Lou W. | Survivor Insight Series
Louise W. has been affected by mesothelioma since the diagnosis of her father. He developed the disease through occupational exposure to asbestos.
She came into contact with the deadly mineral several times in her life over the span of several decades: Her childhood home contained asbestos, secondary exposure from the dust on her father’s work clothes and occupational exposure from working a government job that exposed her to the toxic substance.
Currently she is an international advocate for mesothelioma and asbestos-related diseases.
We would like to thank her for speaking about her experiences with us. We are withholding her last name over privacy concerns.
Can you tell me about your father’s mesothelioma diagnosis?
My dad, Norman, was diagnosed in January 1985 and died 11 Sept. 1985.
He had for a number of years had a catarrh cough that used to annoy everyone, he was a fit man though the few months leading up to his diagnosis he had the flu frequently and also a very bad pain that doctors thought was a hernia. Eventually through fluid drainage and a biopsy he was diagnosed with pleural mesothelioma. No treatment gave him any relief – chemo/radiation made him sick as did morphine. He was on huge oxygen tanks just to breathe. My father went from a very healthy and active 54 yr old man to a shriveled up old man within a few months!
Was his mesothelioma caused be asbestos? Do you know how he came in contact with asbestos?
His mesothelioma was caused by asbestos. During the early 70s he worked as a solid plasterer and came into constant contact with asbestos in the plaster, insulation and numerous work sites where asbestos was in everything around him adding to his exposure.
Where did you turn to for information?
In 1985 there was no information available. Most of the medical profession had never heard the word mesothelioma. He was treated at the Peter Maccallum Cancer Hospital in Melbourne, Australia for lung cancer.
What was your family’s reaction?
My mother and father had been married for 31 years. They were going to grow old together! Myself and siblings lost our beautiful father. My 2 young daughters lost their grandpa. When dad died we were in shock. None of us knew anything about mesothelioma and asbestos! A lawyer came to see mum and dad when he was dying in the hospice, asked dad a few questions and got him to sign a statement. They ‘settled’ a claim with James Hardy after dad died. Mum got the funeral paid for plus $3000 for medical expenses that dad had incurred!
What were the events that led up to your diagnosis?
Unexplained chronic fatigue for 8 yrs prior to diagnosis. 18 months of misdiagnosis – ultrasounds/x-rays, I had a raised hardness on the groin area.
When were you diagnosed?
Eventually diagnosed December 2003 after an unbelievable night of intense pain from my abdomen to the groin area lump. Diagnosis with a fine needle biopsy. Surgery to remove mass of tumours – still doctors were looking for ovarian cancer instead they diagnosed peritoneal mesothelioma.
What were your biggest questions after being diagnosed?
Why me? Any other cancer I was prepared for as the biopsy had confirmed ‘malignant type cells’.
Was your mesothelioma caused by asbestos? Can you remember coming in contact with asbestos?
I had 3 exposures to asbestos! In our first home in the late 50s asbestos walls/dad would patch these when needed, make kennels for our pups/cubby houses for us kids.
In the early 1970s dad would bring home his work clothes covered in >asbestos dust – mum or myself would shake them out and put them in the washing machine. I also used to use the vacuum cleaner to ‘clean dad’s car’ as it would be covered in ‘dust’!
My third exposure was my first job working in for the Health Department (Commonwealth Government) as a data processing operator using huge computer type machines punching in pharmaceutical prescriptions from the medical field. When these machines would break down – the computer technicians would climb up a ladder near the machine, open the suspended ceilings and fix the electric cables, 4 times the allowed legal amount of asbestos in the ceilings!
Where did you turn to for information?
I contacted via phone various health organisations who did could not even pronounce the word mesothelioma. Eventually I was given a contact in Western Australia and this person who runs an asbestos organisation over there, rang me back and spoke for over an hour. I asked her everything such as how long did I have, what are my options for survival etc. – All grim!
I also went interstate and found a long term survivor of mesothelioma – he had then been alive for over 5 yrs.
What message did you leave with when you went interstate to visit another mesothelioma fighter?
This guy who decided to have nothing further to do with the medical profession as they could not come to an agreement on what. if any treatment they could offer him other than palliative so he decided to heal himself naturally!
I came away thinking, I am not brave enough to do that myself, I will give it my best shot, go with my oncologist who I have every faith in. I asked him did he have any long term survivors of meso, his answer to me was ‘2 lasted for 8 yrs, the other is into their 5th yr’ so that was good enough reason to go with him. I also heal my own self, follow a good diet, positive mind, enjoy life and give back to others.
Many people are scared of a mesothelioma diagnosis and will not talk about it with their MD. What advice or thoughts do you have for them and their family?
Myself, I needed to know everything about this, internet, long term survivors, support group, and I asked questions, what stage was I at when first diagnosed (answer was stage 4) how long- 2 months to a few months, etc. I needed to know what I was up against so that I could heal myself and give it my best shot at survival and living with mesothelioma. That is my secret – living with it.
I believe this is the key to getting through a diagnosis such as an ARD (asbestos related disease) to be empowered about it and then you can deal with it. Knowledge is a very powerful tool. Talking to others who have an ARD really helps.
What was your reaction to hearing your diagnosis with cancer?
I was in shock because even though my specialist when he told me ‘mesothelioma cancer’ he could not pronounce the word so I had to finish it for him! I remember the specialist saying ‘of you know about asbestos cancer’ – my response was yes – my dad died of it in 1985!
What has been your family’s reaction?
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!
What were your treatment options?
Major removal of tumours surgery, followed by 18 sessions of chemotherapy (cisplatin and gemzar).
In October 2009 I was diagnosed with pleural mesothelioma. I had 3 major operations followed by intense sessions of cisplatin and alimta.
What message would you like to send to the community?
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 1 asbestos fibre, because I am now their voice and will do anything to stop someone else going thru an aggressive horrible ARD.
I give of my time freely to support others including their partners, family and friends.
As Vice President and joint awareness/advocacy coordinator on the board of ADSVIC (Asbestos Diseases Society Victoria) Australia – I raise awareness and advocacy.
We would like to thank Lou for sharing her experiences with us and all mesothelioma fighters that continue to blog and reach out to the community.
How has cancer changed your life? Do you have any words of advice, encouragement, or support for others? Continue the conversation on Facebook .