Lower Stage Posting on Stage IV Forum

Thanks, yorkiemom. I agree that some have not read the request not to post if yourvare not stage IV. It is very gently stated.

Caryn

The board already went through this in '08 and the forum imploded. Thanks to that we now have the ridiculous redundancy of "just diagnosed with rec. or mets". The odd time a newbie is going to make a mistake....it happens. Some older members of a different stage "got the message" they weren't wanted....and that's a shame.

ETA: 1openheart, you shouldn't have to apologize.

I'm stage IV and myself and many others do not mind posts of support and well wishes from any stage.  We just try to discourage the "omg I might have mets and I',m terrified" posts because that is terrifying for us to read because we are already in that hell.  If someone posts something in stage iv that might be offensive I try to gently guide them to the right place.  People are human and make mistakes...I know I do plenty of times and I would hate if someone were mean to me about it......xx00xx lisa

Lisa,

Totally agree about support and well wishes as well as not posting if you are not stage IV but simply seeking advice on your own symptoms. Personally, I am not crazy about early stagers offering med/dietary advive etc. to me when I need it or those who think they understand the emotions of being in this unenviable position. But again, I think they mean no harm and are possibly unaware of the restrictions on stage IV forums. Wish none of us had to post here!

Caryn

Oh my, I know I'm guilty of posting condolences, especially on the thread announcing their passing. 

Or maybe a thread started by a member I know from our chemo days, etc. I will definitely try to be more cautious and avoid those threads on the Stage IV board. I can easily just send a PM to the person if I want to communicate. Thanks for the reminder.

Guess the wording on the sub-heading of the Stage IV Forum has changed yet again, and become more cautionary.  I'm sure I posted accidentally a few times, but purposefully even more times.  All in all, maybe 1/50th or less of my postings were in the Stage IV forum, and almost always when the topic was not really stage-sensitive.  So, what IS the interpretation now?  NO posting in Stage Iv Forum by lower stages, or just to be mindful to be caring & supportive if you do?

I agree with your way E:) - caring and supporting.



Unfortunately there are some who don't and I think it's impossible to make everyone happy. (Of course I didn't have a recurrence so I might see it differently).

I always thought, like others have said above, that one needs to tread lightly on the Stage IV boards if you're not Stage IV, but it wasn't restricted.  I've hopped on to offer condolences--really only if I felt that I "knew" the person who passed...to express my appreciation and give support to family and friends on here.  I KNOW I've slipped onto an "active topic" not realizing it was Stage IV, but I hope that I have never offended anyone. Fear gets to us all sometimes, and not everyone has tact, but I hope that I have never brought my fears to the Stage IV forums.  

I'm sure there are various viewpoints about this, but I have always been so humbled and inspired by our Stage IV sisters, and I have learned so much from them, that I thought we could all talk to one another.  I know this is a sensitive topic.  And I really do understand wanting to "go somewhere" where everyone will understand YOU...and I understand that I don't understand what it's like to have a Stage IV dx. And I just want to be clear that one thing that's been so inspiring to me has been to see that people continue to live their lives with Stage IV--not that you are required to be some sorts of breast cancer superwomen or heroes to the rest of us.  It's just a pleasure to "meet" some of you here.  Love and appreciation to all!!

I'm glad to see this topic being revisited.  As sometimes newbies wander into the Stage IV forum by mistake.  It's an easy mistake just to hit the active topics button.

For some of us lower stage gals that have been around a number of years, we have friends that are now Stage IV.  I feel comfortable writing my support on the Stage IV forum of my dear friends, and condolences when I've lost someone I care for.

But, I would never dream of offering any advice to these dear ladies or asking them about some mystery symptom I may have.  It's just not cool.

Hugs to all,

Bren

Sorry, this may be directed at me. I am currently heading into chemo for lung mets but have not changed my diagnosis. I am sincerely sorry if any of my posting have been offensive or insensitive. Thanks for the heads up!

I don't think this thread or the other is directed at any one person. And, I'm sure no Stage IV women mind condolences in a thread of a lost sister; many of us who are stage IV post all over the board and why shouldn't condolences come from everybody we've touched?

I am sure participation in a light-hearted thread would be welcomed too.  Many of you are wonderful women and you have a lot to give  Any thread I start is open to anybody from this community, although I have to respect my Stage IV sisters if they would prefer that not happen - I go with the majority. I don't know what happened in 2008 but I guess there was hard feelings.

I think we all understand that people make mistakes and I know I usually read the "active topics" view and don't realize exactly where I've posted all the time. I recently posted something about reconstruction in the group for women who don't reconstruct - oops!!  ::redface::

What we don't like is the deliberate posts that imply being "us" is the worst thing to be (well, it kind of is) and questions on how to avoid it.  If we knew how to avoid it, none of us would be there.  Or, the hysterical post entitled "Scared to Death" that says,  "I have a pain in my back and I'm so scared it's mets and I have a child and don't want to die!  Did you have this pain when you were dx and does it sound like liver mets? Please help I'm so scared!"  Um, most of us have kids and none of us want to die, and we aren't doctors......

I think the "not diagnosed with mets but worried" forum is where those threads should stay and they should be aggressively moved when they happen in Stage IV.  I'm happy to answer those questions - when I'm in the mood - and so I visit the appropriate forum from time to time.

