Mar 1, 2013 07:10PM
I first entered the chat room right before I was officially diagnosed in March 2011. I was scared and overwhelmed. I had posted on the discussion board, but I really needed someone to talk to. The women in the chat room encouraged me, helped lift me up when I was depressed, cried with me, helped me to laugh in the midst of a difficult situation, shared their experiences and convinced me that I actually could get through treatment and that there was hope that I was going to be ok.
Real time interaction with people who have “been there, done that” is something only a chat room can provide. I went to my first oncology appointment with 4 pages of questions and then dropped off a 5th page!
Another important aspect of the chat room is that I can talk about anything, including stuff I would not want to see in print! I don’t have to worry that people are going to be able to read what I said months, even years down the line.
I think having specific topic nights (lymphedema, local recurrence) or specific group nights (stage 4, stage 3, her 2+) is a great idea! That way people who read certain forums (like the stage 3 ladies) could actually have a night to meet and chat with each other. They would already know each other from the discussion boards and wouldn’t be so intimidated by a room full of women they don’t know. The other chat room (the Staying Connected room) could be used for that, especially since it’s only being used for memorials and the annual secret santa).
Right now, the software tends to be unstable and it is very frustrating when new people come in and they haven't been in more than 5 minutes and they get booted out. I’ve often wondered how many new people just give up. Some of the regulars give up when they keep getting booted out!
I think it would be really helpful if the “How To Chat” page had more specific instructions on how exactly to use the software. People need to know how to login, how to enter the room, how to say something, how to increase the font size, how to make the size of the window bigger, how to ignore certain chatters, how to get back into the room if the person got booted and their “ghost” is still in the room. Not everyone is computer savvy. I've been coming into the chat room for 2 years and I still don't know what all the menus and options do.
Please restore the link to the chat room on the home page of breastcancer.org. Having the link on the discussion boards has definitely helped to bring in more new people, but I think having a link on the home page will help even more.
We used to be able to copy and paste out of the chat room in the past, but at some point we lost it. If we could do that, then we can direct newly diagnosed to various pages on the bco.org website. As it is now, people have to write the link down on paper and then type it in by hand.
In my opinion, the chat room is invaluable. It certainly has been in my life. No one is perfect and sometimes we fall short. However, the women in the chat room honestly want to help others. I know I want to be there for other women, just like they were there for me. Their kindness and willingness to sacrifice their time and energy to be there for new people as well as each other has made an impact on many lives.
3/9/2011, IDC, 4cm, Stage IIIB, Grade 2, 0/2 nodes, ER+/PR+, HER2-