The Diary of a Mesowarrior #asbestos #mesothelioma THE EAF CONFERENCE: 10 & 11 NOVEMBER 2022

The Venue was at the Van der Valk Hotel Oostzaan, the Netherlands.

We had travelled to my family in Luton to stay the night before and our son drove us to Luton Airport.

We had planned on driving up there, but the protesters were being silly again at Dartford at the Dartford Crossing, we gathered everything up, called a taxi and got to the station in time for a train to London then Luton.

We got to the airport in plenty of time and was already to fly to Schiphol Airport.

We had a easy flight on Easy Jet and arrived at the hotel in the evening.

The room was very nice and we soon settled in and went to bed.

The next day after breakfast we met up with old friends and new and was soon nattering away, but the time went quickly and then it was lunch and wait for the coach and guided visits to the Asbestos Museum and the Asbestos denaturation plant.

The EAF conference will hosted an exclusive, guided tours to the unique and fascinating Dutch Asbestos Museum first which was somewhere I always wanted to visit as I had been friends with Harry Honk for many years. We were shown around and my whole childhood was in front of me, my Ironing board I had as a child, a steam train my hair curlers, kettles just so many items that I had used or played with all containing asbestos.

Then we visited the Asbestos denaturation plant where asbestos is destroyed (‘denatured’) using two different, state of the art methods (industrial waste acid and, of all things, water!

It is all very experimental, but they are working hard to get it in to production.

We came home and Yvonne had laid on a wonderful evening meal.

11 November 2022: classic conference

The EAF conference excels in providing the opportunity to meet relevant specialists from around the globe, learn and share state of the art science and innovations of every conceivable field relating to asbestos and to build lasting, helpful networks.

Opening Speech: Working towards a new, state of the art EU Asbestos Directive, by Nikolaj Villumsen, Member of the European Parliament
09.45 – 10.15New and old sources of exposure to asbestos: and the manipulation of science by vested interest, by prof. Arthur Frank (Drexel University)
10.15 – 10.45Fighting for an asbestos ban in the asbestos heartland, by Syed Mezab Ahmed
10.45 – 11.05Break and refreshments
11.05 – 11.25Female analysts and clearance testing, by Colette Willoughby (ACL) 
11.25 – 12.00Keynote Speech: Asbetter: the (dis)solution for asbestos cement, by Inez Postema and Angelo de Jong (AC Minerals)
12.45 – 13.05OpenAsbestos – the open standard for asbestos data sharing, by Robin Bennett (Start Software)
13.05 – 13.25Establishing a National Support Service for mesothelioma victims, by Liz Darlison MBE (Mesothelioma UK)
13.25 – 13.45The UK National Asbestos Register: working with QR codes to save lives, by Andrew Paten (UKNAR) 
13.45 – 14.05Campaigning for improved asbestos management in the UK, by Charles Pickles (Charles Pickles Associates)
14.05 – 14.20Break and refreshments
14.20 – 14.40Mandatory asbestos survey and central registration to nudge owners into action and monitor progression towards an asbestos-safe Flanders, by Sven de Mulder (OVAM)
14.40 – 15.00Using Artificial Intelligence technology to understand and manage the Australian asbestos legacy, by Justine Ross (Asbestos Safety & Eradication Agency)
15.00 – 15.20Asbestos destruction plants: the importance of a workers safety programme, by Federica Paglietti (INAIL)
15.20 – 15.40Pursuing justice in contaminated talc cases, by Brendan J. Tully (Simon Greenstone Panatier, PC)
15.40 – 16.20Panel debate
16:20 – 16.35Break and refreshments
12.45 – 13.05The importance of measuring asbestos microfibres, by Sean Fitzgerald (Fitzgerald Analytical Consulting & Testing Services, Pllc)
13.05 – 13.20 Great advances in robotic asbestos microscopy, by Aron Cserkaszky (Frontier Microscopy)
13.25 – 13.45Denaturation of asbestos cement, by Rikard Högberg (INASCO Asbestos Converting AB)
13.45 – 14.05The distribution routes & exposure risks of asbestos fibres released through weathered asbestos roofs, by Jody Schinkel (TNO)
14.05 – 14.20Break and refreshments
14.20 – 14.40Real-time detection of airborne asbestos by light scattering from magnetically re-aligned fibers, by Loretta King (Alert Technology Ltd.)
14.40 – 15.00Asbestoprobe: a portable device that detects the presence of asbestos, by Emiliano Genorini (Greenwall Environmental Evolution Ltd.)
15.00 – 15.20New ISO standards to meet diversity challenges of Respiratory Protective Equipment, by Tony Smith (Sundström Safety AB)
15.20 – 15.40Gel-based products: the new way of encapsulating asbestos fibers during removal work, by Alexandre Chasteloux (BCL Invent) 
15.40 – 16.20Panel debate
16:20 – 16.35Break and refreshments
16.35 – 16.40Special Recognition Award(s)
16.40 – 16.45Concluding speech, Yvonne Waterman
16:45 – 16:50Two Special Announcements
17.00 – 18.00Convivial closing drinks for networking
18.00 – 21.00Conference dinner (optionally)

