FRANCES is forbidden, I THINK ALL MUST HELP OURSELVES...

[Bev G]

Karmel,
Can I start by saying I like you, truely I do. Not just because you have they hymn sung at my grandfathers funeral on your list and it always brings back memories of a truely wonderful, peaceable man who took time to show me the natural world.
However, would you consider that some replies in the PH thread have been the catalyst for some of the behaviour experienced to date that have caused genuine pain and put pressure on the moderators who do this from a position of goodwill? I was saddened by some peoples replies in that post as I held them in higher regard and I thought from their experiences, training and expressed ethos that they would have facilitated a position of tollerance. It seems the heavy end of this is being carried by members who have been hurt and moderators left to mop up.
Perhaps more self censorship from us all and a willingness to say sorry would go a long way.
Lets get back on course. Its never too late.
Kind regards to all ,
Stu

Stu: I appreciated your comments, and in case you didn't see this:

Bev G wrote:
Hi WW,

I appreciate that you posted the article, and appreciate all of your efforts to share with us what you are coming across as you are learning so much about DH's cancer. It is incredibly unfortunate that your thread evolved in to what it did, and I am more than willing to apologize for my part in that. I suppose we all have buttons, and we, over time, may develop some historical buttons. I'll ask you to just take that for what it's worth, because to fully go into it, I suspect, would arouse further conflict, which I have no intention of doing. I am so sorry for any hurt or anger you felt as a result of this, and of course anyone can post what they want (within Board guidelines) whenever they want.

Best wishes to you, and thank you very much for all your efforts at enlightening us,

Bev



Dear Bev,
Thank you SO much for your kind words. It really and truly means a lot to me. I appreciate it very much!!! Best wishes to you too!!!

[stu]

Thats great Bev, hopefully this can pass.
Kyle , hang in there, its tough but I wish you continuing success with your treatment.
Love Stu

[Lara239]

Karmel,
Can I start by saying I like you, truely I do. Not just because you have they hymn sung at my grandfathers funeral on your list and it always brings back memories of a truely wonderful, peaceable man who took time to show me the natural world.
However, would you consider that some replies in the PH thread have been the catalyst for some of the behaviour experienced to date that have caused genuine pain and put pressure on the moderators who do this from a position of goodwill? I was saddened by some peoples replies in that post as I held them in higher regard and I thought from their experiences, training and expressed ethos that they would have facilitated a position of tollerance. It seems the heavy end of this is being carried by members who have been hurt and moderators left to mop up.
Perhaps more self censorship from us all and a willingness to say sorry would go a long way.
Lets get back on course. Its never too late.
Kind regards to all ,
Stu

Stu: I appreciated your comments, and in case you didn't see this:

Bev G wrote:
Hi WW,

I appreciate that you posted the article, and appreciate all of your efforts to share with us what you are coming across as you are learning so much about DH's cancer. It is incredibly unfortunate that your thread evolved in to what it did, and I am more than willing to apologize for my part in that. I suppose we all have buttons, and we, over time, may develop some historical buttons. I'll ask you to just take that for what it's worth, because to fully go into it, I suspect, would arouse further conflict, which I have no intention of doing. I am so sorry for any hurt or anger you felt as a result of this, and of course anyone can post what they want (within Board guidelines) whenever they want.

Best wishes to you, and thank you very much for all your efforts at enlightening us,

Bev



Dear Bev,
Thank you SO much for your kind words. It really and truly means a lot to me. I appreciate it very much!!! Best wishes to you too!!!

I remember you posting this as well, it was very nice!

[betsydoglover]

As a lurker - who needs to lurk for mental health reasons - I am so sorry to see this "crap" taking place.

At a minimum we need to treat each other respectfully - I missed most of the drama, but know that internet abuse is just as real as in person abuse. CRC sucks and that fact should be right up front in our thoughts and interactions with one another.

The moderators are right to step in when things get ugly (and it is sad, though normal, that they do.

Take care all,

[rp1954]

Part of the problem here is bias dealing with nonstandard treatments. If you look at the archives, this site has had varying degrees of hostility to treatments outside NCCI and ASCO, even success attempted based on published literature. Sometimes CC has looked more like a Xeloda-Avastin-ASCO backend sales support site. These elements seemed to me to echo in Frances' launch point going ballistic with Jaynee in the deleted "memory-post RIP" thread.

