A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Dave Staley’s gruelling 100-mile cycling challenge.

dave 1

Dave Staley, from Bramhall, was diagnosed with terminal lung cancer in 2015; he had a lung removed, and was told he had less than a year to live. Now Dave, who’s 41, is about to attempt a gruelling 100-mile cycling challenge (starting 30 July), defying medical predictions, to raise money for lung disease research.
Dave has mesothelioma, a terminal lung cancer related to exposure to asbestos. A year after completing chemotherapy, and after making the agonising decision to have his damaged lung removed, he will cycle 100-miles, from Queen Elizabeth Olympic Park, into the Surrey hills.
Dave’s ‘One Lung, One Life, One Hundred Miles’ cycling challenge will be raising money for two charities that invest in mesothelioma research: British Lung Foundation and Today was the last “big training ride” before the Ride100 in 2 weeks. It’s now rest and a few short rides to keep the legs ticking over.

He says :-
There are so many of you to thank on this journey, but just want to mention a few:
My wonderful wife(& kids) for being very supportive and becoming a cyclist widow -Todays 5hr ride took me to a grand total of 104hrs & 40min of training – an average of 7hrs per week with a total distance of 1341 miles travelled!
Jane at cyclebuddie.co.uk for all the weekly training sessions and expert advice to get me up the hills currently 200ft short of hitting the magic 50,000ft of total climbing!
Simon and Emma for completing the 100 miles last year and inspiring me to do it this year (though maybe I should not thank you until it’s over!!!)- Simon & Steve (& their wives and families too) for the constant support and encouragement and whom will get me over the finish line in 2 weeks!!

I have met Dave many times as we both are involved in Mesothelioma UK. He is a larger than life character and so young to be suffering with Mesothelioma. It does mean he was fit for an operation as a Lung was removed. It gives a better chance of survival and if the disease is in just one lobe it is a great success.

When you have young children it must be even more scary for a Mesowarrior as you worry whether you will see your children grow up. Dave has that chance now and I pray that continues

children

They are so lovely and lively.

children 2

Maybe they should join Dad on the ride.

dave

Good Luck Dave from all the Mesowarriors

If you want to help Dave here is his just giving page

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=DavidStaley

Dave’s Blog https://davestaleyblog.wordpress.com/

I have been to-day 1 of Dave’s blog. This is where I first came across him and I thought then what a brave young man.

I loved his sense of humour. I admired the way he came through the Op and was amazed at how quickly he went back to work that was a brave thing to do but proved just what fight was inside our Mesowarrior.

Hi All
Having made the decision to go through with the full EPP – lung removal, it was wonderful to be contacted by other ‘Meso Warriors’ (America, Australia, U.K. ) via the blog. I never thought it would have the impact it has. They have had the same op, but 10 & 13 years ago….. Amazing stories, and like them I will still be writing these blogs in 10+ years time.(Sorry you maybe bored with them by then….)
Having made the decision, it was great to relax and celebrate turning the big 40! Ali booked us a meal at hawksmoor (best steak house in Manchester!), followed by nice surprise in the evening. Ali then booked for the 4 of us to go to langdale ( Lake District for the weekend). We had a great time, kids enjoyed swimming; we enjoyed 2 pub meals @Wainwrights & walks; and then a day with the stanley clan in Ambleside. Thank you Ali you did truly spoil me.
Monday was all about getting ready for hospital visit, planning for the week ahead, and seeing friends. Thank you to everyone for kind offer of help, and we will be contacting you all to take you up on it (if we haven’t already….). It was also an emotional day as reality starts to hit home, and the fact I won’t be seeing the kids for 7-14 days. Thoughts of ” I may never see them again (due to high risk of surgery) has crossed our minds, but I remain positive this will not be the case, due to the trust in the surgeon and his team in Leicester, and the love, prayers & the support from every single one of you. This is helping us be so positive.
Today we dropped kids of at school who went in as normal, and it was us adults who were more emotional/worried. We have told the kids Daddy has a poorly lung, which the doctors are repairing. Joshua said to his Aunty ( who is a nurse!) “can you not do the operation, and Daddy stay at your house in Liverpool”! If only it was that simple….
This morning I also received 2 emails from Everton football club, one from Graham Stuart and the other Graeme Sharp. I was beaming, and the fact they had mentioned the blog made be very proud & emotional…..also on recovery I may get invited to meet the players…..Thank you to whoever has arranged this….
So I’m now enjoying a good meal (more steak and more beer), whilst writing this blog. We have met Dr Waller and his team this afternoon who have made us very relaxed (as can be) for tomorrow. He advised he discussed my case at a Meso conference in Spain, with worldwide experts. Majority view was to go for full EPP. He advised Leicester is currently treating the most Meso patients worldwide!! I feel so lucky that I have had world specialists looking at my case, and at the best hospital. Due to the major surgery I will be having an epidural, along with any other strong drugs to numb the pain…”1000 X stronger than morphine” was said!!
So tomorrow I will be given sleeping tablets at 11am and go into theatre midday. The operation will be 3-4 hrs, and then into recovery. As a precaution I may go into intensive care, but more likely HDU. I should be out of recovery between 7-8pm ish!! I will not eat for 48 hrs, so hopefully by Saturday I will start to eat and have some movement…..Ali or my sister will update Facebook to let you know, and you will have another blog from me early next week. –So that’s me off now to look at the desert menu, drink with my gorgeous wife but once again, a massive thanks to you all for the love, support and prayers.
Dave & Ali X

warrior

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos Sharing with you Whitstable’s Oyster Celebration The Best Week of the Year.

