Lower Stage Posting on Stage IV Forum

I think the opinions of stage 4 gals should be primarily considered.  I know some gals have perspectives that i don't have, .  but thanx for the help from those who have opinions on how to run this already excellently run forum. 

peace and love, apple - aka, Mary Magdalen
Diagnosis: 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+

Re:  I think the opinions of stage 4 gals should be primarily considered. 

100% Yes. However, the opinions vary, and are all over the board on this one, even among just Stage IV's.  How can BCO possibly please everybody?  I mean strictly on the issue of Stage IV being open, semi-private (cautions, color coding) or private (password protected.) 

I think we all do agree that as for the type of comments themselves, some are more tolerated and allowable than others.  Good Luck to BCO, because that is a lot harder to rein in.  I mean to say impossible.  That is at the basis of my earlier comment too.

Mods, one of the problems with reporting posts is you can't say why you are reporting it.  A lot of forums have a text box that comes up and you can state your reasons for reporting posts.  I have only reported spam but to my knowledge, all reports look the same.  If members could write "wrong forum" or something when reporting something, I think that would help you too, yes?

Stormy, I don't think it's helpful when people are having a discussion to tell them to "grow up."  You see things a different way and that's fine, but I can assure you that we are all grown up here and we are merely having a discussion.  The mods have said several times over the past month or so that they are reconfiguring the boards and making some technical changes - what better time to talk about things like this? 

Dear Alpal, alesta29, anne45, apple, banjobanjo,
bestfriend05, bobcat, chele, cheryl1946, china, chrissyb, cookie97, dawny, dmacw,
donnabee, ejandkjsmom, exbrnxgrl, fitztwins, frapp, Glenna_e, ibcmets, jan125,
jazz3000, justjudie, kskier, leahS, lewisfamily503, livingit, lrm216, luvmywife,
ma111, marthah, mazy1959, misswim, meima-bev, naniam, nancyh,  profbee, redskies, reesie, rosasmommy,
sincitydealer, steelrose, suze35, thedevinemrsm, thatsvanity, usafmom, vc1, vickib,
 208sandy, 3littlegirls, 3rings (sorry if
I have missed anyone out), I just wanted to let you know that although I
totally agree that supporting family members or caregivers of people with stage
iv bc is not your job or responsibility and can in no way be taken for granted,
when you do...you change the world for many people.  Your advice and support did not just help me,
it helped Cyn, her husband and son, her other two sisters, her brother and her
Mom.  No words can express our gratitude
or our love for your wisdom and patience in the face of this stinking disease.
Bless you, this is the only way I can think of expressing my feelings x

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I never thought about a PM!    On a board I moderate, the way to get in touch with the mods is the report button and people write their questions in there - it's used for all sorts of things, so I wasn't even thinking about PMs.  

Thanks.

One thing for certain..everyone on this site has breast cancer.  To a newbie that can be terrifying, regardless of the stage.  When I was first dx, I didn't know the difference between stage 1 and stage 4, and it's one of the reasons I signed on to this site, to educate myself about bc and to learn from others about the disease and treatment options.  For example I didn't know that one could go from a stage 1 to a stage 4 in very short order. I learned that from reading posts from stage 4 patients, and it made me more aware of the need to be vigilant in my treatment.

Everyone on this site has a duty to be respectful to others.  That isn't reserved just for the Stage 4 Forum; however, people come on the other threads and make disrespectful comments about what is being written.  That is wrong as well.  I think if everyone would just respect each other's right to post, regardless of the nature of the comment or the thread, we wouldn't need to have this discussion.  It's fine to agree to disagree, but that is not what has been happening in a lot of instances. 

Maybe when you first register; there could be a etiquette/how to manueur around/things to be aware of (like check which forum an active post comes from) list of suggestions/tips that you read before you become active. I know most of my learning came from trial and error, and I would have loved to have had some guidelines from the start.

 You are right CoolBreeze, I should leave it as is, it's confusing if I change it. I will let my stupid stand. I only changed it because it was never my intent to be rude. Sorry if you find it offensive.  Once again, I think you are taking it in a different way than I meant it. I said nothing rude or mean and didn't call anyone names. I am not eloquent enough to say what I want without sounding rude I guess.

I in no way meant it is silly to talk about ways to improve the site, or that this was a childish conversation.  But I do believe that the attitude that someone is not worthy of posting on a topic they have experience in because they are lower stage is silly.

Not all of us that are stage IV have went through it all yet. Some of us are just starting out on this craptastic ride and like I said before, I don't care what stage someone is, if they have info I can use or any input that is relevant to the topic at hand, I am grateful to hear it.

Stormy, I'm not really offended, so we are friends yes?  I'm a bit bored now so am posting to this topic but my thoughts are really musings on the board and why it was set up the way it was.  I don't really want or need changes and it clearly works as-is.  I know that some of the other ladies feel more strongly that stage IV should be for stage IV only, but I'm not one of them, I am just speaking for them a little.  And, I shouldn't, they should speak for themselves.

