Protest, move or put up with it?

Aussiegirl76
Aussiegirl76 Member Posts: 12
in Esophageal Cancer #1
Many of you are far more articulate than me in your open letters and tributes, but i need to say something. I am a newbie and was halfway through reading a massive post from William about my dads fight against ec and his post was deleted before I read all the links. I am furious. I am angry my dad has a cancer that is likely to take him away from me before my youngest child starts school. But I am far more angry that someone at a desk has clicked a button and refused me access to a vast quantity of important advice on how to help my dad to live with ec, and maybe even survive it. I have emailed them several times and they have not even bothered to send anything back. I consider this personal.

I feel like we should all launch a full protest, bombard them with phone calls, hourly emails, lists of signatures. But I don't know that they even care, we may just end up banned and gone and then not here to help the next batch of newbies.

Are there enough people staying here? I know there is fb page ( I can't access it) and a website I have bookmarked for when it's live.

My dad is in a fight for his life. I know i will need some support to help me cope and some advice when we have questions or he needs help. I am struggling with staying with a site that has so little regard for our opinions, and deletes our inbox messages along with years of williams advice and support. Even if it means losing contact with the best resource and bunch of patients and caregivers I have found.

Are you guys fighting, moving on, or just sitting here quietly? I assume csn are ignoring our pleas and hoping we shut up soon. Or leave.

Comments

  • norma2
    norma2 Member Posts: 479
    #2
    going to Facebook
    I am going to Facebook. I already started a discussion on how I just am livid about William's being deleted. See you there.
  • BMGky
    BMGky Member Posts: 621
    #3
    EC families need this board
    Due to its affiliation with the American Cancer Society, search engines are going to find this website before they find a smaller, less known site.

    For those who do come here, we need to be here to help them as we were helped.

    As soon as the other sites are set up and going, daily a new post should be put on this board with subject title: Alternate website for more EC information. In the body, list the one or two websites that members here are developing. This way newbies can have access to the survivors who have much to offer who no longer participate here..

    Further, reconsider your donations to the American Caner Society. I know I donated last year because of this site. I will have to think awhile as to my continued support and amount.

    Stay on this site to help others and in the hopes the Marshalls can return. I believe that the Marshalls, in spite of how they have been treated by whoever wields the wand of banishment, devoted their energy and time to helping any and all that asked. They are such kind people that they would not want their treatment to cause others needing help to lose this resource. Let's all continue to pray for their return and for greater understanding by this discussion group moderator/censor (?) of the value of the Marshalls' work. Please continue to post here as well.
  • norma2
    norma2 Member Posts: 479
    #4
    BMGky said:

    EC families need this board
    Due to its affiliation with the American Cancer Society, search engines are going to find this website before they find a smaller, less known site.

    For those who do come here, we need to be here to help them as we were helped.

    As soon as the other sites are set up and going, daily a new post should be put on this board with subject title: Alternate website for more EC information. In the body, list the one or two websites that members here are developing. This way newbies can have access to the survivors who have much to offer who no longer participate here..

    Further, reconsider your donations to the American Caner Society. I know I donated last year because of this site. I will have to think awhile as to my continued support and amount.

    Stay on this site to help others and in the hopes the Marshalls can return. I believe that the Marshalls, in spite of how they have been treated by whoever wields the wand of banishment, devoted their energy and time to helping any and all that asked. They are such kind people that they would not want their treatment to cause others needing help to lose this resource. Let's all continue to pray for their return and for greater understanding by this discussion group moderator/censor (?) of the value of the Marshalls' work. Please continue to post here as well.

    Very smart, thanks!!!
    Thanks for the advice. Good idea.
  • K_ann1015
    K_ann1015 Member Posts: 500
    #5
    BMGky said:

    EC families need this board
    Due to its affiliation with the American Cancer Society, search engines are going to find this website before they find a smaller, less known site.

