A Diary of A Mesowarrior Living With #Mesothelioma #asbestos — Oh my! I can eat all the fatty and all the foods I like.

 

 

 

 

 

 

On Monday we had to travel to the Marsden in horrendous wind and rain but we made it ok.

My weight drop is now causing concern so an appointment was made with the dietitian.

It is hard when I cant eat meat anymore I find swallowing hard so everything is being cut up like Im a baby but Im going for soft foods and Vegetarian so much tastier

I was given made up drinks that are fortified  and I didnt like any of them so I now have ones that I make up with powder and milk so I will try those.

I have a water infection that they are growing and I must up my intake of fluids.

I have said I hate water but was told that any fluid can be counted except coffee as that is a diuretic. Thats music to my ears and so Im drinking other milk shakes and a Strawberry cordial. That means though the journey to the Marsden this week being longer I have to dash into the toilets when we arrive as a 2 hour journey my bladder is full. Goodness what I will do if I get into a longer traffic queue. ha! ha!

So this is my life this week – getting up at 6, on the road before 7 to get my injection each day BUT a bonus that I can eat trifle, Quiche,chips, cream, full fat milk. So alien to me that has been under Weight Watchers on and off since I was 25.

Monday is my scan day so Scanexity is underway because if the result is slow growing I could be taken off the Hyper Trial. They might offer something else but dread they say Palliative Care. I wont accept that I will hunt out a new trial somewhere this old bird will not give in.

https://www.royalmarsden.nhs.uk/your-care/living-and-beyond-cancer/eating-well 

Eating well

There may be times during your cancer treatment when you are unable to eat well. Losing weight or having a reduced food intake can make it more difficult for you to cope with treatments like surgery, radiotherapy and chemotherapy.

During these times you may need to change the balance of your diet to include different foods. It may also be helpful to alter when or how often you eat to make sure you try to eat enough. These may be short-term or long-term changes depending on your treatment and health.

What foods should I try to eat?

We should all try to eat a wide variety of different foods to make sure we get the nutrition our bodies need.

Meat, fish, eggs, tofu, soya products, pulses (beans and lentils), Quorn, nuts

These are a good source of protein, which is needed for the growth of body tissue, muscle strength and wound healing. Some also contain fat, so are a good source of energy (calories). They also contain vitamins and minerals.

Dairy products (such as cheese, milk, yoghurt and fromage frais) and non-dairy alternatives (such as soya milk and soya yoghurt)

These contain protein, fat, vitamins and minerals. If you are losing weight choose the full-fat varieties. If eating non-dairy alternatives choose those that are fortified with vitamins and minerals.

Sugar, honey, syrup, treacle and sugary foods, such as chocolate, cakes and sweets

These are good sources of energy.

Butter, margarine, oil, ghee and cream

These are good sources of energy and contain fat-soluble vitamins.

Fruit and vegetables

These are a good source of vitamins and minerals, but not usually of protein and energy. If you have a poor appetite you may need to reduce your normal quantities to enable you to eat higher energy foods.

Drinks

Aim to drink eight to ten cups or glasses each day. If you have a poor appetite choose nourishing drinks rather than just tea, coffee or water.

Are there any foods I should avoid?

When you are ill or having treatment you are more at risk of getting food poisoning. It is best to avoid the following foods:

  • raw or lightly cooked eggs
  • soft, ripened cheese (like Brie or Camembert) or blue-veined cheese (like Stilton)
  • pâté

Good food hygiene is also important.

Already following a different diet?

If you are already following a diet for other health reasons you may wish to discuss this with a dietitian.

Find out more

Further information can be found in this section of the website and in the Eating Well booklet, available to download as a PDF below in or by contacting the Patient Advice and Liaison Service (PALS).

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

All our Books https://www.mavisnyefoundation.com/our-books.html

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos —Well what a sad start to 2020

When you think you cant be shocked anymore and then a story like pops up

Lisa Anderson, 44, of Paignton, Devon, has revealed she is addicted to eating Johnson’s Baby Powder – and can eat an entire 200g tub (pictured, 500g) in just a day

https://www.dailymail.co.uk/health/article-7856679/Mother-reveals-addiction-eating-Johnsons-Baby-Powder.html?ito=social-facebook&fbclid=IwAR2_XUA0gOJQclGGeV5MJGay4yskewUeWS7d4y7C5lFMyXmCFkK05NhTMW0 

As you can guess the mesowarriors in my groups are so shocked. We feel she is mocking us. I keep waiting for some one to say its false news.

