A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos. My Birthday Weekend.

This has been a wonderful Bank Holiday.

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It started on Friday when birthday cards started arriving then a lovely Bouquet of flowers arrived from friends and Louis was very interested in them.

 Saturday we travelled to Faversham where we strolled around with my brother and SIL.

faverasham

A lovely old town that I have blogged about so many times.

http://www.instantstreetview.com/@51.315768,0.890801,309.08h,-7.92p,1z

We had lunch and then walked down to a curiosity shop.

The Vintage Tea Rooms

http://www.upstairsdownstairsantiques.com/

The Emporium hosts over 20 established dealers of all things Antique, Vintage and Retro. Housed over two floors in a large Victorian building, originally the old town Gas works. It has stunning  high ceilings and Bullion-ed windows, allowing the light to stream through show casing the multitude of treasures on offer.
Onsite complimenting the Emporium there is a charming vintage tea rooms – Mrs Bridges Vintage Tea Rooms offering homemade scrumptious cakes, pots of tea and freshly ground coffee all served in period china. Vintage tea parties are catered for that special occasion. With so much more on offer.

tea rooms

Then today my Facebook is filled up with wonderful pictures of flowers, cards and good wishes.

I’m so happy to have reached another birthday. I had a surprise phone call from a dear friend.

And other family and friends have also  phoned to say Happy Birthday  so exciting everyone seems to know what a great thing it is to reach another celebration another target. xxx

Our Son and DIL came down so more presents of flowers and cards I have been so spoilt.

We went to the beach at Tankerton to be a holiday maker. I wanted to go to a restaurant for a meal but was out voted as my son said when you go to a beach you must have Fish and Chips in paper looking at the sea.

So we did

IMG_20170827_160114

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IMG_20170827_160104Then and Ice cream that melted straight away.

We came home to a birthday cake

birthday cake 1

Then we had to say goodbye as they left an journeyed home

A wonderful day of Memory making of hugs and kisses I hope they remember for years to come even if we are not around. that they look back onto today to know they made me so happy and proud of them.

That the sadness and worry we have gone through recedes and is replaced by love.

 

 

 

 

 

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Meet me at The Hilton Canary Wharf Sept 25-26th 2017 #Asbestos #Mesothelioma

EAF advert

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.

That is the info from the Web Page but it doesn’t explain the wonderful atmosphere that greets you. It was a conference filled up with Information from very interesting speakers.

 

For the 2016 event Ray and I flew to Amsterdam  and we met up with old friends and  made so many new friends. So I’m really looking to meet so many old friends and make so many new friends again.

So I look to enjoying this full program this year.

Program 2017 ‘Asbestos & Industry’ – 25 & 26 September 2017, Hilton Canary Wharf Hotel, London

On Monday 25 September 2017, the EAF conference will host ’round table’ workshops in which participants will meet many speakers face to face and freely discuss in-depth on a wide variety of asbestos related topics. This has proven to be the ideal formula for meeting relevant specialists, exchanging knowledge and building up lasting networks.
A delicious buffet lunch is included and will be open from 12:30 to 13:30 hours, after which the workshops will go on until 16:30 hours.
On Tuesday 26 September 2017, the EAF Conference will take place, concluded by an optional conference dinner. Please note that speakers and presentations may be subject to change. See below for further details.

08.45 – 09.20
Registration and light continental breakfast
09.20 – 09.30
Welcome by Yvonne Waterman (EAF Foundation)
Introduction of the Conference Chairman, Hans van der Wart (KIWA Compliance International), and Session Chairmen Mark Winter (Beacon International) and Ron Symonds (Royal Mail Group)

Plenary Session
09.30 – 10.00
Opening Speech, by Dr. Penny Woods (British Lung Foundation)
10.00 – 10.20
Are Frameworks killing quality? Neil Redfern (Shield On-site Services)
10.20 – 10.45
A Mesowarrior’s Journey, Mavis Nye BCAh (Mavis Nye Foundation)
10.45 – 11.00
Break and refreshments
11.00 – 11.30
Shaken and stirred: asbestos response after natural disasters, Terry Coleman (Coleman Consulting Ltd New Zealand and Pacifica Environmental Ltd Fiji)
11.30 – 12.00
Keynote Speech: Role of a Trade Association in the Asbestos Removal Industry, Stephen Sadley (ARCA)
12.00 – 13.00
Buffet lunch

