Disappointed About Being Shooed Off the Stage IV Boards

But then this begs for some clarification, because the mods, above, make it clear to Canadagirl that she CAN post on stage IV.

So, again, who sets the rules and who can post?

The problem is clearly with what are perceived as insensitive posts (and those can come from anyone - some of the worst come from people of the same stage), but it seems that actual family members are being shut out as well.

Again, the mods BOTH changed the language AND told Canadagirl that she CAN post on stage IV. Mods, I don't think both actions can logically coexist.

We need to distinguish between insensitive posts by early stagers (or anyone else) and posts by family members who are caregivers. I am sure no one wants insensitive. If the majority of stage IV sisters believe that to play it safe caregivers should not be allowed in the forum either -and the mods agreed, then the mods are incorrect in telling Canadagirl that she can post there. They ned language telling caregivers where to post.

Ultimately, mods, it's your forum and you make the rules. You can't please all sides on this but, IMO, you won't please anybody unless you clear up some of the ambiguity here.

This will also mean no posts of support or condolences. It's important that everyone be clear about what is at issue here and that we can't have it all. Like everyone else, I will have to block the entire Stage IV forum and hope some of my friends post elsewhere with their news.

I also hope that people realize that people of different stages offer easch other support all of the time. I remember there was a huge to-do- bout voting for and raising money for one sister - it was all over the boards, including early stage threads.

I say it's time to draw a line and be done wth this drama. Password-protect the stage IV forum OR, stage IV people be aware that you may have an insensitive comment from time to time and use the block or ignore function. You can also block entire threads. BCO has given us plenty of tools to customize our experienec here. Hall monitors don't really work.

It's either or. Let's make a decision, everyone. This bickering has gone on for years to no avail.

Hopiong my tuft won't be bitten off my tail for saying all of this.

BTW both friends and family of people with serious mental illness are more than welcome to post on the mental illness comorbidities thread. You could also try posting something insensoitive - just remembe that we crazy people usually have the best crazy jokes taken.

Finally, let's all try to be adults and grow a slightly less thin skin. I know that is really, really hard with chemo and hormone therapy (and I'm not joking - I took EVERYTHING personally while on Tamox.) And YES, please let someone know if she is being insensitive.

How about a pop-up disclaimer/posting rules for every first-time poster on stage IV. That makes more sense. Treat it a bit like chat room, where you first have to read the rules before posting?

And yes, it is my business. It is the business of everyone who posts on BCO, so, whiners (again, especially early stage lackeys trying to look good) don't whine!

Thank you, Beesie! You do truly understand.

Caryn

Celine, I agree that this does open up a Pandora's box of questions. I do think insensitivities for Stage IV are materially different given the issues they face.

So whatever rule goes, goes. But it has to be simple and clear, and the mods just made things all the more ambiguous here.

I think the answer is "yes" Celine. I do know where you are coming from. Fellow stager II-er here, also with that fear. But I also know that FEARING something is a hell of a lot less bad than KNOWING it. As bad as uncertainty is for us, there are resolutions one would rather do without.

I will have to block the entire Stage IV forum. That makes me sad, and it seems cruel. But the rules are the rules.

i wont block it.. no matter what..

I'm here to learn ... so i post anywhere that need arises... 

Pain is NOT  comparable... its NOT  a competition..

We might all have cancer but no one here is aware of how much pain another deals with in their life.

And.. by all means... i understand the need for ppl who are stage 4 ..to find a safe , place to be together.

I have no issue with private parties...

but it seems to me this is a PUBLIC forum..

thern why not create a private forum?

do you wish us who are not stage 4 to read the threads titles , feel the pain/love that comes from them and then what?

feel left out? unable to help?

i am very confused..

and please forgive my bluntness... if i have insulted anyone... well i did not intend to and do not wish to add any stress to anyones life.. stage 4...to 0

i wish to understnd clearly... why we must watch this public activity yet be exluded so directly...

im sorry i dont understand the need to expose stage 1-2-3 to your activities yet not wish to welcome us...

There is not one person that deserves respect more then another...

And honor is the point..yes.

the voices of the few... rarely out sing the many...

First, the reason I said that I think Canadagirl was correct to be in the stage IV foum is that she was posting for her mother, who is stage IV. She was her "vehicle" to information and support, so to say. I do understand that it is different if a caregiver comes in looking themselves for support. That can be very hard to handle for anyone, despite stage. But, to block Stage IV forum is a huge loss for everyone, in our opinion, especially for the many people who are reading only. Sometimes we only chime in once we something that resonates, or we find someone we feel we could connect to. 

It will always happen that someone with a different diagnosis will post in the "wrong" forum either on purpose, or accidentally. We sometimes enter conversations in physical life, thinking we could add something, even if it doesn't always affect us directly. Sometimes it works and you could be helpful, and sometimes it just doesn't. 

Anyway, thisis  currently still a public forum, so we'll have crossovers inevitably. And, sometimes these will be good! But, to say that as a Stage I (or 2,3,4) you can't post anywhere else is a bit too limiting. With the stage IV forum though, we have been listening that this crossover is difficult, and therefore we are tightening things a bit there to help. 

We will discuss here and come up with some suggestions. As always, your suggestions are very helpful.

