“My talk went down better than I could ever possibly hope. People were so amazed not only at my mesothelioma story but the pictures I showed them of mistakes that are being made in the industry. We discussed with so many how we could change all that.”
Mavis Nye, 75, is a mould breaker. After six years of gruelling treatment for mesothelioma she has come out, miraculously, a survivor. Indeed, she is the first person in the UK to be declared free of mesothelioma thanks to a new type of immunotherapy treatment.
Her story means that mesothelioma need not be a death sentence. But, at the speech she gave at the launch of a new faculty for asbestos professionals from BOHS (the Chartered Society for Worker Health Protection) held in October, it was clear she also blazes a trail as a campaigner against complacency when it comes to asbestos.
Like so many, Mavis had no idea she was putting herself at risk from asbestos. In her case, her illness was caused by a simple, loving task. It was 1961, when, aged 19, Mavis married Ray, who went on to be a dock worker at the Chatham Dock Yard. She would wash his clothes for work. Of course, dockyard workers would then have regularly handled asbestos, being, in the 1960s, commonly used for fire-proofing ships and insulation.
The microscopic, invisible deadly fibres would also have been on Ray’s clothes. “We had a normal, ordinary, life and we bought up three children and we just strived to bring them up and to create this [good] life for them. We never dreamt what was going in inside my body,” she says.
The problems began in 2009 when the couple was enjoying their retirement in Spain. Mavis became breathless and when they returned, other worrying symptoms followed. “My arms were twisting and I had burned them in the New Year on an iron and I hadn’t felt them and the GP said I had a trapped ulnar nerve. He sent me for x-ray and on voting day I couldn’t breathe as I walked up to vote and, as I got back in the house, the phone rang and my GP was telling me to go to A&E as a bed had been booked.”
Mavis was told she had three months to live because the doctors had found a large mass on her lungs. It was mesothelioma, the vicious cancer that affects the delicate lining of the lungs and chest wall. Displaying her warmth and humour, she explains what she did next. “Very shocked I threw all my clothes out. I bought all new things so Ray didn’t have to buy a thing. I bought a new washing machine. I even put blinds up and took out the net curtains because I said to Ray, ‘You won’t wash net curtains. Men don’t wash net curtains.’”
Immunotherapy – a ‘wonder drug’
What followed was a rollercoaster of a journey for the couple. After four years of chemotherapy, Mavis was unable to walk and had peripheral neuropathy – damage to the nervous system, which causes loss of balance and shooting pains. But her luck was to take a dramatic turn for the better when she heard of a drug on trial for MK-3475-28, or Keytruda, an immunotherapy drug treatment, taking place at the Royal Marsden Hospital in London.
“Twice a month for two years of traveling on the M25 in the very early morning, in pitch black through the winter, I had my immunotherapy. It was put in through my arm in infusions, but it wasn’t like chemo. No sickness, no side effects. It was wonderful. I came out and I was getting better and better. I could walk around better and I came back and was living life, I even went camping.”
It’s a miraculous story – particularly when Mavis explains the random way the drug took effect. At one point during treatment the catheter [a tube for administering drugs intravenously] picked up a bug. “I went down with sepsis and they had to take out the line, but the theory now is that the sepsis helped make my immune system to come back and to help the actual immunotherapy to work.” Doctors are looking into these effects on Mavis and how they might aid mesothelioma treatment for other patients.
Campaigner and writer
Now, one and a half year free of mesothelioma in her lungs, Mavis is putting her storytelling powers so evident when she speaks and writes, to use as a campaigner. Her work includes writing her blog (rayandmave.wordpress.com) which has documented her life with mesothelioma and beyond. It is not just very engaging and entertaining, but helps to shed a light on the realities of mesothelioma in a human way.
For example, in an entry in March 2012, the way she describes how her husband injects her everyday with blood thinners: ‘my belly is beginning to look like the kiddies join the dots’, she jokes, and elsewhere she recalls talking through freezer dinners for Ray on the way to hospital.
For cancer sufferers, her accounts must go a long way to providing solace and support. Links provide information on how sufferers can be part of a drug trial like she was.
She is also fearless and practical when it comes to campaigning on the risks of asbestos. Since her diagnosis she’s become known by workers and campaigners alike. “Workers send me photos of where asbestos is found on sites. I fight for their safety to make sure they carry out facefit tests and shave – they hate me mentioning that. I just want them working in safety following the rules. Flaunt them and they will suffer mesothelioma in 20 or 30 years,” she states.
She will not pass by risks without speaking up, recently photographing and posting on a local website a skip full of asbestos blowing in the wind. “A man says to me, ‘Mavis you’re doing this all wrong, getting the poor builder in trouble’. I said, ‘Excuse me, what about the children and poor people walking by that skip.’” Her direct approach is refreshing.
Mavis Nye Foundation and the future
Her persistence to tackle ignorance of asbestos risks has also gained her recognition. In January 2016 Mavis received the British Citizen Award in the category of Service to Healthcare. But she’s not stopping at awareness raising. On 7 December, she launches the Mavis Nye Foundation, a charity to raise money for research into the disease and to help with practical support that those undergoing treatment may need, such as travel expenses to hospital.
She wants young people to be able to study asbestos-related cancers and treatment. “Wouldn’t it be lovely if young people wanting to study to be a mesothelioma nurse or doctor could come to me and have a grant? I’d love to be able to give back to the doctors who have given me my life back and encourage them to find a cure. I want a cure.”
To make a donation to the Mavis Nye Foundation visit: mavisnyefoundation.com
For tickets to the launch on 7 December at the Richmond Hotel visit: mavisnyefoundation.com/events.html