Disappointed About Being Shooed Off the Stage IV Boards
Comments
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I just finished reading all the posts because I myself got a PM telling me basically to back off.....I don't understand any of it!!!!! All I know is today I'm stage 1 tomorrow I could end up stage 1V as just happened to a dear friend of mine here on the boards. I believe we are all in this together no matter the stage. We are here to give support, compassion,
advice or to just listen. When someone passes on stage 1V I cry and get very angry,
but feel I cannot come on to send my condolences....how sad is that!!!!!! -
I am going to say one thing which is that many assumed things - no i am not stage 4 BUT a few years ago i was diagnosed with another systemic disease making me a lot more likely to have a fatal stroke (as a close relative did) so i do have experience of living on a knife edge ,and now i have BC too as well as weak kidney función which means any progression for me is faster end as chemo not añ opción ......
..it was not my intención to upset anyone. I wont post here again -
This is hardly a sorority and if it was, no one would join, as the criteria for membership stinks! Condolences have never, ever been the issue. No one has ever prevented anyone from offering condolences. As I stated earlier, no one can really prevent anyone from posting anywhere they want as it is a public forum. I am sorry if some received less than kind pm's. That was probably uncalled for. I don't presume to speak for everyone but I think many people who are seeking limitations on the stage IV forum are just looking for a place where they can be completely themselves, with their unique situations, among others who totally get it. I love the thread that chrissy started for asking questions if you are not stage IV. I think that's a great place to go with worries and concerns. I'm not sure we will ever find a resolution to this problem, that satisfies everyone, but I do hope that those of you who are not stage IV never have to know what it's like.
Caryn
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Caryn.....that's the point.....sadly many of us will end up being stage 1V.....as I said, we are all in this together. But like Lilly, I will refrain from posting.
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Scottiee1,
Yes, it is true that many will progress. I wish it weren't so and that no one else would have to understand. There was a brief time when I didn't understand either. How I wish I could go back to those days and not post on the stage IV forum. Yes, we share commonalities with other bc sisters but it is hard to put into words what the view looks like from here. May you never see it.
Caryn -
I am the person Lilly complained about sending her the PM about not posting on stage IV threads. My post said "It is a stage IV thread and we are, respectfully, asked to refrain from posting."
Hardly rude or egotistical etc, etc as stated by others on this thread who didn't even know what I said to Lily.
I do not post on stage IV threads but do read some as there are people there who I know/knew from other threads before becoming stage IV. I don't understand why we can't allow stage IV a place of their own (send a PM if you HAVE to say something). There are hundreds of threads for everyone.
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Thank you Caryn, I pray too that I never see it, but I would hope that I would have compassion and be able to give words of advice and support to any stage sister.
God bless all of us here. -
For gosh sakes, please let the Stage IV forms be for Stage IV only. That has been their request and I feel it is very important to honor that.
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Caryn, I hope it's ok, but I found your thread on stage IV in which this was discussed. Here is the link: http://community.breastcancer.org/forum/8/topic/799270?page=2#idx_36
For those of us who did not know how this came about, that thread explains - especially the last two pages. It also provides valuable insight into how Stage IV sisters feel about this, which I found quite compelling. The other thing that struck me was the extent to which the discussion centers on the need to be polite when unwanted guests post - that was a strong preoccupation.
Which makes me all the more certain that none of the sisters posting on that thread could have authored the pm that canadagirl got - the sentence she quoted was rude and a classic case of passive aggression and there's no excuse for it. (ETA: Not certain whether anyone on the thread did NOT author the PM)
The thread I have just linked to could not be more different. It was hard to find, as it was a discussion that evolved from something else, and it did so quite naturally. Reading it helped me to understand the genesis of these changes.
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A separate peeve is how very many forums we've got. I am in favor of abolishing all the age/ethnicity/religion-based ones because this should only be about disease, but I would get clobbered by tribalists.
(What next "forum for people who prefer polka dots to lines with bc that didn't show up on mammograms." "forum for people who...." never mind.) -
Athena,
I don't mind at all, especially if it helps to give people some perspective on the issue.
Caryn -
Great - thank you. Hope it helps others too.
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I am going to be blunt. I cannot keep quiet any longer.
Leave the Stage lV girls alone, they have enough to contend with!
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Athena took the time to locate our discussion on how this new forum for Stage IV caretakers and family members evolved. I hope all of you who think it was a simplistic maneuver will read the entirety of our discussion and perhaps gain some additional insight to why we asked for this and the support the mods are giving to us who are Stage IV.