When my mom was going through the last stage of her life. I did post in the stage IV of how scared i was because i was losing my mom. But, that's where I had retrieved info prior and I did not know about the caregiver forum. The mods moved my post to the caregiver forum. Looking back it was probably insensitive of me to have posted there but it was done innocently, I just needed someone to talk to about it.

The boundaries between stages are very blurry.  My own initial "staging" was most likely incorrect, and I found so much information on other forums.  Treatments are also blurry, such as some of the chemo offered for early stage and late stage - the SEs are similar, and dealing with them are similar, they are just prolonged for late stage compared to early stage. Should we be putting up a wall between the stages in addition to the treatments? Should I only be allowed to ask questions according to my own stage and treatment? What about the times I am between stages, switching treatments?  What about offering advice to those going through treatments that I have already been through, and can offer some helpful hints?

I have always had difficulty with black/white in this world - I function in the "gray zone." So the advice the mods gave, despite the official "rules" seemed very consistent with the intent of the rules, maybe not the absolute letter of the rules.

I usually do not get involved in these controversies, but as I have progressed from alleged IIB to IIIc and IV within months, I have met many wonderful women here, many who were very respectful, regardless of stage. At one time my MO had suggested a treatment that was only approved for stage IV, and as I was allegedly only stage IIIc at the time, I had nowhere else to turn, and the Stage IV ladies answered my questions.  I kept them specific, non-emotional, did not attempt to tell them I knew how they felt, etc etc etc.  I cannot know how ANYONE feels, at ANY stage, and no one can know how I feel.  But we come here for support and to offer support in love and, hopefully, nonjudgment.

And yes, I have occasionally been offended by something someone said here.  I have encountered judgmental comments, stupid comments, inaccurate comments.  I have always tried to be respectful, but when I have been angry or vented about something, I am sure I may have offended someone else without intending to do so, and yet I am still accepted here.  We are all human.

So my point is this: this is a public forum, there are many more loving people out there than non-loving, it is NOT an "us vs. them" situation, and no one is going to be bleeding or dying if we cut a little slack for those who participate respectfully on these discussion boards. Sometimes too many "rules" that are too specific truly limit the ability to function in the way these boards were intended to function.  The basic rule should be respect for each other as humans, not as rule-followers or rule-breakers.

hear hear linda!

This is a public forum not a sorority. I watched the Stage IV forum discussion in dismay and should have said something but I thought the hypersensitive, pity trip would stop. I think rules in a support group setting don't make sense. (Other than common courtesy which is expected). I think grouping for easy access to appropriate information was the goal with the forum descriptions originally not exclusion.



If you are distressed by reminders of mortality, where on earth can that be escaped? You can't seriously expect a cancer forum to avoid this topic?

Some postings are insensitive and some responses are rude. Rude, insensitive people get cancer and their miserable personalities don't change. Ignore them. Post where you have something to offer or where you feel you will get your best answers. That is what I am doing.



I wish the moderators had not capitulated to such a small group making the demands. PMs telling people to avoid posting should not be allowed. That should be a decision made by a moderator. That level of rudeness is unacceptable and unbelievably egomaniacal.

If you don't want to read it-don't read it. Block it, ignore it and remember it is a public forum.



I agree with Linda and Celine.

I know I am saying this in the 'wrong' forum. I will admit to avoiding the controversy originally. I thought it would die down.

I don't find the caregiver's postings any more distressing than the realities of this disease. Caregiving has it's own set of nightmares and heartache that I don't know firsthand. Does that mean we can't talk until I am a caregiver?? We can't talk until you are Stage IV? Good grief...it defies logic.

We should be associating with open hearts. Time is too short.

No more rudeness, no more acting out/lashing out when people post in the wrong spot or say the wrong thing. There are some threads where the dynamic has become ugly. We are all porcupines in a very small room. Quills down is the only way this will work.

OK from someone who has experienced BOTH ends of the stick where do I fit in? I lost my dearly beloved sister to this mongrel disease just over 7 years ago and i MISS HER DAILY. I have a late 80's mum who never did want to outlive one daughter let alone 2. I along with my mum caregave and watched my sister die from this stinkin FRIGGIN disease and I can tell you everybodys circumstances differ but NONE of them are easy. So where do I fit in and others like me?

At times Ive wanted to ask questions from stage 4 ladies bacause they were the only ones most likely to know, both about my own situation and other things, but I BACKED OFF. WHy? because I got that "you can look but don't touch" feeling when I ventured into the stage4 forum. I got a feeling of exclusivity. Is it warranted to have this when SOME of you obviously don't mind helping out others who might very well be like you at any time? If you arent up to it at the time, FINE, but why make it look like thats the case with every stage 4 person?

I find it restrictive and counterproductive that this segregation exists and I totally agree with the posts here that adequately say that.

One more thing... We ALL know that "until you've been there you dont understand"...but ..does that mean we wish someone else to go what we're going through TO understand? HUH? you'd have to be seriously screwed up to wish that, so why put up barriers so others on a lesser level can't become prepared?

I admire the Mods who are placed in this most difficult of situations who are doing their best to accommodate people. I may not agree with all they say and do, but HEY theres one thing Im sure of... I thank them that there IS a forum where we can all post and it costs us nothing. They give of their time and have made this resource for us, and I think people forget that too easily!  This aint sucking up either, it's just common respect. Thankyou Mods for all you do.