I wanted to clarify one thing you said, "But I do believe that the attitude that someone is not worthy of posting on a topic they have experience in because they are lower stage is silly."  I don't think anybody, even the ladies who feel strongly about this topic, think somebody is not "worthy" of posting.  But, the crux of the matter is, they don't have experience in being Stage IV.

And, thank goodness for that. 

What some metsters feel, and what I understand them to feel, is that people don't understand that our experience is different than theirs, even on similar topics.  Having chemo for six rounds is not the same as having it for six years, it just isn't.  I posted my own mistake as an example.  Things are a LOT different for me now at Stage IV than they were as Stage II.  

I've never seen anybody get upset about it or even say "you shouldn't post that here" and you are one thousand percent right, it is easy to ignore.  Everybody is worthy of posting anywhere and the experience of every woman on this board is valuable.  But, that doesn't make all advice equally helpful.

 And, some posts can be downright hurtful - the ones that blame us for having mets, for example.  They are few and far between, fortunately and you probably haven't seen one yet.  

I really like LisaAlissa's idea

again.. i'd hate to see too much overkill.  too much moderation can be so tiresome (that's why i quit my last job.. oh, and I wasn't paid either.. but it was prestigious).  people have been so much more respectful and sensitive since the change was made to the descriptive words at the top of the forum.. There is the occasional doofus that comes looking for a fight.

Actually i was one of the offensive people probably being discussed a couple years ago.  I knew i was stage 4, but was not really willing to announce without complete clarification from my onc. etc.   I was posting and people were probably complaining.  I remember my onc. looking at me oddly and saying "Didn't you know you were stage 4?  you always have been."  Well, i had a year or two of blissful hope. 

I did get a warning pm from a gal.. it was very nice and polite tho, and sufficient to communicate.  I really don't like the idea of being set apart, put on a pedestal or being subject to extra passwords. 

 It is hard to imagine how being stage 4 DOES set one apart... the constant thoughts of doom, etc.  Still, we (if i may speak for some others) just want to be normal and continue  contributing and receiving help from this forum.

i WOULD make the search function much easier to find. 

Many women have stated it is hard to find (it gets hidden if the browser setting is too high). .. and the search function is stellar... absolutely the best... and maybe easy for husbands to find,  who don't want to read girlie stuff, but are looking for answers. 

Hi all.  You can see by my sign-up date that I have been around these parts for a long time.  I do not frequent the forums the way I did way back when but I do still come back to keep up with people I consider "friends" and also to try to give support where I can since I know this place was my lifeline and got me through a lot, so I feel I want to give back when I can.  I'm one of life's real hopefuls (hence my screen name) and I always believe we are only one day away from that cure.  I do mean that.  And who's to say I'm wrong?

I don't know that I post in Stage IV often - I don't know if I've posted here at all to tell you the truth, other than to offer a condolence.  I just want you to know that I have high hopes for all of us and think of us all as sisters in the fight.

I guess I didn't really have much to offer to this discussion other than sincere good wishes.  I don't have the right to have any opinion on how this particular forum should be run.  I just know that everyone basically means well so however things are handled, a little kindness goes a long long way.

Good luck to all of us in this fight.

Trisha  

I just finished reading this whole thread and don't think anyone was "complaining"  Sounds like every one having a discussion to make things better for stage IV

ma111, are you saying that the input and suggestions of those of us who are not Stage IV should not be considered by the Moderators because this is a discussion about the Stage IV forum and we don't understand how the Stage IVs feel?

Precisely!   

And here I thought that because this was a thread in the Comments, Suggestions and Feature Requests Forum that comments from women of all Stages were welcome! If this thread was in the Stage IV Forum, I would never have participated.  

Seriously though, I do agree that the decision on whether or not any changes are made should be led by the Stage IV forum participants.  What I've found in many of the discussions over the years on topics like this is that while initially a few people might stand up and voice a concern, after they are told that they are being narrow-minded or that they should suck it up or get a thicker skin (or whatever), no one else tends to come forward who has those same concerns.  So I don't know if it's true that all or most Stage IV women who participate in the Stage IV forum want to leave things as they are.  My suggestion is that the Moderators privately poll the Stage IV women to find out how most of them really feel and then take it from there.  Or if the Mods have a few options on what to do, then perhaps they should present the Stage IV women with those choices (again, privately so as to encourage honest feedback) and use that to drive the decision.

Following up on what Beesie said I'd like to add that comments such as who is "complaining" or who should "grow up" put a damper on an otherwise fruitful discussion.
It's worth reminding all who read here that this topic has been a hot one for years. That alone makes it worthy of discussion. Dismissive platitudes are not going to solve it. Respect for the fact that it is a problem will.
And the funny thing is that just as this thread was running so was one on the stage IV forum about this very topic....and another "omg could this be mets" thread popped up too! This is an issue. Let the conversation continue.