The MCA BlogConnecting with others one story at a time
The following post is the first in a series of mesothelioma patient, survivor, and caregiver interviews entitled Perspectives in Mesothelioma. The first participant in our series is Louise "Lou" Williams, a mesothelioma survivor who serves as Vice President of the Asbestos Diseases Society of Victoria in South Melbourne, Australia. We'd like to thank Lou for not only sharing her story with the Mesothelioma Cancer Alliance and its visitors, but also for serving as a tireless advocate for the many victims of asbestos disease across the globe. Read below for Lou's unique perspectives and reflections on mesothelioma and other asbestos-related disease.
MCA: When were you diagnosed with mesothelioma? What specific type were you diagnosed with?
Lou Williams: After unexplained chronic fatigue for 8 years and 18 months of misdiagnosis, in late 2003 peritoneal mesothelioma was finally diagnosed. October 2009 I was again diagnosed with pleural mesothelioma.
MCA: Was your diagnosis of mesothelioma attributed to asbestos exposure? If so, what was the nature of your exposure? Was it occupational?
Lou Williams: Three known exposures-
- As a small child my father lined the outside walls of a laundry/toilet with asbestos sheeting. He also made a cubby for us kids utilizing the same product.
- My father worked in the building trade using asbestos products in the early 1970s. He died of pleural mesothelioma in 1985 at age 54. He would bring his work overalls home and I would quite often help my mother to shake them out ready to wash. Also I would vacuum his car and our home with continuing asbestos dust blowing out of the filter and in particular when I would empty the vacuum bags.
MCA: How has your diagnosis affected your family's or your own quality of life?
Lou Williams: My siblings namely my 2 brothers had school holiday jobs with our father in the early 1970s and it is continually on their minds of any early symptoms of asbestos disease. My husband is 100% behind me and with me in this journey - living the nightmare with me - enjoying the good times and the bad times!
MCA: What sort of treatment options have you pursued? What have you found to be most effective in combating the disease?
Lou Williams: Peritoneal surgery for the removal of tumors followed by 18 sessions of intense chemotherapy (Gemzar/cisplatin). Pleural mesothelioma required 3 major surgical operations followed again by intense chemotherapy (Alimta/cisplatin).
MCA: What sort of advice would you give someone who has been recently diagnosed with malignant mesothelioma or family members of those who have been diagnosed?
Lou Williams: Join an asbestos support group where a wealth of knowledge is waiting for them from others who are living with an ARD (asbestos-related disease). No amount of asbestos is safe - it kills! I believe that I am still here even though many other beautiful people have lost their lives due to no fault of their own simply because they inhaled just one asbestos fiber, because I am now their voice and will do anything to stop someone else going through an aggressive horrible ARD (asbestos-related disease). I give of my time freely to support others including their partners, family and friends. As Vice President and joint awareness/advocacy co-ordinator on the board of ADSVIC (Asbestos Diseases Society Victoria) Australia - I raise awareness and advocacy.
Note* With Lou's permission, this interview has been been supplemented by additional compelling information she has provided us with from other question and answer sessions.
Resources for Mesothelioma Patients and Their Families
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