To the lls,nra,irs,isp,whoever,
This is our cml discussion board, and there are lls,all, etc discussion boards which were very easy to find. And very comforting for us.Especially those of us who have been through the exact same thing as our members. I've learned that there are several different kinds of leukemia, and they are just about all treated differently, and have different side effects.I have cml and I am older so I'm not computer savvy at all. Cml is a cancer that usually affects older people, but now we have so many younger people getting it it's heartbreaking. And all the other blood cancers are just as terrifying and heartbreaking. But there have been so many advances in cancer research we can actually breath once in a while.
these discussion boards are wonderful and we truly appreciate them. But we have cancer and we're scared and terrified confused and then something shows up in our blood work or we get different symptoms or side effects. Whether it's our babies,or children,mothers,fathers, any loved ones or ourselves. We go to a place where none of you can imagine. And I pray to God you never have to find out.
We are all like different familys now. Where we know each other well enough to be able to comfort one another. That's how we survive this horrible disease. I don't think it's right to expect us all to go to college to figure out how to work this new program of yours. If I have a baby who has cancer and the only site I can find is a cml site. Everybody is so kind and loving and compassionate but they can't comfort me because they have absolutely no knowledge about cancer in babies.Or what I'm going through.That's not enough I want to talk to another mother who is dealing with the same thing. On every one of our discussion sites we have people who have recieved phone calls from their oncologists that some abnormalities showed up in our blood work. Or a loved ones.
So his nurse gives us an appt. for 2 weeks later.To see our doctor. The first thing we do is go to our individual discussion board and post it. Our family immediately responds and tells us about this happening before to them or a loved one or someone on our site which immediately calms us down. If I had to get to my site right now I wouldn't be able to, and if I got there I wouldn't be able to find my family. We have many people right now in panic mode waiting and waiting for some answers from our doctors. They are certainly not in any shape to learn all this. Just before I wrote this post I was going through you're sight and I just happen to run across a small note from a new friend dx less than 2 mos. ago and is having many complications. It wasn't a post it wasn't listed it was there and I felt bad that I missed it. That poor girl has to wait until Friday plus travel to pittsburg to find out if she has 2 kinds of cancer. I know in my heart that she doesn't but we need to hear it from the doctors. I'm asking you to please simplify this new software. I have had cml 4 years now I just found this site last November. I joined right away but everytime I logged in I was rejected.
So I wrote to lls and asked them why I couldn't get in. It took 2 weeks because I didn't know my username I just kept typing my name to get in makes sense to me. They finally got back to me and told me my username was my e-mail address.Well stupid me I thought my name was Billie not Roadrunner. Sincerely Billie Murawski