Through an email interview last week Louise “Lou” Williams, of
Mt. Macedon, Australia, a wife, mother, grandmother and mesothelioma
survivor, shared information about her struggles with mesothelioma, her
thoughts on the disease and her advocacy efforts for the international
Louise Williams saw the devastating effects of mesothelioma when she
watched her father die from the disease in 1985. In eight short months,
Lou’s father, Norman, went from an active, healthy 54-year-old to a
deceased victim of the asbestos cancer. Unfortunately, less than 20
years later, Lou was faced with the same overwhelming prospect when she
was diagnosed with peritoneal mesothelioma at the age of 47.
Like many mesothelioma patients though, Lou’s diagnosis didn’t come
until years after she began experiencing unexplained symptoms, including
chronic fatigue, excruciating pain and a raised hardness in the groin
area. When one doctor told her to come back in two years for a second
test after finding an abnormal cell, Lou admits that “alarm bells should
have gone off in my mind; however I had every faith in the medical
Nearly 18 months after that, another doctor broke the news to her
that she had peritoneal mesothelioma and that she had just months to
live. By then, Lou knew she had a cancer, but she was not prepared for
it to be mesothelioma. They were looking for ovarian cancer.
“I knew too much about asbestos cancer, how aggressive and painful it was,” she said.
But Lou was not going to take her grim prognosis without a fierce
fight. With full support of her husband and children, Lou endured major
surgery to remove her tumors, followed by 18 sessions of chemotherapy
(cisplatin and gemzar). The strategy paid off. Lou enjoyed five years of
“reasonably good health” and lived her life on her terms.
Then in 2009, Lou received a second blow – she had developed pleural
mesothelioma. Lou now has the distinction of having a very rare and
unusual case of mesothelioma as her peritoneal mesothelioma is totally
separate from her pleural “outbreak/strain” of mesothelioma.
Once again, Lou and her family faced an aggressive course of therapy
to battle her mesothelioma. Through care from “her very brilliant
oncologist (Allan Zimet) and cardiothoracic surgeon (Julian Gooi),” Lou
endured three major operations, a three week stay in
the hospital, and 16 sessions of alimta/cisplatin chemotherapy involving
overnight stays in the hospital.
Now, it is nearly four years since completion of her last round of
chemotherapy and Lou has barely missed a beat in enjoying her life with
her family. Lou is “a mother to six children (2 beautiful daughters) and
(4 great stepkids) and proud Nana/Nan Nan/Nanalou to four beautiful
little grandchildren, seven step grandchildren and two step
great-grandchildren.” She visits them every chance she gets and just
returned from an extended trip into Melbourne where she was able to
enjoy “special Nana time.” In addition to traveling extensively
throughout Australia and Europe, Lou has traveled to the United States
to Santa Monica, Los Angeles, Disneyland and San Francisco, to Chicago,
up the Michigan coast, and to Niagara Falls.
When asked what her quality of life is, Lou responded with a
resounding, “Excellent!” She added, “I live in the moment and let the
universe take care of the big picture.”
Although Lou has endured countless surgeries and rounds of
chemotherapy, it hasn’t crushed her spirit. If anything, Lou’s energy is
buoyed by her passion to prevent others from having to suffer the same
consequences of asbestos as she and her father. Lou is probably the best
known mesothelioma advocate in Australia, and perhaps the world.
As a representative of the Bernie Banton Foundation, an Australian
foundation that provides support and information to asbestos-related
disease sufferers and their families while raising awareness of the
dangers of asbestos, Lou will take her advocacy to Washington, DC later
this month as a participant in the 9th Annual Asbestos Disease Awareness Organization’s International Asbestos Awareness Conference.
Lou has just recently started her own blog. Follow her musings and insight at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
Stay tuned for Part II of Lou’s story as she discusses her advocacy and her hope for an international asbestos ban.