A Diary Of A #Mesowarrior Living With #Mesothelioma#asbestos — Im back on the Conference Circuit doing what I do best –Talking !!

We have had an Interesting week. The asked us to talk via Teams on Thursday, So many people were on the call from around the world that we were nervous. We needn’t have been they loved our presentation as we learnt from the feed back afterwards. The patient is being listened to nowadays, our voices are making a difference to their understanding.

Synteract wrote –Just grabbed a tissue while listening to this morning’s Oncology Journal Club featuring guest speaker, Mavis Nye Dr (hon) BEM. BCAh and her husband, Ray, of the Mavis Nye Foundation.When we’re sitting at our desks day to day, we’re so focused on what’s in front of us. Today’s session was a wonderful reminder that each patient and carer we’re involved with comes with their own unique story, and it was a privilege to hear Mavis and Ray’s love story and their #mesothelioma and #ClinicalTrials journey.Just grabbed a tissue while listening to this morning’s Oncology Journal Club featuring guest speaker, Mavis Nye Dr (hon) BEM. BCAh and her husband, Ray, of the Mavis Nye Foundation.When we’re sitting at our desks day to day, we’re so focused on what’s in front of us. Today’s session was a wonderful reminder that each patient and carer we’re involved with comes with their own unique story, and it was a privilege to hear Mavis and Ray’s love story and their #mesothelioma and #ClinicalTrials journey. —–

Oh how lovely. We did enjoy ourselves after the technical glitch disappeared. So many great questions were asked, its good to have such interaction. ——–

Image

https://web.cvent.com/event/9c0b6ffb-7957-4e64-9d2a-d58be320cd61/websitePage:645d57e4-75eb-4769-b2c0-f201a0bfc6ce?fbclid=IwAR1nUFYQiyhySvcz5vDVTpRoP0dhN1I4JjROJOGXGj_2fCAH2VDJTuSpRnU

Then on Friday and Sat I sat for hours on the computer for the ADAO Conference.

Every year Linda asks me to be the International voice of the mesowarriors and every year I have made recordings and they have gone disastrously wrong. So this year I was determined it would would be spot on. and I feel it did go well.

I will post a recording when ADAO publish.

On Friday The film festival was spot on. It was a very emotional program but I enjoyed every moment.

https://www.imdb.com/title/tt3582968/

The event will include:  “The Mother” by Paolo Monico, “Breathless” by Daniel Lambo, “Dirty Laundry” by Conor B. Lewis and Zack Johnson, and ADAO’s 16th Congressional Staff Briefing, “Impact of Asbestos on Public Health, Environment, and Economy,” with Brad Black, MD; Barry Castleman, ScD; Raja Flores, MD; Arthur L. Frank, MD, PhD; Brent Kynoch, Environmental Information Association; Richard Lemen, PhD, MSPH; Celeste Monforton, DrPH, MPH, American Public Health Association; Linda Reinstein, Asbestos Disease Awareness Organization; Greg Russell, International Association of Fire Fighters; and Robert Sussman.

“The Mother” by Paolo Monico

  • When a hardened widow receives an unexpected visit, she is given the chance to shed light on her husband’s death. Starring Mary Testa, Boris McGiver, Michele Hicks and Sylvia Kauders.
  • https://www.youtube.com/watch?v=FC3g2Ky4xbM&t=1s breathless

“Breathless” by Daniel Lambo 

  • Following the deaths of his father and many others from his village, filmmaker Daniel Lambo sets off on a passionate quest to find the truth about the deadly asbestos industry. His search takes him to the largest asbestos waste dump in India and unveils a cold-blooded industry still endangering the lives of workers and consumers around the world. A gripping story on the fight of individuals against a booming asbestos industry.

“Dirty Laundry” by Conor B. Lewis and Zack Johnson 

  • Two cousins journey across the United States by bicycle, fueled by a curiosity about their elderly grandmother’s sudden passing from a rare cancer, mesothelioma, and uncover a trail of broken families bound by asbestos.

