Lower Stage Posting on Stage IV Forum
Comments
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and the software platform Anne... I don't know that is what it is called actually.
i have been a moderator ((what an ungrateful job that is).and have found that over moderation opens tooo many cans of worms.. people hate it and it backfires and then there are all the complaints.... it is nice to have a policy and all but lightly seasoned and applied. imho. I think we are generally very tolerant but sometimes it does get hard especially when arguments begin.
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The Mods will no doubt make some changes, but in catching up with all the posts on here now it seems certain that, whatever the changes, there are sure to be some that will remain "disgruntled." There are just too many degrees of what is "acceptable" and what isn't. I don't envy the Moderators this task, and I think they are being very comprehensive in gathering all the opinions on this matter before they make further alterations to the Stage IV Forum.
p.s. I posted without seeing Apple's post above, but I think I am making a similar point.
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I am uncomfortable at the hectoring tone that has crept into this thread. Perhaps there should be a token fee to join this discussion board (any area). That might supply the funds to provide for the in depth monitoring that could prevent some of these flare ups and perhaps professional facilitation would help us avoid wasting our precious time unraveling the tangled threads of proper vs. improper discourse. Perhaps a retired litagator would like to volunteer to take the reins.
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I am a moderator myself, on a top 10 Big Board. At least it used to be, I don't know if it is anymore. We had top 10 traffic on the internet at one time. So, I have always been very supportive of the mods here and I am a rule-follower.
That's why I don't understand why a simple question can't be answered. As a mod, I've never ignored a member who had a question, even if I didn't think they'd like the answer. Being ignore creates hard-feelings. Without faithful members, there are no eyes and without eyes, no advertising and without advertising, no forum.
And, I did ask in PM first, it's not like I didn't try to be discrete.
When you have a large forum, clear rules and expectations that are posted plainly is not over-moderation, it makes things easy for everybody, including and especially the mods.
Since the mods have never addressed what is appropriate for the section in question, that is why this topic comes up over and over. And, if they do have any idea, they are not sharing, which is puzzling.
My question is not of a technical nature so it doesn't require money, time, programmers, meetings, consults, or years of deliberation.
Just a bit of kindness and understanding and openness about the forum we all participate in.
EnglishMajor, you don't see a problem, which is great. But, many many of us do and so why not address it?
As for the mods time, please check and see how many times they have posted since this thread began. They have asked us for our ideas for what is apparently going to be a new logo and a lot of us took the time to answer. Yet, our simple question is being ignored.
It is not hectoring to want an answer to a question, whether it is a scan result or a rule on a forum you post on.
I am apparently not going to get it, or even be addressed. And, I don't find that good moderating and I am speaking as a moderator.
Just my opinion. As Jill said, we can't change things. I just find it rude and disdainful of us.
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Yorkiemom....I have been following the thread and Wow....you really opened a can of worms didn't you? I certainly have no business having an opinion one way or another, other than to say that we all started this journey in the same place with the first moment we felt "it" or got a call back from our doctor and if we all just remember how we felt in that moment and try to remember to treat each other with respect, dignity and compassion then I don't think this would be as much of an issue. But, I have not walked in the stage IV ladies shoes, so I really can't know how they feel. I know that I feel nothing but awe at their courage and compassion for the battle they fight everyday. Personally, I have been touched very deeply by reading some of the stage IV women's posts and I would be sad to not have access to their wisdom and understanding.
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For Pete's sake....everything was fine on this board until someone (a virtual newbie) joined and made a stink. Since then the mods have split the Mets Forum into three seperate sections to try to make some of you happy. When is it going to be good enough; I mean, seriously? You can't stop people from posting stupid things, it's a PUBLIC forum. I did post a message on another thread about something I would like to see....perhaps that could be the "private, locked, whatever" forum for those of us who no longer want to participate in the one we have now. I had a serious question about a treatment I was going to do and had no clue where to post it. Thank GAWD, someone who wasn't a metster took the time to answer me. Sheesh!