There was such a lot of wonderful and interesting information shared that even Ray kept awake and has been talking about it all ever since.

Thank you, Yvonne, for all you did to make us so welcome well done another conference successfully completed.

Another great meal was served, and drinks drunk we were all very mellowed.

Getting up this morning and having a quick breakfast we travelled by taxi to the airport, and I asked if we could have assisted travel as the airport is huge and so much walking.

The people were so nice and a lady booked us in. We chatted to other travellers until two lovely young girls came with wheelchairs for us. My first ride in a wheelchair ever.

We went through security and my pusher had to be search like us. She said every time they take someone through, they are searched as they could take a bomb through, and security is very strict.

We then went through to the waiting area for the flight.

Another young girl came to take us to the plane on a electric cart we really had a laugh as she shouts out greetings to all her friends in shops and others transporting passengers.

We arrived at the gate but no plane as it hadn’t landed.

Then the plane arrived, and I expected to have to go in a queue but no! We go down in a wheelchair in the lift walk to a van, as I thought but the driver lined it up with a door above us in the plane and the whole body lifts up and a door in the plane opened and we walked in, but our seat was right at the back of the plane. People were looking at us like passengers do when you’re on a coach and you are last back.

Two young lads were in our seat, and I said, I bet you thought you was going to get away with that, they said yes, and everyone laughed.

In no time we were on lift off and a really great flight again.

Arrived at Luton and it all went wrong. Only 1 wheelchair I walked; Ray had a ride.

We then walked to get the bendy bus to the station, but it was bus replacement to Hitchen. Two lovely ladies pushed us to the front of the queue and then carried my case everywhere. We finally get a train to London, and we got home. We were shattered but so happy we really had had a very interesting few days thanks to so many wonderful people –Thankyou every each and one of you.

The famous Tony Rich It was lovely catching up and he asked me for my Autograph on a magazine that had my story in!!

Andrew Paten of UKNAR the Barcode system I believe in

A Diary Of a #Mesowarrior living with #Mesothelioma #Asbestos — COVID has worn us out but Negative again. Amsterdam on the horizon and Asbestos Police in place

So after dodging COVID for years we got caught and got through it.

When it came to it though we had to work through it on our own as there is so much information and yet not a lot for COVID and Cancer.

Our GP was great in helping with medication.

We had the antiviral drug and that got us to a clear 10 days of feeling very low,

I had decided to contact my Oncologist through my Meso Nurse and ask to come off Chemo.

I had messed about for so long with Bloods being out 3 times and delayed treatment I was in such a muddle to where I was.

Then I checked and it said to stop Chemo until well clear of COVID.

But I have been so low and felt so grotty that Im pleased I put a halt on everything. We have Isolated for 10 days and will continue.

The coughing has stopped, the house is quiet again at night.

The site where we found the most help

It meant I had to cancel FAAM one of my favourite conferences, but I will use this time to get back strong again and hope that 2023 will be a better year.

So we are going to go to Amsterdam in November the 5th European Asbestos Forum foundation #conference! If YOU are an asbestos professional (or even an asbestos aficionado, then you simply have to be here. The latest science, insights, innovations – the exciting EAF is where it is happening. Where else do you get to visit the unique Asbestos Museum, have a private tour of an asbestos denaturation factory, get to hear speakers from four continents or join visitors from five?? Check out the programme and register at See you in Amsterdam! 

