Thursday, March 14, 2013

Double mesothelioma survivor maintains positive attitude and lives in the moment 14 March 2013
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.
Louise Williams relaxing on one of her many trips.
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 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.

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Nancy Meredith is a blog and web content writer with more than 20 years of professional experience in the Information Technology industry. She has been writing about Mesothelioma for 4 years. Follow Nancy on Google+

Thursday, March 7, 2013

Asbestos Free Future 7 March 2013

AMWU Communications officer interviewed me this afternoon to put an article on this website:
AMWU is working with community groups to try to get the Govt to take some decisive action in protecting the next generation against asbestos.
Rod Smith wrote this on facebook:
Bernie Banton Foundation Director, Geoff Fary chaired the Asbestos Management Review, a review that produced a ground breaking report. This report was universally accepted by all Australian Parliamentary parties - now it is time for implementation! No ifs! No buts! No asbestos!
Please support this initiative.
Open the site, click on the TAKE ACTION tab in the site tool bar, and lobby your MP (if you are an Aussie).
Please do it TODAY!
I am in contact with a 'friend of a dear friend' who lives in America, he is now just waiting for his daughter to arrive next week and once she does come, then he can close his eyes for the last time.  He is in so much pain and difficulty with breathing.  He has pleural mesothelioma and was only diagnosed Aug last yr.  He decided not to have treatment and basically went home and waited to see what would happen to him.  I feel his pain and just wish that he had a good GP to 'help him' along the road!  My love goes out to him so much and to his wife as well.

Tomorrow I am going to see my local GP as I need to get a medical clearance to fly with Qantas for the Washington conference!

Sunday, March 3, 2013

Time to call my oncologist

Last night I had a very uncomfortable sleep - went to bed with a back pain coming through to the right lung area that started a few mins prior to getting in bed.

 Within a couple of hrs the pain was thick and fast coming with a throbbing sensation, similar to the pain when peritoneal and then again when pleural meso presented itself all those years ago.  Both times it was overnight and then went away in the morning - enough to sounds alarm bells for me.  This time, pain tablets have done nothing to relieve it and the only mild relief was my old faithful wheat bag that I heat in the microwave for a few minutes and then put it on the area of pain to give warmth to that area.

The pain has now eased so I will contact my oncologist and get an appointment this week to discuss bringing the PET scan forward before I go to Washington as I need to know what is happening so that I can deal with it.

Living with Mesothelioma is dealing with what presents and getting on with daily life in the meantime for me!

Friday, March 1, 2013

Make Burnie free of Asbestos

Jeff Crowe, asbestos campaigner and concerned citizen of Burnie, Tasmania is passionate about eradicating Burnie and surrounds of asbestos.  Today on his facebook page Make Burnie free of Asbestos
he posted: 
The last stage of the demolition of the old A.P.P.M building at Burnie .
The asbestos has been removed which can only be a bonus for Burnie .
The other old adjoining Asbestos board Mill and old Asbestos paper Mill should be the next on the demolition list .
Well done Jeff in raising awareness in this much needed area.  So much asbestos in Burnie!