Living With Mesothelioma -My Diary- All the speakers are on their way to The European Asbestos Forum-Their first event

I havent sat down to write a blog over the  bank holiday but I think thats where we normally have always gone away. The idea of facing the blocked roads just put us off this time and I had a great idea of staying in the garden for a change. Hmmm it was so cold and cloudy and even rained. Our summer has not got going yet.

Ray was busy throwing out and bagging up all the junk we put in the shed. Once again I have closed my eyes. I would be saying “Oh no not that Oh no!!”

So I stayed in and worked on the computer. I did manage a good clean in the house but sat down now and again.

A bit each day soon tidies up in a Park Home.

So Louis walks round the park was all I did.

I seem to be living for the next Tuesday at The Marsden and my drug is all I live for.

Im noticing some side effects as I reach a year in June.

I have been scratching so take antihistamine and that has been good.

Tiredness. After I eat a meal I drop off so that’s 2 sleeps in a day and all night. So much is going on in my Lung with all the shrinking it must wear me out. As I havent anyone else to compare it all with I feel alone in this trial.

Linda Rheinstein has been very interested in the trial and she contact me as she flies to Amsterdam to the EAF Conference.

It would seem she is really going to mention me and my trial so as the results have been published I was able to share info with her.

I have kept a low key up to now but its really time to shout it from the roof tops.

I know its not for everyone it doesn’t work its magic on all but Im proving there is something right about Imunotherapy.

European Asbestos Forum-compressed


The European Asbestos Forum – 27th May 2015

I have been helping to advertise the forum around the world as it is the first one for

Yvonne Waterman Ph.D. LL.M.

Over the past fifteen years, Yvonne Waterman has visited and spoken at many asbestos conferences worldwide, learning all the time and wondering why so many countries have the same asbestos problems and at the same time haven’t a clue

I have met Yvonne on several occasions and know how dedicated she is to the Asbestos world.

ADAO interviewed her

Linda: Please tell me about the European Asbestos Forum 2015 (EAF).

Yvonne: I’m so excited to announce the first European Asbestos Forum (EAF) on May 27 at the NH Grand Hotel Krasnapolsky in Amsterdam. Right on Dam Square, the very heart of the Netherlands. It’s main topic for 2015 will be on the relationship between asbestos and labour, with different big topics already planned for upcoming years.

The EAF is a new type of international asbestos conference There will be information for all asbestos stakeholders – e.g. trainers, victims, lawmakers, asbestos removers and the legal community. While the main focus will be on Europe, there is to be much international interaction and speakers from other continents as well, with some twenty global top speakers and specialists, which include Dr. Richard Lemen, Eric Jonckheere, Tony Rich, and Linda Reinstein.

Linda: Why is the EAF called a Forum?

Yvonne: “Because it is vital that people come together internationally to get to know each other; only then can they exchange the highest levels of knowledge and understanding, awareness and policy. In that sense, the conference will also be like a forum.”

Like ADAO, Yvonne places great emphasis on the need for sharing and unity – and it all starts by simply first getting to know each other and networking, she says. The hottest news on asbestos developments will entice participants further to join the Forum.

Yvonne Waterman

Linda: What drives you to go to such great lengths?

Yvonne: “I have been to so many asbestos conferences all over the world for the past fifteen years… Every time, it makes me sad to see the same: each country valiantly trying to discover the wheel all over again, yet unaware that the neighbouring countries share exactly the same problems but have found different solutions. That just doesn’t work – typically, people don’t even know a single counterpart in neighbouring countries, never mind from further away. Untold resources and chances for prevention are wasted that way, too. But if we get together, we can pool our findings and discover far more efficiently what works best. That goes for remediation practices and safety codes, but also for methods to raise awareness of asbestos dangers, improving the speed of court proceedings, comparing compensations and treatments – you name it.”

Linda: What should participants expect?

