Lower Stage Posting on Stage IV Forum

I have to say, I think getting rid of "Active Topics" is rather drastic. The actual problem is the occasional inconsiderate post. If people posting on ALL forums would just remember to do so respectfully that would take care of most of the problem. I know that sometimes the problematic posts are not just due to disrespect but removing "Active Topics" would be like killing a mosquito with an elephant gun.

Leah

Darn. I seem to have misplaced my "Like" button.... Great post, CoolBreeze!

otter

Only once in the time I have been a member of this forum have I had to gently by PM, point out to a poster that where she posted was perhaps not the place to post her question...........she was indeed a newbie so I pointed her in the appropriate direction and told her why.  She was not offended only appologetic that she had made the error.............but equally, I was not offended that she had posted just surprised.  I did notice that her question was not answered nor acknowleged by any other posters on that particular thread.

I have had many PM's from girls who are worried about mets or who relate in some way to my profile and always, before they write anything, they ask if I would mind answering their query.

I understand how some of the stage IV girls feel but I also can relate that the lower grades also have the fear that drives them to perhaps want to offer their love and support to those of us who need it and yes sometimes it does happen that an inappropriate post is written but I think we are all big enough to overlook an error in judgement and move on.

The only change I would like to see is perhaps somehow make it known that you are about to post to a stage IV topic before the post is published.  This may well be the easiest way to make people aware.

Your suggestions are incredibly helpful. If you would rather private message us with your thoughts, please do so! In the meantime, we are compiling a list of your ideas. 

Best,

Melissa and the Mods 

I'm starting to change my mind here.  Yesterday, I logged in and saw that 100% of the posts on the Stage IV section first page (by my computer setup) were not by Stage IV ladies, nor were they supportive. They were needy.  The top section was all moderator stickies and then every post after that was a family member or lower stage woman worried about symptoms.  I had to go to page 2 to see a post from and by a Stage IV member.

Questions were:

"my friend was just diagnosed Stage IV, how do I handle it?"  

"I have X symptom and am worried, does it sound like mets?" 

"My sister can't eat, walk, is vomiting all the time, looks like a skeleton, in pain, is suffering.  Is she dying?   

"Share your stage IV journey with me so I can give my mom stories of hope" 

"How long will it take my mother to die without treatment?" 

"A stage IV friend wants to have a baby, how do I go about getting a surrogate?"

"My mom is Stage IV and has been in an abusive relationship for years and dad won't let us treat her."

"My family member was just diagnosed.  I'm scared, tell me that I'm not alone." 

That was in the last two days, y'all.  In the Stage IV area, under the section called "Connecting with others who have a similiar diagnosis."  It was not the caregiver section or the relationships and emotional crisis section, and none of those people actually HAD a similar diagnosis.

Is that section for women dealing with Stage IV cancer or is it for anybody who wants to talk about Stage IV cancer?

I think we all just want to know and have some clear guidelines.  It has never been clarified. 

Moderators:  what is appropriate there and what is not? 

i do too.  i think the nutritional hints, the questions are just so invasive and an assault on our special issues and friendships.  I hate to further set myself (or my sisters) in any way further apart from the rest of the BCO world.. but the farther along i travel, i am more sensitive.  I do know that many of the nonstage 4 people have forged friendships with 'us' and hate to think that they would be denied access.  I still somewhat resent that they opine.   I do think that we are a part of the greater community and wish to remain so.  More cautions may be in order and that may work... (can you tell I'm having a bad day?)

I don't know the solution really. 

I agree. It's not ill intended. Just not knowledgeable of the situation. A pop-up with cautions would be a useful guide.

i agree Leeza.. i totally do not believe 'locking' is a solution.  I posted many times when i suspected i was stage 4, but not formally diagnosed. 

Ann, wow.  That's unbelievable.   Talk about people just not getting it.

Athena, unfortunately I don't think that a one-time pop-up the first time that someone posts in the Stage IV forum will solve the problem.  The first time that someone posts it might be to offer support or condolences and then it could be some time later when they have a "could this be mets?" question - and by then they would have completely forgotten about the pop-up warning. Or maybe a newbie would decide to not post when they first get that pop-up message but the next time they see an interesting topic on the Active Topics list, they don't pay attention to which forum the post is in and they just go ahead and post.   

I think the message needs to be clearer and constantly there.

Leeza, might the "Not Diagnosed with a Recurrence or Metastases but Concerned" forum be the right place for you to post your questions and concerns?

I think this is a truly fruitful conversation.  I have never felt afraid of my stage IV friends.  I hate to talk in an us/them binary, but I know our whole community would feel a huge loss if "they" were separated from "us." (Ugh...you know what I mean, yes?)  That said, I do think there is some editing that could happen. 