Asbestos Police

What started off as a joke has grown to a serious Group thanks to Greg Bryne

Website (Company)

A Diary Of a Mesowarrior Living With #Mesothelioma #Asbestos –The MesoUK Patient Carer Day and now we have a Positive Covid Test

I thought September was madness, but October is even more maddening.

COVID has struck our house. We went to MesoUK’s Patient Carers Day last week and had a great time. It was so lovely meeting up with all our friends and really had a ball.

We travelled up a day earlier to Nottingham to miss out on a train strike. That meant we had the Belfrey Hotel to ourselves, and the staff were so friendly, so we spent a pleasant time there.

So many friends arrived the next day it was great catching up with everyone’s news.

A lovely meal out in the restaurant next door only we didnt know that but found out by calling for a taxi then found all we had to do was to walk through a hedge and past Lidil’s and we are there.

After an educational day the next day where we learnt so much it was time to change and enjoy a Gala evening.

Then a huge surprise in the awards was one for me

It was a great success and next day saw us travel home.

Then we started sneezing and feeling a cold coming on. Tested and yes we have COVID.

I must admit that the GP and hospital swung into action fast and we soon had the antivirus drugs delivered to us and we are on Molnupiravir.

We have had to cancel my Chemo treatment and other appointments to attend conferences until we can get a negative reading and self-isolate.

Oh dear does nothing run smooth in this house.

A Diary Of A #Mesowarrior living with #Mesothelioma #asbestos – September has been a weird month

September is almost over, where does the time go and why does it always rush to Christmas and creates that mad panic once a year.

Its been a month where Chemo has overtaken my world, with visits to the hospital for bloods and treatment.

I do still enjoy Zoom meetings when I can where I learn so much, I do hope they carry on using this tool.

My fav one is with Andrew Paten Co-Founder at UKNAR – UK National Asbestos Register who wrote in Linked in –

WOW!! I am delighted and astonished – this single upcoming webinar has attracted representation from 5% (1500+) of all the UK’s 32,000 schools. 85 Multi-Academy Trusts, 8 local authorities and 2 dioceses plus dozens of individual schools have registered so far. And we are delighted to have Mavis Nye BEM BCAh Hon DR joining us too. I do enjoy speaking a few words as I explain how I want to see the bar code on every building so Trades people can work in safety knowing where the asbestos is.

I was booked into Contamination Expo. I go every year but this year they decided to have a train strike, so I cancelled and cancelled our hotel. Then sadly the Queen died so the train strike was cancelled. I had booked into chemo so I couldn’t reverse our plans. It has been such a muddle month I can’t wait for September to finish.

It seems like yesterday when we were getting ready to attend the British Demolition Awards 2nd of September 2022.

We travelled up with Kirsty Budenbender Director DSK Environmental Ltd to reach the Leicester Football Stadium for the venue.

It really was a grand night with over 400 people attending and Ben Chambers did a great job MCing the event.

I was honoured to receive the Hall of Fame Award- Asbestos Industry Pioneer and the standing ovation deafening as I walked to the stage. A very happy night.

A Diary Of A #Mesowarrior #asbestos #mesothelioma – My Scan result was brilliant news on such a sad day as we say goodbye to Our Queen.

The picture that sums up the day is the corgis waiting for the queen’s hearse -so sad

Even though it was a Bank Holiday I had an appointment for the results of my scan.

I watched as much as I could of the Queens funeral, but I had to turn the telly off as we had to drive to Canterbury.

The roads were empty we couldn’t believe it and was soon turning into the hospital carpark where they had the telly on in the waiting room, so we carried on watching.

I didn’t see my Oncologist I was called in by a dishy young Doctor who was helping out with the list of patients.

He welcomed me and said that my Oncologist had told him all about my case.

He said that my scan was stable with shrinkage?

I asked about all my organs that were showing thickenings. He told me that the liver, bowel, womb, etc were all clear now but the one in my chest wall had shrink a little but the Meso on my lung lining was stable.

