Circle of Friends
Support System continued...
There's great loyalty, too, Elsa notes. "They roll out the Pink Bus when
someone is having an emergency, and everybody jumps on. When someone brand new
comes on board who has just discovered they have breast cancer, you see a whole
rallying of support. No matter where you are in treatment, there's someone out
there who can relate to you."
The women trade advice on every aspect of their experience, from insurance
to wigs. "You hate to see people make the same mistakes you did,"
Haines says. "When I found out I was going lose all my hair, I went into
panic mode. I let someone talk me into a wig that cost $300, and I ended up
hating it. And, my insurance company refused to pay for it! That's why I tell
people about their options, that you don't have pay an arm and a leg."
Certainly, the message board is not all good wishes and happy endings.
Members have disappeared from the postings, and never heard from again.
"You don't always know what's happened, but you can guess," says
Haines. "Spouses and family members aren't always aware of the boards, or
they don't know to contact us. They may not even be computer literate."
From Cyber to Live
Some family members, such as Haines' husband, John (notorious for the jokes
he posts), join in support of their wives online and offline, as he helped her
organize a get-together for the board survivors in Williamsburg, Va., in April
2000. Some 30 board participants and their families made the trek to finally
meet each other in person. Over the years, small weekend get-togethers continue
to be held around the country. "It was just about having a good time,"
Haines says. "John and I have made lifelong friends with these
There's even a cookbook of the ladies' favorite recipes, with proceeds going
to the Susan G. Komen Breast Cancer Foundation. When the book first hit the
shelves in 2001, the media took notice. Rosie O'Donnell's TV show was the rage
that year, and Rosie invited the cookbook authors to make a guest appearance.
"It was really cool," says Haines.
The televised appearance helped many put a name and a face to board members
they had known online only by their screen names. Breast Cancer: Friend to
Friend has remained the vibrant and supportive place created by its original
members. Breast cancer in the United States has become the most common cancer
in women (after skin cancer), yet the death rate has declined due to earlier
detection and improved treatment. Women and their families continue to seek out
each other and journey together on the powerful Pink Bus of hope and