Exhibitor stands and a photo exhibition by Tony Rich (Asbestorama)
Session A
Asbestos and its impact on society
13.00 – 13.20
Asbestos and its effect on English society, Harry Steinberg QC (12 King’s Bench Walk)
13.20 – 13.40
Challenges for insurers regarding asbestos in industry, Christian Lahnstein (Rachel Carson Center, University of Munich)
13.40 – 14.00
Raising asbestos awareness in the workplace, Graham Warren (TICA-ACAD)
14.00 – 14.20
Real risk versus perceived risk, prof. Roger J. Willey (UKATA)
14.20 – 14.40
Break and refreshments
14.40 – 15.00
Building national consensus around asbestos management – the Australian experience, Geoff Fary (former Chairman of the Australian Asbestos Safety and Eradication Council
15.00 – 15.20
The Portuguese approach to asbestos in industry, Ana Nogueira (Portuguese Dep. de Saude Ambiental, Unidade de Ar e Saude Ocupational)
15.20 – 15.40
New developments in the treatment of Malignant Mesothelioma, prof. Nico van Zandwijk (former Director of the Asbestos Diseases Research Institute)
15.40 – 16.20
Panel debate
16.20 – 16.35
Break
Session B
Asbestos & Professional perspectives
13.00 – 13.20
Complex projects for a simple product, Hein Tersteeg (Asis-t, active for ExxonMobil Rotterdam)
13.20 – 13.40
Removing asbestos in a nuclear environment, Mark Winter (Beacon International)
13.40 – 14.00
The Global Game Changer, Marcus Sanders (ARI Global Technologies)
14.00 – 14.20
Compliance in industry, Dr. Martin Gibson (HSE)
14.20 – 14.40
Break and refreshments
14.40 – 15.00
Asbestos in real estate: a risky investment? Arjan Endhoven (BDO)
15.00 – 15.20
Putting asbestos policy into practice at a major airport, Jeroen Kersten (Sodexo)
15.20 – 15.40
The global asbestos industry and the worldwide pursuit of justice, Brendan J. Tully (Phillips & Paolicelli LLP)
15.40 – 16.20
Panel debate
16.20 – 16.35
Break and refreshments

Plenary session in the Grand Ballroom
16.35 – 16.40
Special Recognition Award
16.40 – 16.45
Concluding speech, Yvonne Waterman and Hans van der Wart (Kiwa Compliance International)
16.45 – 18.00
Convivial closing drinks for networking
18.00 – 21.00
Optionally: Conference Dinner

This is the link to the Speakers

http://www.europeanasbestosforum.org/speakers-2017/

So if you are Going to the Contamination Expo and here are free tickets — Additionally, visitors to the EAF conference will receive free tickets for the nearby
Contamination Expo, 27-28 September 2017. We can highly recommend this combination.
See http://contaminationexpo.com. 

contamination 123

Book in earlier and enjoy 2 great Events lets finish off 2017 with a bang

FireworksSM

together

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – UKATA have sent my Banner to me.

ukata agm

When I attended to the UKATA AGM in July and had such a fun time, there was a discussion about our camera, as it wouldnt do High Definition, so they kindly took some for us. I had wanted to do this,as we wanted to have a banner for Our Foundation.

We received these photos a few weeks later with the offer to choose what we would like on a banner and UKATA would like to donate to us a full banner.

Such kindness has meant that today we have received in the post a truly great present of a banner.

Wow! what a lovely thing to do and we are very grateful for such a wonderful kind thought.

DSC00504

Even Louis had to get in the picture to say a big thank you.

We are very grateful to the UKATA Team.

Ukata 3

Thank you Gill, Victoria and Craig I just love it and I know the Mesowarriors will too.

I’m now looking forward to Speaking At the Hilton where I will have this banner behind me, exciting!!

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.

EAF advert

http://www.europeanasbestosforum.org/

Then the Contamination Expo 2017

 The Land Remediation Expo is the UK’s largest event designed to showcase the latest innovations that further the diagnosis, management and remediation of contaminated land

Here I will be on the Shield Environmental Stand to meet and greet With Craig Dennis and Harriet Reed. At 2.45pm Thursday Theatre 12  it will be my turn to speak. A very exciting week. I have my presentation all ready and waiting.

contamination 123

Here I will be on the Shield Environmental Stand to meet and greet With Craig Dennis and Harriet Reed. At 2.45pm Thursday Theatre 12  it will be my turn to speak. A very exciting week. I have my presentation all ready and waiting.