I was cocker hoop!!! Brilliant so the chemo has worked Yippee. Gem/Carbo has worked miracles after Immunotherapy.

I will carry on for another 2sessions to make it 6 sessions, then another scan.

I almost danced out of the hospital

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — August The sun has shone and shone

August has been a long hot month and we have enjoyed every day.

Lots of sunbathing and relaxing but also long chemo sessions on Monday (Bloods) the Wednesdays in chemo twice but I still feel great.

We have worked in the garden and straightened it up. My Son chopped 2 trees down for me and then Ray and I worked together I sat down on a garden chair to rest then did a bit more sat down, then back to work for a while then sat down again. I saw it as a great work out but it was more like a battle of wills. I didnt always win but over the weeks the garden looks great. Just a little bit more and we will be straight.

I have been in Zoom Meetings still as it is great to still be in so many places without travelling.

I have been in Southampton involved in the Nero Trial which is now being taken up by hospital slowly we patients need to give it a little push.,evaluate%20the%20efficacy%20of%20PARP%20inhibition%20in%20mesothelioma.

Ray had his eyes tested after having his Cataract done 9 weeks ago and he has good vision in the right eye and has been passed for the second eye to be done so that was good news.

Another meeting involved the Proton Beam which will soon be used on Mesothelioma and that is opening in 2 hospitals 1 up North 1 in London so that is exciting.

Another meeting was about the new Health Companion I have completed a form so will use that soon. Its like a diary of all my treatment etc which is very helpful as Im always being asked when did I have this or when did I do that and after 13 years I cant remember.

The Health Companion allows you more control in the management of your mesothelioma. By enabling you to record, monitor and communicate how you are feeling, you can understand what impact the disease is having on your life, with a view to improving your care and treatment.

​Each month, you will be asked to answer a few questions and rate how you have been feeling – this is easy to do and takes 10-15 minutes. You can use your recordings as a focus for consultations to help healthcare providers understand and support you better.

​Your anonymous data, together with recordings from other users, can be used to ease access and improve cancer treatment, enhance NHS services, and provide opportunities for research into new medicines, treatments and care solutions, to improve the lives of people living with cancer.

August is my Birthday month and I had a lovely time with family and friends then 2 days later It was my brothers birthday the first one after he died in June that is a difficult time bless him.

Here we are the last day of the month and the last day of Summer. We can do with the rain as the ground is so dry but I have to admit I love the heat.

The stories of the month

The Government says a vessel from Brazil that appears to be headed towards the Strait carrying reportedly toxic materials will not be permitted to enter British Gibraltar Territorial Waters if it attempts to do so.

The vessel, named Sao Paulo, is said to be laden with toxic paints, asbestos, and cancer-causing chemicals. It’s on its way to Turkey to be scrapped.

The Government says that unless a vessel (or its tug) schedules a call at the Gibraltar Port, the Port Authority is unable to prevent its transit through the Strait.

The shipping of the vessel goes against an injunction from the Brazil Federal District Court and international laws, according to several NGOs.

Where will this ship end up with its toxic cargo of asbestos?

The second great news it was announced last August 11, Johnson & Johnson would end international sales of its iconic talc-based baby powder and transition to cornstarch-based product,

New York (CNN Business)Johnson & Johnson is abandoning talc-based baby powder next year and instead will make it with cornstarch.

Its talc-based powder, which hasn’t been sold in the United States and Canada since 2020, is at the center of tens of thousands of lawsuits filed by women who have developed ovarian cancer after using regular talcum powder

Johnson & Johnson says it remains confident in the safety of the product. But, in a statement Friday, the company said it would stop selling talc-based powder around the world next year as part of a “worldwide portfolio assessment.”

“We continuously evaluate and optimize our portfolio to best position the business for long-term growth,” the company said in a statement. “This transition will help simplify our product offerings, deliver sustainable innovation, and meet the needs of our consumers, customers and evolving global trends.”

A Diary Of A #Mesowarrior Living With #mesothelioma #asbestos — A very full diary for the month and chemo!

July has been a weird month hasnt it.