 

 

 

 

 

 

 

Then we find out Isobel Gall has lost her battle with Mesothelioma made it even worse.

A heartbroken family has paid tribute to a ‘bright’ and ‘clever’ Walsall bus driver who tragically died from cancer at just 29.

Isobel Gall’s devastated dad, Roger, has spoken of his pain after her death on New Year’s Eve (December 31) following a two-year battle with Mesothelioma.

She was a lovely happy person that joined in with the younger mesowarriors she will be missed.

So that was the start of our New Year and makes us even more determined to make people asbestos aware.

Today I had a Podcast interview which was different. I will share when published.

We have had the first MNfoundation Board Meeting yesterday. Our train was packed but the underground was quiet which made a change.

The meeting was great with lots of plans made for 2020. We planned a event for June so when that is all put together I will report to you and invite . Love planning its good to look ahead.

I have had phone calls and more plans of conferences are coming together which is making January very busy at the moment.

But next week is treatment every week but the 21st is a scan appointment. That could be bad news so we will have to wait and see.

The weather has been very mild if a little wet and windy but we are so lucky when you watch all about Australia

We have had Mesothelioma warriors caught up in all that sadness. They have been keep us in the know. So much smoke and heat I just dont know how they are surviving.

We send our love and hugs xx

Happy New year and i hope 2020 begins to get better

 

 

 

 

 

 

 

 

 

An Update on Isobel as a newspaper report has come out today

https://www.expressandstar.com/news/health/2020/01/10/bus-driver-may-have-been-exposed-to-asbestos-before-cancer-diagnosis/

She died on New Year’s Eve after being diagnosed with mesothelioma on August 2018.

Mesothelioma is a cancer that is almost always caused by exposure to asbestos, according to the NHS

The inquest heard Ms Gall may have been exposed to asbestos earlier on in life.

However the coroner’s office said this could not be proven. As a result coroner Joanne Lee listed her cause of death as 1A, mesothelioma.

Ms Gall, from Brownhills, worked for National Express West Midlands’ Walsall garage since 2015.

She was the first-ever female driver to win the National Express UK Bus Driver of the Year competition in July 2018 after beating more than 250 colleagues.

National Express West Midlands dedicated a Platinum Alexander Dennis Enviro 400 double decker bus – fleet number 6725 – to Isobel last year after she became ill.

Phil Bowen, operations manager at National Express West Midlands, paid tribute to Isobel as an “excellent driver and very well liked member of the team.”

 

Was Talcum Powder the cause ?? we will never know RIP Isobell you will be so sadly missed xx

 

 

 

 

 

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

A Diary Of A Mesowarrior #mesothelioma #asbestos — The story of a Mesothelioma Patient Sunday the 24th Nov 2019 the 20th anniversary of the banning of White Asbestos.

 

 

 

 

 

 

 

 

The story of a Mesothelioma Patient

Sunday the 24th Nov 2019 is the 20th anniversary of the banning of White Asbestos.

White (chrysotile) asbestos was banned in the UK in 1999, nearly 15 years after the first asbestos bans. This 1999 ban made the manufacture and supply of all asbestos products illegal in the UK. But so much had been used through the Industrial world in properties that were being built after the war that the problem was hidden, hidden until someone drilled a hole or renovated a house or even decorated a room. We then had the line of mesothelioma and other Asbestos diseases rise and rise.

I became a victim at the age of 15 as I met Ray and he was working in the Chatham Dockyard as a Shipwright. Ships had so much asbestos in as a fire protection it was right through a ship. When Ray came to meet me in college he had the dust on his clothes and I was breathing it in.

We married after his National Service was finished in 1960 and we had a family so we lived such a normal life until retirement when I was 60. We sold our house, bought a Park Home and a larger Motorhome.

We were set up to go to Spain to our son for winters and Whitstable for summer. WRONG!!!

We went to Spain for Feb 2009 and had a lovely 2 months sharing time with our son and daughter in law, we were in the Benidorm hurricane that caused a fire in the mountain by our sons Villa and had to evacuate so we travelled around and saw so much of the area it was a great day for us in the end except our Motor home was sooted up when we got back to the villa.

Back home I had breathing problems and a numb arm that after going to the Doctors he said I had a trapped ulnar nerve and ordered a x-ray which I had.

Then I went to vote on polling day but just couldn’t breathe but when I got home the phone was ringing and my Doctor told me to get to A&E as a bed was booked for me. The x-ray had shown a mass he said.