I might be the only one, but I am not crazy about daughters posting about their mothers last days either.  I am not sure why they don't post in the caregiver's forum but it seems they get a "pass."  I understand if they have a question about Stage IV treatment, but some do a play-by-play of decline, "Mom now has thrush and it's getting harder for her to breathe, how do I get through this?"  That is hard to read and expecting ME at least, to console them seems like too much.  I fear every symptom they post might happen to me at the end, and I fear my children will be as obviously upset.  I don't need to see it in that section in black and white.   

But, those kinds of things are pretty clearly insensitive and I don't think any thread can stop insensitivity.  

Obviously not all things are meant to be rude.  Here is an example of things lower staged woman might not think about when joining in - and it's a mistake made by me, when I was Stage II.

There was a thread asking for experiences about a chemo I'd done, taxol maybe.  I responded with my experiences without realizing it was the Stage IV section. When I realized it later, I just left it there as I figured my experience with the chemo was relevent to the poster.  But, now that I am Stage IV, I realize it isn't.  Because, when I did the chemo, I was relatively healthy and active and newly diagnosed. My body was "pure" as far as treatment went.    I hadn't yet been on four or five chemos, and I hadn't been in and out of the hospitals with surgeries and infections and many of the things Stage IV woman have to go through.  My whites hadn't been up and down like a yo-yo for years, etc, and I didn't have to worry about processing things through the liver, which might be harder with some chemos.  So, my cheery, "I got through taxol just fine, just a bit tiredness at the end" was quite inappropriate.

Giving advice based on being Stage II ir III may not be relevant to a person who is Stage IV.  After being in treatment for years, you just aren't as strong as you used to be.  So, that's one thing I did that meant no harm but turned out to be thougtless advice.  

Apple just posted a thread about her cleaning day and a vacuum recommendation.  Well, that was a light thread and it showed off a good day she had planned.  But, again, the days most of us feel good enough to get out the windex and buckets and do a deep cleaning are few and far between and thus when it happens, it's post-worthy.  It likely will be hard for the rest of our lives so if anybody posted there, they have to keep that in mind.  Even if they are tired, they have an end date to their treatment that we will never get.  

The vacuum recommendation request though, anybody should be able to answer.  Sorry Apple, to use you in an example.

So, I guess my opinion is don't stay away entirely but try to see things from our perspective and realize that things ARE very different when you are Stage IV - it's not just a saying.  The fear of being stage IV is not the same as actually living it, and doing treatment for six months is not the same thing as doing treatment for the rest of your life.  Stick to condolence threads, light-hearted threads and don't give too much advice - just sympathy.  

And, like I said before, we have to thank the mods for doing such a gread job making sure there is a place for everybody on this board and listening to all opinions.  It's greatly appreciated. 

And, here is my worry - is it appropriate for ME to post in the not diagnosed threads, or early stage threads?  Will I scare people........???? 

Sorry for the long post, I'm chatty today!  I must need a nap.       

I, too, at times have posted on the Stage iV forum.  I was put on Tykerb 2-1/2 years ago when I was dx with IBC after I had previously been diagnosed with IDC and DCIS.  (I am still on Tykerb.)  There aren't very many women who take Tykerb who are lower than Stage iV so I have asked a couple of questions on that forum and also participated in a few threads dealing with side effects of that drug.

My apologies if this was out of line.

Ann, wow, what a great post!  This is always such a contentious issue and your post provides a lot of insight.  Sharing your experience from both sides - being Stage II and posting in the Stage IV forum thinking that your situation was similar and relevant, and now being Stage IV and seeing that there really are differences - is very helpful.  My gut sense has always been that even if the treatments are the same, the way that we deal with the treatment and side effects mentally will be different for someone who is Stage IV vs. a lower Stage. What you have explained is that even the physical reaction may be different. Very educational.  Thank you!

This is all too funny! I see some of the same people now saying it's o.k. to post on the Stage IV forum but in 2008, those same people had a hairy fit when someone who wasn't Stage IV posted an innocent question years ago. When I was first diagnosed with bone mets, this board is where I ended up. I remember reading the responses from all stages, freaked out, reading through tears and asking questions all night long and I will never forget the Stage I lady who simply said "I'm here for you....try and get some sleep now. Goodnight". The one person who got me through and sent me the kindest message...gone. She got driven off because of the divisiveness of the Stage IV forum, so thanks for that. Let's do it all again, shall we? and see how many more we can alienate.

I think this is less a stage issue and sometimes more of a credbility issue. When I first joined the board, someone asked something I think about triple negative (which I am not). But I had seen video and posted a link--to which one of the old hands pointed out I was wrong--I was--the video didn't feature a triple negative person. 

I thought I was being helpful, but obviously I wasn't. My mistake could have been pointed out in a way to spare my feelings but it was more along the lines of "Hey Stupid, don't talk about things you don't know about it."

It's nice to be nice, no matter who you are or what is going on with you.

It does crack me up when someone will make a really nasty remark but append something like "Sweetie" or "Bless your heart" to the end. Like THAT makes it a compassionate remark vs. the verbal slap it really is....