Then Saturday was the Conference where so many spoke and told their stories

The speakers were

Linda Reinstein, Opening Remarks9:00 AM-9:10 AM ETWarrior

Message of Support by Mavis Nye (UK)9:10 AM-9:20 AM 

ETSession I: Progress and Challenges from the Frontline

9:20 AM-10:20 AM ETSession II: Medical Advancements: Diagnosing and Treating Mesothelioma and Asbestos-Related Diseases

10:30 AM-11:40 AM ETIntroduction: Celeste Monforton, DrPH, MPH

11:45 AM-11:50 AM ETKeynote Speech: Rebecca L. Reindel, MS, MPH, Safety and Health Director, AFL-CIO

11:50 AM-12:30 PM ETSession III: Prevention: What Is It? Where Is It? What Do I Do?

12:30 PM-1:40 PM ETIntroduction: Kathy Best, Howard Center for Investigative Journalism, University of Maryland

1:45 PM-1:50 PM ETAndrew Schneider Memorial Lecturer: Wendy Ruderman, Journalist1

:50 PM-2:30 PM ETSession IV: Advocacy: Global Ban Asbestos Action

2:30 PM-3:50 PM ET

Linda Reinstein, Closing Remarks

3:50 PM-4:00 PM ETSATURDAY SEPTEMBER 18, 2021: AWARDS AND RECOGNITION CEREMONYVirtual Awards and Recognition Ceremony

4:30 PM-5:30 PM ETSponsorship Recognition

A good Conference under difficult situation of COVID

Then also last week I had 2 articles printed in The Asbestos Hub Magazine so all in all it has been a great week.

Top Ten Industries at Risk from Asbestos Exposure Even today #asbestos #mesothelioma

Top 10 Industries at Risk for Asbestos Exposure

There are some industries that also risk asbestos exposure and are not commonly thought about when it comes to asbestos. While the exposure is not as high as in some industries, the exposure is still significant enough to cause health concerns and even mesothelioma deaths. The use of asbestos, unfortunately, has reached a variety of different industries that are still prominent today. Below are industries and jobs that have some exposure to asbestos over the years and should be assessed by an asbestos litigation specialist right away.

  1. Construction: Asbestos was widely used in many aspects of the construction process. Employees working with insulation or pipe fitting are most at risk, including drywall installers, electricians, insulators, plumbers, pipefitters, boilermakers, and brick masons.
  2. Firefighter: Though it is an incredible fire-retardant material, asbestos can become airborne as the surrounding materials burn. Firefighters often charge into older buildings containing an array of dangerous materials and compounds. 
  3. Auto mechanics: Asbestos has been used in brake linings, gaskets, and clutches for decades. Because mechanics cannot tell if a part contains asbestos by looking at it, anyone working on cars should proceed with the assumption that it does.
  4. Railroad: Railroad workers are still commonly being diagnosed with mesothelioma after being exposed to asbestos through insulation materials on pipes, brakes, boilers, and gaskets.
  5. Shipbuilding: Workers from U.S. shipyards have experienced an abnormally high amount of mesothelioma cases after exposure to asbestos from 1950-64. Shipyard jobs that exposed workers to asbestos included machinists, pipefitters, electricians, boilermakers, and painters.
  6. Farming: With the extensive use of farming equipment operations and maintenance over the years, the use of asbestos has shown up as an issue for many farmers, including dairy and poultry farmers who need certain equipment to raise and harvest the produce from their animals. More animal harvesting farmers have had more exposure while crop farmers’ exposure has been limited only to farm equipment maintenance periodically. At the time of asbestos being used in farming, there were between 2 and 3 million farmers across the country working and using equipment that was lined with asbestos regularly. Unfortunately, this exposure could have also been transferred second hand through the home with dust from the equipment on clothing. 
  7. HVAC Technicians: While new systems do not use asbestos, HVAC technicians who have performed services on old systems and entered older homes where asbestos was used in insulation have risked exposure. Depending on how long they have been in the industry and how many homes they have entered over the course of their career. Those who have been in the industry for over ten years have probably experienced much more exposure to asbestos due to the age of the homes. Newer homes would not have the risk that older ones do with asbestos, reducing current exposure to HVAC technicians significantly. Older homes in most cases have updated their homes and removed the asbestos, but in some places, this was only a recommendation as opposed to a requirement. 
  8. Hairdressers: Over the last couple of decades, hairdressers and beauticians have risked exposure to asbestos through the use of hairdryers and other hair items used frequently. Old equipment made at least in the late 1970s, asbestos from the equipment is released into the air in the environment. While customer exposure is limited, a constant release of asbestos into the air can cause health concerns and risks to the hairdressers who have been using this equipment daily and for years on end. While it may be rare to find equipment today with this asbestos, there could be some hairdryers in some home salons left with asbestos in them. Beauticians that have been in the industry for several decades have a higher risk rate than others and should be aware of the potential exposure.
  9. Factory Workers: Working in plants and textile factories in the 1970s, 1980s, and 1990s is an industry where asbestos was used frequently in the machines, releasing toxins into the air. Those who worked on these machines daily in this environment, consistently breathing in these toxins from the asbestos have increased exposure to asbestos. Even when the machines they were using were serviced for maintenance and upgrades, the use of asbestos was prevalent all the way through the 1990s. Asbestos could have even been linked in the safety uniforms and gloves that were used to handle these machines while working. Depending on how long each person worked in that environment and how much they used could be more damaging than others. 
  10. Healthcare Workers: Through the 1970s and even part of the 1980s, some of the hospital equipment used asbestos for its practicality, since it was able to withstand extreme temperatures. In an area where temperatures can change significantly from one environment to the other, that was essential for earlier models of equipment. Those using the equipment such as healthcare workers may have experienced exposure to asbestos. Depending on the type of equipment and the frequency of use, the exposure can vary. 

