Lower Stage Posting on Stage IV Forum
Comments
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"Thank you all for your ideas. We are looking at every suggestion, and are working on how to make this work best for everyone."
That isn't really an answer to the questions I've been asking, twice via PM and now once in public.
So, I will repeat
"What is appropriate to post there and what is not?"
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I'm having a bit of a meltdown tonight re. some of the posts. In my mind it's not so much "Lower Stage Posting on Stage IV Forum," but "Needy, Inane, Completely Insensitive Posting on Stage IV Forum." I'm the queen of let's-look-at-everything-from-every-angle-and-all-get-along but I gotta tell y'all... I'm exhausted! We're neither doctors nor shrinks nor baby brokers, for the matter. Coolbreeze takes heat all the time for being outspoken about what's really going on, as Elaine D does, as Lena did... all refreshing voices and much needed in my opinion. And there are some very compassionate, knowledgable lower stage ladies whose contributions to Stage IV have been most welcome. Maybe we should elect a president, vice president, and secretary of state of Stage IV and they could veto all inane, inappropriate, or insensitive posts?
Thanks for letting me vent. Ugh.
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Leeza-in-Ky - the place for you to post would be "Not diagnosed with mets but concerned". Many people live with stage insecurities. In Stage IV all doubt is removed. That is the sensitive part. If you HAVE doubt, you are automatically better off.
Beesie, mine is not a perfect solution by any means, but it may prevent at least ONE of the misplaced thread on Stage IV that have cropped up recently.
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I am one who has posted on stage IV threads being diagnosed DCIS. I post support. But, I am more than my DCIS diagnosis. My mother was diagnosed stage IV, I've sat through alot of chemos (not my own) gone through WBR with her and hospice and cared for her while she passed away at home. I think sometimes we need to remember that a persons diagnosis isn't all that we are. Life happens too.
That being said- I will only post now saying that I am sending strength to the stage IV person- if I say anything at all. We get to know ladies from other threads and care for them but tact says don't post because it is IV.
There is a fine line because we all read active topics and follow the lives of these incredible women and feel we get to know them. I cry when they suffer and cheer when they triumph!
I don't think most mean any disrespect when they post, most just try to help or support the other person. But I do agree that the posts that should go to concerned about mets should be posted there not on stage IV. There needs to be a camaraderie amongst the group not someone to answer to someone elses fears.
I hate that I feel I can't post but understand why, in general, I shouldn't. Even if I might have something to add to WBR or hospice etc. I respect the wishes of others and willing to stand back to respect them.
I will add except when it is someone I know from other threads, in which case, I simply sent hugs as to not upset anyone, but let that person know that I support and care for them. A great deal in fact.
There are so many other things to worry about.....
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I don't know why this is hard for anybody, but since it seems to be.
Rules for the Stage IV Section:
None Stage IV members may post in the following ways:
DO:
1. Post in a thread if you have experience with a problem a member is asking about. If your family member had rads/surgery/clinical trial for their mets, it's fine to share their experience. If you have expertise with a financial/work/insurance situation that will help somebody who has asked - post away. Helping is fine.
2. Join our funny, non-cancer threads and make jokes and share silly experiences. If it makes us laugh, it's a winner.
3. Post support in a thread where we share a negative scan result, a triumph, or something about our lives. A "congratulations, I was pulling for you" is welcomed support. But, please note: an "I get scanxiety with my yearly scan too, but it's always fine" is not support. I've had five scans in 2 months, #1, and remember, the next time ours is not fine, we may only have two months to live. Make sure you don't tell us how you or somebody else had it worse than we do. Not helpful.
DON'T:
1. If you or a family member has a twitching eye, a painful knee, a headache, don't ask us if it's mets. The proper place for that is the "not diagnosed with mets but worried" forum. And, if you post there and don't get a response, that does not give you the right to ask it in Stage IV.
2. Don't ask us why we got mets. We don't know. And, by implication, you are saying it can be prevented.. It cant.
3. Don't dump your family problems on us just because you have somebody in your family who has Stage IV cancer. We have our own family problems. Please post in the Relationships section.
4. Don't post in order to ask us to "share our positive stories" so you can comfort somebody else. We don't wanna.
5. Don't describe your family member's symptoms and impending death in detail and ask us what to do. It's upsetting because it will be our future, and we don't know. Call the doctor if you don't know what to do.
6. Don't tell us about the miracle treatment that rid your cousin's best friends father's uncle of their cancer. We don't believe you.
7. Basically, don't ask US to support YOU as you deal with a family member's illness. You can get support in 20 other sections of this forum. We know it's hard and we are sorry. But, we are worried about our own families and haven't figured out how to help them. Maybe we want this area to be a little break from worry about families and a place we can think about ourselves. Please post in the Caregiver's section as other caregivers will be your best support.
