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An open letter to the Cancer Survivors Network

BMGky
Posts: 666
Joined: May 2010

"proselytize |ˈpräsələˌtīz|
verb [ with obj. ]
convert or attempt to convert (someone) from one religion, belief, or opinion to another:" [Definition from dictionary]

As I understand, CSN has removed a member of this discussion group for proselytizing. I have reviewed your policy regarding religious postings. The two primary objections to any such postings were actual proselytizing for a particular faith and/or being disrespectful of another's religion. The member in question, never, in any of his posts, disregarded or abused this policy. To ask for prayer and to encourage prayer is not an violation of the CSN policy. Even Christopher Hitchens, an avowed atheist, was not offended by my well wishes and encouragement for prayer.

As caregivers and patients, our numbers are small; yet, esophageal cancer is the second deadliest form of cancer. Further, the rate of increase of incidence of this deadly cancer is one of the highest.

Do you or any of your monitors have esophageal cancer. Do you or any of your family members serve as caregivers of esophageal cancer patients. If so, you should know: The diagnosis is a shock. The treatment is brutal. The surgery is invasive. The recovery prolonged (if you are so lucky to get the surgery). The results are life altering. This site was a place of refuge, hope and information for EC families.

By removing a member who has spent the last 8 years giving hope for survival, you have done a disservice to all esophageal cancer sufferers and their families. You have deprived those yet to be diagnosed of valuable information and support. Of more importance, you have removed one of the most studied and consistent encourager and informer of the vagaries of the diagnosis of esophageal cancer.

The discussion group is now in disarray. Members leaving in protest. CSN refusing to respond to member queries and their calls for re-instatement of the removed member. You've asserted your authority. You've shown your power. What have you accomplished. You have left a void. Are you qualified and willing to answer each new, frightened soul who comes here seeking a glimmer of hope. Are you willing to look requested information and provide a knowledgeable response. You removed someone who was and did.

Further, without notice, you removed my "Sent" emails to the member in question. In your over zealousness to erase the existence of the banned member, you over-stepped your privilege in removing my emails. My emails were in no way in violation of your policy, and I request that they be recovered. So many people have been harmed by your thoughtless action. BMGky

Freida
Posts: 191
Joined: Nov 2011

Very well said BMGky. I can't understand what the people who run this site are thinking. There have always been religious posts made in the sense of giving comfort. I'm not personally a religious person, but certainly take no offense at other people's religious beliefs. I am one of many who have sent a message to CSN about this and have not received a response. They really appear not to care at all about the cancer sufferers on this forum.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

again---very wel said BmSky!
I did not always agree with the Marshalls - but have to say that I always respected their commitment, care & genuine humane concern for any family or person going thru EC! I too was shocked at how much was deleted from not only the Marshalls postings---but what was in own own private (I guess not so private) emails!

So ---info that I could share with family members is no longer accessible to me-- this does not punish the Marhalls as much as it punishes the innocent that will not benefit form their experience. Yes---I know that the Marshalls can be strong in their opinions---but I think that is out weighed by the benefit. I have felt that they have been harsh to some, but even that does not warrant this total banishment!

I agree--to post here we all need to be respectful, polite & caring.

SO---can we move on? and do that? care for each other---share with each other--make a difference?

Ban me- I may offend someone! But I am not as committed as the Marshalls & don't post as much--so I am not offending anyone---but then I am not BENEFITING anyone either!

We can not reward apathy here---- As a family member of 2 who have DIED of this disease, I can say---that hurt feelings (over a post(s) does not out weigh the BENEFIT of other posts that lead someone to a successful treatment or some kind of HOPE for a cure--even if temporary.

I think only someone that has experienced this knows what I am talking about.

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

Firstly, let me say BMGky and Sherri - you wrote absolutely beautiful tributes.

Now, to the CSN moderator:
I don't write on this forum often. Partly because I'm going good. But mostly because when I needed to know something, I would go to that box in the top right corner and write in the keywords. What do you think would come up????

That's right - a post that had been written by either William, Loretta or Sherri sometime over the past nine years. If I had known in advance what was going to happen this week I would have saved all those posts I needed (and STILL need!) onto a word document and saved it on my computer. Where can I find those links that were so valuable for me???

Not everyone here is from a country as far ahead in EC research as America. I would go to my doctor with certain posts open on my mobile and get my doctors in Australia to read it and tell me if Australia could also do that. Those posts I showed WERE FROM WILLIAM!!

Fair dinkum...this is a Cancer SURVIVORS network. How can we survive if we don't have access to Williams information he posted?!?!

A lady from work had her dad diagnosed with liver cancer this last month. I sung the praises of this site, said I don't know how detailed the liver section is, but showed her EC section and specifically mentioned how passionate William was, and that I hoped there was someone similar in the liver section. In hindsight I should have found her another supportive website. I won't be making that mistake again.

Seriously, did any moderator think in advance the consequences of deleting William's posts. What if someone new visits this site but has their early stage EC turn to stage 4 because they couldn't find the same information that I found to stop that happening!

