Purpose
This
web site has been established for the purpose of giving
a web presence to the Breast Cancer ListServ (more informally
known as the Breast Cancer List), for making it easy to
join, leave, or change the way mail is received, and to
share information about the List. By reading further,
you will learn more about this virtual community.
The
Breast Cancer List: A Virtual Community
What
is the Breast Cancer List?
Who joins the Breast Cancer List?
What do List members write about?
What do the List members themselves
have to say?
What
is the Breast Cancer List?
Since
1994, the Breast Cancer List has been available on the
Internet for women and men who have breast cancer, their
families and friends, medical and other caregivers, researchers,
students and other concerned people. Subscription to this
discussion list is free.
The List was originated and is maintained by list owner,
Jon Church, via Memorial
University of Newfoundland, St. John's, Canada.
To join, you can use the automated "Join
the List" page at this site, or you can
send an e-mail message to Listserv (the program that makes
it all happen), using instructions found on the page called
"e-mailing Listserv".
After receiving a confirmation message, the subscriber
will receive all messages posted to the list. You, in
turn, can send your questions and responses to the List
through this same address. This simple and effective process
creates an open and dynamic forum for the discussion of
any issue relating to breast cancer.
Who
joins the Breast Cancer List?
Membership
on the List is divided among those people who are newly
diagnosed and undergoing--or about to undergo--primary
breast cancer treatment, longer-term survivors who show
no evidence of disease, and those who are dealing with
all stages of metastatic disease. Husbands and partners
of breast cancer patients represent important voices on
the List, as do other family members of breast cancer
patients, particularly their children and siblings. And,
while breast cancer itself is a common disease, breast
cancer in men is not. Through this list a number of men
with the disease have been able to meet and share common
experiences.
Many
members simply read the messages, either as they are posted
or in a daily digest form or via Pete Bevin's archives.
These quieter List members may send messages back to the
list only rarely, as interest and personal needs dictate.
And some members lurk and never post. At any given time,
other members will be involved in active discussions (called
"threads" for the subject line which identifies
the responses) and frequently there will be more than
one active thread. No matter how busy the list is, however,
the
feeling on the list is that of an intimate support group.
Unlike
face-to-face breast cancer support groups, which may have
limitations in number of meetings, scheduling and mobility,
the Breast Cancer List is available twenty-four hours
a day. In their own time and their own homes, people in
crisis can ask questions, share, or raise issues, knowing
that within a few hours--and often within minutes--others
will respond in a caring and informative way. For people
in remote or underserved areas, and for those who may
be confined to their homes because of advancing disease
or debilitating treatment, the Breast Cancer List forms
a lifeline to the world, helping allay the isolation serious
illness often brings. For family and friends of breast
cancer patients, who often have no other opportunity to
voice their concerns or to gain understanding, the List
provides a sounding board as well as a window into the
experience of breast cancer.
What
do List members write about?
While
any individual message may contain a variety of topics,
the substance of posts to the List can generally be broken
down into four categories:
1.
Treatment and disease information:
The emphasis here is on medical issues, including various
forms of treatment, staging and prognosis, the meaning
of diagnostic information, research protocols and studies.
The efficacy and side effects of chemotherapy, radiation
and surgery are a frequent topic. Alternative treatments
are often discussed. Patient advocates on the List who
follow current research keep the List community updated
with the latest in current and potential treatments.
2.
Practical information: This includes, in part,
local and national events, insurance problems and provider
issues, advocacy efforts, media involvement with breast
cancer, books and literature on breast cancer as well
as other arts, where to find other sources of information,
referrals, etc. On-line resources are often mentioned
and up-dated on the List.
3.
Personal Experiences: Because
there are many participants, there are almost always several
people on the List who have had a similar procedure, side
effect or diagnosis, and who can provide perspective and
reassurance. Being able to search for information in the
List archives makes past discussions on any topic available
to new members, or to long-time members with new concerns.
4.
