Our Friend Mavis
Mavis Nye was a fighter. She fought to save her own life and that of people in the UK and abroad, many of whom she never met. From the moment she was diagnosed with mesothelioma the signature cancer caused by exposure to asbestos she refused to accept the inevitability of short post-diagnosis survival typically predicted for mesothelioma patients.1
Mavis reached out by phone, in person and via the internet to contact medical experts; she linked into established support networks and, where such networks didnt exist, she helped create them. In her 2015 book Meso Warrior: One Womans Fight against Mesothelioma, on her blog, in YouTube clips, on Facebook and throughout the digital community, Mavis remained on message: We can fight this disease.2 That she did so with such passion and grace for 14 years is nothing short of a miracle.
When people sought out Mavis, she was generous with her time; she knew the value of the personal touch and so she and her husband Ray would visit mesothelioma sufferers or meso warriors as they preferred to be called in their homes to share their knowledge of navigating the mesothelioma pathway.
In 2016, when I interviewed Mavis Nye, I googled Mavis Nye mesothelioma; there were 4,000 hits.3 I did so again yesterday and there were 121,000 hits! This isnt surprising Mavis would talk to anyone, anywhere; as the years rolled by, her sphere of influence extended far beyond national borders. When her health permitted, Mavis ventured to international mesothelioma events and asbestos conferences to provide a voice for fellow patients.
No meeting was too small or too grand to phase Mavis the energy she expended making connections with people at coffee mornings and local fundraisers was no less than that she used making presentations at the House of Commons, mingling at royal garden parties and taking part in award ceremonies such as her Investiture with The British Empire Medal or the bestowal upon her and Ray of honorary Doctorate Degrees by East Kent University.
Mavis Nye (left) and Siobhan Brewer (right) presenting a framed copy of the agenda of the July 3, 2013 meeting of the Asbestos Sub-Group, in the House of Commons to Associate Professor of Medicine from the University of Pennsylvania Dr Daniel Sterman.4
During a speech Mavis gave at the July 3, 2013 meeting of the Parliamentary Asbestos Sub-Group, she delineated issues she wanted addressed by Parliamentarians:
We need a system that is more central, where information is shared. Why does a doctor in the South know more about Mesothelioma than a doctor up North. Why does one hospital know about drugs that can be used and others do not know. I have had to do all my own research; I have been in charge of my disease but I want the doctors to be able to tell me what I need. That doesnt happen, not always.5
Mavis was passionately determined to prevent workers from contracting mesothelioma and so spoke often and in depth to business owners, researchers, and operatives in the asbestos removal industry and other high-risk sectors. Wherever she went, everyone wanted a photo opportunity with Mavis & Ray. I was one of them.
From left: Laurie Kazan-Allen with Mavis and Ray Nye at the Mesothelioma UK annual conference for Patients & Carers 2015 in Stratford-upon-Avon.
Of course, you cant talk about Mavis, without mentioning Ray, the man who was at her side for over 50 years.6 Theirs was a true partnership, one that did not weaken in the face of the personal tragedy they experienced. The honesty and vulnerability they displayed was an inspiration to everyone fortunate to know them.
Together they faced this terrible diagnosis. They lived life to the full during small moments and larger ones: tending their garden, taking the dog for a walk, enjoying their motorhome and hanging out at Buckingham Palace with the royals.
Together, they set up the Mavis Nye Foundation to ensure that the potentially life-saving work they had undertaken to publicize the harsh reality of life as a mesothelioma patient, raise funds to support medical research, give hope to fellow sufferers and inform workers and the public about the asbestos hazard would continue.7
When the sad news broke earlier this week about Maviss death, social media was awash with comments and condolences from asbestos victims, campaigners, occupational safety and health activists, barristers, solicitors, medical practitioners, scientists, technical experts, asbestos removal specialists and others.8 The outpouring of emotion from such a range of people not only reflected the impact of the work done by Mavis and Ray but also showed the depth of loss experienced by those of us lucky enough to have known Mavis.
Concluding her comments to MPs during her July 2013 presentation Mavis said:
Thank you for listening to me we were all given months [to live] and then we gained years; and we should be grateful to our doctors and nurses that are stretching the boundaries. We are the pioneers and now we are teaching the medical profession. One day there will be a cure and we will have played a big part.
No one would have played a bigger part than Mavis Nye.
November 24, 2023
1 Kazan-Allen, L. Mesothelioma Warrior. British Asbestos Newsletter, Issue 100. Spring 2016, pp. 16,17.
3 Kazan-Allen, L. Mesothelioma Warrior. British Asbestos Newsletter, Issue 100. Spring 2016, pp. 16,17. https://www.britishasbestosnewsletter.org/ban100_web.pdf
4 For more on this meeting including a summary of Mavis Nyes speech, please see the report below:
5 Mavis Nye. My Speech to the Asbestos Sub-Group. July 3, 2013.
6 To do whatever I can for her until my last breath. February 22, 2023.
8 Mesothelioma UK. A Tribute to Mavis Nye. November 21, 2023.