A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos -2019 is behind us what has 2020 going to bring ??

 

 

 

 

 

 

 

 

I cant believe that I have made another year. I feel Im really pushing my luck but Im hanging on in there on this roller coaster.

My whole life is working for the Foundation. I want it set up and working raising donations for Mesothelioma research. The longer I live the more in tense this becomes.

I have a feeling of achieving my aims in 2019 as £70k has been raised so we (The Team) have set up the research grant for Simon Bolton who will have a poster at iMIG announcing his research.

https://imig2020.org/

The 15th Meeting of the International Mesothelioma Interest Group (iMig 2020) will take place in Brisbane, Australia in March 2020.

This multidisciplinary meeting will bring together over 500 delegates from around the world, and feature the most up-to-date research, diverse topics of interest, and educational sessions with leading experts. The meeting will offer plenty of networking opportunities with leading scientists and researchers, friends and colleagues.

Date: March 25 – 28, 2020

Location: Brisbane Convention & Exhibition Centre (BCEC), Brisbane, Australia

I was going to go to this but I have been advised that as Im in treatment and my Lung is not in good shape I really shouldn’t chance such a long flight.

I have given in and Im so disappointed.

Ray and I will be Celebrating our 60th Wedding Anniversary 2020 so what better way but we will have to Celebrate in the UK now.

We have also got the money to have a Mesothelioma UK Nurse in East Kent which everyone here in Kent know is my dream and so dreams do come true. We have put aside 2 years funding to make this possible.

So we now have to decide what research we will donate to this year.

I cant thank everyone enough for all the donations. I keep saying that but Im so happy that people do believe in me and my Board to do the right thing.

Mesothelioma is a devastating disease. It tears family apart but what is so destroying is knowing it is disease that really shouldn’t have happened.

There are around 2,500 mesothelioma deaths in the UK every year, that’s around 7 every day (2015-2017). Mesothelioma is the 18th most common cause of cancer death in the UK, accounting for 1% of all cancer deaths (2017).

But add to that all the deaths of asbestos diseases the figure is double that. BUT and a BIG BUT more Mesowarriors are surviving.

With Operations now in the UK and Immunotherapy Combinations, Gene trials things are looking better than my 10/11 years ago. Mesothelioma is spoken about more in Lung conferences etc etc.

So that is how I will spend 2020. Talking about the upside not the downside anymore.

Protecting  our lungs is essential be it asbestos, dust, fumes. We must look after our lungs now we know so much damage can be done.

 

I would have everyone wearing one everyday but of coarse thats not practical but men working have a range of masks please keep using the right one

Look for the sign

 

 

 

Have the right trainers for your employees.

Pre-RPE/fit test course

This is highly recommended for the first time user, as it is very important how the wearer Donns/Doffs the RPE.

They must have knowledge of this before their Face Fit.

Fitting the RPE incorrectly can lead to failure of the test and may cause exposure to contaminated air whilst being used.

We offer Basic course in Donning/Doffing and Pre-Use Checks of the RPE before the candidates perform their Fit Test.

Basic Training Session lasts 30 minutes for up to 8 candidates.

We recommend that candidates undertake a full RPE training course.

RPE training

This course is to give a good understanding of RPE for the first time user. It is very important that the selected mask the wearer is using performs correctly and does not expose them to any breathable hazards. This can be caused by incorrect Donning/Doffing or not performing the Pre-use checks. From FFP’s (Disposables) up to Full Face Masks, our session covers the following procedures in depth depending on the type of RPE being used. We deliver a powerpoint and practical demonstration explaining the Regulations including; checking the mask before Donning, types of filters, maintenance, storage, checks whilst wearing the mask correct doffing of the RPE and most importantly practicing CORRECT FITTING. This can be the biggest cause of failure, leading to exposure to the wearer.

Each candidate will receive a certificate showing that they have completed the course. Ideally this course should be taken before a Face Fit is performed. RPE Training Session lasts 3 – 4 Hours for up to 8 candidates.

RPE Maintenance Competent person

This is more advanced course for Half and Full face RPE only, aimed at supervisors or competent employees selected by their employer.

The candidates will be trained to record, check and maintain employees RPE as this is required by Law. The candidates should have a good knowledge of Donning/Doffing and Pre-Use checks of RPE before attending the course.

