Sep 07, 2012 - 10:59 am
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.