is simply telling you who the forum is for and asking that you respect that. There is no "do not". I actually like the fact that compliance is voluntary and posting condolences has NEVER been considered inappropriate .

i agree with all points athena

Decency, respect and understanding is expected from all, in my book.

I want to clarofy my position since e,motions got involved

1- I believe canadagirl needs support, acceptance and respect

2- I feel there should not be lines drawn, in an open forum 

3-I feel that people who ask for privacy should NOT post publicaly 

4- BCO is a huge source of information for a wide variety of people , restricting access is like with holding information

common senseapplies to ANY  stage imo

good post patti

To add to my previous post - reading topics from  family and caregivers also gives me insight as to what they may be going thru....they deserve compassion as well....it can't be easy for them either.  Please keep all forums public as all are of great value.  I so worry about what my children - sister - brothers and mother fear and their intensions of shoring me up when I need it.  Again - I try to protect them as they need to live their lives - but if they truly want to know what we deal with - then fine.

I just got caught up on the posts since yesterday afternoon.  Wow. 

Some random thoughts:

- This is not a public website. This is a private website set up, run, managed, and funded by breastcancer.org.. They set the rules. They have made the choice to allow public viewing of the discussion board but that doesn't make this a "public" board. The fact is that BC.org require that anyone who wants to post on this discussion board must register and agree to their rules. BC.org have the right to make any decision they want about the board. This board is not about any one of us. Many of the regulars here feel pretty possessive about this board, but it important to remember that this board is not here to meet all of our individual needs. This board is about all of us, not any one of us, and the BC.org team have the hard job of making decisions, setting rules and setting up the board in a way that meets the needs of as many of us as possible. Are we all going to be happy about everything? Of course not.  

- As I said in my post yesterday, I believe that this is a matter of respect. A majority of regular posters in the Stage IV forum requested of BC.org that the Stage IV forum be restricted to Stage IV posters. BC.org made the decision to respect that request and they decided how to implement this change in a way that is completely consistent with how the board is run, i.e. by continuing to allow public viewing but by requesting that only those who are Stage IV post in the Stage IV forum. They went one step further. To address possible concerns, they set up other forums where non-Stage IVs can address issues that they might otherwise have brought up in the Stage IV forum. Of course Stage IV women can choose to participate in these other forums, if they wish. This all seems perfectly reasonable to me. BC.org respected the wishes of the majority of Stage IV women and they tried to find a way to accommodate everyone else as well.

What I don't understand is how those who are not Stage IV see this as being an issue of respect relative to themselves. Where is the lack of respect in BC.org requesting that only Stage IVs post in the Stage IV forum? How is that simple request disrespectful to someone who isn't Stage IV? I appreciate that some may not be happy with this decision, but how is it disrespectful?  And if you think about it, if the issue relates to the Stage IV forum and only one group can be satisfied, should BC.org choose to satisfy the majority of the Stage IV women or should they choose to satisfy a group of non-Stage IV women?  Doesn't it seem pretty clear what the answer should be?  Isn't it common sense?

- Lastly, in reading some of the posts here, and seeing some of what's been said, I can appreciate even more why the majority of Stage IV women feel more comfortable with only Stage IVs posting. Having terminal breast cancer is not the same as having breast cancer.  Most of us with breast cancer will live long full lives, and we will die of something else. That is not what lies ahead for those who are Stage IV. Yes, any of us could become Stage IV one day but until the day that this happens, we have our full lives ahead of us.  I don't know what it's like to be Stage IV but I do know that it's different than having any earlier stage of breast cancer. If someone doesn't appreciate that it's different, then I can see how easy it is to unintentionally say something that cuts at the heart of someone who is Stage IV. Some of the posts here seem to have done that and I think it's good that those comments weren't made in the Stage IV forum, where more Stage IV women would read them. Does anybody really come here with a desire or intent to upset someone who is Stage IV? If you find out that you've been doing that unintentionally, are you going to continue or would you immediately choose to stop? 

I get that some people don't like this decision. There are decisions that BC.org have made that I haven't liked.  That's just what happens when you participate in a large organization. You can't please all the people all the time. The question to those who are unhappy is: Overall, is BC.org still a good place to come for support?  Does not being able to participate in just one forum really change things so much for you? Does it really affect your day-to-day interactions and how you've been using the board?  For canadagirl, it obviously does, and hopefully her situation can be handled in a way that works for her. But how much does this decision really affect everyone else? Is it worth the anger and the rancor? 

bessie... as usual you make a lot of sense... even if i may not agree./.

but one question..

do you think canadagirl feels respected?

oh and by "public" i mean open and viewable to all members..

When there were a couple of stage four members asking questions about ascites & paracentesis & not getting many responses I had very recent experience with & knowledge of that from ovarian cancer but not breast cancer. I chose to use the private message system to respond to their questions rather than posting on the stage IV board because I respect their request for privacy.

Celine, no, I doubt that canadagirl feels respected by how she was treated. But few of the posts that I've been reading here been talking about the injustice done to canadagirl. Additionally, the Mods have already commented on her situation. They said that since she was clearly posting on behalf of her mother (who does not have the ability to post for herself in English), that the new rules don't apply to her and she should have been allowed to continue in the Stage IV forum. So whoever shooed her away should not have done that.  There seems to be a lot of agreement about that.  As I said in my previous post, hopefully canadagirl's situation will be handled in a way that works for her.  

itsjustme, I think we all have to decide what level of participation is right for us and where we feel comfortable posting.  As a general rule I choose to post mostly in forums where I have personal experience, but this doesn't stop me from educating myself by reading threads in other forums. Since I'm a bit of a research geek, occasionally when I'm in one of those other forums, I'll read a post that piques my interest and I'll go off and do some digging to get an answer. In that case, if I feel that I have something to add to the discussion, I might post what I've found. The good news about this being a largely unrestricted and popular discussion board is that if I post something that is incorrect, someone will come by and correct me.  And then I will have learned something new. That the approach that works for me.  Everyone needs to decide for themselves what works for them.

Beesie, I think you are very wise.  thanks for the post.