Purpose
This
web site has been established for the purpose of giving
a web presence to the Breast Cancer Mailing List (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?
Breast Cancer List Issues
What do the List members themselves
have to say?
What
is the Breast Cancer List?
Since
the spring of 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. This
important resource takes the form of e-mail postings routed
through a central distributing address to the in-box at
each subscriber's e-mail program. Subscription to this
discussion list is free.
The
server that processes subscription requests and incoming
mail, and sends messages to subscribers is located at
the Memorial University of Newfoundland, St. John's, Canada.
The List was originated and is maintained by list owner
Jon Church. 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 other members post to the central
address. 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.
[Return to top]
Who
joins the Breast Cancer List?
At
the current time, there are about 500 subscribers, with
the majority from the United States, and the remainder
from Canada and 20 other countries around the world. Most
of these members simply read the messages, available either
as they are posted or in a daily digest form, and send
messages back to the list only rarely, as interest and
personal needs dictate. Despite these large numbers, because
only a fraction of members at any given time are involved
in active discussions (called "threads" for
the subject line which identifies the responses) 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
can provide a sounding board as well as a window into
the experience of breast cancer.
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. 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.
Over time, a few oncologists, surgeons, radiologists,
pathologists, and breast cancer researchers have also
generously shared their expertise. Oncology nurses and
others who work in related areas of health care also regularly
participate and offer their help. [Return
to top]
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 is such a large
pool of 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, or chemo-induced menopause,
or 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." [Return
to top]
Breast
Cancer List Issues
The
volume of mail, often nearing a hundred messages a day,
is sometimes a cause for complaint--at least until new
members learn ways of prioritizing their mail.
Like
any large, open community, the Breast Cancer List does
have its conflicts from time to time, as people forcefully
express opinions, debate unrelated issues, or drift away
from the List focus. While such conflict may feel disruptive
at the time, the conversation on the List always resumes
as the dialogue on breast cancer continues.
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 pain, 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 large annual social gatherings,
and many regional and local meetings throughout each year.
Everyone who is on the List is always welcome at these
get-togethers, along with their friends and family members.
[Return to top]
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:
"This
group is at its best when they can help someone going
through a rough time. You see, we have all been there
and understand the fears, nervousness and what ever else
plagues us at times like these."
"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."
"What
a wonderful support it is to know that you are out there
and that you truly do care. I can't get over the amazing
amount of help, moral & emotional support, sound advice,
and caring friendship that I have gotten from this list.
So many of you have touched my heart deeply. Not just
with how you have helped ME, but in sharing your lives
and opening your hearts about yourselves. I appreciate
you all so much."
"The
list has been therapeutic for me. As time goes on, I am
really not asked about my breast cancer and no one talks
about it. However, I still deal with it everyday and reading
the postings gives me the support I still need at times."
"I
feel inspired by everyone's courage and I appreciate the
sharing of the (often) deep thoughts."
"There
is a bias towards progressive disease, and that's pretty
scary. However, 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."
"My
wife and I have been lurkers for at least six months.
This List has been a great help. Almost all of our questions
have been answered."
"I
have only been connected to this group for a month and
it seems like a lifetime...I honestly feel like I already
know many of you personally. I also feel like I have been
accepted with open arms, hearts and minds. It has done
me a world of good and my family can attest to that."
"....
we have ups and downs, heavy times and times of great
hope and laughter. There is information exchange available
on all levels, from the technical to the psychological,
spiritual and emotional."
"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."
"Amazing
how much love there actually is in this tired, mean old
world. How sad it takes something like this to unleash
it."
"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."
[Return to top]
This
description of the Breast Cancer List was supplied by Musa
Mayer, an eleven-year survivor of Stage IIA breast cancer,
She is a Contributing Editor at MAMM Magazine, and the author
of "Advanced Breast Cancer: A Guide to Living with
Metastatic Disease," (O'Reilly, 1998) and "Examining
Myself: One Woman's Story of Breast Cancer Treatment and
Recovery" (Faber & Faber, 1994). Musa has been
a member of the Breast Cancer List since June, 1994.
Musa
Mayer
musa@echonyc.com
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