I don't share "pH" as a basis of cancer treatment for a second, but do think that MSM overlooks patients' common problems in medicine and nutrition. Especially problems with too little potassium and magnesium that DO go chronically unaddressed. Sodium overload has been mentioned by critics from NCI as a possible contributory mechanism for rare, desperate successes of a rather infamous doctor, totally outside the colorectal sphere.

[Laurettas]

I am going to step in one last time and try to give as objective an opinion as I can about the initial catalyst for this blow up. I don't know all the background of what has gone on with all the people involved but I am looking at the pH thread alone.

I tend to think more like Ashlee and am somewhat of a skeptic about many of the alternative ideas partially because I have many family members who have been promoting them for 30 years and more. And, I have not seen anything to support most of what they have said.

That being said, when I read through the thread again, the first post that hit me as being pretty caustic and in your face was from KarMel, whom I like a lot. There may have been extenuating circumstances that would have made the others more confrontational, but since I am only looking at what is there, that was my first reaction. Then Bev agreed with KarMel and that seemed to get things going. I presume that Bev must have said something she later regretted, because she deleted a post. She also apologized for her part in the whole confrontation.

From my outsider's perspective, there really wasn't anything that should have led to such a deep bitterness from this particular thread. So I am assuming there is history of which I am unaware.

And, even though I tend to be a skeptic of alternative therapies, I have to say in this particular thread, my fellow skeptics came out looking the most uncharitable.

Again, my two cents' worth, and I'll gladly accept the change.

[Lara239]

I just dont understand why we cannot at least discuss alternative/complimentary cancer treatments on here. Even if everyone disagrees it is still interesting to discuss it since you can learn a lot from knowledge of others. To immediately dismiss a topic as "bad information" is not fair....unless you have actual facts to back this up. If you have actual facts, like examples of why this is bad information then you should speak up and give those examples/facts...but maybe in a nicer way?
Maybe there should also be a section to discuss those types of things. Just so the ones who dont want to see those threads do not have to even look at them (since they really seem to offend some people).
There are definitely some quackish ideas out there about treating cancer (and some quackish practitioners who prey on cancer patients) but since there IS no cure why not at least discuss them. It could be fun/entertaining/educational? Just saying......
I will give an example. My own oncologist (who is a colon-rectal oncologist and in the top 1% in his field for a highly ranked cancer treatment center) is VERY big on nutrition and exercise. He is mostly vegetarian. He walks 6 miles a day. His own mother also had colon cancer so he is very passionate about it. He spent a good hour lecturing us about how nutrition/exercise is so much more powerful than any chemo you can give a person. He was quoting studies at us they have done to prove this. He went on and on about it. He then spent only half an hour telling us about my husband's chemo protocol and how chemo is a toxin and poison and can work but we must also take great strides in changing eating/exercising habits for a true cure to take place. Now this is HIS opinion as an oncologist but it is a little different and not what we were expecting at all. It was certainly interesting and informative and he had factual information/studies to back up his arguments.
We also gave him a list of supplements we were interesting in taking and he would answer objectively like "that one is not necessary" or "this might really help". He is openminded which I WISH others were here. One thing that he did say is that they (at Vanderbilt) have really studied IP6 and know for sure it slows cancer tumor growth and my husband is not allowed to take that during treatment as they WANT the cancer cells to grow so they can kill them. He said he can take IP6 the rest of his life after treatment though...since they do know it works to some extent.
Anyway...food for thought. Not sure we should always shut down all conversations on nutrition or alternative care...we could miss something that way.

[JerseyGirl]

I just got through reading this entire thread and this is crazy (so call me maybe?- sorry couldn't resist), but I think something very positive can come out of all this:

I joined the club a year ago as a stage IV and used to post more, but have only been a lurker ever since s*it hit the fan a few months back with very similar circumstances. I saw many I admired "run away"/have not posted since. Im sure some remember so I won't go over everything again, but my main point is I really felt like sides were taken since some posts were removed and others that were hurtful got to stay.