Its been a relaxing weekend but oh so chilly and now its pouring hard.

oyster 1

Yesterday we saw the crowds squeeze into our seaside town of Whitstable for the Oyster Festival.

They moved it from the Harbour to Tankerton Slopes which meant people were packed in to the grass are.

Eric Fisher

oyster

At least the sun shone for the crowds.

 

oyster 2

Paul Salty Saltburger -Great crowd for the Oyster eating competition…

Eric Fisher

oyster festival 2

osters arriving

street life

fodskitchen

Then & Now
Today’s festival, a colourful celebration packed with food & drink, music, processions, competitions, and many many other great events, is actually a modern revival of an ancient holy festival dating way back to Norman times.
Back then Whitstable had already established itself as a fishing port and the local fishermen and dredgers held annual ceremonies of thanksgiving, not just for the success of the harvest, but also as thanksgiving for their survival at sea. Being practical, and so as not to interrupt their busy seasons, the Whitstable fishers held these celebrations during the slack period for oyster harvesting. This explains why even today, you’ll find the festival is held in the summer, outside of the season for eating the Whitstable native oysters.
As a Holy Day the original Festival would have included a formal church service followed by abundant feasting, dancing and games play.  The exact form of the original ceremony is not completely clear, but would probably have centred on a formal blessing of the town, the sea, the fishing fleet, and indeed, the fishermen and dredgers themselves.
Today’s celebration symbolically recreates the ‘Landing of the Oysters’. When Whitstable’s very own Sea Scouts land the oysters, which then go on receive a formal ‘Blessing’ before being presented to the Lord Mayor.  The blessed oysters are then distributed to the town’s inns, bars and restaurants via the vibrant and colourful Festival Parade as it travels through the historic centre.
For the following three jam packed days, Whitstable continues to celebrate.
Food and drink markets, live music, children’s activities, recitals, community processions, oyster eating competitions and mud tugs take place across the town’s beaches, harbour and parks.
Grotter building, a local Whitstable tradition, is one of the most eagerly anticipated events of the week. This year, the Grotter building will once again be on Thursday. So, what does a town do with 1000’s of left over shells at the end of a shucking packed week? Grotters are built by families across the beach – small hollow mounds decorated with oyster shells. Originally built by children who would beg “a penny for the Grotter”, much as other children did for Guy Fawkes, today’s Grotters are built purely for the fun of it and lit by candles to produce an intriguing night-time spectacle.
Whitstable is proud of its unique festival and welcomes visitors and tourists to join and participate at these celebrations. Whilst maintaining traditions founded by the Norman’s, today’s modern celebration has become the most fun filled beach-side family festival. Enjoy!
Whitstable Oysters
The native or flat oyster (Ostrea edulis) is the oyster that made Whitstable famous. When the Romans arrived, the shores off Whitstable were abundant in these bivalves due to Whitstable’s favoured position on the Thames Estuary. Here, the nutrient-rich waters that flow down the river when mixed with the saltwater of the North Sea in the shallow warm water off Whitstable provide the perfect growing environment for the microscopic algae which form the oysters’ diet. As their name suggests, these native oysters are indigenous to our shore with a reproduction cycle adapted to our waters. During their breeding season in the summer months the native oysters are unpalatable. They are only fished in the winter months (those months with an ‘r’ in them) September to April. The more common rock oyster (Crassostrea gigas) was introduced from the Pacific specifically for farming as it is more resilient than the native oyster. Rock oysters are available all year round and it is these that are consumed in abundance at the Whitstable Oyster Festival every July.
The Whitstable Oyster Festival Association (WOFA)
WOFA is the local advisory group helping to produce Whitstable Oyster Festival each year. WOFA aims to enhance the understanding and appreciation of, and involvement in, Whitstable’s culture and heritage. It warmly welcomes new members to the advisory group, or volunteers during the festival. Contact  directly via the WOFA Facebook page and Twitter.

This was last years as this year there isn’t to be any fireworks. so sad.

We could still hear the music from the town well into the early morning last night and even though we have had heavy rain we can still hear it now.

http://www.whitstableoysterfestival.co.uk/day-by-day.htm

prog

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Lets talk about Trials

teleconference

I’m really getting involved in the modern world of conferences.

It was the first CONFIRM TMG the trial I have been involved in all year. You phone in and use a PIN Number and there you are in a conference. amazing.

it is difficult to break in with comments and you feel you are over riding others. It is so different to being in the same room you can then judge when to cut in, but on the whole it went very well and I was able to get my thoughts through ok.

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-nivolumab-for-mesothelioma-confirm

It appears the trial is recruiting well and is now breaking out into other hospitals.

The list of hospitals running the confirm trial now So please contact
You will see at the bottom like DR Riyaz Shah And Dr Sanjay Popat they have declined as they are running the promise trial I have omitted the negative hospitals I don’t know their reasons but I hate negative we patients meet up with that to often.