8. Finally: Don't think you understand what it's like to be Stage IV because you are scared at Stage 1. Your fear of recurrence is not the same as what we go through every second of every day both physically and mentally. Before you comment, THINK about how somebody who has a terminal disease might take your comment.
And, we DO understand that people make mistakes and post by reading the active topics. But, what is happening on this board right now are not mistakes. There are just too many topics started on the subjects I mentioned above for it to be an error - it''s a cultural problem here on the board at this point.
And, finally, another comment for the mods. You said:
We are looking at every suggestion, and are working on how to make this work best for everyone. Yes, it's taking a while, but we want to do it right and that may involve budgeting for some technical work too.
I'll say it's taking a while. Here is a thread from 2009 where the EXACT same points were made as I made in this thread:
http://community.breastcancer.org/forum/8/topic/730436?page=1
(I guess it just goes to show I haven't had an original thought.)
I was told this argument happened back in 2008 too. So, how long, exactly is it going to take to help us with what appears to be a recurring issue? The problem is easily solved - post rules and enforce them as moderators.
I guess the fact that many of the Stage IV women who posted to that thread in complaint are dead and the early Stagers are still here makes it easier to ignore.
Someday, I, too, will be gone. -
Im one who always tried to respect the stage 1V threads at least i hope i did. I believe the stage 1V ladies and only them have the right to make this choice and what ever they decide would be the right choice. But I hope they dont lock it out as i have come to care so much about them and follow there journeys and hope and pray for them every single day. What i dont understand is, the way the forum is set up why no one see it, when i click on Active topics it reads all across the board... Forum topics-Topics created-Last post- and unread, when you click on a topic in what ever subject you want to read when that comes up all you have to do is look to the left and see what thread it ism in my opinion its not hard to see. How about when someone new registers and every time someone logs on a big box appears and says what ever it is you want to say about respecting there privacy like it already does and so on... and you click agree to this and it takes you straight to the where ever you want to go.
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I'm just gonna ditto everything Ann has said on this thread.
As far as the technicality of it goes, can you set a cookie where people can self-select as regular posters to the mets board? If they don't have the cookie, they get a popup warning similar to what Ann has above on the dos & don'ts. This would be similar to the popup you sometimes have inviting people to participate in XYZ survey or whatever.
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Athena- I have one last point to make, then I'm back to lurking.
You are right: lots of patients have stage insecurities. But, I haven't seen any in my situation right now: Multiple PET scans showing concern, elevated tumor markers and Oncologists arguing over me being stage IV or having multiple primaries. The way the timeline fell, and my insistence at starting chemo back in Dec 2010 rather than waiting 2 more months (more surgery and recovery) has left me hanging for all this time.
Without going into the sordid details of my situation, I can tell you: there are a few of us that it may take a few years to determine what is going on.
other than once again stating: I dont have any intention of posting on the stage IV board. I simply read it because I feel like that's closer to my situation. If the board is locked, I lose that assistance. I'm done explaining.
Frankly, I have no say in the matter and after being put in my place last night, I have decided that I must continue to lurk. If for no other reason than my sanity. I've been on this limbo for over a year, recent surgery has ruled out ovarian cancer. So, after recovery, if my next PET lights up again, I'm on my own.
(And, yes, I'm very touchy about my situation. Why? Because I'm an outlier. I dont fit the normal bell curve when it comes to BC. My main Onc is wonderful. His recruited Oncologists are fantastic. But, even they admit there are a few of us that have to wait for long periods of time to get a true picture of what is going on. In the mean time: I don't discuss this situation with a support group or the ppl I know that have breast cancer, because I make them nervous. Vandy denies me access to a Metformin trial. And I just keep living my life, as an outlier. (That is a statistical term for those who don't know.)
Back to lurking... -
Can't we all just get along?
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.. maybe it's just as easy as not having the stage 4 threads go into ACTIVE TOPICS.
someone probably already said that. How could i remember? (little joke)
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very well said in response to Cool's questions!
I'm guilty of posting there once or twice...........I have new eyes now.
Thank you so much
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CoolBreeze PMed me about this discussion, but I'm not sure I can be all that helpful. I do want to say, though, that I hate finding I've been stumbling about in territory where I don't belong. The thought that I'm causing pain makes it even worse.
At the same time, I do a lot of work on the web, and I mostly don't read the discrete side-messages I see every day unless something isn't working. I probably don't even notice most of them.