Signed,
Disgruntled Sydneysider

BMGky
Posts: 666
Joined: May 2010

Hopefully, each person's thoughts will be read and considered by those in charge of discussion boards. Perhaps they can undo what has been done and reinstate the Marshalls as well.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Thank you for posting this discussion. I support you.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

We should not have to fight this hard to get William and Loretta back on here. CSN - EC Moderator/s have made a terrible mistake.

We too protest this decision and request a reverse in this decision.

The Reeds

BMGky
Posts: 666
Joined: May 2010

Knowing all that you have been through and facing, it is very kind of you to post and think of others. I know the Marshalls and all of us appreciate your thoughts. You are in my prayers. BMGky

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

I think that what galls me the most – well, the 2 things – are (1) that the rumored complaints from (apparently) 1 person can outweigh the outpouring of support from so many, and (2) that the moderator(s) can be so arrogant as to make a decision like this, of such obvious consequence, and not even deign to respond to our outcries. CSN is an American Cancer Society site that purports to provide a forum for we survivors and caregivers to, “…find and communicate with others who share your interests and experiences.” In my opinion, no one communicates his experiences with others more or better than William Marshall.

The About the American Cancer Society Cancer Survivors Network page says, “The purpose of the Cancer Survivors Network is peer support. Site content is contributed by its members. Their contributions reflect their own personal views, feelings, and experiences.” If that’s true, what exactly is the problem here? Since, as BMGky pointed out, nothing William said falls under the definition of proselytizing, then his postings appear to be nothing more than his personal views, feelings and experiences, which is consistent with the About the ACS page.

OK, according to the CSN’s Terms and Conditions, “No User shall use the Service to proselytize.” But the very next sentence says, “The religious beliefs of all faiths are to be respected. The spiritual beliefs of all Members are to be respected regardless of whether they are in accordance with the beliefs of any religious group or teachings of other Members.” Once again, if that’s true, then what exactly was so offensive in William’s posts that we children aren’t allowed to see them anymore?

But what about the arrogance of an organization that receives such a large volume of impassioned but reasoned and well articulated objection to its decision, and can’t even be bothered to respond and explain itself? This isn’t just a political blog where people post their opinions. As several others have said, this is a forum where many frightened and desperate people seek support, advice and information, and whether or not we all liked or agreed with everything William and Loretta said, there can be no doubt that they offered a ton of well researched advice and information.

I remember a post several months ago by a young woman who asked people to donate to a cancer fundraiser she was involved in. That post was deleted by the moderator, who posted his or her reason for deleting it, and I understood the reason entirely, as did the poster. So why can’t the person who made this much more consequential decision and global deletion of so much information take a few minutes to explain it to us? I confess I’ve lost a lot of respect for the ACS and the people to whom it gives the responsibility to moderate these boards. Shame on any person or organization that can have such influence and impact on so many vulnerable people, but can’t be bothered to explain itself. Shame.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Well said Bob!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Bob said:
"OK, according to the CSN’s Terms and Conditions, “No User shall use the Service to proselytize.” But the very next sentence says, “The religious beliefs of all faiths are to be respected. The spiritual beliefs of all Members are to be respected regardless of whether they are in accordance with the beliefs of any religious group or teachings of other Members.” Once again, if that’s true, then what exactly was so offensive in William’s posts that we children aren’t allowed to see them anymore?"

This whole thing could have been handled in a better way. To erase a wealth of information makes no sense. What motive could be behind a campaign that erases someone so sincere and helpful???

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Bob, Thank you for taking the time to research the terms and conditions and then write such a persuasive well thought out letter. I agree with you and all the others about William and Loretta. They were a huge asset to this community. We shouldn't have to spend our time fighting a moderators lack of good judgement when we have much more important things to be worried about and focusing on like CANCER!

Dave

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Well done for speaking out for William and Loretta.
I haven't posted in a while as I have been having some really tough times and when
I logged in this afternoon, I couldn't believe it.
William and Loretta give so much of themselves to this site and even when things
become hopeless, they offer their prayers. Please note the word 'Offer' CSN.
They encourage, help and spend so much time just caring that it was a travesty to
remove them from this site.
Please re-instate them both as we really need them here. I feel lost without them,
and I think I speak for many more of us.
They are the very best part of our growing family and we would like them back.

BMGky
Posts: 666
Joined: May 2010

Thanks for posting. Hope you are feeling better. Please keep us informed.

BMGky
Posts: 666
Joined: May 2010

Thanks for posting. Hope you are feeling better. Please keep us informed.

mrsbotch
Posts: 377
Joined: Oct 2010

We all feel the same way about Loretta, William and Wherries. Without them this site carries no weight. They give fantastic information from the heart. The site has no right to take their advice away from those who need it in a life and death situatiion such ASEV.

So theboard needs to get ttheir Sh.. together and realize that we are people IN NEED.

Barbara

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