Disappointed About Being Shooed Off the Stage IV Boards

OK...so this subject has me very angry.  I don't often post - but bear with me while I have my say on this subject.  Could be a long rant.  Am pissed!

After surgery and finding out node involvement - we all went to my 84 year old mothers house where I proceded to fall on her couch and sleep off meds.  It was such a comfort to me as that's where I slept as a small girl when sick.  My Mom wanted me to stay for a couple of days - I decided I would give her that - she wanted to take care of me - even tho I knew she was upset.  I was instructed to take advil every 4 hours even if not in pain.  I was able to wake myself up - one night I might have been 2 min. late in waking.  I did finally tho - only to find my Mom watching me sleep.  I knew she didn't want to wake me.  What I saw in her eyes made me very sad.  She had lost her Mother to breast cancer when she was 12...her youngest sister past away b/c of breast cancer...and now her youngest child was newly diagnosed.  At that moment - I knew that my Mother 'got it'.  Even more than I did at the time.  In fact - I believe that family members - 'get it' - they are as affected by this s**t as much as we are.  So I say to exclude anyone from a post b/c a certain stage of progession is bulls**t.  We are all in this together - diagnosed or not. I'll never forget her apology to me for passing on this gene to me....believe that?!

I believe that canadagirl needs an apology - and I'll be first to give it to her.  We sometimes go far deep into ourselves and we forget about others.

So that's my rant - sorry!  This has brought up so many emotions within me.  There is no exclusive group in this fight.

OK, all. Let's take a step back. This is not about EXCLUDING people who want to contribute; this is about respecting the Stage IV members' wishes, providing a safe, supportive forum for them, and another safe, supportive forum for their caregivers. If you feel strongly about posting in reference to a Stage IV member, then post on the Not Stage IV but Have Questions thread. If you don't want to see the Stage IV forums, or feel tempted to comment, then please take full advantage of our Block Forum feature, and you won't have to worry about whether or not your post is offending anyone or not.

Please try and keep this conversation civil and respectful. We are all in different situations, and feel very strongly. Remember there is a common thread that holds us all together -- and included in that thread should be SUPPORT and CARE for our COMMUNITY.

PS Beesie, thank you for your thoughtful post.

i'm sorry mods...but u r wrong.

IMO this thread is about canadagirl being disrespected 

I too respect you for the work you do.. as volunteers.

But i feel the responsibility falls on you to keep this clear...and to make sure ALL feel welcome. Not that i am saying you dont make us feel welcome... but i feel this topic is blurred...and more problems like this will arise unless decisive concrete action is taken

I deleted what I wrote. It's time to move on.

Please everybody, take a break, let this thread end. Nothing is being accomplished except more hurt. This thread is staying at the top of the first page for all the people who are coming to the bco discussion boards for comfort after being diagnosed with bc. I'm sure it's not any ones intention to hurt others, even if it's unintended by scaring away people who are just now visiting the boards for the first time. Please stop and think how much harm this is doing with no real resolution possible since this is an open board, anyone can read, anyone can post. Please don't think I'm unsympathetic to the reason this was started. My dad has been in hospice for a year now, he and mom live 10 minutes from me. I totally understand. I also don't pretend to know how I would feel if I were stage 4 instead of 1. Please understand that we will encounter all types of people here on this board, with all types of opinions, just as we do in real life. Please step back for a minute to think and cool down a bit. This is not a resolution.

Thank you Annie, I appreciate that.

Mods,

Thank you for your well thought out post. I don't think we're looking for a sorority, private club etc., just the safe, supportive place you've mentioned.

Maradibra,

This ran far deeper than "one or two grouchy gals".

Caryn

We have edited the Stage IV forum description to include "those posting on behalf of Stage IV patients" as well. There are times (as in Canadagirls' experience) where one diagnosed Stage IV may need advice from other Stage IV members, but may not have the means or the opportunity to interact directly with other Stage IVs.

We hope this helps resolve the issue and we can all move on...

Thank you.

I don't think it is necessarily bad that people should see this discussion. It is part of what a robust bc online community deals with.

Unfortunately, two things have gotten entangled here:

A. --stage IV patients understandably do not feel they should be burdened by the burdens caretakers face and would rather the caretakers have their own forum. The exception is caretakers who post because the patient herself cannot/will not, and needs information.

B. --ONE rude person erroneously PM'd canadagirl, who is one of those caretakers who meet the exception described above. This person in some ways made all stage IV people look bad - especially because canadagirl's alert was the first many of us had heard of a decision by some stage IV folks and the mods to make some changes.

In reality, in discussing a request to the mods that caretakers be given their own forum, several stage IV sisters took pains to address how to be as polite as possible. Proof of this reality lies, once again, in the following thread: http://community.breastcancer.org/forum/8/topic/799270?page=3#idx_61 

Obviously, this is a hard transition, and it could have been better handled, IMO, if the mods had made an announcement a priori so that canadagirl wouldn't have to be so rudely jolted - especially since she is someone who CAN post as a caretaker on stage IV. An announcement by the mods would have clarified the rules and prevented nasty surprises.

It appears that many of us have mixed feelings about this entire situation - I certainly do, and it is both healthy and necessary that we discuss them. These issues have come up for years.

