For GUESTS who don't have Colon Cancer...

[Bev G]

deleted as irrelevant to this thread

xox everyone!

[Bill5107]

I wish there were another thread started for the stageism topic but there doesn't appear to be one.

I know there are folks that really believe that "stage 4" includes things anyone without it cannot understand. I still say that's bunk. The thread that Gaelen pointed to was a great case to study.

I also know that I want to hear from as many caregivers as possible for many reasons...one of the most selfish ones is to help get a window on what my wife perhaps isn't sharing with me or some insights that might be otherwise helpful. Even after today I say my wife has the raw end of this deal.

At the end of the day, we are all human and will make these simple errors over and over if we leave them unexamined. Heck, who now wouldn't say that perhaps we are at times cancer biggots too? Perhaps evcen CRC bigots! Breast cancer doesn't count! Neither does skin cancer. Or heart disease can even get in line!

Ugh..there's so much mischief to get into and none of it is new. Anyone who has any interest in any history will quickly see that we are repeating various histories over and over....

How will we respond to this challenge?

[TheBurn]

It's "funny" how different readers can see something completely different in the same writing. I just read through all 7 pages of the June thread that Gaelen referred to. (I don't know how I missed it back then.) While I saw a few people who could be said to have "stageist" attitudes, I thought the overwhelming majority of posters said that everyone's welcome here, everyone's valuable here.

And they are, despite what some people with louder voices may say. But they're entitled to their opinions and feelings also. We say it all the time when we welcome people to the Club, feel free to rant, whine, cry, complain, etc. We say it because this is the haven to which we retreat from our friends and families who can't handle our complaints or who we don't think can understand us. We say it because we all know what it's like to need to get things off our chests/out of our minds, even if those thoughts are irrational or negative or angry.

Short of personal, religious or political attacks, I don't think anyone should feel unwelcome or censored here. To the contrary, I think all of us, as readers, need to take all posts with a grain of salt and try to remember that the poster is coming from his/her own place and cut each other some slack.

[CRguy]

I don't specifically recall the post threads you might refer to, ............ and they are welcome as important members of this forum ... So are you.>>>>>>>
................................
>>>>>>>>>>>>>The choice to post is yours alone. Hopefully you will decide to continue to contribute to the forum.
Cheers
CRguy

I'm going to blow this wide open .............

KimT :
I must admit I am not really sure why you have chosen to attack me personally, concerning the contents of this entire thread ???

The post of mine which you quoted, is a direct response to ‪alphagam‬ and I fail to see how this is in any way

"attempting to make this board more exclusive and trying to keep people away."

???????

As to your concerns about prior threads, please consider the facts here : I am a moderator…for just over a month. I was not a moderator in Feb 2011.

If any poster has an opinion, they are free to post it. I believe if you review my posts since I joined in Feb. 2008, I am overwhelmingly in support of people being able to state their views without being attacked personally. I defend myself and others vociferously, which in fact, has run me afoul of previous moderators on occasion.

As for moderators not choosing sides, you are incorrect.
Moderators choose the side of the policy set forth by the folks who "own" the forum….in this case Molly and Sergei. When Molly was more active online she had many times, warned posters that we are NOT here to give medical advice, because we were not the doctor of the poster.
That is what this thread started being about : Unauthorized medical advice.
That is what my post referred to :
************************************************
To All Guests :

We are a supportive group of colorectal cancer patients and their supporters, but we are NOT here to give medical advice. If you have any symptoms or health concerns which prompted your visit here, please be advised that you should seek medical advice from your own healthcare team.

If you have a problem you should see a doctor.

If you wish to become part of this forum, please register, introduce yourself and you will eventually find others with whom you can discuss your situation, once you know for sure what that is.
************************************************
Again I fail to see how this supports your concerns that I have in any way been "attempting to make this board more exclusive and trying to keep people away".

You are obviously very concerned about some issues important to you. Continue the discussion in a nonaccusatory fashion and we can all contribute. If you simply wish to attack me personally, then take it offline and off forum, and send me a PM with specific facts which you feel support your arguments. If you feel I am not a suitable moderator then PM the board Admins or the head moderator and express your personal opinion , which as I have stated...is your right to do. I stand 100 % behind any decision I have made since becoming a mod. I have no control over decisions made prior to that.

...And yes, I will speak out and defend myself when needed, moderator or not.