Cooney & Conway, LLP. https://www.cooneyconway.com/

A Diary Of A #Mesowarrior living with #Mesothelioma. #asbestos — My 80th birthday where have the years gone

Happy Birthday and it was a happy birthday. My 80th. How does your life slip away so fast and yet I have lived 80years.

A war baby 1941 where doodle bugs, Airaid shelters where to be my world and yet I survived and lived for so long.

Happy times, said time, and illness but its been a good life so it was great to celebrate in such away with my wonderful neighbours and friends brother and Son who surprised me and came down to sing and be the entertainment at a party given by my Friends Dawn and Martin who live next door but one.

The weather was perfect everything was just perfect.

Lots of photos taken so Im sharing those.

https://www.mavisnyefoundation.com/my-donate-page.html

A diary of a #Mesowarrior living with #Mesothelioma A proud Day as my story goes into the Science Museums #asbestos

A proud day – Alongside an article and My DNA published by the Royal Marsden will be on show in Section 3 when its opened DATE: 22 October 2021 – March 2022 Following its run in Manchester, Cancer Revolution: Science, innovation and hope will tour to the Science Museum in London in 2022. https://www.scienceandindustrymuseum.org.uk/whats-on/cancer-revolution

CANCER REVOLUTION: SCIENCE, INNOVATION AND HOPE

This October, explore the revolution in science that is transforming cancer care with a major new free exhibition, Cancer Revolution: Science, innovation and hope.

Created by the Science Museum Group with support from expert partner Cancer Research UK, this world-first exhibition, explores how, at a pivotal moment when one in two of us will be diagnosed with cancer in our lifetime, more of us than ever before are living longer and better with the disease and beyond. 

From busting myths about the causes of cancer and revealing how the disease isn’t unique to humans, to exploring how the latest cancer science, early detection technologies and immunotherapies are advancing cancer care today, Cancer Revolution: Science, innovation and hope shows how far we have come in prevention, detection and treatment, and highlights the important challenges that are still to be solved.  

Find out how cancer has been treated over the centuries, from high-risk surgeries to the discovery of the first chemotherapy drugs. Discover the stories of people living with, treating, and affected by cancer today, and how researchers, clinicians, policymakers and patients are fuelling progress in a powerful expression of shared hope. 

Highlights include seldom and never-before seen objects and stories, cutting edge treatment, live research and reflection, new artist commissions and installations, film, photography and a breadth of personal stories, including from those living with chronic and advanced cancer. 

Deborah James, exhibition advisor, writer and podcaster says: 

“Five years ago I was diagnosed with advanced (stage 4) bowel cancer. From the bleakness, I’ve ridden the wings of science into a future I never thought I’d see. Science has always given me hope to take things one step at a time. I was given two and a half extra years of life, on a targeted drug combination not even on the table when I was first diagnosed. By taking part in trials I have become part of the data that will give hope and life to others and I couldn’t be prouder. for that.

“One day I hope my own children will live in a world where cancer is a chronic disease. I hope through this exhibition we can open up the conversation of cancer even more—throw down the veil and educate a new generation to know that prevention is key, science is wonderful, and always to have hope.”

More information and free tickets for Cancer Revolution: Science, innovation and hope will be released this autumn. Sign up to our newsletter to be the first to find out more.


