Stage IV Board

CoolBreeze · July 2011

There is a conversation going on in the Stage IV boards. People search for things and inadvertantly bump posts up in that section. Even though the posts are not very old, most all women who posted in them are dead.

This is very difficult for us to deal with.

I know it is techically difficult for you to lockdown a thread and make it not bumpable after a certain date, but it would be greatly appreciated if there could be a sticky note reminder for people not to bump old threads on the stage IV boards but to ask a question of those currently going through treatment?

It is very hard and emotionally wrenching to see all of the people with your same mets who were very hopefully posting about their treatment a year and a half ago - and know they are now all dead.

While you are there, there are many stickys that can be removed so as not to clutter the top of the board.

Thank you.

Anonymous · July 2011

Gee CoolBreeze just about 24 hours ago, I ask the moderators to delete my id and you told me if I wanted to leave to just leave. All of a sudden you are soft and fuzzy for StageIV women. Honey put it where the sun don't shine.

1Athena1 · July 2011

Misunderstood the question.

apple · July 2011

personally i like the freedom to look and post where i wish.

CoolBreeze · July 2011

I'm talking entirely about the Stage IV board. A thread like the Mojo one, still active, isn't what I was talking about. Certainly, that is a "friendship" thread where everybody knows what's going on should be allowed to continue.

Actually, I'm talking about a forum guideline rather than a rule. The guideline should be to not bump old threads in the stage IV question asking about treatment without checking to see if the poster can still answer.

This guideline would apply to an older thread, not an ongoing, conversational one The fact that somebody has died shouldn't 'stop it but the fact that nobody has posted to it in a year should.

Somebody searches for something, such as navelbine and liver mets, and then bumps it up asking about SEs or something - and every member is dead.

People - in the Stage IV section - should be cognizent of the fact that most of us don't survive long and it is hard on us to see these threads bumped for a question that those people can't answer. Maybe some are okay with it, like apple, but I know there are few people with my mets and treatment still around posting from a couple of years ago and it's extremely hard on me to see that. I want to believe I can live five years - stats say only 3% do. Here is where I like to find hope too.

There is no reason not to just ask the question themselves.

I understand it has to do with various rules on various forums. Some forums don't want a high "signal to noise" ratio so they prefer people search before asking questions in case it has been answered before. That is true on technology-based forums and makes sense to bump a common question rather than repost it.

A forum like this one is different, especially in Stage IV. We can still search but we should be aware of when we bump in that area.

It's just common courtesy - in the conversation or tribute threads, like the ones for Konacat, they should continue to be bumped.

Anonymous · July 2011

Coolbreeze:

Again, you are posting because this "bothers" you. I have a favorite saying for people like you. It's "I'm important, your not, the h*ll with you" which is exactly the tone I got from you around 24 hours ago.

I've been StageIV for nearly 5 years and I shouldn't have to take crap from the likes of you. Go back to your blog where you belong.

Alpal · July 2011

Nurse-Ann - I've reported both your posts. The mods can decide if they break BCO rules. IMO, they are rude, unkind and condescending.

thenewme · July 2011

Ditto, Alpal.

Anonymous · July 2011

Alpal:

They are right on target and the mods can delete them 50 times for all I care. As usual, they are probably having coffee and donuts oblivious to what is going on.

Oh, by the way I thought Apple was the StageIV "ringmaster" not you.

CoolBreeze · July 2011

What?? :

Nurse ann, I have no idea what I did to offend you but I apologize. I don't even think we've had any interaction so I am puzzled by your hostility. .

The mods can take my suggestion or leave it. If most people think it isn't necesary, than it isn't.

I am responding to this thread:

http://community.breastcancer.org/forum/8/topic/772154?page=1#idx_3

And, another that was bumped. I don't want to embarassed the person who accidentially bumped it so I am not going to post that one.

This the area where we make suggestions for forum improvment, isn't it?

CoolBreeze · July 2011

Nurse Ann Wrote:

Coolbreeze:

Again, you are posting because this "bothers" you. I have a favorite saying for people like you. It's "I'm important, your not, the h*ll with you" which is exactly the tone I got from you around 24 hours ago.

I've been StageIV for nearly 5 years and I shouldn't have to take crap from the likes of you. Go back to your blog where you belong.

Again? When did I ever post something that bothers me? I don't think you are unimportant. I also don't think the length of time somebody is stage IV is important but congratulations, I hope to get there someday but probably won't.

Putting what where the sun don't shine?

What are you talking about?

I will go back to my blog but I guess today I won't write about the kindness I find here on this forum.

Beeb75 · July 2011

Stay, CoolBreeze. I hate to see anyone driven away by the nastiness here. It's always the good people who go. You're great!

YramAL · July 2011

Coolbreeze-I reported those posts as well. They seem to have come out of nowhere. I really appreciate your wisdom and wit.

Mary

CoolBreeze · July 2011

Beebe, I'm not leaving. Thank you though, you're great too! .

