My life with Mesothelioma
Mavis Nye, author of Five Years a Mesowarrior, shares her story:
"I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything other than dust brought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have Mesothelioma and a death sentence of three months. That led to me being given three months to live.I didn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started chemo, Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months then started growing again.
I was offered the NGR-hTNF trial at Maidstone. This clinical trial acts on the tumours blood vessels which I’m afraid didn’t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while... then growth was found in my next scan.
The Life Line
What would I like next as there are no new trials or Chemo? I’m not used to a doctor having no answers. I emailed Saint Bartholomews Hospital and that Friday I attended an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-opsy and then I might not even be suitable. He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury and I was on chemo again until September.
The October scan was bad news... the chemo hadn’t worked. A scan every three months was showing the growth of three millimetres every three months. I wasn’t happy. So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons. Then a Doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my Oncologist and she referred me.
Joining the Meso Warriors Community
I’m now on a Phase 1 trial of Immunotherepy. It isn’t just for Mesothelioma but the trial, MK-3475 is a drug being tested which blocks the interaction of a substance called PDL-1 with PD Inhibitor. When I was first diagnosed with Mesothelioma in 2009, I Googled the word as I’d never heard of the disease, only Asbestosis. All the depressing reports and write-ups gave me a shock as there seemed no hope. I turned to Facebook and completed a search which gave me so many Lawyer sites; however I did come across Debbie Brewer’s Facebook which led me to a wonderful community of patients around the world called The Meso Warriors. Debbie and I became friends and together we created more groups. I started the Q&A page so I could ask all the questions I needed and there are groups for other needs such as: Mesothelioma Articles Groups with new trials and news so we can always be ahead and up to-date and also blogs where warriors can tell their day-to-day stories of their fight.
Meso Warriors and Carers groups to help carers understand the diseases as well as get help when needing to cope. Individual Groups that are secret where each member can put their personal thoughts and stories and share with their own friends and family.
We even have a Tears Page for the partners that have lost a loved one so they share their lives afterwards. It’s amazing how that helps in so many ways. Post-mortems and wills and the day to day help to live again. This has all become so successful that the world has joined in and we have members from America, Australia, and many other countries who learn from each other how the world copes with the disease. Also we fight for the ban of Asbestos and how to manage it in the buildings.
The British Lung Foundation previously ran a campaign called ‘Take Five Stay Alive', which I made a video for as well as appearing as the centrefold in their annual report.
Suffering from Mesothelioma, I wish we could take Asbestos out of our lives or the closest to zero that could be humanly achieved. There is no statistical data as to the amount of fibres breathed in over time that can be medically proven to have caused Mesothelioma. I had 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. Although the use and importation has been prohibited in Europe since 1999, people continue to be exposed to asbestos in our built environment. For the sake of future generations asbestos must be removed from the world we live and work in. To do that I believe it requires professional companies operating at the highest standards to continue to remove this category 1 carcinogen safely and make our world a safer place. I fought against it by having chemo and now my last chance is MK3475, an immunotherapy treatment which is shrinking my disease very fast. For how long no-one knows at this point. Although my latest Scan has shown no sign of Mesothelioma in my tumours I can’t wait for my next scan just to make sure that really is true as it seems so unbelievable. I fight on for the future and all our Meso Warriors past, present and future.
Published Aug 2018
To follow Mavis’ journey visit the Ray and Mavis Blog
To purchase a copy of the publication Five Years a Mesowarrior
Read more about the Mavis Nye Foundation