Disappointed About Being Shooed Off the Stage IV Boards

IMHO I appreciate the stage 4 girls being able to have some control, some 'say so' and call some shots if you will. I know cancer has made me feel powerless in many ways, I can imagine for the stage 4 folks many things feel out their control. Having a thread defined by their needs isn't too much to ask - again IMHO and no offense to anyone with a differing opinion.



I feel the need to honor and respect their wishes and hope that if I indeed walk in their shoes one day that I will have a place or people that I can connect with and feel emotionally safe with.



God speed

But Athena, you also have your own "selfish cubbyhole"...the strange thread. I would think that makes you a groupie too.



So is it all open to all or only open to some? Makes no difference to me. Let the wisdom of the crowd prevail.

Not sure what the brussel sprouts represent but I love them! Hee!



Athena, as a metster, I appreciate that you understand my/our needs and have posted as such so eloquently on this thread. I, for one, don't mind either way, closed or open. However, I still feel somewhat healthy so my point of view is still a river in Egypt.



Sometimes, though, there are posts on the IV forum that, however hard I try to ignore, will windup in the middle of a thread and half way through reading it realize that I resemble that "dying mother/sister/friend/aunt" and it gets to me and can't be easily shooed away. Especially, at night, lying in bed. It is those posts that hurt and take me to a dark place that I don't want to see just yet. Unfortunately, it is exactly those posters/postees? that will continue to post as they won't read the subheadings anyway in their quest for acknowledgment/support.



PS: My brain is chemo'd so I hope that this post makes sense to those not hearing how it sounds in my head.

Sorry to be repetative...But i really am struggling with this issue....

I dont mean to generalise , as i am sure there are some who dont want this but...

Why do stage 4 breast cancer patients want all of us to see their posts and threads but dont want us to participate?

I understand not wanting pressuring posts or insensitve posts... none of us want that i believe. 

But then why do you want us to watch?

We non ST4'ers are always looking over our shoulders... feel the breath of stage 4 on our necks... 

I feel this behavior is cruel.. and i have yet to see/read any understanding of this from the st4'ers that are participating here...

Caryn,

i agree there isnt a concious "need to watch"..but thats what happens, since  this no posting is expected but still allow the threads and posts to be public.

And i have said this before.... ill try one more time..

I wish for the stage 4 ppl to have the privacy they ask for... but this is not privacy, since the posts r public... 

It's like putting them on display... and i find that disgusting to be honest

"look but dont post" ... why?

As for reading the thread... i did, and to be honest i didnt read anything new...

I AM NOT DISSAGREEING THAT STAGE 4's NEED PRIVACY

I am saying that their privacy should not be public... 

Why is this so hard to figure out? 

Its like asking for a private room to be built with glass walls...

Dont u see the cruelty in that?

I do.. as much as i can see the cruelty in some ppls approach to the stage 4 people...

sigh,....its really frustrating to be this sick and not be understood.

Celineflower,

The bottom line is that right now, it's beyond our capability to have a "private" forum for any of our members, so the best option for those who feel it is unfair to read/post on a thread you do not feel welcome on, is to block the forum and therefore, effectively make it private (or at least no longer publically viewable to you).

Thank you and let's move on.

--The Mods

Mods it might be beyond your capability... but the software you are using for the forum can make sub forums private and not viewable to the other members... 

So i ask again... why not?

Celineflower, first, what you are requesting takes time and money and requires more than just one person's opinion. Again, it is beyond our resources to provide this right now, or anytime in the near future. So, your options are to block the forum or read elsewhere.

Let's move on.

I am going to hazard an explanation (and want to make it clear that this is MY take and I could easily be wrong).



I learned a LOT from reading through pertinent threads in the stage IV forum before I was ever diagnosed. As someone pointed out way back, sometimes things do get posted there that are a benefit to everyone and, for whatever reason, either the OP was most comfortable asking for help on that thread rather than another, and the responses were, of course, done there.