The current "blurb" on the forum list says:  Please respect that this forum is for Stage IV, their families and caring supporters only.  Perhaps it should say something like, "This forum is to support the needs of Stage IV members."  I think the "families and caring supporters" opens it up a bit more and makes it seem like any Stage IV ISSUE should be here.  It's a nuance, but a significant one.  The Stage IV forum should support the needs of the Stage IV community members.  If you don't have Stage IV cancer, you should go there only to GIVE, not to TAKE as I see it.  

It breaks my heart to think that people are hurt here--where there is so much love and support.  I agree with Cool...it's unintentional and fear-based, but perhaps a better description of the forum is a start.  

I took a quick peek, and only the Games and Humor Forum (which is often full of postings of only a few words) and the Chemo Forum have more postings than the Stage IV Forum.  It's the nature of the beast.  I know I have stumbled onto Stage IV threads in Active Forums.  The fact is that they are much more active threads than most.  I am sure that many of us go to Active Forums to see who's online, who's talking, who might be there.  Perhaps a reminder at the top of the page there as well would help.  

Respectfully and gratefully,

Profbee

edited for formatting

I think the boards should be set up the way they are with the only exception that when you set up your profile you should pick a stage or caregiver status. I think everyone should be able to read everything, however on the initial post for stages, only people with those stages can post initial posts. I think when the person posting a post on a stage board they can choose who can respond to their posts. Hence if a stage iv person only wants stage iv responses only people with stage iv profiles can post replies. If it's open to everyone, then everyone can reply.

I know the mod are very busy; but maybe they could focus more on the stage IV forum and send gentle PMs to people who are unintentionally posting comments that could be hurtful, perhaps directing them to a more appropriate form? I don't think this would have to be an everyday thing, but periodic to give guidance to new people as they join.  

Sorry I didn't take the time to read all the responses but I see no reason why Stage IV area should be taboo and no one other than us dealing with Stage IV should post.

Ladies that are Stage IV participate in other threads around the boards and make many friends, personally if I was having a rotten day and just needed a pick me up, I would hope my friends would feel welcome to post.  I hate when I read "sorry I didn't mean to post here or impose on you". 

Chemo is chemo no matter how you look at it.  I have met early stage women that could not tolerate chemo in anyway shape or form.  If her experience can help me with an issue I am having then why shouldn't they feel welcome to post.

I left the boards years ago when all the nonsense started about no one can post here unless you are stage IV and there was so much bickering that I just stopped visiting the website altogether.  There were times I could have used support or advice but I kept to myself and stayed away because the fights were so bad.

I didn't like seeing someone very new to bc posting that it's only a few tx, they are doable and move on with life.  Or some type of stuff that is sort of negative and demeaning, but the posts I see currently are always nice and welcome in my eyes at least.

It is bad enough our lives become isolated with stage IV.  If you quit work, you start to lose your friend base because it you think about it, you make alot of friends at work or functions you used to have energy to attend.  I know as each year has ticked by, more and more people disappear out of my life, some have passed on and others become afraid of you, like you have something contagious!

I hate the fact that I can't just plan a Friday night out or a weekend with my grandkids.  All that depends on how I wake up feeling that morning and how my day goes on.  If I don't get a good nap then forget going out because I will just fall asleep.

My point is, why are we such a taboo group of women that people are afraid to post in a thread in our forum?  Personally if you have information that can help then I hope you will speak up.  I love it when people help pick you uf when you are down or even say a prayer for you, your child or even your pet.  It means the world to me and I just have no clue what this is about....

I don't want it closed either.

I think rules should be clarified or the mods need to do a better job with moving threads on their own.

Expecting us to go through all of what I described above to let them know, or to send PMs to offenders themselves when we have no "power"  - that is not the answer.  

The point is not to put more on us than we are already dealing with.  The point is for the rules to be clarified, for it to be posted clearly, and for the mods to spend some time handling it until everybody understands it.

Whatever "it" is.  I asked privately several days ago,  but got no answers.  I don't think they even know. 

The forum description is too vague. This is a forum for those who are braving more treatment and managing the ups and downs of a stage IV or metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV, their families and caring supporters only.

The bolded part opens it up to anybody who wants to post about Stage IV.  All of the people I mentioned above, who started all those insensitive posts, would describe themselves as caring supporters. Not of the Stage IV woman who post here, but of somebody who is Stage IV.  

But, the Heading for this section is  Connecting With Others Who Have a Similar Diagnosis

Unless you are specifically diagnosed Stage IV, I'm not sure a person should be able to start topics there.  Maybe posting in already started topics is fine, as there are lots of threads that would be great for everybody (my Monkee's one for example). There are lots of ladies here who are not Stage IV I enjoy and want to hear from.

I'm not sure that's technically possible though.  

I thought before mentioning here that people should think of things from our POV before posting would be enough but clearly, based on the list I made above (which isn't even comprehensive) I was wrong.  People need to be told and often.