With a heat wave never seen before so very hot and the thermometer going off the scale, I wilted and just had no energy but I did manage to enjoy sitting in the garden in the lovely evenings watching some wonderful sunsets.

We had our MNF Summer event with HASAG which turned out so successful with so many messages from people that they had a great time, which is all that matters and we will make this double event a yearly occasion.

I gave a talk on farming for IOSH. I hadnt realise just how serious asbestos on farms was until I researched and now know that with all the old machinery and old buildings it really is a danger.

Ray finally had his cataract operation done after 3 cancellations because his blood pressure and blood sugars were too high. It was worked out that he was suffering with white coat syndrome and given tablets to take for 2 weeks before the day. So success one eye has been done and its amazing how he can read small print again.

His optician will see him in August and pass him for the second eye to be done –brilliant.

I have been booking up hotels for all the engagements in my diary as I just wont let Mesothelioma get in my way and the really exciting trip to Amsterdam is wonderful as I get to see Harry Vonks Asbestos Museum thanks to Yvonne Waterman and her Conference in November at The Van der Valk Hotel Oostzaan, 10-11 November 2022

Flights are all booked !!

We had a great day at the graduation ceremony at Canterbury Cathedral where as Hon Doctors Ray and I joined the Academics on stage a wonderful experience.

Robin Bennet

A trip to London was very interesting as we had been invited to a round table in the Church of England head office so thats another building we have been able to see inside. Church House Westminster where the Arch Bishop of Canterbury has his office.

The round table was to discuss Asbestos management but the Government released a statement on the 40 years plan to have asbestos removed from all buildings which is now causing concern and means it has given us another fight to contend with. :-

The Government remains concerned that moving to a fixed deadline for removal would
increase the opportunity for exposure which remains difficult to support if the current
risk of exposure is very low where asbestos can be managed safely in situ until planned
refurbishment works. The use of many public estates would also be significantly disrupted
by a removal deadline if this were introduced outside existing estates strategies. There
also remains a concern that introducing a deadline would stimulate poor removal and
disposal practices with a further risk of increase in asbestos exposures.
The Government agrees we need to understand more about the likely rate of elimination
due to current levels of asbestos removal though planned refurbishment and demolition.
National modelling carried out by the HSE as part of the forthcoming Post Implementation
Review of CAR, whilst based on estimates, indicates that there will be a substantial
reduction in the numbers of buildings containing asbestos over the next few decades.
HSE is also planning research to utilise digital information to more accurately define the
scale and location of buildings likely to contain asbestos and this evidence can be used to
inform future work and priorities

The full report is here

A train strike stopped us going to a meet up with HASAG yesterday, although the strike was on Wednesday the time tables were messed up with the station not opening until 7.30 and trains not in the right places. Chaos is being caused and another strike tomorrow (Saturday) chaos will reign over the weekend.

So very pleased to announce The Mavis Nye Foundation and in partnership with Hasag Asbestos Disease Support are together Funding a Mesothelioma UK Nurse We need more Nurses that understand Mesothelioma An exciting day for The Mavis Nye Foundation and its partnership with Hasag Asbestos Disease Support

I have had Chemo number 2 over the last two weeks. The double dose was last week and I was all good, just a feeling to be sick that subsides. The single dose was on Wednesday and Im just so tired but I cope with that.

The gem/Carbo regime isnt too gruelling and now I get 15 days free.

So now we go into August I wonder what that will bring me ??

A Diary Of A #Mesowarrior Living with #Mesothelioma #Asbestos– The Mavis Nye Foundation and #HASAG put on a Summer Event

Who would ever think that this old church could be such a great venue for two charities to come together for a summer event- but it did.

HASAG and The Mavis Nye Foundation came together to raise donations for the same passion we both have -Mesothelioma the Asbestos disease.

After weeks of planning we finally made it and the day arrived

On arrival early we decorated the hall with flowers and lights and it all looked lovely.

Our guests arrived and the event was underway

After a drinks reception a curry night was served.

I found the whole night very emotional as everyone came up to me and greeted Ray and I. We hadn’t met for so long. The pandemic has really been in the way of us enjoying these great nights out.