Sheild’s Vision is:
To ensure that quality, efficiency and innovation are at the forefront of all our operations; and to provide added value whenever possible for our clients.
To be a market leader within all the sectors in which we work.
To grow organically through reputation and recommendations, while continuing to provide superior customer service.
To continue to build long-term relationships and partnering agreements through frameworks and repeat business
To integrate services within the business which enhance our service offering
Our Strategy is:

To ensure that all our staff have unparalleled technical knowledge and competency, to enable them to carry out critical work functions.
To ensure that we offer exceptional customer service, and that this is consistent throughout all areas of operation.
To build long-term relationships by ensuring excellent communication with clients. We shall monitor our performance through regular review meetings, and measure both individual and team performance.
To provide additional services and diversify into other sectors
that complement our existing service provisions.

sheild logo

 

http://www.landremediationexpo.com/speakers/#PageHeading

A Diary Of A Mesowarrior Living With #Mesothelioma, Today I have been reading the History of Banned Asbestos in the UK

laurie-11

I have become interested in the history of banning Asbestos and the struggle so many have had through the years to make Governments listen to a plea that Asbestos causes Mesothelioma and other nasty cruel diseases and how the US can ensure their Government listen.
In my search I came across several writings of Laurie Kazan-Allen. We became friends when I was diagnosed 2009 with the dreadful outcome of my contamination through washing Rays clothes. To be honest I can’t remember the day we met I believe it was at the Mesothelioma UK Patient and Carers Conference in London. 2010 as she pops up at different meetings and conferences I go to. I do remember that through her was how I got to get my foot into the Houses Of Parliament. I was in awe of her by then as I watched how she spoke like a Union Leader. So knowledgeable and determined that she was listened to.
Asbestos in Schools and the Debate we had with British Lung Foundation over the Coalition of Mesothelioma Research and the secured generous gift of £5 million from the Victor Dahdaleh Foundation to support ground-breaking research into the disease, matching government funding that was announced earlier this year.
We have shared exciting times.
When it comes to banning Asbestos Laurie was there fighting the issues.
She has written
The UK’s asbestos century ended on August 24, 1999, one month after the European Union (EU) banned chrysotile. The Asbestos (Prohibitions) (Amendment) Regulations 1999, signed by Deputy Prime Minister Prescott, came into force on November 24, 1999 five years ahead of the European deadline. Chrysotile had been the only type of asbestos permitted in the UK since amosite and crocidolite were banned in 1985. Statutory Instrument No. 2373 forbids the import of crude fiber, flake, powder or waste chrysotile and the new use of asbestos cement, boards, panels, tiles and other products. Chrysotile-containing products installed prior to November 24, 1999 can remain in place until they reach the end of their service life. The sale of second-hand asbestos cement products and building materials covered with asbestos-containing coatings is forbidden. Two pages of time-limited derogations apply to specialist items such as “diaphragms in electrolytic cells in existing electrolysis plants for chloralkali manufacture,” and “split face seals of at least 150 millimetres in diameter used to prevent leakage of water from hydro-electric power generation turbines…” The residual problem of brake linings was dealt with in a complementary piece of national legislation that implemented European Commission Directive 98/12/EC. Laid under the Consumer Protection Act, the Road Vehicles (Brake Linings Safety) Regulations 1999 prohibited “the supply, exposure for supply or fitting to a motor vehicle or trailer of brake linings containing asbestos” as of October 1, 1999.
While the chrysotile prohibitions were expected, their arrival during the dog days of the Summer parliamentary recess was surprising. Perhaps Ministers believed vacationing representatives of the asbestos industry and producer governments would remain unaware of the new legislation. The low-key announcement was understandable in light of the industry’s increasingly desperate attempts to counter growing anti-asbestos sentiment. Diplomatic threats and sabre-rattling had delayed UK legislation for two years. When Labour first came to power, Prime Minister Blair expressed his determination to “deal effectively with the problems of asbestos.” Environment Minister Angela Eagle told the House of Commons that “a mechanism for introducing a domestic ban on the import, supply and use of asbestos” was being investigated. In the weeks and months that followed, it became clear that more cautionary counsels had prevailed. A year after her first statement, Eagle commented: “Any decision by the UK Government to proceed with further restrictions on the importation, supply and use of chrysotile will be