I did as I was told and I had 7 Litres of water drained from my lung. It had collapsed. From the fluid they grew cultures that showed Mesothelioma.

I had to travel to Guys Hospital for a Pleurodesis which is a procedure that uses medicine to adhere your lung to your chest wall. It seals up the space between the outer lining of your lung and chest wall (pleural cavity) to prevent fluid or air from continually building up around your lungs My lung inflated and I was OK.

This led to 4 years of Chemotherapy. 4 treatments with grow back each time until I became to toxic—No more treatment.

I couldn’t accept that and when a Professor suggested I get a referral to the Royal Marsden I listened and was soon under the Drug Development Unit with Prof Bono.

He had me in the MK3475-28 trial and I was on the new drug Pembrolizumab — This study will assessed the efficacy and safety of pembrolizumab (MK-3475) administered to participants with incurable advanced biomarker-positive solid tumours that have not responded to current therapy or for which current therapy is not appropriate. 28 Cancers were being tested only 3 places for Mesothelioma.

The trial was for 2 years in 2014 -2016 and I had complete response.

This gave me 2 free years to live so normal.

I had become a Asbestos Advocate talking to all the people involved with Asbestos. I want the younger people to stay safe when working with the dangerous Mineral. I always say “It killed us going in and it will kill us as it is removed”

I found myself travelling to give Presentations all around UK and Europe.

My own Charity was started also so I was fund raising in this time for The Mavis Nye Foundation.

I also kept the Face Book Groups running to help other mesowarriors to find information trials and treatment. I have made so many friends. Its been a full life and then 2018 the day we so dreaded came a scan showed growth. Not from the old Meso but completely new growth.

Lucky enough I had it in my trial papers that I could have the drug for 2 years if if it did grow back so I became the first person in the world to rechallange the drug for Mesothelioma.

A year all was well I had 14% shrinkage in 2 infusions then a scan showed the cancer had got cheeky and stopped the drug working.

I was then offered the New Hyper Trial Phase 1

This trial is for people with a solid tumour that has spread or continued to grow despite treatment (refractory).

Researchers are looking for new ways to help people with solid tumours that have spread or continued to grow despite treatments. In this trial they are looking at a new drug called guadecitabine.

Guadecitabine is a type of drug called a demethylating agent. It helps the immune system  to spot the cancer, which helps pembrolizumab to work better.  

Guadecitabine is similar to a drug called decitabine. Decitabine is already a possible treatment for people with acute myeloid leukaemia (AML). Doctors think that guadecitabine might work better than decitabine, but they need to find out for sure. 

Pembrolizumab (Keytruda) is a targeted drug called a monoclonal antibody. It stimulates the immune system to fight cancer cells. Pembrolizumab is already a possible treatment for people with non small cell lung cancer (NSCLC) and melanoma. 

This trial is in 2 parts. In the first part, researchers wanted to find the best dose of guadecitabine that you can safely have with pembrolizumab. This part is now closed. Researchers are now looking for people to join part 2. 

In the second part of this trial, everyone has the best dose of guadecitabine and pembrolizumab found during part 1. Doctors want to find out how well pembrolizumab and guadecitabine work and the effect it has on the body.

Im not finding the right level of Guadecitabine and my bloods are to low but they have adjusted the dose and 25% seemed ok but this week i showed it wasn’t working so Im waiting to see what their plans are. Reduction agan I suppose. All the patients on the trial are having the same problem BUT I have stable at the first Scan and Monday i have another scan so pray its shrinkage as the Pembro might have kicked back in to work. We will see.

I have given 3 Bi-Ops where they are looking at my DNA before the trial and during. They want to know how a cancer can turn the drug off what my DNA looks like before this trial but above all why I responded so well to Prembro as I only had 1% PDL 1

So many answers are in my body so Im pleased to help.

 

https://www.mesothelioma.uk.com/wp-content/uploads/2019/07/British-Asbestos-Newsletter-109_spring_summer_2019.pdf

Asbestos: Still alive and killing!

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Space Safe Virtual Reality Trial Results and the Christmas Lights Of London

 

 

 

 

 

My life goes in a puzzled world at times where I cant get straight.

I had to cancel BOHS because of treatment and then blow me down  after a 3 hour traffic jam on the M25 Monday and arriving late to the Marsden my bloods were out and treatment cancelled for a week.

So I will have my scan Monday and pray my bloods are good and I can carry on with treatment.

