Kokomo Tribune Article about BCforum
August 26, 1997
By Ann Hubbard,Tribune staff writer
Susan Frisius, South Hadley, Mass., not only brings smiles to breast cancer
victims through the Internet, she has taken her mission on the road.
Sunday she brought gifts she calls ``Wee Care'' packages, from 18 other
breast cancer sufferers, 960 miles to cheer an ailing friend in Kokomo -
Patricia McCombs, 827 E. Center Road.
McCombs, known as ``MC'' in the chat room of the Internet Breast Cancer
Support Group, was diagnosed in 1992 with inflammatory breast cancer. After
chemotherapy and a mastectomy, she was in remission for three years and then
it came back in her lymph nodes 1 1 / 2 years ago, according to daughter,
Michelle Nearon, known as ``Chell'' in the chat room.
July 7, McCombs was diagnosed with cancer in her bones, primarily in her
spine and in her liver. She had 15 treatments of radiation, and was recently
released from the hospital after a four week stay.
This is Susan's second trip to visit one of her Internet friends. The first
was to deliver a quilt made by another chatter nicknamed ``KK'' made with
quilt squares from several other support group members. The quilt was
delivered to a friend in Atlanta. After her visit with McCombs, Susan will
continue her travels and head to Virginia to visit the ``zookeeper.''
The presents were to show that somebody cares, Susan said. They may be just
a pressed flower from someone's flower garden or a special book another
member cherished. All of is it to say `don't give up yet.'
Susan noted that just because MC has not been online with the group lately
(due to her illness) doesn't mean they aren't thinking about her.
Also making this trip was Barb Fortin of Kankakee, Ill., who came with her
husband, John. Fortin is a 7-year survivor of breast cancer and a member of
the Internet support group. ``There's something that happens when logging
onto the chat room,'' Barb said. ``In this group we know everybody. We know
when new persons come on. She can tell us she feels bad and you know what
she feels like. There is an instant rapport.''
``It's hard to fake breast cancer. If you've had it you know it. It's a very
personal group,'' Nearon said. Nearon found the chat room by accident one
day and told her mother about it.
``She said it really helped,'' Nearon said. ``She wished she would have had
it the first time, because she felt all alone. She felt like the only person
with no hair, the only person who had a mastectomy. There are things that
she went through, that as a family we could love her, but we had no clue as
what to say.'' ``But with the support group, it's okay if you're upset, if
you want to vent.'' Michelle has found comfort there too.
``I remember when you came on,'' Susan said of Michelle's first chat. ``I
remember how upset you were about your mother. That really came across
really clear.'' McCombs said she was surprised about the visit. ``It's nice
to meet her and put a face with a name. I've never even heard your voice,''
she said to Susan.
``It's a very warm, nice group,'' McCombs added. ``They are friends even
though you haven't seen them. Everybody cares.''
Anyone wanting to join the Internet Breast Cancer Support Group can make
contact through www.lifetimetv.com/chat. There are instructions on how to
find the BC Forum, according to Susan Frisius, chat room leader. When online,
callers must go to the unmoderated chat room.
Anyone needing help with connecting can send an e-mail message to Susan at
frisius@javanet.com. Other information also can be obtained from Michelle
Nearon at her e-mail address, mnearon@netusa1.net.
They can't see the tears, but they know they're there. They can't see the
smiles either, but they're there as well.
They know because they have been there themselves. They are the breast
cancer survivors or surviving and they belong to the Internet Breast Cancer
Support Group on www.lifetimetv.com/chat. Some are family members of women
(and men) who are suffering with breast cancer.
The group was founded by Susan Frisius of South Hadley, Mass., who knew of
the site, but said no one was visiting it until she made some connections.
``I found other groups on the Internet and I invited them on. I just left my
E-mail on every bulletin.''
Frisius, known as ``Susan'' to her B.C. forum group, said her goal is to
take breast cancer out of the closet. She wants sufferers to know each other
and she also wants them to know there's no shame in the disease.
The group had its first meeting in December and now has 65 to 70 members.
There's a hard-core group of 20 that meets regularly through the computer
screen. The group is made up of women ages 26 to 63 from all over the United
States and Costa Rica.
Frisius was diagnosed with breast cancer in 1994. ``During my treatment I
was too sick to go out. And I already had used up all of my credit getting
rides to go to treatment. And I also had read in several places, that people
who joined support groups lived an average of five years longer. So I figure
every minute that I'm on there is time well invested,'' she said with a
laugh of why she started the group.
``That's one of the nice things about the Internet, you don't have to get
dressed up. You can come on in your P.J.'s. You don't have to leave the
house. You don't need to wear a prosthesis, or a wig,'' she said.
She frequently is teased on-line because, while chatting, Frisius stays cozy
and warm in her bed with her laptop computer and sometimes falls asleep
during chats. The chatting begins around 8 p.m. and sometimes goes until
midnight or after, depending on the subject, Frisius said. People are
usually chatting there Monday, Wednesday and Friday.
She identified the chats as one third heavy-duty breast cancer talk, one
third humor such as `why it's great to be bald' and one third how are the
family members coping.
``You can't keep it up for too long,'' she said of the cancer talk. ``It's
too intense. We last maybe an hour. And every once in awhile we'll have one
right after the other, but pretty much we try and break it up and try and
get as much fun as possible.''
Since laughter cannot be heard over the Internet, it has to be written. It
is
shown by typing `ha, ha' or `hee, hee,' a smiley face :), or even `LOL,'
which
stands for ``Laughing Out Loud.''
A lot of people don't like to join support groups because they say they're
too
depressing, Susan said. That's the reason she tries to leave them laughing.
``I don't like a new person to leave unless they're laughing.''
MC, Patricia McCombs, passed away on December 15, 1997 at 8:40 at home after a long hard struggle.
I will remember her as a gentle and quiet woman with a small warm smile
that made me feel happy to be with her. As she sat on her bed this past August, making small jokes about her reconstruction, she was a woman surrounded by love from her daughter, her grandsons, the members of bcforum and her pets.
Her daughter, Chell, found BCforum for her and we have been all the
richer for having known both of them.
When she came to Bcforum she always brought a feeling of gentleness into the room. I will miss her
Susan
Michelle's Page
To visit The Faces of Breast Cancer Gallery, click on the banner!
BCforum is a chat room for those who have breast cancer and for their friends and family members.
We meet at 8 pm EST every evening for information, hugs and laughter!
-
Information - because we need to be informed about all aspects of the disease.
-
Laughter - because it's more fun to laugh than it is to cry.
-
Hugs - because good friends hug each other.
To get there, click on the pink ribbons!!!!
Please email me if you have any problems accessing BCforum!
A listserv is an email group. To join a breast cancer or related listserv, click on the pink ribbon icon!!!!
Please buy all your BOOKS/VIDEOS/CDs/DVDs/GIFTS
through the link on my site to amazon.com.
A percentage of each item purchased through the link on my site
will go to help those with breast cancer who have met on the Internet,
meet in person!
Go Back To Susan's Page
Emailme
Sign My Guestbook
View My Guestbook