CRguy

[MonaL]

************************************************
To All Guests :

We are a supportive group of colorectal cancer patients and their supporters, but we are NOT here to give medical advice. If you have any symptoms or health concerns which prompted your visit here, please be advised that you should seek medical advice from your own healthcare team.

If you have a problem you should see a doctor.

If you wish to become part of this forum, please register, introduce yourself and you will eventually find others with whom you can discuss your situation, once you know for sure what that is.
************************************************

I might word it a little differently:

To All Guests :

We are a supportive group of colorectal cancer patients and their supporters, but we are NOT here to give medical advice. If you have any symptoms or health concerns which prompted your visit here, please be advised that you should seek medical advice from your own healthcare team.

There are many medical conditions that can cause similar symptoms in bowel disease, and with further diagnostics, your doctor should be able to find the right diagnosis for you.

If you wish to become part of this forum, please register, introduce yourself and you will eventually find others with whom you can discuss your situation, once you know for sure what that is.

[Patience]

If the intent is to limit the forum to just those who have already diagnosed, then perhaps this is a gentler yet useful way to disuade those who are visiting before a diagnosis:

To All Guests:

We are a caring group of colorectal cancer patients and their supporters. This message board helps to bring survivors - young and old - together. Once the patient has been medically diagnosed with colorectal cancer, this is the place to find support.

Please take note that we are NOT able to give medical advice or diagnosis. There are many bowel diseases that can cause similar symptoms, and if you have concerns about your own symptoms, you should consult a physician. If you’ve come here because of an undiagnosed health concern, we encourage seeking the help of a doctor.

Once you have a diagnosis, if you wish to become part of this forum, please register and introduce yourself. Welcome, we hope our discussions are helpful to you.

But, and granted I am just a newbie to this forum, I'd hate to see someone who needed a bit of personalized encouragement to "see a doctor" be sorted out from the get go. Is the discomfort of having worried people (who are maybe afraid to see a doctor) ask basic questions here so bothersome that participants of this forum want to give up the chance to possibly lead someone to early diagnosis thru encouraging forum responses to "please see your doctor"? Do you really want to send them away with a sticky note goodbye?

[Deirdre]

Oh God,
I'm so sad to see this thread. I'm sad to see wonderful people exert precious energy on semantics. For a first time lurker, this thread does not give a nice impression of this wonderful place. I don't have cancer, my dad stage 3C can't have chemo so when it comes to knowledge or contribution, I have zilch to give. But I see the full heart with which everyone comes here, I see supportive, thoughtful messages. I see one word posts, smiley faces, photos, everything to show and reinforce the goodness of people which makes this club so very special & have the capacity to reach out to people hurt, upset, worried confused by impending, diagnosed, progressive rotten cancer.
I have nothing to give but supportive words & nothing to add to this thread except keep our energies on doing what's done best here: lurking, posting, reading, writing with a full heart. Having this forum makes a bad day better. What a gift.

[lohidoc]

Just to pitch in on the "medical advice" issue: There is no question in my mind that many readers will regard certain posts as "medical advice". Obviously such posts are not written with the intent of providing this but that is how some will interpret it.

It is a fine line. Many posters on this forum have a wealth of knowledge about CRC, have experienced the symptoms, the diagnostic procedures and the various treatments first hand. I would venture to say that many posters here know more about CRC and the various treatment options than most doctors. That imho is one of many strengths of these forums. My own experience is a case in point. I am a physician so you might think I am optimally informed. Not so! I was not familiar with the option of a port as opposed to a picc line. I thank those who gave me the 'medical advice' to push for it - it has made a huge difference. Same for the use of cimetidine - never heard of it. But I was impressed enough with what I read and I am taking it, onc agrees. Does it work - who knows?- but I am happy these forums put me on to it.

What I am trying to say is that no one should feel they cannot share their experiences, their knowledge, often first hand, of the various treatment options, their side effects and how to cope with these etc. But always, always, make it clear that before recommending any drug, treatment modality, supplement, catnip or whatever, discuss it with your doctor first!

What the accumulated knowledge on these forums does is inform and empower others to ask questions of their doctors, to raise options and issues that the physician in a 5 minute appointment does not. That is a good thing.

[Ladybug]

It was my impression that this message is NOT to exclude people from the forum. Rather to make sure that when people come here with worrisome symptoms that we know that they are at least getting the message that they should see a doctor. We don't always get a lot of these posts- but people get tired of responding to these posts- and I think it would be nice if we had a message that said everything that we wish people would know about making sure they see a doctor- and that their symptoms should be taken seriously by the doctor.