CONFIRM TRIAL
Leicester*
Dean Fennell
Recruiting since 28th March
21
Aberdeen*
Marianne Nicolson
Recruiting since 27th April
0
Beatson (Glasgow)
Nicola Steele
Recruiting since 30th May
1
Wythenshawe
Raffaele Califano
Recruiting since 15th June
0
Velindre*
Jason Lester
Recruiting since 22nd June
2
Southampton*
Christian Ottensmeier
Recruiting since 10th July
Harrogate
Sam Chan
SIV completed 29th June
N/A
UCLH
Dionysis Papadatos
SIV completed 17th July
N/A

Maidstone
Riyaz Shah
Declined: PROMISE-meso
N/A
Royal Marsden
Sanjay Popat
Declined: PROMISE-meso
N/A

Please keep applying if your hospital is on the list.

The Promise trial was held up due to the dreadful Computer Virus suffered around the world So I asked was there a delay and was told Mercks was hit (like the NHS) by the Cyber Attack it did hold up things but it had now been sorted and it was back on track.so please ask where it has got to. There is always hick up at the start of trials but a cyber attack unheard of.–

https://www.washingtonpost.com/news/the-switch/wp/2017/06/27/pharmaceutical-giant-rocked-by-ransomware-attack/?utm_term=.21141ed2e776 

This is the Promise trial and as you can see it is my drug put with Gemotabine and vinoralbine so please apply to the two Oncologists on the list or talk to your Oncologist for referral. I love the cross over and said that in the meeting.

If you have growth they can then check if you was on the Placebo and changeover to the drug. I find this is a far better option and if they did this more they would recruit better

 

promise trial

They mentioned other trials like VIM is open and doing well at Leicster, Checkmate is opening soon ad they discussed Rechallange  which has been discussed in conferences so I knew what they were talking about.

Phase I is normally Cisplatin and Alimta, when this has regrowth we are normally put on trial or another chemo as I was. They are finding that when you have Cispaltin and Alimta for Phase 2 treatment the result is good. I said any treatment is great just keep treating us.

So the meeting ended and we will meet again in 3 months. I hope by then we will see Confirm is doing so well. If it is a success it can be fast tracked -another word I love.

So much is going on it is hard to keep up with the pace

peter 11

A really great bit of News is  Peter has announced that the Atomic Trial Has opened at St Barts Peter Szlosarek p.w.szlosarek@qmul.ac.uk
Just wanted to say ATOMIC is officially open in the UK. This is only for patients with biphasic or sarcomatoid meso (the nasty ones) and will randomize fit patients to either PEMCIS+ADI or PEMCIS + placebo.
The trial should hopefully be rolled out across the UK in the coming months (Leeds had a meeting to open and should be starting next). So contact Peter if you or your Mesowarrior has the right group of Mesothelioma
ttp://abstracts.asco.org/199/AbstView_199_190876.html

I do wish you all the best of luck please keep joining in the trials we have some great people working so hard to find answers and this is the best way we Mesowarriors can help

good luck

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – Come and join us at the European Asbestos Forum Canary Wharf Sept 25th and 26th 2017

ukata

A year has passed since Ray and I planned and  joined Yvonne and all the other speakers and Guests in Amsterdam.

It was a great conference very informative and this year it is being held here in London  For the 3rd International Conference of the European Asbestos Forum at the Hilton Canary Wharf Hotel, London, 25-26 September 2017 We are preparing our presentations ready, the double act will be together on stage.

We are really excited as we have so many friends attending and speaking so please come and join us and also apply for free tickets to the Contamination Expo where once again so many friends will be there.

logo con

http://www.landremediationexpo.com/index.asp

EAF

Welcome to the 3rd EAF conference on 26 September 2017: ‘Asbestos & Industry’
Location: the Hilton Canary Wharf Hotel on South Quay, Marsh Wall, London. Dates: 25 September 2017 (workshops) and 26 September 2017 (conference)
This year, we will examine many aspects surrounding the main topic: asbestos in industry. What does this mean to society, to the economy, the environment? What are the problems and the solutions to share in this regard? Speakers from across Europe, the United States, Australia and New-Zealand will give exciting and very varied presentations.
Many professional organisations are contributing speakers to the conference: HSE, ARCA, UKATA, TICA-ACAD, etc. The presentations will be very practical and challenging, such as removing asbestos in a nuclear reactor (Beacon) or a petrochemical plant (ExxonMobil) or how to change asbestos waste into a safe product (WISG). There will be top-level lawyers from England and the United States to provide a legal perspective, as well as speakers to provide an insurance or medical view on the latest developments. The accountancy firm BDO will explain how to save money when removing asbestos in industrial sites; and so on!
While the EAF is focused on professionals of all kinds, asbestos victims organisations are welcomed, too. Indeed, the British Lung Foundation and Mrs. Mavis Nye BCAh, England’s most well-known asbestos victim, will give thought-provoking presentations as well.
If this brief line-up is not already sufficient reason to attend… Consider this.
The European Asbestos Forum strives to improve professional networks and the exchange of the very best and newest knowledge regarding all matters related to asbestos – across borders and sectors. Sharing the best innovations, the newest insights, the best practices. Learning from each other’s mistakes and successes. This is where you truly learn more about asbestos and make useful new contacts to bring your own work to a higher level.
Meet your national and foreign colleagues and become part of the international asbestos network for professionals: the European Asbestos Forum.