So on to the positive.... These recent events and this thread in particular made me feel so "not alone" in my thoughts, and that many others agree. For months, I just thought everyone was on one side...and maybe there were many others but just didn't want to voice it. I give much respect to Kyle for standing up and everyone else who did so. I feel as though I want to participate more now, and strange but feel more comfortable in doing so.

I also need to point out that I respect BB's job as a moderator and contributions. Even though you deleted one of my posts and I was not happy for a while....you saved me from dehydrating by telling me about pickle juice I feel everyone is a value to this site, and maybe if things were changed a little we would have even more lurkers come out of the woodworks. The more the merrier

I never thought in a million years I would be 31 on disability/retirement ....sitting home on a Monday instead of work, spending my free time reading agruements on a site dedicated to colons...haha go figure but glad its here and love to you ALL!!!

[MissM]

I just got through reading this entire thread and this is crazy (so call me maybe?- sorry couldn't resist), but I think something very positive can come out of all this:

I joined the club a year ago as a stage IV and used to post more, but have only been a lurker ever since s*it hit the fan a few months back with very similar circumstances. I saw many I admired "run away"/have not posted since. Im sure some remember so I won't go over everything again, but my main point is I really felt like sides were taken since some posts were removed and others that were hurtful got to stay.

So on to the positive.... These recent events and this thread in particular made me feel so "not alone" in my thoughts, and that many others agree. For months, I just thought everyone was on one side...and maybe there were many others but just didn't want to voice it. I give much respect to Kyle for standing up and everyone else who did so. I feel as though I want to participate more now, and strange but feel more comfortable in doing so.

I also need to point out that I respect BB's job as a moderator and contributions. Even though you deleted one of my posts and I was not happy for a while....you saved me from dehydrating by telling me about pickle juice I feel everyone is a value to this site, and maybe if things were changed a little we would have even more lurkers come out of the woodworks. The more the merrier

I never thought in a million years I would be 31 on disability/retirement ....sitting home on a Monday instead of work, spending my free time reading agruements on a site dedicated to colons...haha go figure but glad its here and love to you ALL!!!

Ditto on the whole 30 "on disability/retirement ....sitting home on a Monday instead of work, spending my free time reading agruements on a site dedicated to colons..."

[shmurciakova]

Thank God I missed all of this drama, but I have to say that I am a believer in alternative medicine, especially the mind/body connection. I have posted threads on here before that have been "dissed" and I don't think there are many members who have participated on this forum for longer than I have. I posted a reply to someone not too long ago who was struggling with chemo (it may have been the young woman who was "scared off") I really cannot recall. I stated that perhaps she could stop her Oxy after 10 treatments instead of 12 or whatever it was, and that she should discuss it with her doctor. Frances tore into me like I was some kind of idiot for suggesting that someone should stop chemo which was working. I was not implying that the person should stop her chemo, simply that if it was intolerable that she should discuss with her doctor whether she really needed to continue for the full course.
In any case, I am a Stage IV survivor and an "old timer" on this forum and I would never bash anyone for posting about alternative medicine. I know there were a few "realists" on this forum that grew to be highly respected and I had taken issue to some things they had said in the past as well, maybe feeling they were unnecessarily "downers" at times, etc.
However, we always resolved our differences. I feel that I could take anything Frances dished out to me too, but a newbie might not be able to take on an aggressive personality like that.
I don't know what her story was and frankly I don't participate enough anymore to have a strong opinion on the matter one way or another, but we have to respect that Eric did what he thought was the right thing to do and I can say that she did really piss me off that time, I just did not complain about it and like I said, I can handle it.

What we do have to remember is that we (old members) don't know everything and things are constantly changing and God willing some of you will be around long enough to say that you don't even know what certain treatments are or what the side effects are....I don't want to see anyone's feelings hurt and who knows why one of us survive and others don't. I have to think that attitude and alternative therapies and other things we don't even understand probably play some kind of role, even faith, if someone wants to say that then it is their prerogative.
JMHO, Susan H.

