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 mesothelioma community.
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 profession.”
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.