We deliver a powerpoint and a practical demonstration explaining the responsibilities and duties of a competent person, the law and Regulators they must follow, recording and reading checklists, maintenance, types of RPE, types of filters, misuse of RPE, correct Pre-Use checks are being carried out by the wearers, and awareness of Assigned ProtectionFactors.

Each candidate will receive a certificate showing that they have completed the course.

Competent Person Training Session lasts 3 – 4 Hours for up to 8 candidates.

Qualitative Fit Test Training

(In house only. You will not be Fit2Fit Accredited)

We offer this course for companies who may want to offer Fit Testing in house to their employees carried out by their own Health and Safety or appointed personnel. You will be trained to a HSE Fit Tester level, complying with all HSE standards and Regulations (Not Fit2Fit accredited). Each candidate must have good knowledge and experience with RPE to the competent Person standard. We deliver a Powerpoint and Practical demonstration informing the candidates of; the Regulations they must abide by, Fit testers responsibilities, different types of RPE, filters, record keeping, Assigned Protection Factors, problems which may occur during testing, knowledge of how a Fit Test works, how the Fit Test kit works and how to perform a Fit Test. The candidate must take a theory test and perform a good practical demonstration of a Fit Test at the end of the course.

Each candidate will receive a certificate showing that they have successfully completed the course to do Fit Testing to HSE standard (Not Fit2Fit accredited).

Qualitative Fit Test Training Session lasts 4 – 5 Hours for up to 6 candidates.

Asbestos doesnt care who it hurts so many famous people these are just a few

https://www.esss.co.uk/famous-asbestos-related-deaths/

Asbestos can affect anyone from any walk of life, celebrities included. The following is a list of celebrities whose deaths were related to asbestos, many of them being mesothelioma, an asbestos related lung cancer.

STEVE MCQUEEN, ACTOR (1930-1980)

Steve McQueen, nicknamed The King of Cool, was well known for his anti-hero roles in “The Magnificent Seven,” “Wanted: Dead or Alive,” and “Sand Pebbles.” By the early 1970s, he was one of America’s highest-paid actors.

McQueen believed his exposure to asbestos started in the U.S. Marines Corps, then continued during his days racing motorcycles and cars, his passion, when he wore the flame-retardant driver suits.

He took his fight against mesothelioma to Mexico, where he traveled in search of alternative treatments. He died from a heart attack, shortly after surgery to remove a large tumor.




SEAN SASSER, MTV STAR AND AIDS ACTIVIST (1968-2013)

Sean Sasser became an MTV celebrity in the early 1990s on the television show “The Real World: San Francisco.” He and Pedro Zamora helped break cultural barriers in America with a commitment ceremony on TV that became the most compelling story line of the series. They were the first openly gay, openly HIV-positive couple on television.

Zamora died in 1994, and Sasser became an AIDS activist and educator. He lived for more than 25 years with HIV, benefiting from the medical advancements that were made in the mid-’90s in combating the disease.

Sasser died in August 2013, less than two months after being diagnosed with mesothelioma at the age of 44. It’s likely that the HIV virus, which he had held in check for so many years, sparked rapid growth of the mesothelioma cancer. He was living in Washington, D.C., working as a pastry chef before he died.


JOE SAMPLE, MUSICIAN (1939-2014)

The Houston-born jazz pioneer founded The Crusaders from the bebop band that started when he was in high school. Sample was known for pushing the boundaries of jazz music by combining it with a distinct blues and soul sound.

He worked with other legendary performers, including Miles Davis, B. B. King, Eric Clapton, George Benson, Jimmy Witherspoon, Steely Dan and The Supremes.

After The Crusaders disbanded, Sample went solo and recorded “Ashes to Ashes,” a personal album that focused on the struggles of blacks at the time and their efforts to save their communities.

Nicole Kidman covered his song, “One Day I’ll Fly Away,” in the Oscar-winning film “Moulin Rouge.”




ED LAUTER, ACTOR (1938-2013)

Veteran character actor Ed Lauter worked for more than 40 years in the film and television industry, playing supporting roles alongside stars like Burt Reynolds (“The Longest Yard”), Clint Eastwood (“Trouble with the Curve”), Charles Bronson (“Death Wish 3”), Tom Cruise (“Born on the Fourth of July”) and George C. Scott (“The New Centurions”).