based on robust scientific evidence, thereby fulfilling obligations under World Trade Agreements.” The reason for the deceleration was simple: on May 28, 1998 the Government of Canada lodged a request with the World Trade Organization (WTO) for consultations with the European Commission “concerning certain measures taken by France for the prohibition of asbestos and products containing asbestos.” Should the UK follow the French lead, it might well receive similar attention. A decision was taken to adopt a more circuitous strategy: a UK ban would be pursued under the protective cover of European mobilization. Health and Safety Executive (HSE) personnel worked closely with their counterparts at Directorate General (DG) III of the European Commission. In 1997, a senior HSE official had been seconded to DGIII to work on the draft legislation. In response to an EU appeal for information, the HSE commissioned a report entitled Chrysotile and Its Substitutes: A Critical Evaluation for submission to the Scientific Committee on Toxicity, Ecotoxicity and the Environment. Statements by government spokesmen emphasized the importance of the HSE’s input into the consultation and decision-making process. Sir Frank Davies, Chairman of the Health and Safety Commission, said: “We have worked long and hard to secure a ban for the good of Europe as a whole, taking a leading role in helping to establish a solid scientific foundation for it.” John Prescott believes that the UK “played a leading role in securing sound science around the safety of alternatives, without which there most probably would have been no ban.”
Sources : http://ibasecretariat.org/lka_uk_ban.php
Commemorative 100th Edition of British Asbestos newsletter! I was proud to have a article written in the Newsletter that was published. I was in the House of Lords when it was presented.
The 100th Issue of the British Asbestos Newsletter, which has become a feature of the global campaign to end the use of asbestos, has just been published. The Commemorative Edition is representative of the breadth of asbestos politics. There are articles on developments in the treatment and nursing of mesothelioma patients, Parliamentary initiatives to achieve just compensation, the histories of social movements such as The Forum and SPAID, legal initiatives in Scotland, the continuing threat posed by asbestos in schools, the on-going struggles to have asbestos banned under the Rotterdam Convention, estimates of the future toll of asbestos deaths, and the industry use of art to promote its products. There are stories of individuals, social movements and regional communities.
A Review: British Asbestos Newsletter Spring 2016 by Jock McCulloch, RMIT University, Melbourne, Australia
The 100th Issue of the British Asbestos Newsletter, which has become a feature of the global campaign to end the use of asbestos, has just been published. The Commemorative Edition is representative of the breadth of asbestos politics. There are articles on developments in the treatment and nursing of mesothelioma patients, Parliamentary initiatives to achieve just compensation, the histories of social movements such as The Forum and SPAID, legal initiatives in Scotland, the continuing threat posed by asbestos in schools, the on-going struggles to have asbestos banned under the Rotterdam Convention, estimates of the future toll of asbestos deaths, and the industry use of art to promote its products. There are stories of individuals, social movements and regional communities.
It is difficult to date the origins of the struggle against asbestos since it has been fought globally for more than fifty years on many fronts in so many national settings. The Asbestos wars have been unusual as they have been a forum in which lying by corporations, regulatory authorities, medical specialists and research scientists has been common.
Access to information has been the key to the continued use of chrysotile and from the 1930s the industry in the US, the UK and elsewhere sought to capture and re-frame knowledge of risk using a variety of techniques. The industry suppressed or hid evidence of a hazard initially among miners and factory workers and later among those with bystander exposure. It has manufactured doubt by falsely claiming there has been insufficient evidence to justify a ban and finally it has systematically corrupted the relevant science. Like big tobacco, the asbestos industry has fought ruthlessly to keep its products in the market place despite overwhelming evidence of the damage to public health. Like tobacco, the asbestos industry has been successful in shifting its costs onto individuals, publics and states. If all the externalized health, economic and social costs of asbestos mining and manufacture generated by Johns Manville, James Hardie, Turner & Newall, Eternit and Cape Plc were included in their balance sheets, those companies would have made little or no profit.
