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ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

Apparently their posts are marked this way when people withdrawfrom the forum.

yesyes2
Posts: 581
Joined: Jul 2009

Seems strange that she would want to leave as we were all nice and answering the posts as we would any one who had questions.  I wonder if the posts were being done by a troll to the site.  Most people when they want to leave just stop posting or answering.  Odd to me.  But I think i've spent enough of my time tring to figure this one out.  

Thanks Shady for the answer.  

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

I remember a few times this has happened. At least twice, after someone passed away, I assume their family removed them from the forum. In other cases, when someone passed away, their posts are still intact.   In one case, a member was banned from the site and his past posts are labeled this way. (Those who have been around for a while will remember our friend, John--Cobra}.  And I know of a case where a member left the forum and closed their account. They came back later under a different user name. In this case, it was obvious because the person jumped right back in and you could tell they knew us. 

Whatever hsppened with Dawn (Afraid Again) I hope she will come back. I was enjoying her posts and the responses and conversation that ensued. 

It seems that most people, if they no longer care to participate, just stop coming around but don't delete their accounts.

             

PBL
Posts: 182
Joined: Jul 2016

Difficult to tell for sure, as so many different threads were started, but I believe one particular conversation topic may have been expurgated, and this may have led to either some form of "suspension", or maybe voluntary withdrawal... This visible state of "limbo", as Max said, makes it all the more mysterious.

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

i dropped out for a while and came back a few months later with a different name. I had lost my mother, sister and 3 other relatives in a short period of a few months. I also found out my cancer was back. At the time I thought the participation on here was bad for my psyche. Too much illness.  My attitude has since shifted.

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

Has anyone had a doctor or especially an MD Anderson worker make any comments positive or negative about participation in online cancer forums? This is the only one I have ever been on.

PBL
Posts: 182
Joined: Jul 2016

I was referring to the most recent "vanishing" occurrence (Dawn)...

Never had any doubt as to your return to a "second life" here after that hiatus a while back.

Don't know if this answers your question, but the first hematologist I saw before chemotherapy actually advised me to turn to online forums. At the time, I found it shocking, as I was then looking for precise and accurate medical information, am not a social-network type, and had formed a rather negative opinion on patient forums based on what I had stumbled upon in the course of my initial research. 

Obviously, in this day and age of "ultramodern solitude" - as one poet called it - where patients are in and out of hospital too fast to get acquainted with others with the same illness, forums such as this do fill a purpose: that of offering a meeting point for a community of people who would otherwise never find each other, but often need to exchange information on a more "human-experience" level than what medical teams will offer.

I now believe it can be helpful in many ways - maybe especially for "chronic disease" sufferers such as you or me to have such a place to come back to. Helping newcomers to this cancer realm make sense of it by offering actual information whenever possible as well as sharing our experience can also be an unexpected way of "healing thyself".

PBL

Evarista
Posts: 253
Joined: May 2017

I do not recall any conversation that might have caused direct offense, but maybe the moderators were concerned about parts the "alternative medicine" one?  Also, is it possible that something happened over on the Chatroom side that got reported?   Wishing her the best of luck getting through, though.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Ev,

The Prostate Board is full of "alternative therapies" discussions all the time. Reefer, miracle diets, holistic imaging. None of it has been suppressed there.

Roc described some of the people who were kicked off in the past.  One, who became "Anonomous" for a period, was an MD in private practice (not an oncologist), although he did not identify as such on the Board (he wrote to me a lot via e-mail).  I have also known an actual urologist at Prostate (also not public). 

The whole 'Anonomous' thing reminds me of a common practice in the Soviet Union during Stalin's time.  Political enemies were routinely murdered after vanishing without a trace (Alexandar Solzhinitsyn documents in his masterpiece The Gulag that Stalin killed many millions oof civilians, largely due to starvation, during the farmer purges. These were not wartime occurances).

Political murder was dubbed 'achieving non-personhood' (usually a .22 round in the base of the skull).  Such individuals could never be asked about or discussed, ever.  Eveyone knew to pretend that they had never heard of them, and did so. They did not wish to become non-persons themselves.  This is shown in some detail in the old Robert Duvall movie Stalin also (1992).   There is a scene in that movie in which political hacks are applauding Stalin at a banquet.  But they realized in the course of clapping that they could not be the first to stop clapping, since that would indicate a lack of love for Uncle Joe. This could render them an "enemy of the state," and cause their own death.

Move along folks....nothing to see here !  We never had a member named 'anonomous,' since anonomous is not a given name. Obviously, therefore, there never was this 'anonomous' whom you alledge....

 

.

 

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

I do not understand your post.  The first part, where you doubted discussion of alternative treatments of cancer, being a cause for Dawn's disappearance,  I agree with.

Next, you say that I described "some of the people" who were "kicked off" in the past. I mentioned ONE (1), the only one I know of.

