Disappointed About Being Shooed Off the Stage IV Boards

1Athena1 · March 2013

This is so ironic. Here we all are invading the stage IV caregivers' forum, after they were asked to leave the one they were posting on.

Mods, maybe it is time to move this thread to the comments section? The stage IV caregivers, too, deserve their special place and peace. Their lot is surely unenviable as well!

ReneeinOH · March 2013

I've read every post on this thread, but haven't commented. Feel the need to echo, underline, cheer on what Joan just said.

I'm finding the support I need and trying to lend support where I can. Totally respect Stage IV's request for privacy, so I don't go there. Those Stage IVers that have the energy and time share any pearls of wisdom from their experience do so on the many other threads out there. And I am grateful.

We are all just trying to figure out how to beat, or at least manage, this beast (BC), and are doing the best we can. I feel a community and commitment to each other. It's unfortunate that it happened, but unrealistic to expect something like what happened with canadagirl to never happen. It's not going to be perfect; at times there will be inconsiderate posters, inconsiderate members. (And I hope canadagirl comes back, and everyone is clear that it has been concluded that she had the right to post on behalf of her mom.)

It's impossible to make everyone happy. I tip my hat to the moderators; they have a challenging job.

Moderators · March 2013

We agree, 1Athena1! Thanks for the suggestion; the thread has been moved to the more appropriate Comments forum.

exbrnxgrl · March 2013

Great suggestion Athena and thank you mods for making it happen.

Renee,

Thank you for pointing out that many of our stage IV sisters may have neither the time nor energy to deal with these things. Many are ill from long years, or short, of treatment, se's and the ravages of the disease itself. I am fortunate, right now, to be in good health and though I speak only for myself, I suspect that some of the stage IV ladies have far heavier things that consume them and just want to be left in peace. Thanks for your understanding.

Caryn

nowheregirl · April 2013

Just for clarification in defense of the mods and BC.org.

The forum software they are using here may be able to create private sections and creating private sections ifself may not require any money or technical expertise. However when people ask for permission to enter those sections, who screen them to see if they really are qualified? As some of you may know, I started a private forum specifically designed for those seeking for information (mostly pictures) on breast reconstruction several years ago. So far, I have 1000+ members mostly coming from here. Every single time someone asked me for access to my forum, I had to dig through all their posts to see what they had said and shared so that I could see if they really were who they said they were and if they really were legitimate enough to be allowed. If I hadn't done that, my forum could have been full of those sick people wanting to see our boobs. And I can tell from my own experience, it does take time.

With 129,865 members (as of now), I really don't think it's possible for the mods to start private sections and screen each and every request to see if it's legit. It's just too much.

Moderators · April 2013

Thank you for the clarification, nowheregirl. And thank you for everything you do with the reconstruction forum.

Winnymac · April 2013

This is a rough situation, I came here for help too. My husband is stage IV and he will never join on his own. I read the board but at one point realized that it was not okay to post there. I don't think I ever did but just from reading I kind of got that message. I do post about my side of things on the caregiver board, but that doesn't help his side of things. There is a male breast cancer forum but I haven't seen any men with stage IV there and the site is not very active, which I supoose is a good thing. I guess we fall through the cracks a bit. I am glad to have found the site but I do believe we are all in some kind of pain from this disease and don't need to be hurtful to each other.There is a lot we can learn together. I pray daily for a cure for all cancers. My dad died of lung cancer 5 years ago, so not totally new to this.

Linda

Lily55 · April 2013

Canadagirl has been back on the forum since now so it seems good place to close this thread?

Winnymac · April 2013

I apologize, I didn't realize it was an older thread, it was at the top of the active posts, but I should have looked at the dates! Still kind of new to posting much.

Linda

CelineFlower · May 2013

this thread helped me to realise that this place is not unique.

this thread helped me to realise my voice here is not important

this thread helped me put into focus that this place is a ressource and nothing more.

I feel more a lone now then i did when i first came here

the moment the mods lied about it costing "money" to make changes... i knew i had lost something that i thought i had..

but were else do i go?

sure this thread maybe dead... sure it might belong in another subforum...

but there are still people who are lefty out in the cold.

netty46 · August 2013

I innocently not meaning anything bad by it used large letters in the stage 4 form the other day and one of the ladies that just posted above made such an issue of it. Telling me I was shouting. I explained I could not see my screen clearly then another stage 4 chimed in asking me then how can I read these post. I felt she/they was taking her problems out on me. It was hurtful and I was just reaching out for help thats why I joined this forum. But its true they can be down right nasty. Its sad.

netty46 · August 2013

Celine good luck . She is nasty!

Moderators · August 2013

netty46, we're sorry that you were hurt by the comments of other members. It's true that it's a long-standing convention of message boards throughout the internet (not just this one) that using All Caps is viewed as shouting. If you need help changing the size of posts, please don't hesitate to send us a private message.

Best wishes for success with your upcoming surgery.

• The Mods

exbrnxgrl · August 2013

"Netty,
I know someone will be a long soon, but please take the cap lock off. It's the message board equivalent of shouting."

Netty,

I think you are referring to me. I didn't intend to make an "issue" out of it (thought I was just informing you). Whether on this forum, or anywhere else one posts on the Internet, caps are considered shouting. That is generally accepted netiquette, since volume and other cues aren't available to us. Sometimes, and this may not be true in your case, people are unaware of this, so we (all members, not just stage IV) point this out. My assumption is that you did indeed do it innocently without any ill intent, but having no way of knowing about your vision problem, I thought you'd like to know. If, however, you are using all caps because of visual problems, just say so, as you did. Problem solved! You don't know me, and I'm not offended, but this is the first time in my life I've ever been called nasty.

Take care,

Caryn (not nasty, really!)
PS: check your pm's. I sent you an apology. Please remember, I had no idea about your vision problems from your op.

Disappointed About Being Shooed Off the Stage IV Boards

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