I still think they should be able to join and post? But maybe I misunderstood.....

[MonaL]

If the intent is to limit to patients and their caregivers, then I think this is the best version yet. I share the concerns expressed by Patience at the end too.

If the intent is to limit the forum to just those who have already diagnosed, then perhaps this is a gentler yet useful way to disuade those who are visiting before a diagnosis:

To All Guests:

We are a caring group of colorectal cancer patients and their supporters. This message board helps to bring survivors - young and old - together. Once the patient has been medically diagnosed with colorectal cancer, this is the place to find support.

Please take note that we are NOT able to give medical advice or diagnosis. There are many bowel diseases that can cause similar symptoms, and if you have concerns about your own symptoms, you should consult a physician. If you’ve come here because of an undiagnosed health concern, we encourage seeking the help of a doctor.

Once you have a diagnosis, if you wish to become part of this forum, please register and introduce yourself. Welcome, we hope our discussions are helpful to you.

But, and granted I am just a newbie to this forum, I'd hate to see someone who needed a bit of personalized encouragement to "see a doctor" be sorted out from the get go. Is the discomfort of having worried people (who are maybe afraid to see a doctor) ask basic questions here so bothersome that participants of this forum want to give up the chance to possibly lead someone to early diagnosis thru encouraging forum responses to "please see your doctor"? Do you really want to send them away with a sticky note goodbye?

[CRguy]

It was my impression that this message is NOT to exclude people from the forum. Rather to make sure that when people come here with worrisome symptoms that we know that they are at least getting the message that they should see a doctor. We don't always get a lot of these posts- but people get tired of responding to these posts- and I think it would be nice if we had a message that said everything that we wish people would know about making sure they see a doctor- and that their symptoms should be taken seriously by the doctor.

I still think they should be able to join and post? But maybe I misunderstood.....

Thank you Thank You THANK YOU !

THIS is in fact exactly what this topic is trying to deal with........ EXACTLY.
You did NOT misunderstand anything.
Everyone has posted good feedback....... YOU have nailed it.....EXACTLY.

Everyone is welcome to join.
WE are not their doctors.
THEY need to see their doctors.

Thank You
CRguy

[BrownBagger]

Bump

[Gaelen]

For those who think "we don't get a lot of those kinds of posts," the fact is that even one or two a month is a lot to people who are overwhelmed by the course of their own cancer treatment, and to those who are trying to be supportive to others. I just answered this thread today, Dec. 24, with the link to the ACS colorectal cancer symptoms and the advice to see a doctor if pain and symptoms persist. If I had a buck for every time I've had to type out that message on this and other support forums, I wouldn't owe MSKCC so much money. Seems like there should be some way to set up, in the background, an auto-reply to these "help me" posts that directs the poster back to his/her doctors.

The fact is that posts like the one I linked often crop up when the community is already undergoing stressful situations - the holidays, the loss of a member, difficult news about test results. I did a little looking around - last year at this time, there was a bump in newly dx'd posters. Don't know why, maybe it has to do with end-of-year physicals or medical expense accounts - but in any case, it's a drain on any community when support needs rise. When you're already low on emotional energy, it's harder to sort out new posts and decide which ones need the response "we can't help you, we're not doctors, you need to see a physician, this could be a number of things besides CRC," etc.

Maybe the approving moderator could automatically be the first reply to posts like this, with the appropriate "we're not doctors, we can't diagnose you, you need to see a doctor" answer. That would provide the information needed without taking an emotional energy toll on the rest of the community.

And while I get Molly's desire that the board be open and accessible to everyone who needs it, would it be out of the question to require that even guests provide a valid email address? If that were the case, a verification email could be sent prior to the post going into the moderation queue. This kind of message could be the verification email. And if it bounces (in other words, the "guest" made up an email address in order to be able to post), then the moderators could just delete messages without valid email addresses. Keeps true to the goal of accessibility, while insisting that the guest poster make an investment in reality, too.

Just my 2 cents.

[John72]

At the very least, can postings like the one Gaelen linked above be locked after that appropriate response?

[BrownBagger]

I approved that post with some hesitation. I thought about responding with a link to the "for guests and others....etc" thread, but decided instead to simply bump it and hope the poster takes the time to read it. Perhaps too subtle an approach. I don't think we need to lock the thread. Gaelen said what needed to be said (and I appreciate her taking the time to do that). Next time I think I'll just do as she suggests--approve the post and then give a brief answer and link to the "guests and others" thread, which I agree, should be stickied.