Circle of Friends
'You Feel So Alone' continued...
She also gained perspective on her prognosis. When her oncologist advised
her to have a new type of treatment, she reached out to the group for support
"I went online and found that many who'd had the same treatment were
doing well," she says. "It was good to know that even though the
statistics weren't good, it was survivable."
Today, some eight years after treatment ended, Haines is still doing well.
"It's pretty much over," she says. "I don't much think about it
until it's time to go to the doctor again." Although she has other
volunteer gigs, Janice_78 has remained an active voice on the Friend to Friend
message board. "I love being able to use my experience, to offer some
hope," she says.
"Elsa" is the current message board moderator. "I love this
group of ladies -- they have faced life-changing circumstances with such
tenacity," she says. "They're all in various treatment phases, they
find each other, they're open to each other, to new people. They're accepted
for obsessing about their disease. Friends and family get tired if hearing
about it, they don't know what to say. These ladies let them talk."
The message board is all about openness, says "Olivia," who once
moderated the board. "They talk to each other on a very personal level.
There's a lot of venting, a lot of sharing of frustrations. They talk about
everything from recipes to what the kids are doing this weekend to their
treatment. They share anger at a doctor who isn't paying enough attention. They
talk about a medication -- how does it affect you, have you tried it before.
They talk about everything including their sex lives."
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."