Lauter, 74, was in the midst of a film project when he was diagnosed with pleural mesothelioma in May 2013. He died less than six months later.

Lauter appeared in more than 200 films and television projects, playing a variety of roles. He was best known for playing authority figures and con men, often in crime stories. He also worked as a stand-up comedian, where he did impersonations of Humphrey Bogart, Burt Lancaster and James Cagney, among others.

His history of exposure to asbestos, which likely caused his mesothelioma cancer, was unclear at the time of his death.


MERLIN OLSEN, FOOTBALL PLAYER, ACTOR, BROADCASTER (1940-2010)

Merlin Olsen starred in football for many years with the Los Angeles Rams — he reached the Pro Football Hall of Fame — and transitioned easily into his post-playing days as a successful actor. He starred in the television series Little House on the Prairie. He also became a broadcaster with NBC, working as an analyst during National Football League games.

Mesothelioma was a shocking diagnosis for him.

Olsen attributed his exposure to asbestos to his childhood when he worked after school doing manual labor. He also handled drywall when he was older. Before he died, he filed a lawsuit against 20th Century Fox and NBC Studios, attributing more exposure to his time in television.




HAMILTON JORDAN, WHITE HOUSE CHIEF OF STAFF (1944-2008)

Jordan helped manage the election campaign of President Jimmy Carter in 1976. He then became Carter’s chief of staff, serving as the special negotiator on the Iranian Hostage Crisis in 1979.

He fought off three other cancers — non-Hodgkins lymphoma, prostate cancer and skin cancer — before succumbing to mesothelioma. He attributed his lymphoma to Agent Orange in Vietnam during his military service. He believed that his exposure to asbestos, which led to his mesothelioma, came from his years in the military.

After his earlier battles with cancer, Jordan and his wife founded Camp Sunshine in Decatur, Georgia, a place for children with the disease. He also was an active fundraiser for cancer research.


TERRY MCCANN, OLYMPIC GOLD MEDALIST (1934-2006)

Terry McCann won his gold medal in wrestling at the 1960 Olympics, not long after his two years of working in an oil refinery in Tulsa, Oklahoma, where he was exposed to the deadly asbestos fibers. While still preparing for the Olympics, McCann would come home every day from the refinery with a silvery dust in his hair and on his clothes, unaware it eventually would kill him.

More than 40 years after that Olympic triumph, after years of coaching, a career in business and a life revolving around his fitness regimen, McCann was diagnosed with mesothelioma. He became an outspoken critic of the asbestos industry and the CEOs of the corporations that produced the toxic products.




PAUL GLEASON, ACTOR (1939-2006)

Paul Gleason made a career out of playing unlikeable characters, particularly tough guys and unscrupulous, white-collar criminals. He appeared in 140 films or television shows, beginning in the 1960s. His best known parts came in “The Breakfast Club,” “Trading Places” and “Die Hard.”

Gleason believed that his exposure to asbestos stemmed from working construction jobs as a teenager. As an athlete before his acting began, he played college football at Florida State University (he was a teammate at FSU of actor Burt Reynolds), then signed a professional baseball contract with the Cleveland Indians.


WARREN ZEVON, MUSICIAN (1947-2003)

Warren Zevon was a unique singer and songwriter with a cult-like following, known best for his hits “Werewolves of London,” “Excitable Boy,” “Roland the Headless Thompson Gunner” and “Lawyers, Guns and Money.” He produced his final album “The Wind,” shortly after his mesothelioma diagnosis in 2002, recording songs with other rockers of his era: Bruce Springsteen, Joe Walsh, Jackson Brown and Tom Petty.

His son, Jordan Zevon, has become a spokesman for the Asbestos Disease Awareness Organization (ADAO). Although Zevon never said where his asbestos exposure was, Jordan has speculated that it came from his father’s childhood when his dad regularly played in the attic of his father’s carpet store in Arizona.

Shortly after his death in 2004, he was nominated for five Grammy Awards, and he won two, one of them with Springsteen for Best Rock Performance By A Duo.

Zevon was quite frank about his disease, and he talked about it in his last television appearance on “Late Show with David Letterman.”




ADMIRAL ELMO ZUMWALT, JR., U.S. CHIEF OF NAVAL OPERATIONS (1920-2000)

Elmo Zumwalt was a highly-decorated veteran who became the youngest man to serve as the U.S. Chief of Naval Operations, assuming that position during the Vietnam War era.