2017 Conference speakers

Terry Coleman
Director and Owner of Coleman Consulting

Terry Coleman, of Coleman Consulting Ltd and Pacifica Environmental Services Ltd Fiji, has decades of experience in both the demolition and asbestos industry. Known for his dedication to furthering the causes of asbestos education and eradication, he is also the Secretary of the New Zealand Demolition and Asbestos Association (NZDAA) and a respected advisor on […]
Arjan Endhoven
Tax Partner at BDO Accountants and Tax Advisors

What does asbestos mean for the value of Industrial real estate? It’s a difficult question and one that Arjan Endhoven is highly qualified to answer. Arjan studied Tax Economy at the University of Amsterdam. After finding his wings at an international tax practice of an American based global audit, he switched to BDO in 1999 and became […]
Geoff Fary
Former Chairman of the Australian Asbestos Safety and Eradication Council

Geoff Fary has an unusual combination of background and experiences. Born and raised in rural Southern Australia, he has worked as a farm hand and sheep shearer, studied in Switzerland and also at the Harvard Business School. He has been Assistant Secretary to the Australian Council of Trade Unions, independent Chairman of the federal government’s […]
Dr. Martin Gibson
Principal Specialist Inspector (Occupational Hygiene) HSE

Dr. Martin Gibson has worked for HSE since 1986 and has been involved in much of HSE’s work on asbestos over the last 15 years, including the development of the Control of Asbestos Regulations (2006 and 2012) and the associated Approved Codes of Practice; and also on the production of technical guidance on asbestos such […]
Jeroen Kersten
Asbestos Consultant at Sodexo

Nothing asbestos related ever happens (or should happen) at Schiphol Airport without being run by Jeroen Kersten first! An expert on asbestos and fire hazards, Jeroen is the ‘asbestos man’ for the entire huge complex, of which only a small part may be seen above ground. The specific nature of an airport can lead to […]
Graham Warren
ACAD Manager at TICA-ACAD

Graham Warren is the ACAD Manager at TICA-ACAD. He specialises in auditing management systems, asbestos management and asbestos data management. Graham will speak on a an important topic to the EAF: raising awareness of asbestos dangers in the workplace, in order to prevent future victims.
Brendan J. Tully
Partner and trial lawyer at Phillips & Paolicelli LLP

Brendan is a partner at the American law firm Phillips & Paolicelli LLP in New York, where he heads the Asbestos & Talc department.  One of the leading trial lawyers in the United States in this field, Brendan has blazed new ground in pursuing American product liability lawsuits for international mesothelioma victims. He has won […]
Christian Lahnstein LL.M.
Member of the European Centre of Tort and Insurance Law at Vienna

Christian Lahnstein has studied law in Tubingen, Munich, Genève and Salamanca. As lawyer he worked for Munich Re in Colombia (from 1982 to 1988) and Munich (until 2014), responsible for fundamental issues relating to tort and insurance law, for developing strategies to deal more effectively with long-tail risks
Ana Nogueira
Specialist at the Portuguese Departamente de Saude Ambiental, Unidade de Ar e Saude Ocupational

Ana Nogueira works at the Portuguese Department of Environmental and Occupational Health, the Departamento de Saude Ambiental, Unidade de Ar e Saude Ocupational. In her presentation, she will explain about the Portuguese public policy with regard to asbestos, more on this to follow!
Mavis Nye BCAh
Founder and Director of the Mavis Nye Foundation

Mavis Nye will speak of her five year fight with an invariably fatal asbestos cancer, mesothelioma, which usually claims its victims within a year of diagnosis. Having initially only been given three months to live, she set upon a difficult journey through four chemo regimes and two Phase I trials, only to be told no […]
Neil Redfern
Operations Manager of Shield on Site Services

Neil Redfern has been involved in the asbestos consultancy sector for over 25 years, working for UKAS accredited organisations throughout the UK and also abroad for some of the world’s largest organisations. His wide experience, from analytical /surveyor level through to Director has given him great insights into the world of asbestos, which he is […]
Stephen Sadley
Keynote Speaker and CE of Asbestos Removal Contractors Association (ARCA)

Stephen Sadley has been the Chief Executive of the Asbestos Removal Contractors Association (ARCA) since 2008, following joining ARCA in 2000 as Business Development Manager before becoming the General Manager. He has spent his entire career in the asbestos management industry, in various roles. As CE of ARCA, he also is a member of The […]
Marcus Sanders
Group Marketing Director of ARI Global Technologies

Marcus Sanders of ARI Global Technologies, a qualified marketer, has over 20 years experience in strategic management, spanning across various sectors, countries and markets including hazardous waste management, construction and manufacturing. He will give a presentation on the very exciting and innovative, patented technology of his company which will set a worldwide precedent for managing […]
Harry Steinberg QC
Barrister at 12 King’s Bench Walk