    For those who do come here, we need to be here to help them as we were helped.

    As soon as the other sites are set up and going, daily a new post should be put on this board with subject title: Alternate website for more EC information. In the body, list the one or two websites that members here are developing. This way newbies can have access to the survivors who have much to offer who no longer participate here..

    Further, reconsider your donations to the American Caner Society. I know I donated last year because of this site. I will have to think awhile as to my continued support and amount.

    Stay on this site to help others and in the hopes the Marshalls can return. I believe that the Marshalls, in spite of how they have been treated by whoever wields the wand of banishment, devoted their energy and time to helping any and all that asked. They are such kind people that they would not want their treatment to cause others needing help to lose this resource. Let's all continue to pray for their return and for greater understanding by this discussion group moderator/censor (?) of the value of the Marshalls' work. Please continue to post here as well.

    well put & thought out
    well put & thought out response BMGky!
  • K_ann1015
    K_ann1015 Member Posts: 500
    #6
    Banning (esp of old posts) is UNFAIR to you and other newbies
    I was so saddened to read your post. I too found this site to help my dad who was diagnosed with stage 3 EC. Like you & many others, I did a lot of research and benefited from the knowledge-experience "bank" of the Marshalls. I am sad because it does not seem fair that you are being punished and you didn't do anything wrong! I looked at my so called "private" CSN email and all of his emails to me (with a lot of info) were also deleted! I can't imagine how you felt reading that post of Williams, seeing some hope, potential action steps, suggestions, etc--only to have it yanked away before your eyes.

    My dad survived for 2 1/2 years and had some great times, but I lost my dad last November. I am forever grateful for the support & information that I was able to from this site, especially including the Marshalls.

    I felt it was important for the administrator to see how this action has affected actual individuals affected by cancer. SO, I hope it is ok that I emailed her your post. Maybe she will realize that deleting all old posts was way over the top and maybe even reconsider????

    please private message me if you ever want to talk or email about this journey called EC. Another great informative resource is ECAN.org. It doesn't have the discussion board option though. I have worked with them for years to get EC month declared each April in as many states as we could.

    My thought and prayers are with you, your dad & your family. Your dad is lucky to have someone like you on his side. Stay hopeful. It will buoy your dad's spirits. There IS reason to hope! SHerri & Cindy are also great resources...hang in there!

    Kim
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #7
    K_ann1015 said:

    Banning (esp of old posts) is UNFAIR to you and other newbies
    I was so saddened to read your post. I too found this site to help my dad who was diagnosed with stage 3 EC. Like you & many others, I did a lot of research and benefited from the knowledge-experience "bank" of the Marshalls. I am sad because it does not seem fair that you are being punished and you didn't do anything wrong! I looked at my so called "private" CSN email and all of his emails to me (with a lot of info) were also deleted! I can't imagine how you felt reading that post of Williams, seeing some hope, potential action steps, suggestions, etc--only to have it yanked away before your eyes.

    My dad survived for 2 1/2 years and had some great times, but I lost my dad last November. I am forever grateful for the support & information that I was able to from this site, especially including the Marshalls.

    I felt it was important for the administrator to see how this action has affected actual individuals affected by cancer. SO, I hope it is ok that I emailed her your post. Maybe she will realize that deleting all old posts was way over the top and maybe even reconsider????

    please private message me if you ever want to talk or email about this journey called EC. Another great informative resource is ECAN.org. It doesn't have the discussion board option though. I have worked with them for years to get EC month declared each April in as many states as we could.

    My thought and prayers are with you, your dad & your family. Your dad is lucky to have someone like you on his side. Stay hopeful. It will buoy your dad's spirits. There IS reason to hope! SHerri & Cindy are also great resources...hang in there!

    Kim

    ECAN
    I can chat with the leadership of ECAN to see if they might be willing to host some type of forum. Not sure that is within their area of expertise, but I can ask.

Discussion Boards