Edited to add: EnglishMajor....hell of an idea! Great post.
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Alll I wanted was a question answered.
Gracie, I never said people shouldn't post to Stage IV. I don't think it should be locked, hidden or protected. I don't think there needs to be pop-ups or flying monkeys with signs telling people to stay away.
I only think there should be guidelines, since the other day, as numerous people have commented on, the entire front page was filled with rude, insensitive questions of us. Thousands of forums have guidelines, why not this one?
With guidelines, we can let people know where else to post.
If the guidelines are "anybody can post anything" that is acceptable.
I just want to know them.
Being a mod myself, I like to follow rules and don't like to fly blind.
Too many people are not reading or understanding my point and we all know I don't speak for everybody. And, the more I try to make myself understood, the harsher I sound and that wasn't my intent. The mods, through their silence, have made it clear they won't answer my question.
But, I have to add, that at least the mods allowed this conversation to continue, so I thank them for that. One of the rules on my own forum is "don't question the mods in public." But, of course, we answer privately.
I tried but it's time to give this particular conversation up. I have pink pants to take back to the store!
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Ann: I have followed this thread and I understand your point entirely
I think its just a hot topic and tempers are high. I am stage 3a initially, now 3c after a petscan and better US (not that that matters). My interpretation of your biggest issue is that the mods have been slow at correcting/responding to this and other hot topics . They are always hovering and responding with koodos, condolances or a link to BCO help, but they don't seem to have a great presence moving threads to a more appropriate forum. Correct?
Your solution is to have a more specific set of rules for the stage iv forum with a more active mod to moderate the forums. I do think I higher presence in stage IV is not inappropriate, given the high volume of stage iv posts. (not a bad thing
) I am not trying to say anything bad about your ideas. I just want to see if we are interpreting your ideas correctly Whatever decisions are made, I hope that some steps are take to amend some of the inconsiderate posts quickly. I think a "flag this post" without penalties is a great idea for the whole forums. I have often recommended (in other areas) for women to move their posts to elsewhere to get more answers.
Sorry, I have chemo brain but on a good day I am not nearly as articulate as many of you, so please forgive me if I interpreted wrong. Best to all and good luck to the mods coming up with a SPEEDY solution.
PS, I don't think IVers should have to pay an extra fee for extra help.
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Most of the stage Ivers just want it left alone.
Lets just leave it alone. Why are others wanting to change it and make extra work for someone.
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Ann, I think those are very smart suggestions.
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This arguement has been going on for years and will probably still be going on after I am dead. The easiest solution is to not post Stage IV posts in active topics. Those that come for support or to check on a friend can do so without feeling like they eare stepping on toes and someone doesn't post something totally inappropriate in this forum that is meant to be for ladies and caregivers of a stage IV patient. I have never felt it was inappropriate for a caregiver to ask questions about a scan of their loved one or ask questions they just don't know the answers to. That is what the forum it for.
When I left I kept seeing posts of people that would say they had DCIS and are so afraid of stage IV, what can they do so they don't progress because being one of us is the worst possible thing that could happen! Things like that are inappropriate.
Also, chiming in saying how many more tx do you have just look at it as only 3 or 2 more to go and it will be over. That is such a slam because the person that posted has no real clue and should look into breast cancer better.
I welcome any support in my behalf! Anyone wishing to offer support or help can feel free to PM me if they are afraid to post. I wish the mods would quit saying we are working on it and try the solution everyone is recommending for a frew months. How hard can it be to eliminate pointing at 1 fourum to grab the most active topics? I'm not a code writer but know enough to be able to figure that one out...