Following its run in Manchester, Cancer Revolution: Science, innovation and hope will tour to the Science Museum in London in 2022.

ON 28TH JULY, THE COURT OF APPEAL HANDED DOWN JUDGMENT IN PARAMOUNT SHOPFITTING COMPANY LTD V RIX [2021].

HASAG Asbestos Disease Support is dedicated to supporting people affected by Asbestos-related diseases in the

South, South East, London and the Home Counties.

I found this case very interesting so wanted to share with you the reader. Mavis

ON 28TH JULY, THE COURT OF APPEAL HANDED DOWN JUDGMENT IN PARAMOUNT SHOPFITTING COMPANY LTD V RIX [2021].

Mr Rix had contracted mesothelioma as a result of being exposed to asbestos while working for the Defendant as a much younger man and, following his diagnosis, he instructed Irwin Mitchell Solicitors to bring a claim on his behalf. His principal reason for seeking legal advice was to ensure that the business would be able to continue financially after his death in view of a large loan taken out to support the business in its future growth plans.

Sadly, Mr Rix sadly passed away at the age of 60 as a result of his mesothelioma, leaving behind his widow and also a joinery business that he had built from the ground up.

The court found, based upon detailed evidence from the family, that Mr Rix had been the founder and driving force behind his joinery business. Mr Rix’s remarkable skill and flair meant that the business had become very successful.

Mr Rix’s business continued to thrive after his death and became even more profitable as a result of his hard work in the past.  This created a potential issue which was to prove that there had been a loss for the widow when the business had gone on to more success financially.

Mrs Rix argued that the financial loss she suffered as a result of her husband’s death was her share of the annual income that she would have been jointly entitled to if Mr Rix had lived. Alternatively, Mrs Rix argued that she was entitled to the costs of replacing Mr Rix in the business. After all, the business had had to employ more people to replace Mr Rix’s labour who did not possess his knowledge, skills, experience and contacts.

Unsurprisingly, the Defendant maintained that as the family business had been more profitable after Mr Rix’s death, there was no loss suffered by Mrs Rix.

At trial in the High Court, the judge decided that Mrs Rix had suffered a loss and that she was entitled to her share of the annual income that she would have enjoyed if Mr Rix was alive and well. This was because the income from the business was a result of Mr Rix’s business skill and acumen which had now been lost as a result of his premature death.

In the Court of Appeal, the Defendant argued that the High Court judge had been mistaken in the way he ruled that Mrs Rix’s loss of dependency was to be calculated. The Court of Appeal unanimously dismissed all of the Defendant’s grounds of appeal and found that the income of Mr and Mrs Rix from the business was wholly attributable to Mr Rix’s business talent, skill and hard work. As a result, Mrs Rix was entitled to her share of the income that she would have had if Mr Rix was still alive.

The decision is very important and will benefit families in similar situations. Where a patient of mesothelioma leaves behind a business that they have built up, the dependant can bring a claim for the profits they would have been entitled to if the patient had been alive and well. These types of scenarios are becoming more frequent in asbestos litigation and this case provides a solid basis for families in comparable situations to make claims on the same basis. It is also clear based upon the Judgment, that what happened to a business after the death of the sufferer is not taken in to account – it is the state of the business at death which is the most important factor in quantifying the loss.

Irwin Mitchell, with offices throughout England, has been supporting mesothelioma patients and their families for 40 years. Over that time, it is encouraging that more help has become available through the setting up of support groups. We are proud to work with HASAG, to support our clients and to improve their quality of life as well as supporting mesothelioma networks up and down the country.

Joanne Jefferies

Im so pleased the Judge came to this conclusion it is so right The Court of Appeal unanimously dismissed all of the Defendant’s grounds of appeal and found that the income of Mr and Mrs Rix from the business was wholly attributable to Mr Rix’s business talent, skill and hard work. As a result, Mrs Rix was entitled to her share of the income that she would have had if Mr Rix was still alive.

Now other Carers can use this case as a test case. With more younger patients appearing the problems at death are getting more complicated and you dont need these problems at such a sad time.

