Given on July 3, 2015
It was a great joy to be with Mavis, Ray, and other Warriors and activists on Mesothelioma Action Day. Once again, Mavis made a powerful speech to the London Hazards Centre audience. Please read and share Mavis’ story. Together, change is possible. Linda Reinstein
2015 Mesothelioma Action Day Speech by Mavis Nye
“
I obtained Mesothelioma by washing my Husbands clothes when he came home from work at the Chatham Dockyard, He was a Shipwright.
After his apprenticeship and then National service he returned to the Dockyard.
This is when he worked with Asbestos, the lagers lagged everywhere in the ships as they were being refitted.
I lived a wonderful healthy life and then I retired in 2000 sold our house and moved to the Coast bought a Motorhome and settled into retirement.
The story of Mesothelioma began.
It is the same story so many Mesowarriors describe,the fact you cant breath and struggle to walk, so I contacted the GP had a Xray and ended up having 7 Litrs of fluid drained.
The Bi-op then confirmed Mesothelioma and then the 6 months death sentence.
All this leaves you numb and alone.
I went through 1 Session of 6 chemos had shrinkage then 15 months later regrowth so I was put on a trail NGR-hTNF at Maidstone
which I’m afraid did not work for me or I had a Placebo.
They don’t leave you 4 more chemo’s slight shrinkage.
When it grew back I had 2x 6 sessions of Chemo. But I became very allergic and the chemo was mutating and fighting my body.
I was told no more treatment.
I couldn’t take that and I asked to be referred to the Royal Marsden.
Prof Bono offered me the trial of Imunotherepy the MK3475-28 Merck trial that we are all hearing about. From Day 1 I called it my Miracle drug and I pat each bag and say “ Go do your best” much to the amusement of the nurses although they are saying it now.
There were 3 Mesothelioma cases when I started but sadly it didn’t work for 2. They take three little test tubes of blood every 2 weeks that they send to have my DNA looked at as they are trying to find the Gene that is causing this miracle.
Each scan brings wonderful news and the shrinkage is fascinating, after 27 drug infusions.
Two marker tumours have disappeared another 1 has almost gone and all the other areas have had great shrinkage. The hope is that after allowing me to go on that the shrinkage will carry on to headline news as I’m the first one in the world to have so much shrinkage.
Over 80% now.
So I say to the professionals working in the asbestos sector —–
I got my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure, since the use and importation has been prohibited in Europe the exposure people are now suffering and continue to be exposed to is a result of asbestos still in our built environment, so for the sake of the future generations asbestos must be removed from the world we live and work in
To do that it requires professional companies operating at the highest standards to continue to remove this category I carcinogen safely and make our world a safer place. We must never forget those who have died as a result of asbestos- all were preventable deaths.
We must ensure that future generations are kept safe from this cruel and deadly mineral.
And that current generations can get justice and access to medical treatment that they deserve. Their work contributed so much to our economy yet they have paid the ultimate price with their health.”