Posted on November 24, 2017
ADAO Interview with Mavis Nye, Mesothelioma Warrior and Founder, the Mavis Nye Foundation
Please share your journey with asbestos and mesothelioma.
In 2000, my husband Ray and I were preparing for retirement. We packed up our house, bought a motorhome and were all set to roam. After our first trip, I went to the doctor for an unrelated issue. I was sent for an x-ray, and shortly thereafter learned the doctors had found a mass. They drained 7ltres of fluid. I was told it could be Mesothelioma and I would live for about 3 months. They suggested I put my affairs in order.
Ray and I had married in 1960. Ray had served his apprenticeship in the Chatham dockyard, then did 2 years’ national service. I washed his clothes after shaking the dust from them. Our life was just a normal marriage; we had 3 children and were just striving to bring them up. Now this.
I went through four years of chemotherapy until I became very toxic, I couldn’t walk I had peripheral neuropathy. A doctor at St. Barts said he gave me weeks when he saw me. He truly didn’t think he would see me again. An oncologist informed me that a trial at the Royal Marsden might suit me, so I managed to get referred to the Merck trial Mk3475-28 immunotherapy. Twice a month for two years, I traveled to receive that treatment. Gradually, my veins were scarred and it became harder to find them. I ended up like a pin cushion.
I had wonderful scan results until 85% in December of 2015. I had to carry on though, and finished the full two years of trial in June 2016. At the Royal Marsden Open Day, we were really celebrating complete response and Professor DeBono was beaming when he saw me and called me the RM Star. If it does grow back, I can have Keytruda for a year.
I have thrown myself into Mesowarriors and other Facebook support groups to help others and raise asbestos and mesothelioma awareness. I’ve given many presentations all over the UK.
Why did you start the Mavis Nye Foundation?
Ray and I decided to start a foundation as we were so grateful for the successes we’ve had throughout my journey. I was so grateful to the National Health Services (NHS) for all that they had achieved with me. We said I must have been saved for a reason so I tried to find that reason and do what I could do to help. I was speaking at conferences right through the UK and getting so much backing that it seemed I had to channel all this to a purpose, a way to help the NHS and the mesothelioma warriors of the future. Ray and I decided a great way would be to have a foundation of my own where we could work together and so The Mavis Nye Foundation was born.
What do you and Ray hope to accomplish with the Mavis Nye Foundation?
Our major aims are to support the NHS, raise funds for independent mesothelioma research, and create a “hardship fund” for mesothelioma warriors, which would provide financial grants to aid newly diagnosed victims of mesothelioma in the UK. Many patients may require short term travel expenses to reach treatment; these and other related expenses are not covered by insurance.
We also work to offer grants to smaller research labs to pursue the development of new drugs for mesothelioma research in the UK, support young university students studying to become mesothelioma doctors, and to offer help secure more CNS Nurses in the UK.
What are the exciting details you want to share about the Mavis Nye Foundation Launch dinner on Dec. 7th?
The launch is December 7th. at the Richmond Hill Hotel. We have visitors coming from the USA and Holland as well as so many from the UK. Given the time of year, the launch will have Christmas theme with plenty of surprises. We are having an auction and the raffle, and the prizes are being wrapped up in Christmas paper and placed under the tree to keep things festive.
How can people help you?
As with all charities, we need donations, both from companies and individuals. There are many events planned for 2018: A Rock and Roll Night, A Garden Party in London, and more. People are planning to enter charity races around the country, and they have been buying our Christmas cards that Ray has produced with a picture of his painting of a dragonfly. The painting will be auctioned off at the launch.