From what I understand (again, a disclaimer that I may be incorrect), it's not so much about privacy (as in our thoughts or struggles are so special no one should be able to see read about them) but more about respect and thinking about whether anything you might have to say can appropriately be helpful to someone tied down to Stormy's metaphorical tracks with no hope of escape.



Certainly, we may all have a particular pain or side effect in common from common treatment, and that is where the many other forums come into play. If I want to know about something regarding my radiation treatment, I first go look in the rads forum. If I want to know about rads treatment for my mets, I will look in both places (I use the search function a lot).



I would have hated having any forum banned from reading at any stage of my journey because being able to 'read ahead' allowed me to be emotionally and intellectually prepared for the next step.



Everyone has 'what if' questions and searching for the answers can be as simple as using that search function. Then, if you don't find what you're looking for, a question in the appropriate place can be asked. For the stage IV forum, Chrissy's thread is the place.



I suspect that every one of us is very aware that our posts are out there for anyone to read and have agreed to and accepted that. We may even be helpful to others not yet in our shoes by choosing to play out our diagnosis, treatments, success and failures so publicly. That is the glory and courage of us all. But that doesn't mean we want to get unexpectedly slapped out of our own comfort zones. And, in the end, I believe that is the only thing this discussion has ever been about.



I don't want to be completely isolated, even as early as my mets is, I find that to be too true already. I pray that my posts, wherever they land, are useful to whoever reads them. It's my way of paying it forward. If I wanted complete privacy, I would have gone elsewhere.



Last thing, it was earlier mentioned that someone could answer a question about something a higher stage asked by PM, but then others don't get the benefit of the answer. I would respectfully ask that either those responses get transferred to the thread by the recipient or we welcome direct responses to our questions regardless of the poster's stage (or, if we're comfortable, we actually post the question in another forum where all can benefit).



Light to all...

Obviously, other posts happened while I was pecking away, but I stand by mine.



I am now done with this discussion.



Light..

I have done nothing but think of canadagirl and how she got chased away..

i have private messaged the mods... i have sharred my opinion here publicaly ...

i am so upset... 

but hey...who cares...im no one important

lets MOVE ON

I think its time to take a deep breath and be grateful that each one of us is still here.  Many others who have been on these board are not here anymore.  I especially miss Konakat...this is what she had on her signature "When in doubt, eat cake. When you haven't a clue, add ice cream." KonaKat, bless you.

I think the time has come to "just do it."

It's time for any of us who are not stage 4 or posting on behalf of a patient to stay away from that board.

Either the larger community will be missed or it won't.

Cookie out

As a new Stage 1V sister, I find this topic comes down to one thing it seems.  Speaking(typing) before you think;  everyone must remember what feelings everyone has.  Stage 1V has a lot of things on there plate and when someone comes in and types their feelings without taking into consideration others, feelings have a chance to be hurt or dispair can be projected out.  I do not post often, I read here all the time, I come for the information, the support, and even though I do not post to be known, I still come for the comradie.  It is difficult for some that are not stage 1V, to jump to the stage 1V forum and just type away with their feelings without Thinking first and can come across as insensitive or crass. It would be like me going to the stageII forum and saying "oh you can do the chemo, have your surgery, do your rads and take your Tamoxifen/AI for five years and on your 5th year of being clean, you will be found to have mets!"  If that was to be my response to threads there, I think I would be asked to leave.

I like to read a lot of threads, and I myself would be sad to miss many posters who have the intelligence, information, eloquence and whit in their posts.  I have met others who are not Stage 1V and would hate to lose them because of a few who want to segregate.  It would be a great loss.  A bit of tolerance will go along way.  I am newly stage 1V and maybe my views may change, I hope not, as I hope my strength will give me the ability to forgive, forget or ignore that which may have been said inadvertently.

Everyone needs to think before they speak.  I think the PM'er to canadagirl needed to do that also.

Kim, please do let us know the results of your spinal tap... Praying that they will be benign and sending you Light.