As for anyone PMing someone to redirect caretaker posts, please dont, we did conclude that that shouldn't be necessary as the mods will move a thread for us if we simply ask them.
On edit: they can move threads not individual posts. -
Well, I'm stage iv and somehow missed the whole thread about changing the 'rules' for non-stage iv posters. I have found posts from several caregivers over the years as improving the forum (I admit to being a lurker prior to mets dx). But there have always been some caregivers who's posts I avoid. It's easy not to read their posts and avoid them if they are upsetting.
Before I was dxed with mets I rarely posted that forum since I knew that that was the safe place for metsters. Again, it wasn't hard to do. I learned by reading those posts but I didn't post inquiries there.
What set me off tonight to post a reply was Lilly55's comment about well, I could be Stage IV someday etc. Trust me - I was stage IIIC since 2004 and had a recurrence in 2010. There is a MAJOR difference. For 8 years I worked. I planned for a retirement (although with that niggle of fear that I wouldn't make it). I ran races. I talked to my daughter about helping care for her kids someday. Now I've been terminated from my job and can't do races or skiing anymore. My wondering if I'll see my daughter complete middle school is much more immediate. So yeah, I may be 'here for many years' but what is many - 3-4 yrs on average? Still way too few by my reckoning. Do not compare fear of something that may happen with the knowledge that it is happening. I hope you never have to join us over at stage IV and feel the difference yourself.
ETA: Lilly 55- I re-read your post and see that you did not specifically say "I could be Stage IV tomorrow."It is what I took away from your post. Sorry if that was inaccurate but that is the way it sounded to me.
Lilly55 wrote: What seems insensitive to one person may be fine to another.....i just feel that the sense of sticking together and community has gone from here now.....and i don't see all stage IV as terminal either.......without diminishing it in any way.......i know people not stage IV who died really fast and went down hill in a matter of weeks and also stage IV people still here years on"
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Deep breath. Wading in with trepidation and hope that I am not prolonging any contention. My only intent is to share my experience in hope that it may help.
I joined BCO in January 2012 as someone who had just been diagnosed. I had read many of the forums and main site during the week between my diagnostic mammo/us and biopsy.
Initially, before some of the initial conversations about posts on the stage IV forum being reserved for stage IV members, I think I posted there a couple of times. I know I posted a condolence or two. After reading the conversations and the mods efforts to come to a happy medium, I continued to read but refrained from posting. In fact, during most of my entire time on BCO, I have tried very hard to NOT post on ANY forum where I have no experience, or where others who are much more experienced or whose research skills excel, have already posted. My general habit is to usually not even read forums or threads that are unrelated to either my current or likely to be experience. Frankly, I don't have the capacity to read much else other than the information I need related to this topic.
I eventually learned that a polite condolence in the stage IV thread was never a problem and applauded Chrissy's simple yet brilliant solution to create a thread for questions about stage IV/mets issues from those of us who were not.
In November 2011, I was fast tracked to stage IV with a (finally definitive) bone met diagnosis. I am slowly making my home on the stage IV forums but tend to shy away from giving advice unless I have a strong personal experience and carefully word even my condolences. I respect the deep camaraderie that many of the stage IV women share and have shared, in many cases, for several years. I believe that I am and will be accepted into their sisterhood but would never pretend to know what they are feeling about the loss of a sister they have known for years or the pain and fear of watching their cancer stop responding to one treatment after another, or begin to progress and invade new organs. My MO tells me I will experience that particular fear one day (her exact words were that it isn't a matter of IF but of WHEN) but right now I live in a little cocoon of JUST bone mets (and limited at that).
The other day, the financial counselor at my cancer center offhandedly casually said (in a conversation about treatment assistance), 'now that you're metastatic', and I just froze. It's not like it was news, but the starkness of the comment in such an unexpected place felt like someone had slapped me on the side of my head with a reality I had managed to compartmentalize. That's a little how I see the well meaning, but sometimes unintentionally clueless, comments from non-stage IVers coming across.
It's almost impossible to read a post and know for sure how someone meant to sound when they wrote it and we all tend to project our personal emotions onto what we're reading. And, as others have said, none of us can claim complete rationality on any given day. (BTW, I would much prefer a PM from someone I may have offended, and a chance to work it out privately, than a public flogging. I don't expect everyone to agree with or like me. I do hope, however, that I will be given the private chance to make amends, explain, or agree to disagree.)