Harry Steinberg QC is a barrister at 12 King’s Bench Walk. He specialises in asbestos litigation and private international group claims. Chambers & Partners described him as “the go-to man for asbestos claims; no-one else compares”. Harry will focus his presentation on the dramatic effect that the importation of vast quantities of asbestos fibre had […]
Ron Symonds
Group Head of Environment Management and Property Business Partner Royal Mail

Ron Symonds MBA MSc FRICS CMIOSH MIIRSM will be a Session Moderator at the conference. In 2016, he gave a well-received presentation for the EAF, on the challenges of managing asbestos in a large property portfolio. (The Royal Mail is the largest property owner in the UK.)
Hein Tersteeg
Asbestos coordinator for Asis-t, active for ExxonMobil Rotterdam

Hein Tersteeg is a highly experienced CINI international insulation inspector, scaffolding inspector and asbestos coordinator for the firm Asis-t. As such, he is presently active at the vast petrochemical site of ExxonMobil in Rotterdam […]
Hans van der Wart Msc, MBA, Bsc
Conference Chairman, Executive V.P. Kiwa Compliance International

Hans van der Wart will be your Conference Chairman for the third time. In daily life, he is the Executive Vice President at Kiwa Compliance International (formerly called Shield Group), a growing group of companies that do environmental, chemcial and biological testing, surveying and consultancy activities, mainly in the field of dangerous compounds/situations such as […]
Yvonne Waterman Ph.D. LL.M.
Founder and Director of the EAF Foundation

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 about the solutions their neighbours came up with […]
Professor Dr. Roger Willey
Chairman and CEO of ACS Risk Group

Roger Willey started the first private asbestos test house in Scotland, in 1978. Since then, over 99,000 separate projects have been completed on most continents in the world. Roger has extensive experience of the development of asbestos legislation in the UK, having helped develop and implement key legislation. He has acted as ‘Expert Witness’ in […]
Mark Winter
NE Branch Manager at Beacon International

Mark Winter has seen a fair bit of the world. Born in England, he has worked long stints in both South Africa and Australia. After returning to England, he began as an independent asbestos trainer in 2004, establishing CNM Training Solutions Ltd. From 2009 to 2014, he has also been a director of IATP, …
Dr. Penny Woods
CE of the British Lung Foundation

Penny qualified as a doctor in 1987 and has an MA from Cambridge University and an MBA from INSEAD. She has many years’ experience working in the healthcare sector as a management consultant for a wide variety of clients, including governments, multi-national companies, NHS organisations and private health care providers. She spent seven years in […]
Professor Nico van Zandwijk
former Director of the Asbestos Diseases Research Institute (ADRI)

In 2007, he joined ADRI after a long career in thoracic oncology in Europe. In 1985, he founded the department of thoracic oncology at the Netherlands Cancer Institute and made major contributions to the identification of prognostic factors in lung cancer and malignant mesothelioma, to chemoprevention studies in lung cancer and major national and international clinical trials.

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – The Launch Date Is Set Thursday 7th December 2017

We have had a very productive meeting in London with the Mavis Nye Foundation Board and so the date has been set for the Launch Dinner Dance.

A weird moment that little old me is going to do a charity fund raising night.

The Venue is The Richmond Hill Hotel

http://www.richmondhill-hotel.co.uk/en/default.html?gclid=CI6jy6HNitUCFeYy0wodNf4LTg


 

 

 

 


 

 

 

 

 


 

 

 

 

 

 

 

 

 

 

As the Hotel will be decorated for Christmas we will carry on the theme of white Christmas with presents under the tree and a silent Auction. I will have to start talking to people to Donate Prizes and some great this to auction.

There will be Christmas Fairies to give the prizes out and a great entertainer Terry Rydell so we will dance the night away into the early hours.

I had that scary feeling that no one would say yes they will be coming but that is not the case and I’m so amazed at the interest.

But then I have been surprised all the way through with the enthusiasm of the people that have backed me and I keep adding to the Advisory Board Advisory

Harry Steinberg QC

Marika Townsend LASAG

Peter Szlosarek  St Barts
Dean Fennell Leisc Hospital

Liz Darlinson  Mesothelioma UK

IATP Paul Beaumont.. Biacs ,Asbestos Training.
Chris Ward Award Health and Safety

Rachel Thomas St Thomas and Guys Hospital

All wonderful people that have been with me right from the start of my journey.

Not forgetting Trevor Stirling the Mary Seacole  Trust Ambassador who is on the board. Such an impressive line up and I’m thrilled my son has joined Ray and I as I know it will carryon after I have left the planet. He and Angela Caulfield with the Mesowarrior’s UK will see it onto the future and we have young  people, who were the Granchildren of Mesowarriors that have their wings, that wish to carryon the good work.

So we are ready I’m even book into the Hotel with others we just cant wait to party so please come and join us.

Launch

http://www.mavisnyefoundation.com/

mnf-light-head-banner

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Tea Parties and LASAG’s First Support Meet East Kent

So much happens each day its amazing.

Tea parties are being held by the mesowarriors UK around the country raising money for Mavis Nye Foundation and that is just what they have been doing x

https://www.facebook.com/events/178395319352333/

MNF

A coffee morning to be hosted by yourself, at a location of your choice on any date in July. Your the host so it is entirely up to yourselves the times etc.

