Joyce Crawley, Courageous To The End
Bill Schenley
http://www.globeandmail.com/servlet/ArticleNews/TPStory/LAC/20040715/OBCRAWLEY15/TPObituaries/
She took control of every aspect of her treatment in a long battle
with cancer, and urged others to do the same
By Simon Beck, Toronto editor at The Globe and Mail.
Joyce Crawley demonstrated that courage is not just about climbing
mountains or bravery on the battlefield. For the final 11 years of her
life, her personal battle was fought against the insidious internal
enemy of cancer. She died last weekend at the age of 58.
And while she would never have wished her fight against the disease to
be the defining factor of her time on Earth, the manner in which she
carried it out stands as a positive and uplifting memorial.
In 2001, a year after Joyce was told that the breast cancer previously
thought to be in remission had metastasized into her bones, she wrote
an article for The Globe and Mail to express concern at a medical
study casting doubt on the value of breast self-examination. Most
women she knew had found the dreaded lump themselves.
"I don't want my story to be too pessimistic. There's a lot of hope
out there," she wrote. " But your life is not only in your doctor's
hands. It is in your hands, too."
The lines were typical of Joyce's calm, but dogged approach not only
to her own illness; she was equally determined to get the word out to
all cancer sufferers that they had to take charge of every aspect of
their treatment. From her own experience with health-care systems in
cities around the world, she had found that expecting doctors to be
able to do everything that could -- and should -- be done was a
dangerous mistake.
Phillip Crawley, publisher and chief executive officer of The Globe
and Mail, met his future wife in 1960, when they were both in their
mid-teens, at a youth club in their native Gateshead in England's
northeast. He'd gone for the table tennis, while she spent most of the
time dancing to the Drifters. What attracted him to Joyce was not just
her sunny disposition, but a noticeable feisty streak.
She began drawing heavily on both qualities when, in Hong Kong in
1993, she discovered a lump on her left breast after taking a bath.
Breast cancer being a relative rarity among the majority Chinese
population, it took several tests before doctors confirmed the
diagnosis.
For Joyce, whose mother had contracted breast cancer at the same age,
47, the news was chilling. Following a mastectomy, a course of
chemotherapy and five years of tamoxifen and follow-up tests, it
seemed that she had beaten the disease that eventually claimed her
mother's life.
But in January, 2000, just over a year after Phillip's career had
brought the family to Toronto from New Zealand, she began to
experience severe back pain, and tests revealed that the cancer was
back with a vengeance. A specialist in Britain said she might have
only three months, but at best three years, to live.
Although she proved him wrong on both counts, the next four years
brought a debilitating regime of chemotherapy, experiments with new
cancer drugs and exhausting trips to centres of excellence such as
Memorial Sloan-Kettering Cancer Center in New York and Boston's New
England Medical Center in search of even the slightest hint of a
miracle.
Joyce had only good words for the medical staff at Sunnybrook Hospital
in Toronto, where she spent a great deal of her final years talking to
doctors and anxiously awaiting scan results charting the sinister
progress of the cancer cells. But it was during this period that she
became a virtual one-person research team, avidly scouring the
Internet for the latest academic papers and educating herself on the
technicalities of the various (and there are many) forms of breast
cancer.
In each of the many cities the Crawleys sought help, the expression on
doctors' faces betrayed the surprise they would feel on being
confronted with a patient so well-armed as Joyce, Phillip recalled
this week. She would enter every consulting room clutching a dossier
of her case -- even down to the X-rays and biopsy samples from the
original diagnosis in 1993.
Her first-hand experience as a consumer of health care was one factor
that made Joyce butt heads with the system. But she had also worked
for 20 years as a statistician for the health-care research unit at
Newcastle University in England.
"She felt in many ways that the system wasn't working for patients,
and that it was very hard if you didn't have the mental strength or
vigilance to work on your own behalf," Phillip said. "Things often
slipped through the cracks, follow-ups didn't get done. She said that
unless you're really on your own case and know what you need to know,
you're at a big disadvantage.
"The lesson [of Joyce's case] is that you have to be an active
campaigner on your own behalf. It meant doctors would treat her with
greater respect."
She was determined to get the message out to patients at large -- not
only in newspaper articles, but one on one. In those long periods
spent in hospital waiting rooms, Joyce, always elegantly dressed and
hiding her pain behind a cheerful demeanour, would talk to fellow
patients at length, educating and empowering them.
It is a testament to Joyce's strength that of those who had no
knowledge of her condition, few would ever have guessed that she was
fighting a losing battle to stay alive.
To the end, she preserved the dry and caustic "Geordie" wit that is
the hallmark of all good natives of the Tyneside region of northeast
England.
She remained the cornerstone of the Crawley family, raising their
young son Cameron, now 14 -- they also have two adult daughters, Katya
and Lucia, who have given them three young grandchildren -- and being
the perfect hostess at social and corporate parties at their North
York home.
She would also indulge in one of her main passions, logic puzzles. One
of her small secrets was that she had, at Phillip's urging, applied to
become a member of Mensa, passing with flying colours.
She had the courage to join the family in a vacation last year camping
and hiking in sweltering summer heat at the foot of the Grand Canyon,
amazing the guides that someone in her condition could have made it
through without complaint. But her battle was coming to an end.
In May, surgery to remove fluid from her lungs was unsuccessful, the
cancer spread and she developed pneumonia. Two weeks ago, doctors
talked about trying a new drug, Faslodex, that had just been approved
in the United States, but Joyce was too weak to risk it.
She went home and, under pain management, died peacefully in her
sleep.
A happy postscript to Joyce's story: Her daughter Lucia was able to
benefit from Ontario's policy allowing women at risk to have a
blood-screening test for the gene that increases the risk of breast
cancer. The result showed that she did not inherit the gene.
A memorial service will be held at Timothy Eaton Memorial Church, St.
Clair Avenue West, Toronto, on Monday, July 19, at 11 a.m. Donations
in lieu of flowers may be made to Sunnybrook and Women's Foundation
Breast Cancer Site Group. Joyce will be buried near the family home in
Cruwys Morchard, Devon.