I get a lot out of this forum and the wonderful women on it so I wouldn't leave. I'm just a bit shocked at the nasty personal comments directed at me simply because I made a suggestion. If the mods don't like my idea, that's fine with me; it was just a thought intended to spare some of us a bit of heartbreak.

The mods here are a lot more proactive about refining rules and guidelines than on many forums so I didn't think it woudl hurt...or cause a problem.

YramAL · July 2011

I'll repost the part of my post that didn't get deleted....(not sure why the rest was, but OK)

CoolBreeze-I appreciate your wisdom and wit.

Mary

Beeb75 · July 2011

I don't even try to understand the half of what goes on here. Love your blog, too!

CoolBreeze · July 2011

Thank you Mary.

cookiegal · July 2011

OK...on my old wedding board when you tried to post an old thread a message would come up.....you are about to post to a thread 72 weeks old....do you want to start a new topic?

So you could post, but were warned.

otter · July 2011

CoolBreeze, I don't think it's technically difficult for the BCO Mods to "lock" a thread. They've been doing it quite a bit lately, when turmoil erupts and posting turns hostile. They've also done it when the O.P. asked that the thread be locked because it no longer served the purpose she intended.

I think I know what you mean, although obviously I don't feel the personal .... well, I can't feel exactly what you are feeling. There is a thread that was started 3+ years ago by a woman many of us grew to know and love. She asked whether anyone thought breast cancer had "made [them] a better person." She had determined that having breast cancer had not helped her at all; and she was wondering whether there were others who had been similarly disillusioned (so to speak).

I've been wanting to reactivate that conversation, but I cannot bring myself to bump her thread... because she is gone. It's like seeing the ghost of a person I deeply cared about, and it makes me terribly sad.

Perhaps there would be a way to appeal to the Moderators to have them lock threads like the one you're describing. The thread and all its content would still be there, retrievable through a search of the topic or its participants... but no one could post to it, and it would never again appear at the top of the page or on the Active Topics list.

Hugs to you, CoolBreeze. You have lots of friends here.

otter

Beeb75 · July 2011

If the moderators do enact a locking feature after time has passed, I hope it will not apply to ALL forums/threads. There are some topics that don't come up that often and require longer history to be helpful. For example, I'm curious about pregnancy after breast cancer and I like to look back and see if people have done it and what issues they've faced. Obviously, BC treatment takes a long time and so does pregnancy so you need years to get a sense of how it worked out for people. I LIKE when threads like these return to Active Topics and new people chime in. Seeing people who have done it successfully give me hope, so I'd like to be able to access these threads and perhaps continue them for future women.

Anonymous · July 2011

Like Cookiegal... I belonged to another forum that also had the "you are about to post to a thread that is ______ months old, do you want to start a new topic instead?"

Of course, this didn't stop some people ... but I think it's a great compromise to CoolBreeze's suggestion. Makes people aware that the thread is no longer active...but they are not restricted from posting if they choose to do so.

thats-life- · July 2011

hi coolbreeze..i experienced the same odd feeling the other day when i saw the post in active topics, was interested in the topic, (someone had obviously posted on it that evening)...i didnt notice the date either, just automatically presumed it was current i suppose...as i was reading through the comments, i started thinking 'who are these women?, i have never seen them before'..it was an odd sensation...once i realised, i too had a couple of days of sadness....but from another angle, if we remember to look at dates in our 'search', and are willing to read the stories of women and men who have struggled and documented their journey before us, we may, in some way, benefit from their stories. but yes it is sad. there are members who may treasure the ongoing threads which included women who have died.

thats-life- · July 2011

susang: just saw your post, and agree thats a good idea!

coolbreeze, the earlier reference is due to your response to nurseann's post that she was leaving bco.

CoolBreeze · July 2011

That'slife, I think we can still read the old threads. I was referring to not bumping a thread. I wouldn't want them deleted of course! Bumping a two year old thread asking how somebody was doing with a treatment when she and everybody in it are dead - and it's your treatment - pretty tough to take.

It's hard to have liver mets and see that nobody is around three years later, and I wasn't aware it was that awful until I started seeing those old threads and most all the liver mets women seem to be gone.

Otter, I know the mods can lock any individual thread but I think it'd be a huge project to go lock down all of the old ones individually. It would be easier to flag them in the database after a time and have them locked (but still readable) but I don't know if this software can do that.

I said in the Stage IV section that it shouldn't apply to conversational threads that are still going. Just those dormant threads that haven't been posted to in a year or so and are in the Stage IV section. Somebody might do a search for the chemo they start, see the thread and post to it without even noticing the date.

I know nobody meant to harm anybody and the recent one that started it was an accident. But, it upset me terribly and judging from the responses in the Stage IV section and my PMs, I'm definitely not alone there.

I think the issue is the technical nature of it. Everybody agrees that the threads should still be accessable and readable.

But, if somebody has a question about a treatment, no harm in asking those who are currently doing it, rather than asking a dead woman.

Stage IV Board

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