Suggested places – your home (but please only if you are inviting friends only, church halls schools, local community halls etc.

The coffee morning can be as small or as large as you like.

Mary Cabrol thank you xx and Clare Jaycock Thank you xx

Clare                                                   Mary

lasag 1

Today we had to go to Thannington Canterbury for the first Support meeting.

We pulled up and there were only 2 cars but soon the car park filled up and we met so many lovely Mesothelioma Patients.

It was a great success as we found out about each other. Well done LASAG Canterbury and East Kent has the first support group ever.

http://lasag.org/index.html

 

sg3

sg2sg1IMG_20170711_141522IMG_20170711_141508IMG_20170711_141452

IMG_20170711_141446

A great first meet well done

Oh Yes !!! we were on MTV –like you do !!

I was 15 in this picture and Ray 19 hope you like the Recording

A Diary Of A Mesowarrior Living With #Mesothelioma My travel to #asbestos conferences all in one week its been so busy.


 

 

 

 

 

 

We did finally arrive at Longbridge after a long train journey to London across to Euston then up to Birmingham New Street then on a slow cross country to Longbridge.

We finally arrived in a taxi to the JUAC Asbestos in schools Conference at Hillscourt Conference Centre. We had arrived the day before so not many were there with us but we did have a great discussion with 3 members and our eyes have been opened by the problem of teaching in this day and age.

This is the Video Ray did for the JUAC

after a great nights sleep and breakfast everyone joined us in the Conference room. So great to meet so many people who wer known to us through Social Media and The House of Commons

JUAC Asbestos in Schools Conference – 4 July 2017
The first national conference addressing the issue of how to protect children and staff from the dangers of asbestos in schools and colleges is being held on 4 July 2017 at the Hillscourt Conference Centre, Rednal, near Birmingham.  The conference is organised by the Joint Union Asbestos Committee (JUAC), a non-party political campaign which aims to protect children and staff in schools by promoting awareness of the dangers of asbestos and the need for improved management.
The continuing presence of asbestos in our schools is a scandal, as is the shocking lack of consistency in the way in which it is managed across the country.  Around 86 per cent of schools contain asbestos and deaths from mesothelioma are increasing.  In 2014, 17 teachers aged 74 and under died of mesothelioma.  The total number of support staff deaths is not known.
Of even greater concern, particularly to parents, is that children are at an increased risk of developing mesothelioma in later life, because of exposure to asbestos at their school.  It is estimated that 200 – 300 former pupils are dying each year as adults because of exposure at school during the 1960s and 1970s. This number is likely to increase considerably because many of the system buildings, such as CLASP, with the most asbestos are deteriorating and inadequate funding and support is available for necessary maintenance, renovation and demolition.
Freedom of Information Data obtained from local authorities indicates that at the current rate of funding it will take another 50 years for potentially dangerous CLASP schools to be demolished.  Only 25% received funding for repair, maintenance and demolition between 2010 and 2017.  This FOI CLASP School data is available on line at https://www.whatedotheyknow.com and a summary of the preliminary findings is available at http://www.juac.org.uk/ .
Recent Freedom of Information (FOI) requests to all local authorities in England and Wales have revealed that over £10 million has been paid in compensation to former school staff and pupils as a result of asbestos exposure. The FOI requests, available online at https://www.whatdotheyknow.com/user/lucie_stephens/requests, reveal a shocking disparity in how asbestos in schools is being managed, with some LAs stating they do not hold this information, despite being the legal duty holder.
JUAC is currently repeating this FOI exercise with Multi Academy Trusts, in order to establish a national picture of which schools contain asbestos, something the DfE has so far failed to do.
JUAC’s contention is that the policy of managing asbestos in schools is simply not working and is putting children and staff at risk.  JUAC calls upon the Governments in England, Scotland and Wales to:
undertake a national audit of asbestos in schools;
set out a long term strategy for the removal of asbestos from all schools; and
ensure that the Health and Safety Executive has the funding it needs to routinely inspect schools.
The 2017 Labour Party Manifesto included a commitment to remove asbestos from all schools, the first time any political party has made this pledge. JUAC calls on all parties to confirm their commitment to protecting our children and school staff from this hidden killer.
Rachel Reeves MP, who chairs the Asbestos in Schools Group, will address the conference and there will be speakers representing the trade unions, the DfE and HSE, alongside medical and other experts in the field.   Delegates will come away with a better understanding of the hidden dangers that asbestos poses to pupils and school staff, and what needs to be done to keep them safe.
Speaking about the conference Rachel Reeves MP, Chair of the Asbestos in Schools group said:
“The 2017 Labour Manifesto committing to a phased removal of asbestos in schools was a step-forward, recognising great work by trade unions in bringing attention to the issue. The JUAC conference is an opportunity to continue this work. It is unacceptable that we continue to put pupils and staff at risk. The Government should follow this lead and commit to a phased removal.”
Kevin Courtney, NUT General Secretary, said:
‘The continuing presence of asbestos in our schools is a national disgrace, putting at risk the health of staff and children. This conference will shine the spotlight on how asbestos is managed and by bringing together representatives from Government, the HSE, the medical profession, those who work in the field, employers and trade unions we hope that all parties will share a better understanding of the need to do more to protect the occupants of schools and begin a national phased programme of removal.’
Mary Bousted, ATL General Secretary, said:
‘It is shameful that the government continues to ignore the simple fact that as long as asbestos remains in school buildings children and staff are at risk of entirely preventable illnesses. This conference will bring together experts in asbestos to promote a better understanding of its dangers and agree how best to ensure the safety of those who work and study in our schools.’
Chris Keates, General Secretary of the NASUWT – the Teacher’s Union said:
“The NASUWT has long campaigned for the phased removal of asbestos from schools, and the fact that over 70% of schools still contain this lethal substance is unacceptable. Asbestos is a silent killer and its continued presence in schools means that hundreds of thousands of teachers, support staff and our children and young people are at risk of being exposed every single day.
The NASUWT is pleased to host this Conference which will focus not only on the dangers of asbestos but also, in the absence of a coherent removal plan,  how asbestos can be managed to minimise risk to all teachers, support staff and pupils.”
Russell Hobby, NAHT General Secretary, said:
“Asbestos in schools is a serious and often neglected issue, and the Joint Union Asbestos Committee (JUAC) conference will help highlight the dangers to school leaders, teachers and pupils. It is now clear that a national audit of asbestos in schools is needed, leading to a long term strategy for the phased removal of all asbestos. The school estate is chronically underfunded, with the National Audit Office estimating that there is a £6 billion gap in capital investment just to return school buildings to a satisfactory condition. We need a national debate on how this gap can be tackled. Every pupil deserves to be taught in high quality, safe and secure school buildings.”
Unite general secretary Len McCluskey said:
“It is a scandal that the health of our children and teachers is being jeopardised because of the continued presence of asbestos in schools. Government ministers need to act and understand there will always be a danger as long as this silent killer is found where someone could be exposed to it. This conference will not only deepen understanding, but also discuss positive steps for the safe removal of asbestos from our schools and ensure its deadly menace is lifted for future generations.”
UNISON general secretary Dave Prentis said:
“Cuts to budgets have made managing asbestos in schools a great deal more difficult. And forcing schools to become academies has made it harder to know where the responsibility for this deadly hazard really lies.
“This is putting the health of pupils, support staff and teaching assistants, at risk. The only way of eliminating the damage done by asbestos is its phased removal from all schools and public buildings. The Government must rethink its policies not only on asbestos, but on school funding and academies as well.”
Click here to download a copy of the press release.
Contact
John McClean – 07710631329
john.mcclean55@btinternet.com

