Posted on November 21, 2015
Mesothelioma Warrior Lou Williams has dedicated her life to raising asbestos awareness, building unity, and sharing her story to advocate for change. ADAO and Lou have worked closely together for many years and we were honored to recognize Lou with the 2014 Alan Reinstein Award. On Tuesday, Lou will join Dr. Allan Zimet and Tanya Segelov in the 2nd Annual Asbestos Safety and Eradication Agency (ASEA) International Asbestos Management Conference Australian trials and treatments session where they will present an update on key treatments and studies in Australia.
Below is the ADAO exclusive interview with Lou on her story, her message on the claimed “miracle” drug Keytruda, and her advocacy efforts moving forward. Lou has also started a petition to have Keytruda approved for the Pharmaceutical Benefits Scheme (PBS) for Mesothelioma. Please support Lou’s action by signing her petition. ~ Linda
Lou, when were you first exposed to asbestos? When did you first hear of “mesothelioma”?
Lou Williams
When my father, who worked in the building trade, came home from work, I often helped shake out his work clothes, which were covered in powder or dust. We later learned this to be asbestos fibres and I would often shake the dust off these then put in the washing machine (asbestos fibres on his overalls) and also vacuum his work van. Unfortunately through dad’s exposure he died of pleural mesothelioma in 1985 aged 54 years after a very painful and aggressive death. He lasted just a few months and every breath was painful to the last one he took aided with oxygen.
I was diagnosed later in 2003 with peritoneal mesothelioma and then pleural mesothelioma in 2009. Having had many extensive treatments including surgery, chemotherapy and radiation my body had become pretty toxic to treatments over the years and my tumours/fluid continued to grow throughout my body. Some treatments worked and I would get shrinkage, others stability … until mesothelioma tumours again would be on the rapid rise.
Tell me about Keytruda? How has this drug helped you and others? What do you want your government to know and do?
My body was shutting down this year, dramatic weight loss – 42 kgs (approximately 92 lbs.), oxygen 24/7, extreme fatigue, chronic bone pain and end of life stage. I was offered a lifeline just after Easter this year, 2015, by my oncologist: Keytruda, an immune therapy drug that stimulates the immune system to fight the tumours/fluid. I have this treatment overnight in hospital every three weeks (currently have had no. 11).
I now have regained quality of life and am back campaigning to get Keytruda placed on our Australian PBS (Pharmaceutical Benefits Scheme – free list) for all with mesothelioma so that patients have this life saving option despite ability to pay for it. I am also supporting others globally with this cancer by uniting in advocacy, education and awareness with The Asbestos Disease Awareness Organization (ADAO), The Asbestos Disease Foundation of Australia (ADFA) and Global Ban Asbestos Network (GBAN). I volunteer my time to help others who have an ARD (asbestos related disease) and those innocent victims who are yet to be diagnosed through asbestos greed.
As the GBAN Australian Director, what is most important to you?
Being a voice for others who are unable to speak out due to illness dealing with this brutal, painful and aggressive cancer. Raising awareness, advocacy and education on the global deadly dangers of asbestos sends a very powerful message to our Government that asbestos greed will no longer be tolerated around the world. We are working towards a total ban of asbestos and this will happen in unity.
What’s your proudest accomplishment?
My biggest accomplishment is being alive and retaining positive quality of life so I can continue my efforts to raise asbestos awareness.
Why should people attend the 2nd Annual Asbestos Safety and Eradication Agency (ASEA) Conference? What might they learn?
Participating in the 2nd Annual Asbestos Safety and Eradication Agency International Asbestos Management Conference to be held 22-24 November in Brisbane, Queensland, Australia is truly a dream come true for me, and one that I look forward to helping make a difference by speaking about Keytruda and my campaign/petition to have Keytruda fast tracked on our PBS for everyone with mesothelioma and other rare less known cancers too.
What is your “Asbestos Awareness Week” message for the world?
Asbestos is everywhere. Asbestos kills! There is no safe exposure!! We need in unity to keep fighting to get asbestos banned worldwide!
~~~~~~~~~~~~~~~~~~~~~~~~ Mesothelioma Warriors in Brisbane for the ASEA conference ~~~~~~~~~~~~~~~~~~~~~
Yesterday, Lou organized a lovely Mesothelioma Warriors’ high tea. As we gathered, we freely shared tears, smiles, experiences, and questions. During the tea, we snapped a photo message for Mesothelioma Warriors around the world who were with us in spirit, but not physically at the tea. Four of the Mesothelioma Warriors who attended the tea shared their feelings about Lou below …
“Pat and I can’t thank Lou enough for her and Keith’s support. She introduced Pat and I to Gail and Steve, where we all meet for a lovely dinner on the Gold Coast. Pat was diagnosed with Meso in 2012, we were in such shock and disbelief. It was comforting to meet others in our position. Lou has been such an inspiration and great support for Pat and I and we will always be grateful to her. Sadly Pat lost his life in 2014 after 2.5 years of severe pain. Soldier on Lou, I hope those Tumours keep on shrinking xx. I hope this is what you want it is so hard to put into words.” ~ Marilyn McCormack
“I have only meet Lou since arriving in this beautiful country, I have watched her go through her journey , and I find her to be such an amazing woman, I feel privileged to be able to call her my friend, one thing I do know is that she helps so many people , with all her advice and knowledge of mesothelioma , and she is loved throughout the world.” Linda Thomas
Mesothelioma Warrior Tea, Brisbane, AU
“When Steve was first diagnosed in May 2012, we were shattered. We felt so lost and alone and scared. I met Lou online and, through Lou, we met Marilyn and Pat. It really helped to know others going down the same painful road. Lou has been there every step of the way through all Steve’s ups and downs and, when he died in November 2013, she contacted me every day. This was such a life-line for me and meant the world to me. Lou has become a great friend and my life just wouldn’t be the same without her. I am so lucky to have found her and I am so proud of the work she does to promote Asbestos awareness while dealing with her own huge battle with Mesothelioma. She is one amazing woman.” ~ Gail Cook
“Lou is my warrior dragonfly. Lou came into my life with wisdom and knowledge on asbestos issues. She has introduced me to a circle of Meso warriors as well as sharing her own transformation and adaptability of life through her blog. Her dedication to Asbestos awareness and continual support is inspiration to us all. Lou has given me understanding of the deeper meaning of life and reminds me to have lightness and joy.” ~ Suzanne Howarth