BCO , past , present and futur

Thank you CelineFlower, we will also be interested to see how this develops :-)

We will also get back to you on the history of the forum !

Celine ~ With respect for the forum experience you mention above...  I feel like you are missing the point re. not posting on Stage IV threads and making this into something much larger than the admonition to be respectful and not to post there unless you are Stage IV is intended to be.  Unless I'm mistaken, the past issues with non Stage IV members posting on Stage IV threads is that sometimes people innocently say things that are ridiculous and even hurtful from a Stage IV perspective because they don't fully realize what a Stage IV dx entails.  I know I have done this myself in the past -- wanting to help, but simply not getting the full picture or having the cache to comment.

I think a good is analogy is how many medical facilities -- especially larger ones -- have separate support groups for early stage and metastatic bc patients.  And there's a reason for that.  The two groups simply do not have the same concerns or perspective on the disease.  And I think it makes total sense to do the same here on BCO.  That doesn't mean others can't occasionally offer specific information or express caring on a Stage IV thread.  But to join a Stage IV conversation and tell those in the conversation that their tone is offensive and then insist that it's also unfair that they have a "safe" (restricted) place to vent seems like you might still be missing an emotional or state of mind distinction between Stage IV women and other women here, which is the precise reason for the rule you don't like.   As an aside, I personally did not agree with the Amy Robach bashing because I get that early stage women who have gone through grueling tx need to feel that they were strong enough to beat bc.  But I also now understand and respect the anger of being Stage IV like I never would have 6 mos. ago.

 JMHO as someone who has made the mistake in the past of posting where my input wasn't helpful and may have even been upsetting when I didn't know that, as well as someone who can't say enough about how incredibly sensitive, caring and wonderful the Stage IV women -- especially those on the Bone Mets thread --  have been to me in guiding and supporting me through a very difficult emotional and physical introduction to the Stage IV ranks.   It really is a whole different world you can't begin to understand or appreciate until it's you.     Deanna

nihani - I got into a tiff with you before and I apologize for that. Sometimes it happens, and you are right, things happen and then you move on from them. So I hope that's where we are - just wanted to say here that I really like what you just wrote. 

celine - you say:" i wish to be part of a breast cancer forum that does not accept discrimination in any form..why wouldnt i speak up here?" 

So what you want is to be part of a forum that 'discriminates' against all people who don't have BC, but you personally feel like you're being 'discriminated' against? On one thread you say that you and your husband run online forums - so why not just start one of your own and then it can be however you 'want' it. It seems to me that some of the stage iv women 'want' to be able to have a thread that is specific to their issues. And I have seen this topic come up again and again and those people end up sobbing because it is so difficult for them to keep having to explain why it is that in some way their situation is different than yours. I don't see how that is being supportive - which is what you claim to want to do. 

celine.....Although I admit I have been following your recent campaign like a "moth to a flame", I have to acknowledge it is becoming physically upsetting to me, as well as emotionally.

I cannot see any hint of "understanding or compassion" in your words, and I hope for you, that the meaning everyone is trying to express to you, never reveals itself to you in a tragic, painful way. You likely will continue with your quest, but my ears and eyes will no longer hear or read about it. For me, association with your thoughts ends here.

nihani - thanks (hugs) 

celine -

"and i guess in one way ..you are saying..accept it the way it is or leave...am i right?"

No, not at all. What I am saying is that I do not understand why you can't understand that just by being on a breast cancer thread you are participating in 'discrimination' (given how you appear to define 'discrimination'). It seems like people have explained this over and over again in as many ways as they can and yet there continues to be this push coming from a very small handful of people that is completely unnecessary and ends with many people hurt and angry. It seems like when there's a thread that says, "Stage IV Only" that it's pretty easy to understand - everybody seems to 'get it' and yes occasionally somebody who is not stage iv might post there if they have something relevant and supportive to say - but it should be pretty apparent that there is a 'special' if you want to call it that, sensitivity, needed in this area (meaning the thread). 

And then too, it also seems like you are changing your position - is having a place for stage IV only a bad thing in your mind? Because that's the impression that I'm getting (I could be wrong). Let me try to word this carefully....

Just as there is a forum that is dedicated (semi-exclusively) to BC patients which other people can read but generally are dissuaded from commenting on, so there is a forum within this forum which is dedicated (semi-exclusively) to Stage iv BC patients which other people can read but are generally dissuaded from commenting on. 

Basically you can call all types of categorization of individuals 'discrimination' - but generally 'discrimination' is a word which has the connotation of 'harm' attached to it. If you say that you are being 'discriminated against', it's like you are being acted AGAINST in some fashion. But the reasons behind having a separate stage iv thread really have nothing to do with acting against you in any way, rather it is about creating a place where people who have specific concerns can discuss those concerns with eachother. 

 Good god...enough is enough. Move on to your next drama filled adventure!

Here's where you get to see what a silly goose I can be. If I had a bit of sense, I would refrain from further comment, but what the heck!

This is not about a "techie issue". I am more than sure the mods could do as you suggest if that is what they wanted and if the greater bco community wanted it as well. All of us are free to make suggestions, such as you have done. But, perhaps neither the mods nor the community at large want or need the suggestions you have made or, indeed, suggestions that others have made. I will even go out on a limb and say that I have no idea if the majority of stage IV women would like to see a private forum or if they are satisfied with the current arrangement. So, trying to create/suggest change is not a bad thing but we all, at some point, have to accept the fact that in a given community, group etc., our suggestion may not be what the group wants. That all sounds very democratic BTW and I'm not sure that BCO is a democracy but that's ok. If I don't like it, I can leave!

Caryn

Okay! First, Celine I DID view the posts where you received replies from some of the Stage 4 members.  I feel that is disheartening that all members here can not treat each other with respect no matter what room we are in or post in.  Celine I do feel that you were treated unfairly. I recently posted in a stage 4 room regarding night sweats because no other category was discussing it.  After posting a comment about a natural remedy today, in fact, I felt rather unwelcome too with undertones.

Really???  As I have said before, none of us are numbers, percentages, stages....we ALL have this horrible disease.  I may not be stage 4 but I could still die tomorrow from this cancer.  Here is an example.....

When I went through chemo, all of us in the room were chemo sisters no matter what stage.  During one session, the woman sitting across from me went into cardiac arrest and the onco and nurses immediately did manual CPR till the paramedics got there.  I have no idea if she survived.  She may have been stage 2 while stage 4 ladies may have had an easier time with chemo.  Which goes to show my point here... we are ALL facing mortality issues!!!!!!!!!!!!

I am disappointed that a posting by a stage 4 member stated they think some of us at other stages visit their room to gloat and make us feel lucky that we are not stage 4.  Once again really?  I truly have a hard time believing any member out here could be that catty.  Personally I am Triple Negative and can become stage 4 any moment and could already BE stage 4 without knowing and appropriate testing.  I want the knowledge on how to fight, I want information so that I am prepared, and on and on which is what this site is about also. 

I have 2 family members that have bc one being stage 3c and one just diagnosed stage 4.  I want the knowledge, to be helpful, to be sensitive, to be encouraging.  I refuse to feel like an "intruder" in stage 4 rooms.

This is all ridiculous.... as bc sisters we should try to all be supportive of each other and feel welcome  into every category.  I don't think anyone has the purpose of visiting "other stage level" rooms to be snarky or insensitive.  And Celine you were only supportive and helpful when you got "pounced" on.