http://www.juac.org.uk/juac-asbestos-in-schools-conference-4-july-2017/

Lucie Stephens a mesowarrior gave a lovely if very sad story of her Mothers Mesothelioma. She was in tears and so were we all.

Paul Beaumont gave a very inspiring talk and he said how he would like to do Asbestos Awareness and Training Free for the Schools. I know that has been a long plan of his as we have known each other a long time.

I couldn’t believe that my dear friend had come all the way from Italy and he also acted as translator for Maria Angeles Guzzman Merchan who campaigned to have asbestos removed from her Spanish school and others have now followed her.

Cenric Clement Evens also spoke he is another friend I have met with at the House of Commons.

That was it the conference came to a close and everyone shot of home leaving us on our own again.

We had a dinner then went to our room to work.

5/7/2017

Off in a taxi and then train back to New Street and up to Derby. Here we arrived got in a taxi and it felt like we were going to Scotland. The Hilton Hotel is £20.00 away I thought he was never going to stop.

So many people we knew again and if we didn’t we soon became firm Linked in Friends.

http://www.ukata.org.uk/

Craig had booked me for over a year he had such faith I would still be here bless him

Everyone had to changed for the evenings dinner and of to settle for a good sleep as the next day was the AGM and Conference.

The AGM and Asbestos Conference of the UK Asbestos Training Association (UKATA) on Thursday 6 July is now open for non-member registration. An unprecedented level of interest from UKATA members in the 2017 event means places for non-members are already limited.
The event at The Hilton Hotel East Midlands runs from 10.30am – 2.30pm and includes keynote speeches from the complete spectrum of the asbestos sector – from world renowned experts like Professor Roger Willey to the inspirational mesothelioma survivor Mavis Nye.
“The UKATA AGM and Asbestos Conference have heard from many diverse speakers over the years, but the ninth event is shaping up to be our best yet, which accounts for the number of members who have opted to join us this year,” said UKATA Marketing Officer, Victoria Castelluccio. “Professor Willey’s reputation is a big draw but Mavis giving a survivor’s perspective I’m sure will pack a punch.”
Other speakers include Dr Martin Gibson from the Health and Safety Executive (HSE), Harry Steinberg QC and Seamus Lefroy-Brooks. Topics set to be covered by speakers include current regulations and life with Mesothelioma; while a discussion of CAR:SOIL, Asbestos in Soils and Site Investigation will bring delegates up to date on the latest thinking on this emerging topic, while asbestos litigation and what to expect from HSG 247 & 248 will complete the picture of a packed day of education and revelation concerning asbestos awareness, safety, training and personal experience.
“The Grenfell tragedy has pushed health and safety to the top of the agenda and as the UK’s biggest workplace killer, asbestos has a very prominent place on that list,” added Victoria. “There is rightly going to be no hiding place for those failing to comply with regulations and it is therefore no surprise this year’s AGM and Asbestos Conference will be the best attended yet by those working in the world of asbestos and hazardous materials.”
UKATA exists to set and verify standards and to emphasise the importance of best practice in training when it comes to the safe handling, removal and disposal of asbestos. Tasked by the HSE in 2008 for taking-on, managing and developing the list of training providers for licensed asbestos work in the UK, UKATA is now the leading authority in all levels of asbestos training in the UK. For further information on UKATA, visit www.ukata.org.uk
Victoria Castelluccio