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I hope there is some resolution. Three years ago I came here as a newbie..frightened out of my mind, because our biggest personal crisis is our biggest crisis, which often results in ignorance to other's issues. . At first I connected with those of a similar diagnosis but as time passed...every single ache or pain made me nervous and sick. I did reach out via PM to a few stage 4 gals looking for answers to my "supposed" symptoms. I received nice emails back but in hindsight, if there had been a mention on etiquette and proper forum to post or to PM in Stage IV...I never would have posed my queries. I would have gone to other forums. I have posted condolences to gals like Konakat/HeidiHo etc on stage IV because they particapated in a wide variety of forums so we all got to know them in some small way. I hope the resolution involves respect and privacy for the stage IV forum while recognizing that lower stages have connections to their commrades that didn't start out as phase IV. A little educational blurb at the posting level could go a long way. I never would have intentionally asked a stage IV gal to help me self diagnose my symptoms if there had been an educational blurb before I posted. As a scared/naive newbie... common sense wasn't my strong suit.
Hugs to all and a remindert that we are all in this together and ultimately want the most comfort and level of respect for all.
hugs
beth
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I've been keeping my opinions to myself because this topic seems to be invoking a lot of strong emotions, but I've decided that I need to show my support and agreement with Coolbreeze. It's isn't right that I've been content to let her speak for me and let others assume that "most" of us want things to stay the same. I think it's totally reasonable to have specific rules and guidelines for posting in Stage IV forum. Many of the other forums I belong to require you to "join" the forum before you are allowed to post. In this way, the rules can be stated and agreed upon before anyone has the chance to start posting. That would help with the issue of someone not realizing where they are posting or how Stage IV is different. And, it allows anyone to read the forum to fnd the help they may need.
I don't want to keep lower stage women or family members from posting. I'm all about receiving helpful information and support regardless of who is offering it. But, unfortunately, some people have a difficult time understanding if what they want to post is appropriately helpful and/or supportive. That's where having clear guidelines in place and an active moderator would help.
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HI Folks,
It is Melissa Mod. We are sincerely listening to, and reacting to, your comments. We have made changes in the past to this forum, and will clearly need to make more. We are coming our with a new, clearner version of the discussion boards in about 4 weeks, and were hoping to collect these comments, and roll the changes into the new version. However, it appears rather imminent suddenly. We try to roll changes together where it makes sense, so we aren't just throwing bandaids on issues.
That said, we promise you that we will consult with our tech team first thing (Central time US) Monday to see what changes could be made sooner (immediately).
We truly understand where you are coming from, and hope that you understand that there is no clear-cut answer to please all.
Have a restful Saturday evening and Sunday.
Yours,
Melissa and the Mods
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Thanks Melissa for this information.
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Thank you mods for your care. IMO It really does feel that you are working hard to listen to people's concerns/questions, and this is an enormous improvement over the last year or so.
I will never tire of saying that we are a board separated by a common diagnosis (and each stage is a forum separated by a common stage). Just as England and America are often said to be "separated" by a common language.
The point - which should be obvious - is that we are all individuals with unique takes on our experiences.
I don't know what it's like to be a breast cancer patient.
I don't.
I only know what it's like for me, "Athena" to be one.
I agree with the sisters who emphasize that there is no "us" versus "them"; that EVERYONE has the right to post in, discuss and suggest for any part of BCO. No one "owns" a stage or diagnosis.
No one owns an experience. No one speaks for me, you, him, her but me. This is only about etiquette, consideration and what for me, personally, has been a useful education by some stage IV sisters on their point of view and how certain other posts affect them. Speaking for myself only, I benefit from this education. I'm sorry that they are burdened with providing it. The last thing you need on top of horrible illness is to have to advocate for yourself. That's one horror I can personally identify with, in a way.
End of --hopefully self-evident -- platitudes. :-)
--"Athena," a stage IIB-er who has no idea what any other stage IIB-er thinks of this, let alone any other BC patient, any other woman, any other American - or any other lioness.