No industry has been more polarizing than asbestos. It has seen senior executives fail to act on knowledge of risk, company doctors ignore injuries to employees, scientists produce false data for financial gain or to further their careers, regulatory authorities side with employers, insurance companies refuse to honour policies, courts favour the powerful, and journalists believe the lies they have been told. On the other side are company doctors who have stood up bravely for their patients and lost their careers, state officials who have fought hard to reduce risk in the workplace, lawyers who at great personal cost have taken on cases which they had little hope of winning, and journalists who have exposed the mendacity of senior management and the failure of state authorities to regulate a hazardous industry. The one constant has been the heroism of individuals, community activists and trade unionists in confronting powerful corporations. For twenty years the Newsletter has provided those actors with a forum.
We know that by 1956 the three principal asbestos diseases had been identified and were well understood by the major mining and manufacturing companies in the US, the UK and Western Europe. Today, more than sixty years later, around two million tons of chrysotile will be mined and consumed in the developing world. In the OECD states, while large numbers of men and women exposed before the banning of the magic mineral, will die from asbestos induced disease. So what has the BAN achieved? The Newsletter has been an important forum for discussion and a reliable source of information for social movements, carers, medical researchers, lawyers, journalists, health professionals, historians, and trade unionists. Importantly, it has also helped to bring together the disparate groups which make up the ban asbestos front
There are two ways to view the current use of asbestos. The first is frustration that a global ban still has not been achieved. The alternative is to acknowledge that without the hard work and courage of small groups who have been so well represented by BAN, asbestos would no doubt still be sold in OECD states. For this reason alone, it is time to celebrate the Commemorative Edition of the British Asbestos Newsletter.
July 9 2016 http://ibasecretariat.org/jm-revue-british-asbestos-newsletter-100th-issue.php
http://tinyurl.com/hfoypkd
Laurie carries on her worldly fight with Asbestos Japan, Brazil, India Canada. Wherever there is a need to Ban, she is there beside so many others struggling to make our world safe
In 1931, the United Kingdom introduced the first asbestos regulations to control this toxic cancer causing mineral. In 1999, sixty-eight years after that first regulation, the UK officially prohibited all use of asbestos. This happened just 16 years after Iceland became the first country to issue a complete ban on the deadly mineral.
Since then, more than 50 countries have issued either comprehensive or partial bans on asbestos. Some countries, like the United States, still allow for the toxic mineral to be used under certain circumstances or in limited proportions. Why would a country allow this toxic mineral’s use to continue when it has been clearly linked to life threatening diseases such as mesothelioma? In 2014 alone, mesothelioma was the cause of death for 2,567 citizens in the United Kingdom. Are the benefits of using asbestos worth the loss of so many lives? What are the factors preventing a universal ban of its production and use?
Pro-Asbestos Lobbying Groups
There are groups that heavily promote the use of asbestos to political leaders in developed countries. They spend millions of dollars doing so and are known to use all sorts of deceptive tactics to promote their own interests. Often these groups have economic ties to companies, industries and even countries that produce and/or use asbestos.Their websites may actively promote the idea that asbestos can still be used in ways that will not harm humans. This position is not accepted by most health authorities.
Low Mesothelioma Rates in Underdeveloped Countries
Some research shows that countries with no bans on asbestos tend to have lower mesothelioma death rates than countries with asbestos bans. This anti-intuitive conclusion is due to the fact that many countries with no ban on asbestos typically don’t have well-developed health-related infrastructures. Therefore, capturing disease rates and causes of death is often less than perfect.
It’s a Cheap and Effective Building Material
Asbestos is not expensive and with its ability to be woven, anti-corrosive, and fire resistant, it can increase the profitability for companies that produce and use asbestos, resulting in more money for a country. When you take a country like Russia, which produces over 600 thousand metric tons of asbestos annually, it can result in an immediate financial loss if you were to ban the mineral. While the immediate profits can never outweigh the cost of lives lost from asbestos-related diseases, they can blind those in power and prevent laws to prohibit asbestos.
In Conclusion
As long as asbestos is mined, sold, and used in any country, it is a threat to people world-wide. The World Health Organization strongly believes that the most efficient way to eliminate asbestos-related diseases is to stop the use of all types of asbestos. The WHO plans to continue educating countries on why there needs to be a comprehensive ban on this toxic mineral so that we can make our world a better and safer place for our children.
https://bainbridgeelearning.co.uk/countries-will-not-ban-asbestos/

