While Ray was working at Royal Naval Dockyard in Chatham in the 1950s, his sweetheart Mavis would often meet him during in his lunchbreak and after work. But they were both totally unaware that during these meetings, he would have a fine layer of asbestos dust on his clothes. Neither had any idea that decades later, this would cause major health issues both of them.
I was aged 15 when I first met Ray. It was the 1950s and Ray was working as an apprentice shipwright on the Royal Naval Dockyard in Chatham, Kent, on board ships in the days before a lot of the health and safety regulation we take for granted today had been passed. As a result of this, Ray would be exposed to lot of chemicals and substances, such as asbestos, that we now know to be toxic.
At a conference organised by the Health and Safety Executive (HSE), Ray described the working environment in the dockyards: “When you walked up the brow and stepped onboard a ship, you would be met with literally hundreds of miles of compressed airlines and they would be churning that asbestos dust into a hazy cloud which we would be working in all day long.”
Ray and I were inseparable. He would come to meet me more or less every day after work. On some occasions, he would ride over on his motorbike during his lunchbreak, just to spend a few minutes with me. Sadly, these fond memories are now tinged with pain because unbeknown to either of us, Ray would have a fine layer of asbestos dust on his clothes which I would breathe in during our goodbye hugs. We were blissfully unaware of what lay in store for us.
In 2009, 52 years after I first met Ray, the devastating consequences of breathing in asbestos were revealed: I started to notice that my breathing was laboured without having done any exercise or strenuous activity.
One day when I was walking to the nearby shops, I panicked when I found that I could hardly breathe at all. Later that day I had an urgent appointment with our GP and was sent to hospital shortly afterwards. While at A&E, I had seven litres of fluid drained from my lungs and the doctors and nurses ran a number of tests and biopsies on me.
A few weeks passed and the results were in. The doctor told me I had mesothelioma – a terminal form of lung cancer. Mesothelioma is almost always caused by exposure to asbestos, a group of minerals made of microscopic fibres that used to be widely used in construction. These tiny fibres can easily get in the lungs where they get stuck, damaging the lungs over time. In 1999, Asbestos was banned from being used in buildings in the UK.
I was told there is no cure and no treatment available for mesothelioma, and in June 2009 they said I had a life expectancy of about three months, and I was advised to put my affairs in order. Ray was devastated, he blamed himself for giving me a ‘death sentence’. There was no way he could have known about the risks of asbestos back in the 1950s. No-one did.
I spent the next four years undergoing chemotherapy and being put forward for drug trials. In 2014, I was told by an oncologist that the chemotherapy was no longer working and that there was nothing more that could be done.
However, I refused to give up hope. With the love and care of friends, family and of course Ray, I was able to channel my energies into developing support groups for mesothelioma sufferers and their loved ones.
Harnessing the power of social media, the support groups grew and those engaged with the struggle against mesothelioma became known as the ‘Mesowarriors’. Today there are Mesowarriors all over the world supporting and encouraging each other. I make myself available as much as possible, to give advice and listen to other mesothelioma patients.
Six years after my initial diagnosis, I was offered the opportunity to take part in a drug trial called MK3475 at The Royal Marsden Hospital in Surrey.
The MK3475 trial, later to be known as the Keytruda trial, was a comprehensive trial which required patients to undergo treatment every 14 days for up to two years. This trial was to prove to be nothing short of a miracle. The tumor began to shrink within a few treatments. These improvements continued throughout the two-year trial, culminating with me going into remission in 2017. However, doctors at The Royal Marsden Hospital were sure to point out it is not a cure because it could return at any time.
Right now I am enjoying a better quality of life than any time since 2009. I truly believe I have been given another chance at life so that I can help other sufferers of mesothelioma.
It deeply concerns me that, despite being banned 20 years ago, there are an estimated 5,000 people killed each year in the UK because of exposure to asbestos. According to The Institution of Occupational Safety and Health (IOSH), asbestos is present in at least 500,000 buildings built before 1999.
I now give talks about asbestos and all the dangers in our workplaces. I want people to be aware of mesothelioma and know how to minimise the risk of contracting the disease. To this end, I’ve established the Mavis Nye Foundation to raise donations for research into mesothelioma.
I regularly attend London Asbestos Support Awareness Group (LASAG) meetings in Canterbury as I love to talk face to face and keep in touch with others that are suffering with mesothelioma. LASAG gives helpful advice and also invites guest speakers to the meetings. As they say, it’s good to talk!
For more on Mavis and Ray’s work to raise awareness of mesothelioma, see www.mavisnyefoundation.com
Posted: 4/24/2019 10:08:31 AM