[SkiFletch]

So I was away celebrating my 2nd wedding anniversary this weekend and haven't read a single one of the threads in question and as a result I'm not even sure why I'm writing on this one, but I just can't help myself. I've moderated on a pair of different forums before so I know how difficult things like this can happen and I have some appreciation for how challenging these issues are for the administration and moderators. I've furthermore participated in forums where the mods are EXCEPTIONALLY heavy-handed. In those other environments, that approach is almost required as the members are unruly and easily capable of being complete bigots as they are helpful. None of those dynamics exist here, something for which I am truly greatful. This place has simple rules. Don't give medical advice, and don't engage in personal attacks. And these rules are invoked so rarely, it surprised me a LOT when I first joined. I came from such different experiences with online forums that it was baffling that membership could really be as mature and helpful as they are. This place escapes the necessities of heavy-handed moderation because almost overwhelmingly members conduct themselves with civility. Sure people disagree and acute events like these may seem so glaring, but the overwhelming substance of posts here is at the very least mature. I feel many here are loosing sight of that which is surprising to me.

I'd like anyone to answer BB's question "...do you think it's OK to mock the dead on a website like this?" Because IF that's what actually happened, I can't defend anyone who did that. Personally, I don't care if someone has or has not been warned, that kind of thing has no place on a cancer support forum. Hell it's my belief that it has no place anywhere, but it's even worse here. Whether that requires a temporary or permanent ban, I'm not going to get into because I don't know any of the particulars. Anyone who complains about deleting such comments should consider printing out mocking coments about their own dead relatives and hang them on the walls inside and outside their own homes so that you see it daily, and so does the public. Live it yourself if you want to defend it. I'm of course assuming that someone (or perhaps 2 someones) actually mocked the dead when making those statements and assuming often makes an ass out of you and me. But I've yet to see anyone refute that the dead were mocked. We can argue all we want about warnings, failure to prevent situations from escalating, and even bullying. If an adult on this forum did mock a dead member though, those arguments are overshadowed by that troubling reality.

In many ways I'm glad I entirely missed this drama and instead spent my time celebrating with my wife.

[edgellc]

Very well stated as always Ski

[Staci's team]

It's a private website launched and operated by people who want to provide support to colorectal cancer patients and others with digestive disease and disorders. They entrust the mods, who are volunteers, with maintaining a smooth-running operation that serves the membership. I imagine they're upset that it's gotten this far out of hand, as am I. But that's the way it goes.

I'm posting as a member of The Colon Club's Board of Directors, but with a couple of caveats:

I'm speaking only for myself, not for any other board members
I've driven 1500 miles in the past four days going back and forth to the Des Moines Get Your Rear In Gear event for the release of the 2013 Colondar, so the only knowledge I have of the threads giving rise to the current situation comes from reading all of the responses to this thread that were posted up until about 10:45pm EDT tonight

Putting up a message board is easy -- the difficult part is its "care and feeding," so to speak, which manifests in the need to find qualified and competent people to help you moderate it. It's not as simple as finding people who happen to spend a great deal of time online and letting them volunteer to run the forum that is one of the public faces of your organization. I don't take lightly my responsibility to ensure that the people we select (and allow to continue) to be moderators have proven themselves over time to be level-headed, sensitive, and able to see all sides of a situation before making decisions about how to handle the problems that occasionally arise. In my three years on the forum, I've seen our moderators meet all of those criteria. There have been a number of cases in which they've had to walk a fine line, and I think they've gotten it right. I'm sure I don't know of all of those scenarios, as it's not really my job to know them -- that's why we have moderators in place. For the record, I do trust them and I would call each of them people of integrity.

I also have to trust other forum participants, though, especially when the "vibe" of the forum starts heading south. Everyone is entitled to his or her opinions, and neither conflict nor dissension on a message board is a bad thing -- until, of course, it turns into something that crosses a line and includes personal attacks. I've seen major ebbs and flows of the collective mood happen a few times over the past few years, and this is the first time I'm speaking out....because the fact is, as BB said, that it's just how it goes sometimes, but also because I want everyone to know that the Board of Directors does indeed keep up with what's happening here. You probably don't notice us very often, but there are a couple of us who post with some regularity, and I at least try to read the posts every day.