So, this was a very long way of saying we owe every one respect and we also need to be particularly careful of what we say and how we say it, especially if we are choosing to contribute in a place where we don't share the same level of experience as others in that place. I know that I haven't always done so as thoughtfully as I am capable and hope to take my own long-winded advice.
Do I currently care if non-stage IVers post in that forum. Probably not unless they are posting thoughtlessly. I reserve the right to change my mind. Meanwhile, we still have Chrissy's brilliant (it really was such a great idea) thread for questions that I think we can gently guide/encourage folks to post there. I also believe that stage IV folks who have the interest and/or ability will read and answer questions on the new carer's thread. Most of this shows up in active topics so, unless someone blocks it, it probably won't be overlooked.
Thanks for letting me have my say and give my perspective. And if you think it was a long read, you should have tried typing and editing it on a mini tablet screen!! We are an amazing group of women (mods included)...hugs to all. -
My view of the "Any of us could be stage iv tomorrow" theory and why it is so aggravating to some of us...
"I'm standing close to the tracks and if something were to happen I could get hit by a train."
"I'm chained to the tracks with no hope of escape and can see the train coming."
The two can not compare.
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Athena, thank you for posting the link. I remember when this was posted and after reading it, I really 'got it' about why the Stage IV gals wanted to keep their own Stage IV forum.
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I had never read the link above. It was a thread that didn't catch my eye so I didn't go there. Missed a completely different story than the title.
Now I am depressed and disheartened having read it. I think for the first time ever I will step away for a bit. This is not the supportive, encouraging, welcoming women I have seen in the past. So only those in our select little club will be welcome. Let me say, as a stage 4 woman who is "terminal" and dying of this I do not feel I belong here. This has really hurt me, I feel marginalised by this attitude.
I would never post on the brain mets thread, yet it is stage 4 and open to me. I have no understanding of that dx, yet I would direct someone else there if that was their question. Surely it is about respect and tolerance, patience and understanding.
I hadn't noticed the change in heading and description to stage 4. But I can see the Mods have tried very hard to once again meet everyone's needs. They do try and this is not the first time they have changed the heading to suit some posters who have issuses with some other posters. I commend them for working so hard to get the wording close to the optimum. Lets hope people take the time to read it and work out if they belong before posting.
Peace and blessings to you all.
Moira.
P.S. Bet you never thought your post would raise this much furore Canadagirl!!
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Stomy...
i (and i bel;ieve others ) are NOT comparing... we are sharing.
So.. my sister who doesnt have bc , cant relate so she cant help me? bullshit.
the only thing that should not be tolerated is disrespectful posts..
I agree with Moira , this is very upsetting.
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I NEVER EVER said someone that can't relate can't help. I didn't even say anything close to that. I agree that is bullshit. So is putting words in my mouth and twisting the words I did say.
The ONLY thing I commented on was my own feelings about the saying "I could be stage iv tomorrow."
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This is a moot point, since there is no way to stop anyone who wishes to post on a public forum from doing so regardless of the topic or what the forum heading says. Many thanks to those who have chosen, voluntarily, to respect the stage IV forum heading.
Jersey Boys was great but it it is past midnight now and I have to get up for work in a few hours!
Caryn -
Moiralf - Big gentle hugs to you - you sound like a really caring person. Celine hugs to you ... Im with you. I know some of us no matter what staging definitely have "seasons" where we are more able to lend a helping hand than other times and others have other preoccupations for whatever reason. I think its a case of letting each person give in their own way if they want to and how they want to, and NOT putting the screws on what others do. Theres times when the chips are down, and the well is empty and we need support....all of us. I think its very sad to make these divisions where there isn't the freedom to hop over to a certain area.
So what I see happen is some stage 4 girls are being denied the right to help in the way they want to, when they want to and are becoming alienated becuase of it. That is sad.
Heres just a thought. It may or may not help. Within the Stage 4 Forums maybe the girls who want their exclusive club can indeed have their own hidden private thread/subforum where they can log in and be truly segregated to the rest of us so they can hang out there and do what they gotta do .... the rest of us are none the wiser and anyway youre not going to get squat all out of a place where youre not welcome so why bother going there. When/if they want to they can surface into the other Stage4 areas and maybe contribute if they want to. There will hopefully be other threads that other stage 4ers are occupying in their respective topics where those of us who have enquiries can post.
Chrissys idea is a great one but I see it as a resource that would be more inefficient than separate topics because particular questions of interest may get buried and thus their value is minimalized, whereas in an appropriate thread, that particular topic is consolidated into one place..