It ought to be possible to have a required question on the initial form when one joins that triggers a pop up warning for the lower stage sisters when they are in a stage iv discussion. Something positive about the need to recognize that this is a forum with an overriding purpose, etc. -
I agree with everything coolbreeze has suggested except number 1 in her DON'T list. I ask questions for my Mother in the stage lV forum because she IS stage lV. She's NOT stage l, ll, or, lll. She isn't just diagnosed, or "not diagnosed with mets but worried," either. She HAS mets and lots of them. She will be 84 in two months and isn't computer literate. She asks me to post questions sometimes, and some I think to ask myself. I am her voice on this board. I usually get quick responses from many women, and it's been very helpful. If someone wants to help then I don't see the harm. If they DON'T want to help or CAN'T help, then they can ignore the thread. That's okay, too. It takes very little effort to scroll right past the topic.
I have tried to give as much support as I get. It might not be much, but it's all I have to offer. The caregiver forum is very helpful for moral support, but many people on that forum DON'T have stage lV friends or relatives. They can be of little help to me. As I've mentioned before in several posts, my first post was in the caregiver forum, and it took four months to get a reply.
Peggy
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I am my Mother's surrogate. She can't even dress herself or write a check much less use a computer. By blocking me from asking questions on the stage lV board it's like blocking my stage lV Mother.
Have I made some posts that have asked for a little support out of my 2,009 posts? Probably, but most have been questions to help my Mother.
Mods, please don't block the caregivers from stage lV. There has to be some way to weed out the inappropriate posts. Don't punish all of us.
Peggy
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Peggy,
I have no idea how to accomplish some of these things, tech wise, but you are not one of the people that is causing concern! Caryn -
GUILTY and I promise to be more careful.....
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I think CoolBreeze's rules are to the point -- the key here is that the Stage IV forum should be for support. Only thing I would add is that there are several caregivers, including Peggy, who are active members on that forum, and I would hate to see them locked out. What sets those caregivers apart is that they both seek and provide support. What I would like controlled is those posters who come only to ask for support, and then spend no more time on the forum once they get what they need.
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Peggy: perhaps you could create a separate log on for your mother, so when you are posting on behalf of her (stage IV) it will be clear.
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Oh gosh. Peggy shouldn't have to pretend here--it's hard enough on her. I don't think many are in favor of locking anything. But I do think a reminder of some sort is appropriate. A reminder to be sensitive to members of our community who are going through something unique and challenging would hardly be an imposition I would think.
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I was going to stay out of the fray, but seriously? Locking people out? Have fun weeding out who you want and don't want in your club. Unbelievable. While you're at it, see if you can find the lady faking her Stage IV diagnosis....really (we have the same onc). I don't imagine you want her posting. This family member is o.k. but this one isn't....how rude. Good grief...If you think turning it into a private club is going to solve your problems...doubt it. This is so nuts.
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I think the lock-out is a horrible idea. And Peggy, you should not have to defend yourself! You, leprechaun, Bernicky, alicia, pizzadad, silentbell, and so many other "caregivers" have been so sweet and supportive of everyone. And so have many, many Stage 0-3ers!!!! The majority! I think this is just about being mindful and looking and thinking where and what you post. People are so eager for answers and help that they don't consider their audience. And the people who are "apologizing" on this thread are not the offenders. This is turning ridiculous but so too are many of these posts lately. What are these people thinking about? I have no solutions, only observations. But one thing I do know is that I owe a huge debt of gratitude to many people here, and I don't want them shut out because of the ignorant few.
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(Edited out first part of message - no need to keep)
I think the more this conversation continues without the Mods making changes the greater the risk for misinterpretations, misreadings and hurt feelings - and us going around in circles.
So mods, how about doing something and then getting feedback and adjusting as it goes? Because some of the trains of thought and exchanges here are going in a million directions. I'm not excluding myself. Sometimes if threads just continue with no action we are left hanging in a rhetorical endless loop.
This is in support of Anne's point that there is a delay.
How about this technically simple thing (I think):
A "report this post" button that signals that a thread doesn't belong on stage IV? Currently, we can report a post for two reasons: because it is abusive or because it is spam. This would be a third option but without penalties for mis-reporting or for being reported. Rather, the following happens: EITHER the mods ignore it if they think a post properly belongs on Stage IV OR the thread is simply moved to the appropriate forum and an automatic message goes out telling the op where to find her thread. This might be quicker and easier and involve fewer steps that PM-ing? Just a thought....
(Eited out last part - to keep the post as a suggestion only)
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so nicely said Steelrose - I too owe a great debt of gratitude. This place is awesome
(hay Athena, i didn't mean to piss you off. sorry about that.. i just think people should not consider the stage 4 forum a hot topic playground so to speak.. I really admire your insight etc, and apologize for my hasty pm of last nite.. not myself really at the moment - kind of upset).
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Hi Athena and all,
We completely get that this is a serious issue which is why we've noted numerous times on this thread and others that we are currently looking into and discussing a resolution to this problem, and still urge you to continue to provide your suggestions. You must understand that things like this DO take time to implement, given the restrictions of deciding on a resolution or a variety of resolutions, budget, tech ability and availability, etc.