 

A Diary Of A Mesowarrior #Mesothelioma #Asbestos LASAG Meeting, Scan Results, and Talking with Shield Environmental Services.

sg3

Yesterday we travelled to Canterbury to a LASAG Meeting. We were early as usual but we meet up with the smiling trio and caught up on news as the others all started to arrive.

It is a happy bunch and there were new people joining. In.

We had a really interesting talk from  A Dietician and talked about loosing our appetite’s mainly when having Chemo. I learnt a lot, and tasted the milk drinks they give to you when you can’t eat. They were very nice.

So a good afternoon with lots of discussion these meetings are going to be interesting.

This morning was an early start and a drive to the Marsden for scan results.

A nervy time as you could come home very happy but also very sad depending on results. But after a blood test then a wait until I was called into the examination  room and in came a lovely Oriental doctor.

I haven’t seen him before but now only going every 2 months that is what it is like.

He said that the scan was still the same no change and he said that they are finding when it works it is working for a long time.

I asked about my high potassium but the blood result wasn’t good it had hemobolised  He didn’t seem worried so we said our goodbyes I made appointment for 2 months time and came home.

NCCNGuidelines-720x437

The National Comprehensive Cancer Network® (NCCN®) recently updated their treatment guidelines for malignant pleural mesothelioma.
The NCCN, a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives.
Their mesothelioma treatment guide book, which was published in collaboration with the Mesothelioma Applied Research Foundation, will in the future include pembrolizumab and nivolumab +/- ipilimumab as options for “subsequent systemic treatment.”
Dr. James Stevenson, an oncologist at the Cleveland Clinic, and a member of the Meso Foundation’s Science Advisory Board, is a member of the review panel of the NCCN.
“I was happy to see that these have been added as options given the data that have been presented to date. The drugs are clearly active in meso and unfortunately there are not going to be randomized data forthcoming in the second or third-line setting with these agents. In addition, we know that there are no significantly effective treatments after front-line pem/platinum (also known as Alimta/cisplatin),” said Dr. Stevenson.
On the heels of a lively debate about off-label treatment at the International Symposium on Malignant Mesothelioma  this year, Dr. Stevenson believes that patients need to be able to access these drugs at some point in their treatment.
“Yes, the main goal is to get these patients on clinical trials but I don’t want somebody to miss out on a chance at life-changing treatment if they can’t get on a study either,” he said.

http://blog.curemeso.org/mesothelioma-treatment-guidelines-updated-include-agents/ 

SEMINAR-13340

Mavis Nye Foundation in association with Shield Environmental Services
The story of living with Mesothelioma….

I will be speaking at the Contamination Expo And I will also be on the Shield Environmental Stand Meeting and Greeting so please come and say hello. I will walk around the Exhibition as I want to meet IATP, UKATA and many more.

I’m now in the Contamination Expo 2017 Brochure

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos -No Op For Ray? MNF Has A Donation Button, Trials Are Going Well

angry

This was Ray yesterday

he was already for his Cataract Operation.

We had to wait around so we had lunch at 12 as his op was 2pm. Just a small sandwich as he is diabetic and he has to eat at midday.

Off we went and I saw him into the Medical Centre,  but I went shopping near by and was enjoying myself looking at things. I wasn’t in a rush as Ray wouldn’t be ready for 2 hours.

I strolled out and walked to the steps and there was Ray down there waiting for me.

Why???

He said I am SOOO Frigging Angry
10 minutes and 6 lots of drops away from the trolley and they cancelled my op. My Sugar levels are high.

18 pigging months I’ve waited for this Ive stressed out all bloody week now and they cancel again. I am afraid I showed my anger and disgust in surgery. I suppose another 18 months to wait again.

I said walk around get the sugar down and then go back. “Just don’t talk to me”  came the reply.

Oh dear –He is so angry he hasn’t come off the ceiling.  It says in his paperwork he can eat normal, when we came home and looked it up on the net the advice is not to eat 2 hours or even longer.

An email of complaint has gone to the GP as really being diabetic they should do it in the morning. he is not happy, lets hope the GP listens. That dam sandwich I feel so guilty that I made it now as it is carbs isn’t it.

He had turned down his back op for today because he was having his eye done he isn’t having a lot of luck.