One thing is for sure, I dont want to be asking ANY questions and risk incurring the wrath of someone because I failed to tippy toe around with just the right amount of submission as a lesser person which is to be interpretated as respect. Forced respect isnt respect . NO one is to blame where we are at with this BC.
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Wow. This situation happens on most forums. I don't think the person is being mean spirited. I think I have posted in Stage IV to offer my condolences ( it's hard not too & It chokes me up every time ) The young lady who passed & had a video showing her skydiving & passing out scarves. she moved me. I think about her daughter often. just because I didn't know her doesn't mean I wasn't deeply affected . So brave & giving.
I agree that there are a gazillion forums that I don't know where I'm posting sometimes. I usually look at Active and if I see an interesting title & mught comment. Sometimes it's to educate myself, I research every stage because you never know. Most times I just read. I've seen questionable comments in forums I post. Like a few chemo, recon, surgery, single, emotional etc. people are people. Some don't even know that they made rude comments and some don't know when they're over reacting to an obvious innocent ill worded comment. I just skip down to the next comment.
I've read that it's barbaric and ill thought out to have a bilateral if cancee is only in 1, as I came out of such surgery. Or the "I'm not lazy, i couldn't lay around I came out of surgery exercising within a week" I had no choice I was in tremendous pain. The reading about people DH being great & super supportive in the single and dating after cancer and surgery forum & You just broke up & its difficult doing treatment alone...being sick after chemo with no one to call & people post why dont you call someone. ??!! i have no One. thanks for making me feel like a loser....What's ironic is the people who make such comments really are not being mean spirited. Just trying to help & ask questions.
We should help & be thoughtful and if u read something you don't like skip it. It's like TV or radio. You can bypass. I've also been in forums where stage IVer have hijacked it. I'm laid back so i isually just chuckle. when you think about it we all are probably a little guilty of some uncomfortable comment to at least 1 other person and is unaware. But we're still sisters -
I loved your post Softness1, especially the last sentence:but we're still sisters. It says it all.
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I still have not had any clarification on why.
Why we should be exposed to the threads titles and posts if we are not allowed to post?
Please explain that to me... we should watch and be silent? WTF is that?
You may not have said that stomy, but your way of saying it... gets perceived that way...
How do you know i dont have another life threatning disease?
How do we know people who say they are stage 4..really are?
So if someone wants to post should they create an account and just say they are stage 4? Do mods ask that staging be proven?
Please....
IMO...if stage 4 ppl want privacy why the fuck are the posting publicaly???
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If you read my post you will see i did NOT write i could be stage IV tomorrow or even imply that so don't project that on to me.....you twisted my words to make them say something completely different .........i said i would not post here and i wont un less i am accused of writing something i did not........
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Celine,
No one can stop anyone from posting in the stage IV forum. It is, as you point out, public. That is well known to those who are stage IV. If someone chooses to ignore the request in the forum heading, so be it. If you do choose to respect what the forum heading says, great. As to whether someone is being truthful about being stage IV, we will never know. That is the case with anyone on Internet forums and is a reality of life on line. As to thread titles, we all see them under all topics. Many just choose to not post under topics that they have no first hand experience with, voluntarily.
You seem very passionate about this issue. If it is important for you to post in stage IV, then do.
Caryn -
I think we need to leave the couple of folks who have taken this personally and are upset to continue this discussion among themselves.
This isn't too different then the blow up over the Alternative forum last year. Guidelines were rewritten and posting, I believe, is now just primarily Alternative enthusiasts. They needed their safe place as well.
Thoughtful people will read the discussion Athena linked that arrived at the resolution and try to walk even a few feet in our shoes. -
do you only post because u have experience?
I post to ask questions... to share my heart... to be part of a conversation
And no... its not important for me to post in the stage 4 sub forum..
But i am passionate about people.. and i abhor exclusions for no reason.
You, or anyone else has still not answered the question... why if we are not allowed to post ...should we be forced to see the threads.
If the moderators dont want us to post there... then IMO it is their duty to keep it out of view of non stage 4 people..
I propose if it is so important for stage 4 people to be "left alone" ...then make the subforum private.
This is ridiculous...
Do stage 4 people here want the "attention" of posting ... but not the responsibility of answering for their posts to anyone on the forum?
I mean no disrespect... i am only trying to understand why you would shut us out
Why should i, or anyone else, have to be exposed, in this public forum...to posts that we are asked not to respond too?
It seems very egotistic to me to do this...
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Chickcadee...
I run an alt forum... there are many out there.. if the alt community needs privacy.
As the mods have said... this is a public forum...
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