Ok, first I have to wipe the egg off my face, after posting more than a few times I have not received contact concerning the changes to the boards, today I received my call.
Thank you LLS for contacting me and for listening to my concerns and complaints. I appreciate the time and attention that was given to me.
After I noted my concerns, several of them were discussed with potential solutions that I agree would work if spend time learning how to navigate the new boards.
The most important piece of information that came out of our conversation has left me concerned. New people who find the LLS site will often be directed to the new boards. This is inevitable and something that will happen. Along with us wanting to keep these boards, who is going to be on the new boards to support, comfort, and give advice if we are here. That is not a question, it is a concern.
When I found the LLS boards back in October of 2011 I thought I was going to die and life was over. I knew nothing, my oncologist was not great at explaining, and the specialists had me headed for a transplant. A few days after joining, I was armed with information, knew a tiny bit about CML, and felt confident enough to challenge my oncologist's choices and try the TKI for a longer period even though it was not initially effective.
Because of these boards and the wonderful people that lifted me up in more ways than I could ever express or say thank you; I soon changed oncologists, responded to the TKI and have been undetectable since. You people will always be my hero's because I had responses within minutes of my first post and they continued throughout my journey. Along with the support, came many jokes, much needed laughter, and I have made a few friends that I would never have met otherwise.
Although we do not like change, I now believe we should support the new boards, for the people who arrive just as I did, scared, anxious, and thinking I had no choices. I am not saying I like the change, but I wish everyone the same opportunities as I had when I first found this site.