Well done to Irwin Mitchell and to HASAG https://hasag.co.uk/about-us/asbestos-related-diseases/

A Diary of A Mesowarrior –Today is a Good Day we have a Phase 1 Drug for #Mesothelioma

I had to share this with the blog as Im over the moon that at last Mesothelioma has a 1st line treatment approved and Licenced The Medicines and Healthcare products Regulatory Agency (MHRA) has approved the combination of nivolumab plus ipilimumab for the first-line treatment of adult patients with unresectable malignant pleural mesothelioma (MPM) in Great Britain.

Dr Sanjay Popat, Consultant Thoracic Medical Oncologist, Royal Marsden Hospital said: “Pleural mesothelioma is a devastating disease with a poor prognosis and treatment options are limited to chemotherapy and supportive care to help manage symptoms and improve quality of life. The approval of nivolumab plus ipilimumab is the first drug approval for mesothelioma since 2004 and will potentially improve survival expectations in these patients.”

I bet he and all the medical world is celebrating with us Mesowarriors that at last there is a better treatment that isnt so fierce as Chemotherapy and that doesnt kill good cells as well as the bad.

I disliked Chemo as I was so ill with it and Immunotherapy (albeit Pembro) was so gentle and more tolerable for me.

The trial evaluating nivolumab in combination with ipilimumab in previously untreated malignant pleural mesothelioma met its primary endpoint of overall survival in the

The CheckMate-743 trial evaluating nivolumab (Opdivo) in combination with ipilimumab (Yervoy) in previously untreated malignant pleural mesothelioma met its primary endpoint of overall survival (OS), according to Bristol-Myers Squibb, the agent’s developer.1

Based on a pre-specified interim analysis conducted by an independent data monitoring committee, the combination treatment was also found to result in a statistically significant and clinically meaningful improvement in OS compared to chemotherapy (pemetrexed and cisplatin or carboplatin). Additionally, the safety profile of nivolumab plus ipilimumab observed in the trial reflects the known safety profile of the combination It showed great results in the CheckMate-743 Trial which so many Mesowarriors took part in and we thank them so much for entering the trial and now we have this treatment at last for us.

Bristol Myers Squibb’s immunotherapy combination is the first treatment option approved for patients in the UK for more than 15 years.

Approximately 2,700 people are diagnosed with mesothelioma in the UK annually and due to a lack of symptoms in the early stages, the condition is frequently diagnosed at an advanced stage, with an expected lifespan of less than a year if untreated.[4,5]

The MHRA decision is supported by data from the ongoing Phase 3 Checkmate -743 study, in which the combination of nivolumab plus ipilimumab provided a significant improvement in overall survival versus standard of care pemetrexed and cisplatin or carboplatin chemotherapy (median overall survival 18·1 months; p=0·0020).

At two-years, 41% of patients treated with nivolumab plus ipilimumab were alive, compared to 27% of patients treated with chemotherapy. Grade 3–4 treatment-related adverse events were experienced by 30% of patients treated with nivolumab plus ipilimumab (n=300) versus 32% of patients treated with chemotherapy (n=284).[3]

The decision by the MHRA follows the European Medicines Agency’s (EMA) approval of the same treatment combination on 1st June 2021.[7] Nivolumab plus ipilimumab is now approved for use across England, Scotland, Wales, Ireland, and Northern Ireland for the first-line treatment of adult patients with unresectable MPM.[1,7]

Dr Sanjay Popat, Consultant Thoracic Medical Oncologist, Royal Marsden Hospital said: “Pleural mesothelioma is a devastating disease with a poor prognosis and treatment options are limited to chemotherapy and supportive care to help manage symptoms and improve quality of life. The approval of nivolumab plus ipilimumab is the first drug approval for mesothelioma since 2004 and will potentially improve survival expectations in these patients.”

Dr Hubert Bland, Executive Medical Director UK and Ireland, Bristol Myers Squibb said: “The MHRA approval of our immunotherapy combination for patients with pleural mesothelioma demonstrates our commitment to developing innovative treatments for patients with serious diseases. We will now work with the reimbursement authorities in the UK to help bring this combination treatment to patients as soon as possible.”

Today I have learnt that we still have to wait for the drugs to be approved for the NHS Oh how the wheels turn slowly

Source MHRA approves first immunotherapy treatment for mesothelioma    – Pharmafield

https://www.cancernetwork.com/view/checkmate-743-trial-nivolumab-ipilimumab-meets-primary-endpoint-mesothelioma-trial

A Diary Of A #Mesowarrior living with #Mesothelioma #asbestos — So lovely to have a heat wave

Anther year Im amazed I didnt think I would see another year of my Agapanthus and yet they are opening for the best show ever

I do feel so blessed that Im seeing another summer show from my garden. I enjoy working in it as well removing the weeds and cutting back the growth that has has risen to high due to all the rain we have had. We have also had the hottest day of the year but that meant a bad storm for some of the UK that lucky we missed out even though we had the thunder yesterday morning.