Yvonne: “It will be a very interesting day with the best speakers, the most relevant subjects and lots of opportunities for everybody to talk to others over excellent food and drinks in beautiful surroundings. That always helps to get the mutual understanding going, ha ha! But seriously: the EAF will start from a high level, providing participants with the best speakers, the best specialists, the newest developments. I also want to involve everybody, from all walks of asbestos, be they victims, remediators, builders, installers or teachers, policy makers, doctors and epidemiologists, building corporations, trade unions, judges, insurers and employers. The yearly programs will endeavour to meet all their needs and interests by offering simultaneous sessions focusing and examining divers aspects of the main topic.”

Linda: What is the goal of your conference?

Yvonne: “Networking, learning and sharing knowledge cannot be achieved by a single attendance – it requires repeats. I know this from personal experience. So I want to make sure that people will come back and make the EAF a yearly fixture on their calendars. Ideally, in say ten years’ time and after as many Forums, we could ask the European Commission to standardize the best methods we have found by consensus in Directives, thus implementing them in all Member States and providing the best to everybody. Just imagine what a hugely time-saving step forwards that would be for Europe and what an example to countries where there is no ban yet.”

Linda: Yet asbestos is already banned in Europe by virtue of a Directive of the European Union in 2005, that all Member States have had to implement. So wouldn’t such a conference or forum be better held elsewhere than in the EU?

Yvonne: “Asbestos may be banned in Europe, but it is still there in huge quantities, posing an equally huge problem. It is still present in the workplace, in our homes, in the environment, causing death and despair. Banning in itself is not enough, not by a long shot. Banning doesn’t get the asbestos from the roofs and out of the wall cavities, it doesn’t provide treatment or fair recognition while the victim is alive. It doesn’t provide an answer what we should do with it and where we should leave it, either, once it is removed. It doesn’t train workers to be alert to asbestos, which means workers keep getting exposed, even despite the ban. The newest Member States to the European Union are terribly behind in asbestos measures, awareness and legislation. Half of all the world’s asbestos production and asbestos products are to be found in this one continent. We need to face up to these realities. I’d say there is plenty of reason to call it the European Asbestos Forum.”

Linda: Who really is the European Asbestos Forum?

Yvonne: “I feel that if you see the necessity of something, you have a duty to say or do something about it. In that sense, it’s just me for now, though I am acting as the founder and President of the European Labour Forum Foundation, which is the formal organizer. A foundation simply offers more possibilities for organising such a large event. I do have a lot of very experienced support though and I would and could not have considered going ahead without them… I consider ADAO to be a big, wise sister to the EAF; and I am very thankful for her support and sponsoring. Also, the English Independent Training Providers (IATP) set a good example of bringing all asbestos stakeholders in the UK together – I continue to learn a lot from them, too, and appreciate their kind sponsorship. And last but not least, my main sponsor, Shield Group International, believes in the EAF and gives me such wonderful backing and resources that I know I can pull it off. Expect a terrific event.”

Yvonne, ADAO is pleased to support your efforts and wish you great success at the European Asbestos Forum on May 27th!

Linda Reinstein

Information and registration for the European Asbestos Forum 2015 can be found online at

So its with great excitement I wait for tomorrows events.

Rays Blog catch up


One thought on “Living With Mesothelioma -My Diary- All the speakers are on their way to The European Asbestos Forum-Their first event

  1. Hi Mave,

    I tried to contact you last week, and am not sure if I did it the right way and that maybe my message didn’t get to you. Or maybe you would rather not be contacted. But I thought I would try by replying to your blogs this time.

    My Dad was diagnosed with Mesothelioma in 2013. He had some chemotherapy which went well, and last year he went on a trial under Guy’s. Unfortunately he has just been taken off the trial as he has had some tumour growth and is now being given a second lot of chemo.

    Your trial has caught my eye, my brother and are I always looking for other trials/ treatment that could be suitable for my Dad. Your blogs are very encouraging, and it seems the MK 3475 is working for you.

    I wondered if you would mind giving me some information, such as, the criteria for the trial, what it involves, how you feel and are coping. I would like my Dad to be in a position to be ready to be accepted on a trial once his chemotherapy has finished so am trying to do the groundwork early.

    I completely understand if you do not want to contact me, but would be really grateful for any information and advice you are able to give.

    I wish you all the best for your treatment and health.

    Thank you
    Claire Towse

    Sent from my iPad


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