His believed his exposure to asbestos came throughout his Naval career, where he served on different ships that were loaded with the toxic fibers. His son Elmo Zumwalt, III, died of cancer at age 42. His father believed his son’s cancer stemmed from his service in Vietnam, where he was exposed to Agent Orange, the deadly herbicide which had received approval for use by the elder Zumwalt.

After retiring from the Navy after 32 years, Zumwalt made an unsuccessful bid for the U.S. Senate. He left behind a legacy of trying to improve conditions for servicemen.


A Diary Of A Mesowarrior Living With #Mesothelioma —- Empire #Asbestos Christmas Jumper Day Raising Donations for MNFoundation

 

 

 

 

 

 

 

 

 

 

 

It has been a fun week this week with Christmas Jumper Day

We decided to travel to Brentwood by train as there had been so many accidents on the road so early in the mornings. Dartford crossing is so bad.

Fast train to Stratford International then walk through the shopping Centre to the railway station to catch a train to Brentwood. We have never travelled on the

TfL Rail

TfL Rail  Liverpool Street to Shenfield. TfL Rail will turn into the new Elizabeth line when work is finished.

We set the specifications for train frequency, station facilities and overall performance, and are responsible for fares and revenue.

We also plan and fund improvements and extensions to the network. We work with Network Rail, Crossrail Ltd and others to improve the stations and trains we have inherited, and to build new ones in preparation for the Elizabeth line.

MTR Crossrail Ltd manages and operates trains and stations day-to-day.

 

 

 

It is a clean fast rail system and we were soon in a taxi to reach our destination.

As we passed the M25 after Romford and felt very smug as drivers were bumper to bumper.

A very warm welcome greeted us at Empire Asbestos

 

 

 

 

 

 

 

 

 

 

 

 

 

 

.https://www.empire-essentials.com/ 

Mark Stanley phoned and we all chatted and learnt what was going on in other branches.

Everyone was so cheery and happy it made us forget the Election for one day.

 

 

 

 

 

 

 

 

 

 

 

We had a lunch down the local pub –The portions were way to much so I had a doggy bag and Louis was pleased with that

 

 

 

 

 

 

 

 

 

So we were soon on our way home but we are really in the festive feeling now.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A huge thank you to Empire and we wish all the people working at this wonderful company a Very Merry Christmas and A Happy New Year

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

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — The last shot at my new trial all my fingers are crossed all I want for Christmas is Shrinkage

 

 

 

 

 

 

 

 

My life has been very medical since my last writing of my blog.

We travelled to the Marsden only to find my blood was out. The first week it was reported her neutriphil count was 1.12 but then the next week it dropped to .06??

I was told to stay away from any infections so train travel was right out of the picture.

I feel I have really let people down since being on the trial as the guadecitabbine has done its worse.

I did have a scan and the result I got this week was stable. Is there a glimmer that Pembro is kicking back??

Only time will tell as Im now on the lowest dose I can have of this new drug.

I have been researching for myself of what new drugs will appear 2020. Always on the look out for what is going on.

This Monday we travelled to the Marsden in some horrendous traffic jams as the M20 gets worse but we made it and I was told my blood count had jumped right back so treatment was possible.

Such a relief but as I have said this is it no more going lower on the dose.

Everyday we have travelled in very heavy traffic 3 times just for half an hour stay as the injection is so simple and they fit me in quickly.

Poor Ray has been so good driving me with an injured back as he had met with a hit and run accident last week.

He will insist in walking the dog in our narrow lane and a mad driver in a van hit him with his wing mirror. He didnt stop to see he had hit Ray into a bush, did he really care ?

A lorry driver stopped and made sure ray was Ok but neither had taken a number of the van.

In walked a shaking Ray and dog. I gave Ray a sweet tea and lots of sympathy and he insisted he was Ok but of coarse next day his back hurt.

He can now relax and really rest up as we are free from treatment for 2 weeks.

Christmas is almost here so I have to catch up and get straight.

 

 

 

 

 

 

 

 

We do have an exciting event on the 13th December when we have a Christmas jumper day in Essex so I will report all about that next week.

If your in Essex please drop in and help us raise money for The Foundation