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I would also like to apologize to my Stage IV sisters, I don't think I have ever gone in there to read anything because I am fearful of being there. I just now did a search of the times I posted in that forum, and I think it was a half-dozen times, and nearly every time I did mention how come I was in there, which was usually because it showed up in Active Topics list, or someone mentioned a topic in another forum, whatever. Most of my posts were when I first came to BC.org so I didn't know my way around, too.
Mods, one way to make it easier for folks to see that the forum is only for Stage IV, is in the writing below the title that indicates it's just for them, put that part in boldface. As for Active Topics directing people there, could be the boldface will be seen even tho it's way up at the top, but perhaps add it in a color so it might draw attention to itself. Or could be adding a couple stars before and after the phrasing of being just for Stage IV plus the other bold color stuff would really take care of it.
I remember I wound up in a Lymphadema Forum, because I thought I might get it after surgery, and I got into a topic I was reading and I noticed the girls there were joking around, and so I joked too, but it was not appreciated, so I quickly apologized and got the heck out of there! So, it's very easy to appreciate, especially in the Stage IV forum, that no matter how well-intended or basically neutral an out-of-place thread or post might be, it will be taken for good reason as offensive to our Stage IV sisters, and again I apologize for ever posting in there (I think last time was back around Christmas), and I wish all of you the very best. GG
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Maybe SheChriple is right by suggesting that a I create a whole new account for my Mother. Would it make the stage lV people feel any better if they found out I was being sneaky and posting under her account? Would they resent it? I don't know. I could let them know up front that I was posting for her under her ID, but that would still be me posting the same things I would post under my own ID.
Peggy
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i wouldn't worry Peggy.. you are there.. it's good.
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Peggy,
You do not need to change anything. Your comments, questions, etc. are very appropriate and welcome.
IMHO - the crux of the problem is NOT lower stages posting on the Stage IV forum. IT IS when someone posts on the Stage IV forum without consideration, without tact, and wanting us to help answer questions that even we at Stage IV can't answer, can't help, etc. For example, the rash of postings last week of "Help me, my mother is Stage IV and won't ..." "What can I do to prevent this from progressing so I don't end up Stage IV" "You are going to be great, I went through X treatment and I'm fine (from Stage I person)" Actually Coolbreeze outlined most of the posts that were there previouly.
When I first joined, the wording for Stage IV was different and stronger. It should be stronger, something to the effect of: "PLEASE RESPECT THE STAGE IV FORUM! This forum is for those dealing with Stage IV and Metastatic Disease. They understand and know that this is a terminal issue. Be aware that these sisters and brothers are facing different difficulties in their lives. (Do not ask for help in dealing emotionally with your loved one, they have enough trying to help their loved ones adjust.) PLEASE RESPECT THAT THE STAGE IV FORUM IS FOR THOSE WHO ARE STAGE IV, THEIR LOVED ONES, AND CAREGIVERS" (REALLY BOLD)
The multiple postings that really bother us seem to run in spurts. I wish we could easily flag those for the moderators to move them. (Another section added to Report this Post - "move to appropriate forum")
I do not believe the new sticky of "If you are NOT Stage IV but have questions please post here" is going to work at all. In fact, it is really going to become what my dad calls a "donnybrook".
Removing the Stage IV posts from the Active Post pop ups would help a lot! (This can be done, the Alternative group has been successful with this tactic.) Those of us who are Stage IV know to go directly to the Stage IV forum with the drop down tabs. And we can "favorite" those threads we want to follow easily.
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(((((Peggy)))))
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We already have people who are not stage IV posting about friends/family and completely ignoring the sticky at the top. One begins with the statement that her rambling post is for the purpose of 'getting it out." I contend that people should not be "getting it out" on us, but should be posting in the caregiver section.
It didn't take 12 hours for that to happen. I personally LOVE the idea of the sticky, but people have to read the stickies. Since there are already a bunch of them, I am not sure they do. And, there are no rules - again - for who should post to that sticky and who should not so I'm starting to think it's just going to be an extra thread or sticky and the same thing will continue.