Emotional Support: Members
reach out to one another with love, prayer, hope, humor,
inspiration and a willingness to listen. Many of those
on the List are dealing with profound issues of loss and
powerlessness. For some, it is the first time they have
faced their mortality. Others speak of the loss of a breast,
radiation burns, chemo-induced menopause or chemo-brain--the
effects of chemotherapy or hormonal treatments. They worry
about their children, or their parents, or friends. Some
are aware they will not have long to live. Still others
grieve for family members or friends lost to the disease,
or express concern about their daughters inheriting the
breast cancer gene. Good news is enthusiastically shared
and received by all. Bad news is greeted with compassion
and gentle encouragement. Humor in all its forms often
serves as a relief from the "heaviness."
The
List is open at many levels for many needs: some people
ask a few questions, then sign off. Others leave and then
return whenever they need to. Still others join for their
own needs, and stay on for months, or even years, helping
others as they themselves continue to deal with the ongoing
fears common to most breast cancer patients.
At
times, newly diagnosed women report being disturbed as
they read about the treatments and fears of patients with
metastatic disease, or the declining health or death of
a member. But they also feel encouraged by hearing from
the women and men with metastatic disease who are living,
and living well, with their illness, often for many years.
Despite
the discomfort, or perhaps because of it, there is a feeling
of hope and connection that moves participants deeply.
They are inspired by the courage and the honesty they
see displayed. Close friendships are formed on the List,
and people stay in frequent contact and exchange private
e-mail with others they've met here. Over the years, the
Breast Cancer List has become a vital and evolving community,
with a rich history. There are annual gatherings, and
many regional and local get-togethers throughout each
year. Everyone who is part of the List is welcome at these
get-togethers.
What
do the List members themselves have to say?
Here
are a few unsolicited quotes from postings from a single
month that describe how people have come to feel about the
List:
"I
learned something important today -- it is not a weak
act (or one you should suppress) to ask for help. In fact,
reaching out to a community that hurts and laughs and
cries together made me stronger and gave me what I needed
today. I, too, feel honored and privileged to be part
of this group. You have all given me things which I never
anticipated but am so grateful for."
"...the
incredible strength, courage, tenderness, sweetness, caring,
and warmth of these women and their supporters is so overwhelming
and empowering that I wouldn't want to miss it. And, given
that people are incredibly patient and kind to each of
us as we post our first terrified, ill-informed message,
there is clearly plenty of room for newbies."
"I
have gained much support, both directly when I did ask
questions, and indirectly from lurking (reading others'
messages)."
"I
have never introduced myself to the list, but I value
it greatly. It continues to be my support group as I work
through eight months of chemo and radiation."
"This
list provides the comfort, the hope, the strength to continue
to believe. This list provides a sense of dignity and
self esteem to what can be a very undignified and confidence
destroying situation. You are all very real and special
to me and I thank each of you from the bottom of my heart
for all that you give at a time when your own needs are
so great."
"I
can tell you that this group has been the best thing that
ever happened to me. Trust me, you can say anything to
these wonderful women, they give you their heart, their
sad, wonderful, angry, and funny stories. We all have
something in common here and we all come to this list
with a different set and size of baggage, however when
we are dealing with this monster we suddenly are one."
"I
used to think I was an island. Since I have joined and
read this List I have found out I am part of the world."
Much
of this description of the Breast Cancer List was written
by Musa Mayer, who was diagnosed with Stage II breast cancer
in 1989. She has been a patient advocate since then, with
a focus on helping women with metastatic breast cancer.
She is a Contributing Editor at MAMM Magazine and the author
of "Examining Myself: One Woman's Story of Breast Cancer
Treatment and Recovery" (Faber & Faber, 1994),
"Advanced Breast Cancer: A Guide to Living with Metastatic
Disease" (O'Reilly, 1998) and "After Breast Cancer:
Answers to the Questions You're Afraid to Ask" (O'Reilly,
2003).
You
can reach Musa through
AdvancedBC.org
|