I really got confused when you started talking about Soviet political enemies, Stalin, Gulag, political murder, "achieving non-personhood" (in bold). Are you threatening us for asking about Dawn? 

At the end, you tell us to "move along folks. . .nothing to see here". It is obvious by the responses Dawn has received to her posts that we care about her. And we wonder what happened?

By the way, technically speaking, we are all anonymous here.

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

R,

The term Move along folks, nothing to see here is a popular one in the news media and in political commentary. This is true for at least the last few decades. It is a caricature of government statements, which commonly suggest that there is no meaning to the disappearance of anyone, or to tragic occurences.  For instance, since 9/11 at least, a jetliner can fall out of the sky, and before rescuers are at the scene, officials are already releasing to the press statements that "There is no suspicion of wrongdoing in this crash." 

Paraphrased, This was nothing folks; no cause for alarm.  A truck can drive down two blocks of sidewalk somewhere, and before the driver is identified, the same thing:  We have no evidence of wrongdoing...possibly a medical event. Simplified even further, what the governement is really saying to John Q. Public is we have not the remotest idea what transpired. But since we know how easily panicked people are, yet also how dumb, we are issuing our ludicrous pre-canned presser. 

Your bizarre wonderment if I am "threatening" someone defies any intelligent understanding.  And who constitutes 'us?'  I was furthering the discussion around Dawn, not styming it.  Everyone pitches their posts here in the hope that the average level of reader understanding is accommodated.

Since CNS made a rare statement of explanation, my hope is that this whole thread is now going dormant. Or, we can call it Anonomous, or whatever,

An anonomous voice from the ether,

 

Rexmax
Posts: 43
Joined: Apr 2017

I'm still here I also had been reading all her post (Dawn) as this site is where I get the most valuable insight from ya all. Don't have anything new to report except can't get into a Rheumatologist till October for my Vasculitis so gonna go back to Dermatologist and see what he can offer and the weird thing is the closer I get to next Rituxan (July 27th) it seems to be going away so really wondering if it's related. July 27th i will be halfway Thur with 6 left to go. Only other issue I seem is I'm a bit more tired and get short winded more quickly than I was prior to maintenance  probably age related 63 next week. Hope your all doing well I'm going on vacation next week and will be checking in on ya all have a great day!

PBL
Posts: 182
Joined: Jul 2016

Always good to read your news.

I imagine it is quite possible that Rituxan is the cause of your current issues. I did tell my hematologist several times about experiencing repeated skin problems that seemed to follow a pattern with each Ritux; that was always met with apparent indifference, so that I gave up mentioning it altogether.

Then, as I reached my last maintenance Ritux, out of the blue he asked me whether I had any skin issues. I was stunned, so just replied that I had already told him about that. I assume they probably regard it as too insignificant for them to spend any time on that kind of side effect - either that, or they have too little information about it to establish a definite causal link between the Ritux and the skin problems. Whatever the case, they choose not to be bothered.

All I can say is that although most of the extreme dryness has resolved now that I am through maintenance (since April 20), I am still having annoying little sores that take forever to heal.

Hang in there until you find a good dermatologist... or until you're done with maintenance!

In the meantime, have a happy birthday and a lovely holiday.

PBL

 

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

i agree with Max’s support of free speech. However in this case it is premature to assume anything other than “Dawn” or whatever his/her real name is, did anything other than just decide to quit. Rocqui is dead on that we are all anonymous characters on here, not real people. And Rocquie, Max was speaking metaphorically and I am certain he was not threatening anyone.

CSN_Bill's picture
CSN_Bill
Posts: 14
Joined: Sep 2016

Hello,

I would like to address this entire thread. Yes, we will "kick people off" of this site, but it is only for when they clearly violate the Terms and Conditions. For example, we block spammers almost every day. But, when you see a member's posts with "Anonymous User" as their username, this in no way implies that we have taken punitive action against this person. In fact, the vast majority of these, and there are very few, are usually those members who have been on the site for a while and wish to leave the community. Sometimes they share their reasons for leaving, sometimes they don't. But, we give them every opportunity to bring their concerns to us and allow us to address them. 

If they decide to leave, due to the vast history of posts, it is not practical to delete all of that information. So, we use the "Anonymous User" tag for these people. In doing that, we maintain the integrity of the threads, without having deletions and gaps that would take away from the previous discussions. 

ShadyGuy is right, to assume anything other than this person just decided to leave is simply wrong. And Rocquie also makes a valuable point, all members are anonymous here.

I hope this clarifies any misunderstandings on our policies. We truly appreciate the experience and thoughtfulness you all give to this community.

Bill

CSN Support Team

 

 

illead's picture
illead
Posts: 834
Joined: Aug 2012

I'm sure we all appreciate you clearing that up for us, I think we were all a bit stymied.  I feel bad that they saw the need to leave the forum.

Becky

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