I'm not sure what a donnybrook is?
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A "donnybrook" is something that takes more effort and energy to do. It is a flooded river, full of trash and other stuff, is crossable but is going to take a lot of thought and time to weed out what is usable or workable. Comes from the scottish word to depict an overrun or swollen stream/river/brook.
Missed the "getting it out" thread (glad I missed it), must have been moved and/or deleted.
I really think the explanation on the Stage IV forum needs to be HIGHLIGHTED, BOLD, AND STAND OUT and be STRONGLY WORDED. And remove all Stage IV threads from the Active list. Those of us who are Stage IV know where to go. Those who come in the future will have to search for it in the forums, and will read the STRONGLY WORDED explanation.
It won't stop ALL the clueless remarks, it will help to curb them.
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sincitydealer, this is to reassure you that there is no reason you should not continue to post your questions about your Mother's care on the Stage IV forum, as you have always done.
scuttlers, although there isn't a specific flag button or link now, everyone can, now as always, send a PM to the Moderators name to let us know about a thread that seems out of place. Some regulars on the board have done this all along.
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I feel so invisible.
Thanks Scuttlers, I learned a new word!
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This issue has worn me out ......... I would be broken hearted if my daughter started posting here for me and received a rude response :<
I come here to support and be suppported...not to fight. If I don' like a thread, I ignore it completely or send the person a nice PM.
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I think things were fine. The mods moved inappropiate posts when they saw them or they were pointed out. The direction this thread is going hurts so many. I like what Chrissyb has done but I'm sad that anyone thinks it's necessary.
I think family members and caregivers should be welcome to ask about treatment/symptom questions about their Stage IV family members.
I think posting questions about how to treat or act around that family member or about how they themselves are feeling overwhelmed are out of place. We have enough dealing with the mental/physical health of our own loved ones. That's what the caregivers forum is for.
And the questions from lower stage asking about possible mets symptoms is definitely wrong. That's what the worried about mets or recurrence forum is for.
As far as treatment and SEs some are universal and some are stage/treatment length specific so posts about them need to be considered carefully by the poster.
It always makes me uncomfortable when someone feels the need to apologize for their post. If it is relevant then it shouldn't matter who's posting it.
There may be some formatting changes that would be beneficial (making the sensitivity statement bolder, adding a "report this post" link for just letting the mods know something might need to be moved that has no other consequences, better indicating Stage IV forum posts in active topics, and more moderation of the Stage IV posts.
But there are always going to be the random mistakes and insensitive posts. There's no way around this in a public forum.
And why are "frivolous" posts - which I enjoy by the way - appropriate in the Stage IV forum acceptable just because they're made by a Stage IV poster? There are forums for humor and games so wouldn't they be inappropriate too?
I think there will always be someone unhappy - you can't please everyone.
I think we should give whatever changes are in line a chance and maybe further comment once they're in place. That's my two cents for whatever it's worth -
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A response to posts that remarked about Newbies inadvertantly wandering into the Stage IV Forum, and, in their newness and terror, writing inappropriately...
Due to popular demand, the 5 POST PER DAY restriction for Newbies was lifted a year ago (can't really remember when exactly) but that does add to unlimited posting in all the forums by persons who may not be the most composed at the time of the posting, and the least familar with the site. When I joined, and was limited to five posts at first, I know that it made my read-to-post ratio much higher, and gave me the time to get acquainted with the website. It was changed so that Newbies, who have the most questions, were free to post them all. I get that. One by-product, however, is that you can get posts all over the place, and I think the incidence is higher now without the limit for Newbies. Just an observation.
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I agree Elimar. The 5 a day restriction also made me wonder why it was in place and, therefore, more cautious about what I posted because I figured newbies must be posting inappropriately. It made me spend much more time getting familiar with the board before I began asking a lot of questions. I'd forgotten about that!
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