I, for one, hope that whoever wrote canadagirl the pm is told she was mistaken, and that the pmer apologizes, but I am not holding my breath, so I think I will "move on" on that one.

For the rest of us, please, please read the link I have posted once again - especially the last two pages. You will see many stage IV sisters discussing their reasons and concerns in an open, humble and respectful way.

This has not been easy to decipher but my interpretation is the following:

It is the wish of at least a large plurality - if not a majority - of stage IV sisters that you not post on that forum for any of the following:

--To compare your early-stage situation to theirs and claim that you know what they are going through.

--To ask for their emotional support of YOU because YOUR friend or family member is dying of bc

--To say how scared you are that you might get mets, and ask them how they got mets

--To participate in lifestyle conversations that you have no way of being able to relate to. I am going out on a limb here, but I would say the stage IV fitness thread has to be one of those cases. Early stagers do not have vital organs compromised that could make exercise dangerous if not fatal in some cases.

You ARE welcome to post if:

--You are giving condolences, or lending your support to someone because of surgery, declining health or any other treatment milestone.

--You have specialized information about a non-stage IV issue that comes up - such as a legal issue or one relating to a comorbidity? I'm not sure about this one.

I would like to repeat my idea for a pop-up disclaimer. It may cost money but save a lot of grief in the long run.

Stormynyte: In fairness, the reason why Stage IV was the only thread with "and their caring supporters" is because that is the only forum from which so many complaints about who can post and who cannot came from. Rarely has anyone ever complained about stage IV people posting elsewhere.

I think both sides should try to see the other side. Clearly, stage IV IS part of a larger community but mostly does not want to be for reasons that are unimpeachable. Why not password-protect it and make it read only to non stage IV-ers, except for Chrissy's thread? It is what a plurality have wanted. It's not fair to the rest of us to say "look, but don't touch, or only when we want you to, and that depends on who says what." Likewise, it's not fair for early stagers to expect stage IV sisters to babysit other people's suffering.

Separation really is best and I say this with a heavy heart. 

Or at least a trial separation? How about it? If we are all miserable, we can cancel it, and at least we will have know how much we nee each other, like crazy but loving families, but maybe it's time.

I believe you explained it very well. Athena, thank you.

I have read this thread from start to finish.  And re-read it.  And thought a great deal about the issue.

It's regretable that the Stage IV ladies wish to be segregated and, like cookiegal, I feel it is a step in the wrong direction.  However, as Beesie and exbrnxgrl have pointed out so eloquently, being Stage IV is very different from being earlier stage and carries with it a whole new worldview.  I understand that they would want to have an environment where they can address issues as they wish, when they wish, and how they wish without worrying about being slapped-in-the-face (for lack of a better expression) by a thoughtless comment from someone who cannot possibly understand the complex emotional- and physical challenges of Stage IV reality.  I do get that. 

In closing, I would ask ... where does it end?  Breastcancer.org does not resemble a community anymore and only seems to provide a "welcoming and supportive" atmosphere when you remember to post in the proper forum.  Instead, there are a plethora of different interest groups possessively guarding their boundaries with no interest in sharing beyond those borders and viewing any incursions into their territory with hostility.  It's sad.  It's driving me away.  And, by the sounds of it, it's driving others away.

I will respect the decision made by the Moderators and the wishes of the Stage IV ladies.  I have blocked the Stage IV Only forum, so that I do not inadvertantly post there.

Patti, Celine,  Cookie gal, Selena, good posts.

Ive missed it obviously, but where are the figures that intimate that most of the ST4ers want their forum for them exclusively? Really it shouldn't make much difference because some ST4ers CLEARLY have not got a problem with other stages interacting, as long as it's done respectfully (of course.) Do they not count? WOuldn't it be possible to satisfy both camps?

I mentioned back a bit, about the possibility of ST4ers having their own  PRIVATE Subforum/thread, and I meant that specifically where all of the ST4 threads are open except the private/hidden/exclusive (call it what you will) one.What Im saying is rather than have one (CHrissys) I think the other way around is more workable. One for those who want their privacy, and the rest for those who want to learn more.

Again, Im sorry but "you can look but don't touch" doesn't cut it for me. Im with Celine on this one... If they (the exclusive ST4ers) want privacy, then have it, FULLY in your own thread, but why deny others wanting to venture into discussing things ST4 to gain knowledge or any other legitimate reason.  If I can't intereact without having a heavy laid on me that I've SORT OF tresspassed into forbidden territory then I won't bother at all.

Sad.

I think that too much is lost by essentially giving the vibes that, well you can post on St4 BUT youre not REALLY welcome. To me thats sending a double message. This is one area that needs definite boundaries and because thats impossible because we are all so different I see the above as the only solution. Give those that don't want to interact with non ST4ers their own PW protected thread/subforum.

They should have an open Stage IV forum for all people who want to join in, and a closed Stage IV forum for only Stage IV people. Maybe some people who are Stage IV like having an open "room" for people to talk. In AA they have closed meetings for alcoholics only and open AA meetings for everyone...

There was a young woman on the stage IV boards about over a year ago her screen name was Livingit and she was like a shining ray of hope and brightness for everyone not just stage IV those were the days when I was really keyed into BC.org and felt like I was really in a community so I am glad I had that experience.

Thanks Lolalee!