I waited patiently for Harry Steinberg to arrive and to give him a Mavis Hug-I did plenty of that over the course of these days away

 

 

 

 

 

So we all settled down and we listened to amazing information.

Ray and I gave our presentations. having allowed Ray to go first he had everyone in tears so I had to work hard at cheering  everyone up.

I clicked away and they all seemed to like what I was talking about. There were some big business men there I was so pleased when they said they agreed with everything I was talking about. Its not easy to put across what my fears are for the men that work in the Asbestos removal industry.

Harry spoke about Law of course and the different cases he has had to Bring to the Court.

The HSE seem to have their figures different to the BLF they say 5000 people have died each year where as BLF say 2500 so I was able to talk to BLF when I got to London and have questioned this.

Asbestos in soil is another thing that I hate and know is a problem.

UKATA Run a good course on the subject This course is for  ‘Supervisors, Managers and CDM Duty Holders’ engaged in work on sites that have been identified as potentially having asbestos containing materials (ACMs) within the soil on site in accordance with the Control of Asbestos Regulations 2012 (CAR).
Purpose
The course will assist delegates to meet their legal obligations by providing them with an explanation of the properties of asbestos and its effects on the health of individuals, the types, uses and the visible manifestation of asbestos in soils and the understanding and interpreting soil reports. The course will also highlight the general procedures that need to be followed in the event of an emergency and how to avoid the risks from ACMs in soil.
Course Objective
To provide delegates with: –
The theoretical skills to undertake work on sites (brownfield and greenfield sites) which have been identified as having asbestos containing materials within the soils; or in which asbestos containing materials have been identified (i.e. from previous construction or demolition operations or previous pipe bursting operations or repairs on asbestos cement water mains in which the ACMs have been left on site).
An understanding of the appropriate action that must be taken in the event of non-notifiable and notifiable asbestos containing materials being identified/recorded within the soil analysis report; and or being identified on site in accordance with the CAR 2012.
An understanding of the emergency procedures that must be implemented in the event of ACMs on site accidentally escaping their control.

Soon that all came to an end and we had to say goodbye and booked a taxi. We had decided to get down to London and booked into a hotel. It was late as we arrived and caught the tube. It was so hot down then I couldn’t think. I went wrong and could see Ray was worn out so suggested we got a taxi. The driver couldn’t find the road and we travelled around that he even turned the clock off.

London has closed down so many roads and you have to ask to travel through then an unseen person lets the bollards down.

I just went straight off to sleep fully clothed and that’s how I woke up.

The weather was lovely as we walked over London Bridge. The scene of that horrific incidence a few weeks ago. Bollards have been put on the bridge now so  it cant happen again.

We hadn’t told LASAG that we were coming so we had shocked everyone. I loved the reaction.


We sat in the Courtyard of Southwark Cathedral enjoying the sun I couldn’t face the service as I would get to emotional and upset myself for the rest of the day

Everyone joined us and The doves were set free in the courtyard as we were then entering the Cathedral and went up stairs to the Conference Room

Linda Reinstein who had travelled all the way from the US to join us in the UK Mesothelioma Action Day  talked about the spy case that we have all been involved in.


 He had been at iMIG and had listened to me that is a frightening thought so I know how IBAS and ADAO must  as they had more to do with him than I did.

Dr Peter Szlosarek  spoke about the latest Trials he was involved in and he gave a huge grin when he came to talk about me and immunotherapy. he always does and I love the cheeky smile.My dear larger than life friend a US Lawyer Brendan Tully spoke about his cases he has fought and Talcum powder. I had really surprised him and he just didn’t know I would be there. It left him saying I just don’t believe this.

After Lunch Philip said I was speaking. all the lawyers had stood down so I could talk about my Foundation. EkkRay had to get my pen that lucky enough I had from UKATA speaking. So I adlibbed through and it went down well again.It was soon all over and we went to the pub and had a much needed drink, where we then said our goodbyes and set off back over the bridge to the Underground. So many steps all the time but we had so many lovely young people help us with our case up the steps.I did have a pick pocket try and get my bag open under his coat. Ray punched his arm away as another young man threw him off the train as we had pulled up at a station. That had everyone talking and laughing we almost missed Victoria.I was so pleased to get on the train and arrive home.What an adventure I have loved every minute.

I would like to thank UKATA and JUAC and All the lovely people we have met you have all made our adventure wonderful xx