Network News - Winter 2009/2010 (PDF 3.7Mb - Canadian Breast ...

The Class of 1993 and the Birth of the
Canadian Breast Cancer Network
In March of 1993, I commenced my
own personal journey with breast
cancer. Like others who have
undergone this diagnosis, it was a huge
initial shock. Next was my path to
recovery, both physical and emotional,
but that would take some time.
Here’s where the stars (or fate)
aligned. Also in 1993 the National
Forum on Breast Cancer was being
held in Montreal. I was visiting my
dermatologist about a lesion on my
finger and he asked me if I had
heard of the Forum. He gave
me the pre-conference material.
I reviewed the information,
made some phone calls and, as a
result, was invited to the Forum.
It became a burning passion to
learn more about the disease. A
room full of women were meeting
during the Forum to discuss the
formation of a national network of
survivors. I was too sick to attend
the meeting; I was undergoing
chemotherapy but I certainly was
interested. Upon my return to
Fredericton, I again made some
phone calls and was invited to planning
meetings to develop this network. I felt
fortunate to be the New Brunswicker at
the table.
There were many organizing
committee meetings held in various
parts of the country. I remember
being in Toronto, Vancouver, and
Halifax. If passion could eradicate
breast cancer, the brave women at
the core of the organization would do
so. Some of these women were either
very ill or would later succumb to the
disease. Many are still alive and well.
The Chair of the network was Mary
Drover, a writer from Saskatchewan.
Mary was a wonderful woman;
bright and funny yet unassuming,
and already suffering from advanced
disease. She was diagnosed at 35 and
at 45 she was quoted in Survivor’s in
Search of a Voice: The Art of Courage as
saying “Cancer made me an activist. I
was given my diagnosis in a crowded
emergency room – then left in the
dark.” Mary died in the late 1990s.
By 1996, it was clear that Mary
needed to forgo the leadership of
the organization. Several women
suggested that I take on the role and,
rather naively albeit reluctantly, I
agreed to do so. Our first Executive
Director (hired on a part-time basis
in 1996) noted that our articles of
incorporation stated that the leadership
position be that of President and that
was the title I assumed. What can I
tell you about those beginning years?
There was virtually no money for
operations. Health Canada gave us
a $70,000 grant and this was used to
fund meetings from coast to coast
to grow our Network. I spent what
seemed like hundreds of hours on
the phone, often very late at night,
discussing our burgeoning network
with our Board. It was tough work;
there was laughter and tears.
Over the next couple of years, there
were three meetings with Federal
Ministers of Health. At our meetings
we requested funding support for the
breast cancer survivor network (CBCN),
inclusion of survivors in the Canadian
Breast Cancer Research Initiative (now
the Canadian Breast Cancer Research
Alliance), a postage stamp and inclusion
of lay participation on National Cancer
Institute of Canada (NCIC) scientific
review panels. Over the course of two
Liz Whamond,
Past President, CBCN
Vice Chair, Canadian
Cancer Action Network
Several members of CBCN’s Board of Directors circa 1998, including Karen DeKoning,
Catherine Tolton, Iona Crawley, Mary Rogers, Eva Bereti, Robin Moore-Orr
years these goals were achieved except
for the issue of a postage stamp and an
actual vote as participants to the NCIC
review panels. To this date, no progress
has been made on either front and I feel
it’s important to revisit those two items.
Advocates in the United States have
voting rights at
the table of the
Department of
Defence Breast
Cancer Research
Project (BCRP)
Review panels,
and the United
States has had at
least two breast
cancer stamps
issued.
During the
intervening
years, we have
seen some improvement in survival
rates but no fewer diagnosed with the
disease. New and novel treatments
bring the hope of a disease that is at
least controllable as a chronic disease,
if not curable. Early diagnosis has
seen me raise all of my children to
adulthood. Perhaps my granddaughter
will some day benefit from the global
work in the breast cancer arena.
Really this article is meant to be a
tribute to the women who founded
the Network and those who struggled
to fight to keep the dream alive and
relevant. There are simply too many
to be individually named here. All
did outstanding work. Under the very
capable leadership of other President’s
and the CBCN Executive Director
(Jackie Manthorne), the organization
has grown and flourished.
But there is no less need for the network
today than there was back in 1993. •
6 Network News Winter 2009-10