I have this week to go to see my Oncologist and talk things over but I then have a scan the next day. That doesn’t make sense does it but that is one Dept not Talking to another. I have got used to that through the years.

The crazy time is nearly over and we are free to mix and visit pubs and theatres etc but I have lost confidence. We stay home still. Im have got used to feeling safe. I must get more adventurous now. A holiday is needed.

Last week we had a publication come out from The Work and Pensions Committee https://lnkd.in/dAwNzQ2 as at last it has launched the inquiry that despite the importation, supply and use of #asbestos being banned in the UK since 1999, asbestos exposure remains the most significant single cause of work-related fatalities. I feel at last someone has woken up and realised that Mesothelioma is causing so many deaths. It is a brilliant report County by County

Mesothelioma deaths and cancer registrations in England,
Wales and Scotland
Figures A2.1 and A2.2 compare mesothelioma mortality with cancer registrations for
mesothelioma for the period from 2001 to 2018 for England and Wales, and 2001 to 2019
for Scotland.
During the period 2001 to 2018, there were 36,052 male and 7,326 female registrations in
GB where the cancer site was recorded as mesothelioma (C45), compared with 34,367
deaths among males and 6,532 among females (excluding a small number of those
resident outside Great Britain).
Annual cancer registrations are typically slightly higher than the number of mesothelioma
deaths occurring in each year. A number of factors potentially account for the differences
between the two series, including: variation in the time between date of cancer registration
and death with some individuals with mesothelioma surviving for substantially longer than
is typically the case, misdiagnosis of mesothelioma, and mesothelioma not being
mentioned on some deaths certificates where it should have been. However, the close
association between the two series suggests that these effects are relatively small, and
that mesothelioma continues to be rapidly fatal in most cases

I have been busy with a couple of Zoom meets helping research about survival and one about secondary exposure. I will share when they are published.

Also Im help a writer of a book but that is a longer process and Ray joined in and told his side of the story so I look forward to that being published.

I have knuckled under and updated my Presentation as it is a story of my journey and I keep having to add too that –That is wonderful as I get this extension on my survival each year.

Virgin Money Giving | Donation | Donation amount

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — A Catch up ActionMeso Day

It is time I sit down and put pen to paper and catch up with my life.

Its been all hospitals and treatment for my leg after that fall. The leg became so inflamed that and double in size.

My Oncologist feels it could have been so very fatigued after the Radiotherapy I had been through. I hadn’t thought of that as I didn’t realise radiotherapy could do that.

She has also said from now on use the walking stick!! I’m listening.

So with antibiotics and water tablets the leg is getting better.

Well the news has got better that we are out of lock down on 2 weeks. Im I happy?? not really, as I will not be packing my face coverings away. We will be wearing them when we go in shops etc. It is good news that we can get out and we have to gain confidence to mix with people.

On July 2 we held the Asbestos Alliance Action Meso Day. We have been in so many meetings working together to plan the day.

Hosted by broadcaster, academic and peritoneal mesothelioma patient, Kate Williams.

Action Mesothelioma Day (shortened to Action Meso Day) was held live on Friday 2 July 2021, as a virtual event aimed at raising awareness about the asbestos related cancer, mesothelioma and inviting everyone to take action to eradicate this disease.

This year, ActionMeso will host a national virtual event including panel discussions, clinical trials updates and interesting facts and insights for anyone new to mesothelioma. We recognise and apologise for the technical issues on the Zoom call and we hope the on-demand recording available here eases some of the frustration we all felt.

If you missed it and would like to catch up its here :- https://actionmeso.org/amd21/

Watch for the plate smashing sequence it really is my Fav bit.

I also spoke for IOSH here is that speech its been a busy time I enjoyed it all and I was exhausted by Friday night.

Action Mesothelioma Day: “asbestos hasn’t gone away – it is in our modern lives even today!” | No Time To Lose

Action Mesothelioma Day: “asbestos hasn’t gone away – it is in our modern lives even today!”

