This amazing collection of true
stories reveals the drama that unfolds when lives are disrupted by a deadly
disease. Drawn from all over the U.S., Canada, England and Australia, they
provide a unique window into the doctor/patient relationship, which, at its
best, is a paragon of empathetic communication. At its worst, it can lead to
delays in diagnosis that adversely affect survival rates.
The majority of ovarian and
related cancers are not diagnosed until they have reached an advanced stage.
Women may suffer symptoms for months, even years, before the true cause is
recognized. They may be plied with prescriptions for anti-depressants,
hormones, and fad diets, when they complain of physical pain. Often, they are
told that they have an “irritable bowel” – a term with vague connotations of
some kind of character defect.
Wisely, the author allows each
individual to speak in his or her own voice, thus humanizing the dry statistics
and underlining the core of courage, indeed, the sheer heroism, that is
required of ordinary people when serious illness strikes. Husbands, sons, and
daughters have contributed especially poignant accounts. Asked to relive the
most harrowing time of their lives, they wrote through tears. Some stories are
tragic. Some will make you angry. But there are triumphs too, touches of humor,
and much joy.
Maureen Ryberg was born in
Ireland, raised in England, and met her American husband in Italy. A mother of
two, she graduated summa cum laude
from the University of Massachusetts, with distinction in Italian and
International Relations. She has held jobs in the banking and travel industry,
and worked as a translator. Her poetry has appeared in literary journals in
America and Ireland, including Poet Lore,
The Worcester Review, and Céide (Dublin).
On February 7, 2001, she woke from surgery to learn that she had an advanced
form of ovarian cancer. Her life has never been the same.
In
January, 2001, I got a phone call that changed my life. The eerily calm voice
of my gynecologist told me that my repeat Pap smear showed “Adenocarcinoma,”
and I would need to see a doctor specializing in women’s cancer. Cancer. The word exploded like a grenade in my mind. Caught
up in a vortex of tests, surgeries, and chemotherapies that left me
shell-shocked, I wondered: Why the sudden urgency? I had known for years
─ and with increasing certainty ─ that something was wrong. But I
had failed to get the message across to my physicians. I was unable to translate
my pain into words they understood.
I
tuned into faraway voices on the internet and found that I wasn’t alone. Women
everywhere were complaining of delays in diagnosis. Miscommunications.
True, some of them were thriving, enjoying lengthy remissions. Most were not.
It made my blood boil to read of how women were plied with prescriptions for
hormones, anti-depressants, or fad diets, when they complained of real,
physical pain. Some blamed themselves for letting symptoms go on too long.
Overwhelmingly, they wanted to reach out to alert others.
From
all over the U.S., as well as Canada, Australia, and the U.K., people sent me their stories. Some of the most
poignant accounts came from the husbands, sons and daughters of affected women.
Each one, whether tragedy or triumph, shows the human faces
behind the statistics. Each voice is a warning siren.
- Honey, there’s nothing wrong with your
reproductive organs, Paula
Williams’s gynecologist assured her, only days before she was diagnosed
with ovarian cancer.
- When Susan
Bowes-Johns complained of pain and heavy bleeding, she was thought to be ‘emotional’ due to her upcoming
marriage.
- My hairdresser knew something was wrong, writes Betty in Virginia, leaving us to wonder why her trained
physicians could not figure out what it was.
- I remember that I was getting pretty pissed
about Doctor B. and the bran flakes situation,” writes Brian Haughin.
To
be fair to physicians, it’s our own fault. Some of us are too timid, too
accommodating, too ready to believe. Why can’t we be
more like men? We fail to assert ourselves. We compartmentalize our complaints.
Our doctors send us off to specialists of all stripes, as if there’s a rule
that they must have a go at our gallbladders, our colons, stomachs, minds ─ anything ─ before the ovaries
are even considered.
Some
of these stories are paragons of a good doctor-patient “partnership.” Many will
surprise you with their humor, and their joy. All are instructive. Patterns of
behavior emerge that suggest that the patient’s attitude can make a crucial
difference. Carolyn Benivegna refused to accept a
diagnosis of IBS, and asked for a CT scan. Her doctor grudgingly agreed ─
if it would make her feel better. “Yes,” she replied, “it will make me feel better. Please schedule it for tomorrow.”
I
wish I had read Carolyn’s story years ago.
I
don’t want to alarm you. Odds are, you do NOT have
ovarian cancer. The symptoms described herein could be caused by many other,
benign conditions. Read Ellen Slingsby’s story, and
realize that this is the most probable outcome. But, please, arm yourself with
knowledge. Delays in diagnosis can adversely affect survival rates.
I’m
told that I will never be free of this disease, barring discovery of a miracle
cure. Yesterday, I began a new series of chemo treatments. Today, I’m back at
my desk, racing to finish this project. I feel a sense of urgency. Six women
who sent me their stories in the past year have slipped away. This anthology
fulfills their dream, as well as mine. If it saves even one life, I will rest
easy.
--
Maureen Ryberg
February
8, 2003