The car passed her MOT and they serviced and washed her lovely so that is something I suppose.

We took Louis out and had a lovely walk in the Park so ray calmed down Peace is reigning in the house again.

One good thing is we have our Donation button working for the Charity and people are using that. thank you so much I love the support

http://www.mavisnyefoundation.com/to-make-a-donation.html

Angela has a fund-raiser going on our Face Book site —

The next fundraising is called
The MesoWarriors UK £1 Trail
Donate a £1 min and pm me and we can get the UK map coloured in with your names on. Let’s see how long we can make this £1 trail xxx

We have lots of plans to raise the funding for the MNF. Some wonderful people are helping out and the money goes up slowly but surely. We have Grants to pay out 2018.

Well Monday is Scan day again but lucky the wait will be short as I go back for the results on Wednesday.

There are so many Mesowarriors on trials so many different trials as well. The groups are very busy as they have all joined in and discuss these trial.

My how the treatment has changed this year. We have hope. It is a wonderful thing to have hope and we push the boundaries so we all laugh at the 3/6 months we get at diagnosis.

Even Operations are having great results. Eric Lim and David Waller are really doing well with patients filling up the mars Trial.

https://www.linkedin.com/pulse/uk-nihr-hta-funds-mars-2-trial-surgery-mesothelioma-eric-lim?

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We have many Mesowarriors enter the trial and their recovery is very good. They get the pain under control very quickly and return home in a good time.

People are in the Confirm trial  (Dean fennel) and the Promise opens in the next couple of weeks. (Riyaz Shah.) There are several small trials as well. 2017 has been a good year bring on 2018 so much is just around the corner.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Rain, Writing Speeches and booking up more Speeches.

rain 3

Yep this is our summer. We have had such heavy rain at times that we have had to dive out when it stops and get the dog walk in.

We have met the man who does the dog walking here in Whitstable. He collects them all up and then walks them in the park with us. They were a rowdy lot this week and the poor man has really had a barking week.

I have been so busy everyday so many Emails for dates for the diary. We have had a nice quiet month and now the speeches are poring in.

Kent Radio phoned for me to be interviewed on Tuesday morning. A poor man has mesothelioma and is very bad so they are interviewing him and then I have to tell part of my story. So it is raising awareness of the disease .

Then I had emails and have been asked to talk at the Contamination Expo 2017. I was going anyway but to be able to talk there is exciting.

http://www.contaminationexpo.com/

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We have a date at the Hilton first.

EAF advert

I fit this in first

https://www.industrialdiseaselawyers.co.uk/news/annual-mesothelioma-study-day/?platform=hootsuite

Each year Boyes Turner host an annual study day in Reading for the purposes of providing useful updates to medical professionals, care assistants and others involved in the management of mesothelioma patients.meso-study-day-2017-300x230

So I have also been writing speeches and putting the presentation together. The Power point is ready and I’m happy with it all.

The Foundation is coming along and at last with a bank account working well we ae putting Donations in but the just giving has been a pain. Everything is so slow and we want to work fast.

Bike Rides are filling up and we are missing out. but I have a few entering next years Prudential Ride London event. Team Mavis sounds so weird doesn’t it.

https://www.prudentialridelondon.co.uk/events/100/

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On Monday night we had an event that raised money for MNF

POWER! Launch night raising funds for The Mavis Nye Foundation — attending Power! Launch Night Featuring Temple Lake, Luca + Malla at The Monarch.

power

The bucket filled up which is s very kind.

The car went in for its MOT and pass so that’s great.

Its been a funny week as we wait for Saturday and Ray is having his eye operation.

The Cataracts  are going to be done at last

Cataracts occur when changes in the lens of the eye cause it to become less transparent (clear). This results in cloudy or misty vision.
The lens is the crystalline structure that sits just behind your pupil (the black circle in the centre of your eye).
When light enters your eye, it passes through the cornea (the transparent layer of tissue at the front of the eye) and the lens, which focuses it on the light-sensitive layer of cells at the back of your eye (the retina).
Cataracts sometimes start to develop in a person’s lens as they get older, stopping some of the light from reaching the back of the eye.
Over time, cataracts become worse and start to affect vision. Eventually, surgery will be needed to remove and replace the affected lens.

So w are going to have fun as he can’t bend down and has to take it easy.