Mesothelioma sufferer and No Time to Lose supporter Mavis Nye looks back on her experience and why she continues to campaign on matters around asbestos

I have had the Official letter now congratulating me on my BEM and Garden Parties have started again at Buckingham Palace so I ordered my dress and shoes, lets hope the sun comes out in August.

Zoom meetings are still going on. I hope they don’t stop them as I wont be able to get to all the meetings in person as it will mean so much travelling I do hope it will be a mixture.

A Diary of a #Mesowarrior living with #Mesothelioma #asbestos – MESSY Picnic in the Rounderhay Park.

On a very hot Friday (Well the welcome was hot) We had travelled up to Leeds on the fast train to join the Yorkshire Support Group for their Picnic in The Park on a very cold day that colder the more north we travelled. We must be very soft in the south as everyone was in T shirts and summer dresses.

Arriving in a taxi we then walked through the park and there in the bandstand was the wonderful friendly MESSY Group. Even though we have only met on Zoom for the past 1.5 years we just knew everyone so well.

There was a feast of food laid out so much hard work had been done to make it a success even in the bitter wind. It did stay dry but poor Ray was shivering, as Lymphoma cant regulate his body temperature, bless him I do put him through difficult times.

But it was a great time and we wont forget the friendship xx

This is Bob and we have formed a lovely friendship. He like me is a Mesowarrior and we are travelling on the same journey. It was great to meet up in person.

The journey– I was able to travel and did so well even though my leg is a so painful. Thank goodness I had my walking stick as with out it Im sure I would have fallen over. I have to go on Thursday for another leg ultra sound and see if they can see through the edema and check if there is any clots.

At St Pancreas I went to the Loo a man grabbed me Wow!! shocked. He was talking to me in a foreign language but he opened the disabled toilet door which I had never seen before, he didn’t wont me to queue, bless him.

We were shocked that we were travelling at rush hour and it was empty. So going up we were able to keep our distance.

We had been upgraded to 1st class as they had spaced everyone out on the train well and yet coming back we were told to sit anywhere even though we had a seat booked. We were crammed in. So the rules went to pot.

On the whole we felt safe and kept a face covering on and used wet wipes all the time.

So that is our first journey over with and it has got us out again.

It was great to travel with Mary and Natalia to be together again and Congratulations to The Mavis Nye Foundations Chairperson, Mary Mulhall who has become a Partner in the specialist asbestos team at Hugh James Qualifying in 2009, after gaining her law degree with first class honours, Mary has been representing claimants in asbestos disease cases since 2012 and specialises in mesothelioma, asbestosis, and pleural thickening cases. Very proud of you watching your career grow

A Diary OF A #Mesowarrior Living With #Mesothelioma from #asbestos — A trail completed, two shock awards #Kentnews

It has been a very busy and interesting time for us lately.

I was put into the System 2 trial for pain. I had 2 weeks of radiotherapy as I was randomized to the strong group. I have found that the pain has subsided well and life has been easier.

I have had two falls since so I wondered if it has weakened me in someway. I have reported everything to my MesoUk nurse and I have written everything down to take to my follow up appointment.

Lucky enough the first fall was in front of an ambulance so I had first class help and treatment. The second time was on Sunday and two neighbours helped me back up. I did feel so silly.

So I have ordered some good shoes and I promise to always use my stick now.

I had already received the IOSH Presidential Award and was shocked as Jim Quinn and Bev Messenger presented award on a zoom call with Linda Reinstein of ADAO and myself both in shock.

It was for the work we do for NTTL No Time To Lose.

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As if this wasnt enough I had a email to say I was being honoured in the Queens Birthday Honours List. You are sworn to secrecy and that was so hard as you want to tell all the family and friends.

So proud and to receive the BEM though and hope COVID allows us to go to the Garden Party to receive the medal. As I accept in the name of all the Mesowarriors past and present we need this publicity for the terrible disease we have found ourselves with that was so preventable.

Im so pleased that Mesothelioma Awareness is in the Queens Honours list.

My son and DL came down and sunk our new little pond so Saturday was a lovely day of having company at last and we all enjoyed the day.

We hope it will attract frogs, birds and hedgehogs that used to visit our larger pond that we filled in as the heron just wouldnt stop pinching our fish.

So that is a quick catch up.

Our next big date is July 2nd for Action Meso Day as we have been working so hard behind the scenes bring this day to the fore.

actionmeso.org