Living with Mesothelioma-My Diary- A blog for IATP


I had an email to attend and speak at the NIB Netherlands asbestos Conference 30th October 2014 at 

Chairman:

David van den Burg , partner, Ambi

Speakers:

Mavis Nye, Asbestos warrior Ilse van den Aker , Policy, Ministry of Social Affairs and Employment Jan van Willigenburg , senior adviser, BME Leo Veldhuis , president, Association for Asbestos Eliminating Companies Gerwin Lensink , Founder, RIR Netherlands (Partner TÜV Netherlands) Mark Geers , national project leader asbestos, Ministry of Social Affairs and Employment, Social Affairs Inspectorate Mr. Dr. Yvonne Waterman , Director, Legal Consultancy Aquarius ir. Ingmar Scheiberlich MSc MRE , Consultant, AT Osborne  Harry Killaars , advisor risk management coordinator and external security, Fire Midden en West Brabant Tom Troquay , project rollout lavs, Ministry of Infrastructure and the Environment HenkHenk Goorden , attaché General Directorate Humanization of Labor, Federal Public Service Employment , Labour and Social Dialogue Edwin Franken , Deputy Director, TUV Netherlands Gerwin Lensink , Founder, RIR (Partner TÜV Netherlands) Thorvald the Good , consultant, Nazca IT Solutions Jan Horyon , Director Horyon BV

Drastic changes coming!

Your daily work is changing dramatically this year. You will be dealing with:

  • New limits by July 1, 2014 and January 1, 2015
  • New forms of supervision and enforcement
  • Innovative methods that contribute to safety, speed and cost

During the initial National Asbestos Conference October 30 fully briefed on all changes, innovations and current affairs. Make sure you are not left behind!

————————————————————————————————————

dutchy

So it was on this stage I spoke to the Conference through a Video’d Skype message.

I obtained Mesothelioma by washing my Husbands clothes as he came home from work at the Chatham Dockyard as a Shipwright.

After his apprenticeship and then 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.

I 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 and moved to the Coast bought a Motorhome and settled into retirement

48 years later and after a 2 month stay in Spain I couldn’t breath and the story of Mesothelioma began.

I had been to the Gp as my arm had gone numb and I burnt myself on a iron and I didn’t feel that.

He thought I had a trapped Ulnar nerve and made an appointment for me to have an Xray and see a specialist.

In May I went to vote and I just could not breath.

When I got home to my amazement the GP phoned and told me the results of the Xray were showing a mass and they have arranged a bed at my hospital for me to have my Lung Drained.

This was carried out and from the fluid they found cancer cells and believed I has Mesothelioma.

I was given 3 months to live.

I didn’t accept that and after my Pleurodesis at Guys in London I started Chemo.

Cisplatin and Alimata – which is the standard treatment in the UK.

This worked for 15 months then started growing again.

I went into a trial NGR-hTNF trial at Maidstone this acts on the tumours blood vessels.

which Im afraid did not work for me or I had a Placebo.

So two sessions of Cisplatin and Alimata

I became allergic but it did work and we had stable again for a while then growth was found in my next scan.

What would I like next as there are no new trials or Chemo.

Im not used to a Doctor having no answers.

I emailed St Barts and that friday I was in an appointment where Peter offered me the last place on Adams Trial –

but it would mean another Bi-op and then I might not be suitable

.

He threw me a life line of Gem/Carbo and I could have that Local.

Back to Canterbury and I was on Chemo again to September.

Oct scan was bad news the chemo had not worked.

A scan every 3 months though was showing the growth of 2 mm every 3 months I wasn’t happy.

I got right behind the Saatchi Bill and worked with Lord Saatchi and the doctors and was on the Committee when it was launched at the house of Commons.

I had a Doctors advice to go to the Royal Marsden.

I asked my Oncologist and she referred me.

Im now on a Phase 1 trial

It isn’t just for Meso but This 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 had never heard of the disease only Asbestosis.

I got a shock of all the depressing reports and write ups as there seemed no hope.

I turned to Facebook and completed a search which gave me so many Lawyer sites

but I did come up with Debra Brewers 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 raised more groups.

I started the Q&A page so I could ask all the questions I needed and there are groups for other needs.

Like Mesothelioma Articles where we place any new trials and news so we can always be ahead and up to-date .

Blogs where warriors can tell there day to day stories of their fight.

Mesowarriors and Carers group to help the carers understand the disease as well as get help when needed 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.

Even a tears page for the partners that have lost a loved one so they share their lives afterwards. Its 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 cope with it in the buildings. Take Five Stay Alive Campaign is run by British Lung Foundation I made a video for them and became the Centrefold.

Im just an ordinary woman who married at 19 and washed my our washing. I didnt know the powder on Rays clothes was anything other than dust bought home from work. I shook his clothes and then put them in my washing machine. 48 years later I find I have Mesothelioma and a death sentence of 3 months. I have fought that 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 Mesowarriors past and present and future. 

Suffering from mesothelioma my answer would be we should take all asbestos out of our lives or the closest to zero that could be humanly achieved, there is no data statistical as to the amount of fibres breathed in over time that can be medically proved to not cause disease or cause it.

if the Dutch Government require industry to achieve the new levels and to avoid illegal activity or prevent economic hardship or asbestos being left as it would be too expensive or difficult to remove and so left unmanaged the Government should heavily subsidise.

So I say to the professionals working in the asbestos sector in the Netherlands,

I got 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 continue to be exposed to is a result of asbestos still in our built environment, so for the sake of the future generations asbestos must be removed from the world we live and work in

To do that it requires professional companies operating at the highest standards to continue to remove this category I carcinogen safely and make our world a safer place.

The feedback has been great and apparently was well received which pleased me but what really pleased me was the fact a lady in the audience whose husband suffers with the disease  who listened to your presentation last thursday, thought it was great to hear mystory at the conference! Its people like that who I want to reach out to.
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