It was to late to go to Nottingham and not fair to mess people about so I was free to attend the Space Safe meeting at Queen Anne Street London yesterday.

This was the Trial I went into with the Virtual Reality head sets.

The SafeSpace study: using virtual reality to co-design health interventions for people living with and beyond cancer

 

Lisa Murray, Nurse Researcher with the Royal Marsden NHS Foundation Trust and member of the SafeSpace study team led by Professor Theresa Wiseman, tells us about this innovative virtual reality intervention study with the potential to benefit people living with and beyond cancer. SafeSpace is being featured at the 2019 NCRI and NHS England Living With and Beyond conference.

Many people living with and beyond cancer (LWBC) experience poor psychological wellbeing including increased levels of stress, anxiety, depression, guilt, anger, shame and other unwanted emotional states. Apart from being unpleasant, these states can contribute to poor engagement with therapy, poor lifestyle choices and a worsening of important relationships.

Co-designed health intervention

Experience based co-design (EBCD) is an approach for engaging all key stakeholders in the identification and the co-design of services and/or care pathways. It places an importance on working in partnership with service users to identify their priorities and solutions for service improvement as often these are very different to those of the service and staff working within it.

The SafeSpace study is a one-year study, funded by Macmillan Cancer Support, which seeks to use an adapted form of EBCD to co-design with people living with and beyond cancer a low cost, quality controlled and self-managed psychological health intervention.

Cultivating self-compassion

In addition to being able to enter and immerse themselves in high quality peaceful, calm environments, people with cancer will be able to access a series of guided exercises to help them cultivate and experience self-compassion, which is known to be associated with several therapeutic effects, helping them to rapidly relax and de-stress, while experiencing improved psychological wellbeing and self-compassion.

Study development

During the first phase of this study we ran an initial event to determine when and how this wellbeing intervention might be used along the cancer pathway. This was followed by four user-testing workshops at which participants were asked to test the VR experience and give feedback at each iteration of the design process.

The SafeSpace experience has now been developed and consists of three separate VR sessions which last approximately 10-12 minutes each. The user will be able to select from three VR environments: mountain, forest or beach. Once in the virtual environment, the user will listen to an audio recording which guides them through a series of exercises. Based on the feedback during the co-design, the user will hear a different, professionally recorded audio each time they use the experience, during which the concept and focus on compassion will be gradually developed. The aim of this is to introduce the concept of compassion to self gradually and help them orientate to this new way of thinking about themselves.

In phase 2, we will evaluate the feasibility and acceptability of using the SafeSpace intervention in the clinical setting and collect preliminary data to assess psychological and physiological effects of the experience. To achieve this, we plan to recruit 20 people who are undergoing cancer treatment into the study. Each participant will receive the three sessions of the SafeSpace study with each session being delivered separately.

Potential impact

The potential impact of this project could be significant – helping to reduce suffering and improve compliance during cancer treatment, as well as improving wellbeing, resilience and quality of life generally and at specific points along the cancer patient journey. General engagement with life, ability to cope with uncertainty and self-management skills may also be improved.

The team

The SafeSpace study is led by Professor Theresa Wiseman (Lead for Health Services Research), Lisa Murray and Geraldine O’Gara (Nurse Researchers) at the Royal Marsden NHS Foundation Trust. The study team also includes the following experts: Dr Andrew Macquarrie and Professor Anthony Steed (virtual environments and computer graphics), University College London; Professor Paul Gilbert (compassion focussed Therapy), University of Derby and Dr Tim Anstiss (psychological behaviour change therapies).

Further information

For more information about SafeSpace visit the Macmillan Cancer Support funded research site and find the study on the NCRI Portfolio Maps (‘Psychosocial Oncology and Survivorship’ area, Map A).

———————————————————————————————————————————————————————————————————It was great to see how well the trial was received and all the results.

I was asked to do a Interview video of how I thought it would work with patients and I said how it would be great when your in chemo it would calm you and even in a MRI scanner it would be good to show it on the white roof of the scanner and keep people calm.

So the trial will carryon with a larger amount of patients all that to get funding to get it into all hospitals.

I think that is a waste of time, it isnt a drug and the NHS should look at it as a piece of equipment and just allow it to happen. Friends of the hospital could fund this small project Im sure. I needs more advertising,

Anyway lunch was served and then we could go.

As we were in Oxford street we had a look at the shops and wished the Christmas lights were on but the sun was shinning away.