By mavis, United Kingdom, February 3, 2015
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 bought 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 3 months.
After my husband’s apprenticeship and national service he returned to the dockyard. This is when he worked with asbestos all around as the laggers lagged everywhere in the ships when they were being refitted. My father also worked on the submarines as an electrician.
We lived a wonderful healthy life and bought up a family. I went to keep fit classes and walked miles with the dogs in our lovely countryside. Then we retired in 2000, sold our house, moved to the coast, bought a motor-home and settled into retirement.
Losing My Breath
Forty-eight years later and after a two month stay in Spain I couldn't breathe and the story of mesothelioma began.
I had been to the GP as my arm had gone numb and I burnt myself on an iron but didn’t feel it. He thought I had a trapped ulnar nerve and made an appointment for me to have an X-ray and see a specialist.
In May I went to vote and I just couldn’t breathe. When I got home, to my amazement the GP phoned and told me the results of the X-ray were showing a mass and they had arranged a bed at the hospital for me to have my lung drained.
This was carried out and from the fluid they found cancer cells and believed I had mesothelioma.
Prognosis and Chemotherapy
That led to me being given 3 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 was in an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-op 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 as it 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 of 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, we 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.
Take Five Stay Alive Campaign is run by British Lung Foundation which I made a video for and became 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. Since the use and importation has been prohibited in Europe, the exposure people are now suffering and still continue to be exposed to asbestos in our built environment.
For the sake of our 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.
I fight on for the future and all our Meso Warriors past, present and future.