Lower Stage Posting on Stage IV Forum

Well...I guess it's good I started out as a metster...I post all over the friggin place!

Trisha,

We agree!  "NOBODY owns the Stage IV forum, by the way, other than BCO."  

That's why I asked my question about what BCO thinks is proper for that section.

An official policy would stop this four year debate in its tracks. 

I'm pretty sure that thread was a reaction because of yet another brand new poster who wanted us to describe our symptoms in order to compare them to her mother's symptoms; her mother who may or may not be Stage IV.  She started out the thread by saying we were all brave.  

But, I didn't start it, I don't know.

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I agree Day.. we should not close it.. no way. 

I like being of use and helpful.  I very rarely send private messages but will occasionally.  I imagine that if a poster were directed to a forum where appropriate answers could be had more handily, that would be welcome.  Personally, if i resent the intrusion I ignore a post.   someone else will take care of it.

 I'm sure a way will be figured out to convey that stage 4 is kind of special.. we need something positive in this sucky place we're in... and if we are special... than so be it.  

 I am assured that most people would very willingly respect that.  

 Again, a rewording, perhaps a popup  and light handed moderation should 'fix' this.  (and thanks to the wonderful mods.. I love how you are all so personally involved. and support everyone.  that is really cool.)

 I love that I have encountered you, Day,  and particularly your awesome cream of wheat dumplings.. i actually make them all the time, since i am a chicken soup lover.  they are beyond awesome

You are special, apple.

Peggy

I hate the Us vs. Them terminology too. I have good and bad days as a stage IV person and I don't take offense easily but...I do resent being lumped in with whoever the "them" are that it's best to stay away from. Painting a whole group of very diverse people with such a broad brush is unkind.I also know I'm a fool for jumping into this fray!

Caryn  PS: I love your pic too, apple!

While I'm reminiscing, and this is a question for the older members. My memory has failed me here. I have forgotten the member name of one of the posters that I always looked up to. Her avatar was of herself (a beautiful, classy looking lady) holding her little white dog. She was wearing a blue dress and sitting in a Victorian-style chair. She had liver mets and had been in remission for three years. She described her liver mets looking like a lace curtain. If I had seen her name in the Angel's list, I would have recognized it. She's not there. Does anybody know what happened to her?

I remember her real name, just not her screen name. I came onto the Stage IV forum when I was first diagnosed (all I had at the time was two tiny little bone mets) and absolutely freaking out. I could barely read the screen, I was crying so hard. She answered one of my ridiculous posts and told me her story and gave me so much hope. It's funny the people that stick in your mind. Some have such a big impact. It saddens me that I don't even know what happened to her.

gracie1, I wonder if the lady you are asking about is in the address book?

D4hope .. I really do think that some people lack commonsense.  My best friend in the whole world is Stage IV, but I don't ask questions about it on the forum.  If I have any questions, I can PM one of the gals. Sometimes I feel at a loss as to how to help her, so I just follow her lead.

hugs,

Bren

Eidetic memory  - super cool~!

 commonly referred to as photographic memory, is a medical term, popularly defined as the ability to recall images, sounds, or objects in memory with extreme precision and in abundant volume. The word eidetic, referring to extraordinarily detailed and vivid recall not limited to, but especially of, visual images, comes from the Greek word εἶδος

 When I was first diagnosed with breast cancer, my doctor put her hand on my leg.......tears in her eyes (she has been my doc for 13 years) and told me "I'm so very sorry, you have invasive ductal carcinoma"............at that very moment I thought I had two weeks to live.....since then, I have gathered as much information as possible........had a successful lumpectomy, and am now going through radiation......even though I am only stage one, it is forever now in my brain that I have had cancer and there is a good chance it is coming back and that it will be what takes me from my loved ones someday........I recently started a new job after 19 years of aviation maintenance......I am now a licensed real estate broker......my first day on the job I was brought around and introduced to all the other people in the office........my new manager stops at the front desk by a woman and says...........well now Druanne, you and "so & so" have something in common......I was thinking........oh, is she in aviation?? Connected to the airport somehow??? He announces......"you both have breast cancer"!!!!! There were many others in the room and all fell silent...........here I am, stage 1, no chemo.......small successful lumpectomy........and there she was..........new hair growing back, little rubber finger tip thingys because of numbness, telling me of how she got compression socks from her sweetheart for Valentine's day because she can no longer feel warmth in her feet......adding, "well at least you got to keep your beautiful hair"..........I felt HORRIBLE and ANGRY for this man to have singled us out this way.........AND, I felt terrible for having HAIR.......I told her thank you and that I was lucky my oncotype score had come back low...........she says, Oncotype score?? What is that>????? I felt even WORSE! I explained to her what it was and she says, yeah well my tumor fed on estrogen...........and I said, yes I am estrogen positive too........then there was a great silence.......I didn't know what to say.......I felt so hurt for her.......and said something stupid about my hair like, well maybe next time when my cancer comes back, I will lose it all and make a wig out of it......I can't stop thinking about her and wishing I could have had it worse so I could relate more and let her know how much I feel for her and emphathize with her........and I really do.......even though I am just a "lowly" stage 1.......we are all scared, we all just want to live............I chose to tell no one about my breast cancer before this job and the only reason I did was because they wanted me to start training @ 8am that next Monday.......I had to tell them that I had radiation every morning for over a month.....

Here's some warped thinking.......I don't tell people about my BC because I think they will think me a weak person.........plus I cannot stand people looking at me everyday and putting on that concerned face........you know the one..........and asking......."how are you?"...........

Thanks for letting me ramble........I have just finished my second beer this evening.........haven't drank in months so I am sure I have loosened my tongue up a bit in doing so............

Hugs, love and hope to you all

What if we tried it for a week?

Just to see how it worked.

I can PM Ann or any other MBC ladies I know instead of posting.

I no longer think the reasons matter at all because a number (not all) of MBC women are bothered by all lower stage posts, no matter how kind or helpful. 

I wish it was not this way for the following reasons: 

Personally, I think it's important for MBC women to be connected with the community as a whole, for purposes of advocacy. After all a fair chunk of us will end up there, we should all advocate for reasearch and services and inclusiveness for MBC. This starts with understanding and having a personal stake.

I know Konakat thought this whole thing was ridiculous and wanted the support.

As a journalist I believe in the power of sharing stories. I think the "car crash" poster was a little off...car wrecks are really not that interesting most of the time. People problem solving is much more interesting.

I also think the internet just does not behave in tidy ways.

People kind of do what they want.

On my weddings forum the newlyweds were always getting mad at the brides-to-be for posting wedding questions in our newlyweds forum.

On blogs or twitter or FB women of various stages interact freely...and I think are better for it. 

But what I think does not matter.

If I can make some MBC women happier by not posting at all I have done something good for them.

I don't think it will always have to be this way...but what if we all tried it for a week? 

I would rather be part of a solution than a problem.

i like being of help and service and i assume most people do.. and/or need help.  this is a very cool place to be a part of the solution.

Breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete, and up-to-date information about breast cancer and breast health as well as an active and supportive online community.

and btw Druanne, i really enjoyed your 'beery' post.. I wish there was more beer in my life.  I do have cheap wine but it is awful.  congrats on the job and may you find new friendships.  People really do not know what to say or do sometimes..