When your Doctors are at an event you have put on its so emotional and Miss King was a great surprise as I have so much affection for her, 13 years ago she did my pleurodeses and was so very kind to me in the operating theatre and her she is at a party I have helped to put on, the same for a wonderful doctor Professor Peter Szlosarek it was so lovely to see him again.

The highlight of the night was the auction where Rays painting raised £400

The great US Lawyer Brenden Tully did a wonderful job as a Auctioneer with all the prizes that had been donated which we were so grateful for. just watch the big man xx

SO here I would like to thank Hugh James. Richard Green, Mary Mulhall, Angharad and Racheal Thomas for all your hard work I really do appreciate all you did.

Joanne Tatam and Mum Maureen for all your help and Reece and Thomas for the lovely baby items you donated for the Raffle.

Nicky Howe for all your help

All the people that donated Raffle Prizes and Auction Prizes, James Johnson for the helicopter ride, I dont know the final figure as yet but I will put on my face book

Thankyou to all the Lawyers for the wonderful prizes you donated, NHS workers for all you do to help us Mesowarriors I can go on and on but my main thankyou is to Lynne of HASAG, thankyou for all you do, it was great to work together as you are a Mesowarrior and you know how devastating it all is as you lost your wonderful Dad. You have the same passion to help all those that go through mesothelioma. Thank you and bless you xx

IF I have missed any one out sorry you can see just what an emotional night I had.

Dani Carter my wonderful Mesowarrior and a great friend xx

A photo with my Doctor he makes me smile xx

A Diary of a #Mesowarrior living with #Mesothelioma #asbestos — The good news and bad

I have tried to write my blog and keep it up to date but its so hard when things are not going right. There is a lot of happy exciting things as well so lets celebrate the good things.

Ray can see again without glasses Yes he has had his Cataract operation at last. We sneaked up last Saturday and his B/P was good and Blood Sugars were great and he disappeared from me wearing a shower hat with a cross marked over his right eye. Half an hour later he came out all smiles. It was a very thick cataract but that was because when a young boy he was hit in the eye so there was a scar as well to take off.

He couldnt see out of the eye under the plastic cover and for 2 days we were worried but then by that evening he could begin to see shapes and by the next morning he could read small words on the telly.

Now he has perfect vision and is so happy.

We were able to go to Canterbury Cathedral for the Graduation Day and we had been invited to a meal and then to walk in the procession through the Cathedral and sit with the Academics on the stage. It was wonderful to clap each student as they received their degree. Its been a hard time for them as they worked through the pandemic but they achieved.

There is a blurred picture of me here as we walked in and a couple of us right at the back on the stage on the left hand side but it wasnt about us it was about just being there.

That was all the good news of the week

I went and got my bloods taken before we went to the cathedral and when i got home there was a phone message to say my chemo is cancelled due to a low blood count infact my immune system had collapsed.

I had a lovely phone call yesterday from my Oncologist and she has mentioned injections to give my Immune system a boost. She thinks I have had so much treatment and also the 4 years of chemo from 2009-2013 have taken their toil on my marrowbone.

So its recommended I have a lower dose and a scan next and if my bloods are picking up next monday.

I go along with that and see what happens next.

Im still positive thinking (well trying hard)

A Diary Of A Mesowarrior Living with #Mesothelioma #Asbestos— Action Mesothelioma Day 2022

Im here in the Office with a cant sleep wont sleep. 13 Years ago I was doing the same with Chemo and here Iam again.

Its been a wonderful Day at the Sittingbourne Science Park where DSK Environmental hosted the day.

We met so many lovely people that worked there and Mesowarriors came along as well, the best being our new recruit Joanne Tatam,s Grandson with her son in law who is just as cute as baby Hugo

I was being very good as I had my 2nd chemo only on Wednesday.

Im tolerating very well as Im in my 2nd week now its just tonight I cant sleep wont sleep.

Maybe because I kept myself going through a very long day.

We had a barbie and Joanne bought me a Icecream cone the first one for over 3 years and boy did I get in a mess. My nose ended up with ice-cream. It was great though.

So here are some of the photos

A good time was had by us all and we will be back next year

Thank you to everyone for your hard work but Especially Kirsty and Chloe also KSP for allowing the event to happen xx