Mavis’ Story

Mavis Nye`s journey began in 1957 when aged 15 she met Ray who was to become her lifelong partner.

At the time Ray was an apprentice shipwright in the Royal Naval Shipyard in Chatham.

They met during lunch breaks and after work. Ray would be in his work clothing and tragically covered in the fine invisible dust of asbestos.

No one at that time warned them that this would in later life become a major health issue. After their first year together Ray was called up for National Service.

Upon Ray’s return from National Service they married, raised a family and lived a normal life. However, the damage was already done and the clock was ticking.

It was 49 years later that the devastating consequences of their first meetings came to light. In 2009 Mavis was suddenly aware that her breathing was laboured during a short walk to the shops. She was unable to breathe.

An urgent appointment with the GP was made and within hours she was admitted into hospital where 7 litres of fluid were drained from her lung.

This was the beginning of a long nightmare journey.

After weeks of tests and biopsies she was given the news that she had mesothelioma.

It was explained that it was a terminal cancer, that there was no cure and no treatment available.

The prognosis was three months, she was advised to return home and put her affairs in order. Despite this Mavis was determined to fight the illness. The following four years were spent on chemotherapy and drug trials.

In the fifth year the oncologist advised that the chemotherapy was no longer working and chemotherapy toxicity was too high to continue any further treatment.

It seemed to be the end of the road.

Raising Awareness

Although Mavis had been in treatment she decided early on that something needed to be done. She began to set about searching for answers.

She found a small group of like minded patients on social media and joined them. It was headed by Debbie Brewer. Debbie and Mavis became good friends but sadly Debbie succumbed to this insidious disease leaving Mavis to carry the torch. Mavis set to it with a vigour that was unstoppable. She expanded the small group’s humble beginnings and created various groups on social media. The mesowarriors, as they had become known, developed a global presence for information, help and advice.

Today Mavis’ work is internationally recognised.

  • She is available on a personal level to support and encourage victims of mesothelioma;
  • She has the support of many influential people sympathetic to her cause;
  • She is in constant demand to give presentations to spread the word and share her story throughout the UK and worldwide;
  • She has been welcomed in the asbestos industry;
  • She talks with MPs and eminent medical professionals in the field;
  • She has spoken in the House of Parliament in the company of distinguished speakers;
  • She was awarded a BCA for her work; and
  • She has received an honorary doctorate from the University of Kent.

Her energy and enthusiasm knows no bounds. Following the end of her chemotherapy Mavis devoted time to these campaigns during which she was advised by Professor Dean Fennell that a small drugs trial was about to start in the Royal Marsden, for mesothelioma.

In the weeks that followed she was referred for assessment. Some weeks later she received news that she had been accepted on a trial of just three people. Of those three she remains the only survivor.

Lifesaving Treatment

The MK3475 trial, later to be known as the Keytruda trial, was demanding treatment every 14 days. Mavis travelled over 200 miles every 14 days for 2 years, but she grasped the trial with both hands.

Mavis was slowly dying and had nothing to lose. This trial was to prove a miracle. Shrinkage of the tumours began within a few weeks of treatment.

These improvements continued throughout the two years cat the end of which a complete response had been achieved.

In laymen’s terms, that means remission.

The medical team were quick to point out that it was not a cure because the disease could return at any time. Mavis remained symptom free for two years after the treatment however.

Mavis remained active and enjoyed a better quality of life than the previous seven years although there are still underlying issues, her body has been irreparably damaged, mostly unseen.

Mavis has been given another chance at life so that she can help other sufferers.

Latest Update

In 2019 Mavis was enrolled on the HyPeR trial. Initial scans showed the mesothelioma to be stable, however follow up 3 monthly scans showed some growth with no overall slowing in the growth of the tumour. Sadly Mavis had to come off the trial.

In 2020 Mavis was enrolled on the Bayer trial but this was also cut short due to the immunotherapy treatment causing irreparable damage to her cornea. Mavis was also removed from this trial.

Currently Mavis is not receiving treatment and there is slow growth in the tumour. It is by no means the end of her treatment journey, Mavis will continue with regular scans at the Royal Marsden whose care she has been under for many years whilst awaiting other potential trials to be enrolled on.

There is also the possibility of radiotherapy treatment at her local Kent and Canterbury hospital where Mavis started her journey with Mesothelioma in 2009. Mavis will be under the care of specialist Mesothelioma UK nurse Toni Fleming, the same nurse she saw when she diagnosed with mesothelioma 11 years ago. Thanks to the generous donations made to the Mavis Nye Foundation, it has been possible to sponsor the Mesothelioma UK nurse post in Kent and Canterbury Hospital.

Mavis remains positive about the future.