We certainly appreciate your patience around this subject, all, and hope that you understand we find this issue important and are doing our best to remedy it as quickly as possible.
Thank you.
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Nobody is talking about you specifically, Peggy or Athena.
It's not an "us" vs "them" situation. It's not a "who should post", it is a "what to post" problem.
And, like I said, it's an easy fix. Put those rules I wrote on the top of the forum, modify them as need be, and the mods should read the Stage IV section a couple of times a day, move any inappropriate posts to the right section and send a PM to the offender linking to those rules.
We are not moderators and shouldn't be the only ones responsible to let them know what is going on with the boards, especially since they won't clarify exactly what should be going on.
Presumably, they read the forum since they occasionally post in a scan results thread or point to an article here on the board. No reason they can't do some actual pro-active moderating too.
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I too am growing exasperated with the increasing numbers of irrelevant, insensitive and inane topic posts and replies on the Stage IV Forum by people who are not Stage IV.
I joined this forum to learn more about how to live with this frightening diagnosis, and to support and be supported by people who understand as no one else can. I joined for the luxury of being able to be myself--worried, relieved, silly, scared, funny, sad-- in a safe haven with my fellow mesters. I did not join to be a diagnostian, mommy, advisor or shrink to the needy worried well. And I most certainly did not join to be a member of an advanced-illness focus group into which any curious/clueless visitor in the name of "research" or "helping a friend" could feel free to drop in and ask all sorts of questions, some truly spectacular in their insensitivity.
CoolBreeze and others have made some excellent suggestions. Most of them involve nothing more complicated than clear communication.
Mods, you have your mandate.
Tina
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Yes, I totally agree that it is not about us vs. them, simply what. Wish none of us had to be us. Not a club anyone wants to be a part of but having been a lower stage, briefly, the perspective is a lot different from where I am now.
Caryn -
I would like to make a suggestion to those non-stage IV people who believe they have something important to add to a stage IV discussion - PM the person! If you have any doubts at all whether you should respond on a thread in the Stage IV forum - then send a private message to the opening poster or to someone responding to the opening poster.
I have done this on several occassions as I have tried to show my respect and abstain from responding on any Stage IV threads. I am guilty of responding frequently on the "painful intercourse" thread as I had been dealing with that very particular issue for over 2 years. I don't recall responding on any other Stage IV threads other than to give my condolensces to the friends and families of sisters that have passed on.
I hope that this issue gets resolved to everyone's satisfaction. I would like to believe that some of the insensitive comments made to the Stage IV ladies are due to ignorance, not malice. I have read those comments but when I do I also look at how many posts that person has had on BCO and I have noticed (right or wrong, depending on your perspective) that many of these disrespectful comments were made by someone that was new to the board.
I was new to the board at one time myself but I find it very easy to navigate this board. I click on active topics and then scroll down to the bottom - I don't click on the top 5 active topic list as it does not provide the name of the forum, however scrolling down the page it is obvious as it should be to anyone which forum you are responding in.
Coolbreeze - I appreciate your posts. I like the fact that you are very direct in your responses and you do make it easy for someone to understand clearly what you are saying.
Apple - I am guilty of lurking here to check to see how you are doing. You made an impact on me back in 2009 on the chemo thread and I just love reading your responses also. BTW - I love this latest picture of you.
Edited to add: If you are going to PM a Stage IV lady and you are not Stage IV - think carefully before you send that PM. Don't get upset if you don't get a response.
Edited to also add: I have read some very disrespectful comments and what I thought was so gracious was most of those comments were just ignored by the other members as though they hadn't even read them or found them to be insensitive. What a classy group of ladies!
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I like the suggestion someone made about a pop-up before you post on stage IV. If some computer wiz could have the pop-up occur only each time a non-stage IV person tries to post so we don't have to see it each time we post..... the pop up maybe being the stuff Cool Breeze worded so well..... then they would be reminded to be more sensitive and think before they post. That may lessen the number of insensitive posts and the accidental posts thru active topics. But there's ultimately only so much you can control. Are we not living that reality?
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As quickly as possible? This has been a topic for more than 3 years.
That isn't working anymore as an answer, moderators. I have come up with an easy to implement solution or workaround, and was completely ignored. The only person addressed by name, Athena, is NOT stage IV.
We can be patient until we are dead. And, that is literal, look at the thread I posted from 2009. Many of the woman saying what I've been saying are now gone.
I don't understand why a simple question can't be answered? What is appropriate for that area and what is not, from the moderator perspective?
I've asked openly and in PM and the only thing said is "thanks for your concern."
There are humans moderating, right? It's not just bots....
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