So to try to be fair to all here, since I believe that everyone has the right to have their voice heard until and unless they've given up that right based on their forum behavior, I'm going to bring up to the Board over the next couple of days that we really do need to have a sticky that stands apart from Molly's welcome message to address the "rules of the road" for participation in this forum. It's not fair to the moderators to have to take the heat when something like this happens and we can't immediately point to a set of netiquette and guidelines for our users, and by the same token it's not fair to forum participants who don't have any specific guidance as to where the line is drawn.

I appreciate and value the thoughtfulness I've become accustomed to seeing in posts from Eric and Kyle, so I'll admit that I'm personally unhappy to see the tenor this particular thread has taken. Outside of this thread, some people were able to find contact info for The Colon Club's president and sent her emails on this very topic over the past couple of days -- and I think it's great that people feel comfortable enough to do that. I'll apologize on her behalf for the late responses to those emails, since we were pretty busy with the Colondar release this weekend, and all of us were traveling home over the past couple days. I'm going to give those who didn't dig to find the contact info another method to get in touch with us if you feel you need to do so -- you can either PM me or email me at chris at colonclub dot com and I assure you that I will share your message with the Board. I'm also going to send all of them a copy of this post so they know that I've added my two cents to the discussion.

Thanks for taking the time to get involved.


Chris

[TheBurn]

Chris, thank you for your post and a lead in to what I wanted to say. First, my prefaces: I didn't see any of the threads at issue. I don't think I know the banned members. I've been around here a little over 2 years and do "know" the moderators and many of the "old timers." I am not one. I'm not taking "sides," if there are actually sides. What follows may sound harsh, but I'm just pointing out what, in my opinion, is the reality.

The CC discussion board isn't a public entity. It is but one part of the CC, which is a privately owned group with a stated mission. It is not a democracy. There is no freedom of speech. We can't decide to vote on an issue, make changes, etc. We get to participate "at the pleasure of" the owners. This may sound Draconian, but it's the reality.

No group is going to be a one size fits all. Particularly not one that addresses such personal, emotional issues such as those that affect cancer patients. The CC, however, in my opinion, has done better than can be expected simply by natural selection. The people you see who stay around are those that have significant compassion for others such that they share their knowledge and experience despite their own illnesses or their own recoveries. And new people sense this compassion and if it fits their needs and personalities they become part of the circle of giving and receiving. Not feeling comfortable here doesn't make someone a "bad" person; it just means this wasn't a good fit. It's reality.

Finally, the last few months have been difficult around here, at least for me. Many of the people who were more vocal when I first arrived have passed away in recent months; people with whom I had a connection, with whom I had formed a bond, who I would consider friends. Now Most of the screen names are unfamiliar to me, which is a constant reminder of who we've lost. So I might take as a personal affront something that was not meant as such. But you know what? That's okay because this is personal sh*t we're dealing with. Hopefully, we'd work it out quickly enough. But if not, and it takes a bad turn, I'm glad there's some arbiter to resolve it - at least as it affects the community. Occasionally the result might be drastic. That's the way it is. It's reality.

[mm66ny]

The CC discussion board isn't a public entity. It is but one part of the CC, which is a privately owned group with a stated mission. It is not a democracy. There is no freedom of speech. We can't decide to vote on an issue, make changes, etc. We get to participate "at the pleasure of" the owners. This may sound Draconian, but it's the reality.

I don't know what in particular was said, and I don't quite knw what it means that someone "mocked the dead." I have no idea what was said. And I know BB said something about "imagine if someone came to your house and said all this; you'd have a duty to kick them out.". That may or may not be, but this isn't my house or anyone's house. It belongs to everyone and no one. It sounds like aside from the comment being in poor taste or even offensive, there was a sense of loyalty to those who have passed on and are not here to defend themselves, or confront the personal attacks.

Having said that, the above quote kind of offends me whenever I hear it: what does it mean "there is no freedom of speech"? You're right, in the legal sense; this board is not run by the government, so you don't have the legal right to freedom of speech. But freedom of speech is not just a legal right: it is the codification of a concept, that through unpopular opinions, and discourse, and even bending of the truth (to some extent) we will arrive at the truth; tat ideas--like alternative treatments--can be discussed, and debated and dissected and rejected or affirmed. It's the marketplace of ideas.

Just because we don't have First Amendment freedom of speech on this board doesn't mean the concepts that underlie it aren't valid or shouldn't be tolerated.