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

A Diary Of A Mesowarrior Surviving #Mesothelioma #Asbestos — IOSH have Awarded me for my work with NO time to Lose. Im now ready for Next Weeks System-2 Trial

Good morning its May 22nd and June is around the corner. Half way through 2021 already. We have had lovely weather and I was able to get in the garden and tidy it all up for summer but Summer doesn’t want to arrive yet.

Such heavy rain all through May we have never seen it so heavy. Monsoons every day this week. So we have stayed home which is what we have been doing for 1.5 years. That is unbelievable.

As you know Zoom has kept me safe and in touch with so many people so many meetings.

I have been given the honour of IOSH President’s Distinguished Service Award which was a total surprise as I thought I was going to have a Zoom Meeting with Linda Reinstein and Jasmeen Daji
Social Media and Community Lead IOSH but in popped Jimmy Quinn CFIOSH, IOSH President and Bev Messinger 1st degree connection 1stAward winning CEO, experienced NED & Exec Coach.

I couldnt make out what was going on and Bex soon explained that we Linda and I had bee chosen for the award for our work with the great campaign No Time to Lose.

We made this video for Launch (11) IOSH No Time to Lose asbestos real-life stories: Mavis Nye – YouTube

Jimmy made the presentation so vey emotional.

I have the certificate so I have to get all dressed up this afternoon and take a photo. This is the COVID way now as we cant meet up for grand events which is such a shame.

I have also mainly been attending appointments for my trial.

Yesterday was a blood test which has thrown up my Calcium is very very low.I don’t eat well as we Mesowarriors know the problem there Appetite is very up and down. So I have ordered tablets to give myself a boost and will eat more cheese and dairy products.

I also found walking round the hospital very hard. I keep saying I must get out for more walks but that has been impossible in the high wind and rain. We walked from the car to the entrance and had to hang on to railings it was that bad.

But now I have to wait for Monday to be told that I have passed all the criteria for the trial.

It was good to see my Oncologist but she was so tired after a hard week and she was glad it was Friday. I said have a good weekend but get plenty of rest (I said Im your Doctor now) We left all laughing but I hope she can recover for the next week she faces.

So that’s it all set up and waiting for Wednesdays Radiotherapy. Th trial is for pain but we also hope it pushes Mr Nasty off my spine and away from my Spinel Cord.

A Diary Of a Mesowarrior #mesothelioma #asbestos –Here we go again another trial this time for pain

Recap – I was diagnosed 2009 where I then had 4 years of Chemo regression Chemo

I went into a trial here in the UK of Pembro (Keytruda) 2016 In 2 years I got complete response and 2 years freedom. Then 2018 disease regression so rechallange the drug, after a great result regression again in 2019 so I was put on the Hyper trial to knock prembro back in action but it failed so no treatment through COVID but 2020 the Disease has grown to my spine

I have been to Kent and Canterbury Monday where my Oncologist welcomed me back and sat down and went through my scan.

We could see the growth near and on my spine but the surprise is its stable as only growing very very slowly.

She talked me through and explained there is a trial for pain. Well you know me and trials of coarse I agreed so now going into the Project System-2 which is Radiotherapy for pain that started in the UK Before covid but was stopped so Im a first again. The great thing is the growth is very very slow so its beginning to be believed Pembro IS still working as all my Meso is laying flat everywhere but the spine.

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-higher-dose-radiotherapy-to-treat-pain-caused-by-mesothelioma-systems-2

This trial is comparing the usual dose of radiotherapy with a higher dose to treat pain caused by mesothelioma.

People with mesothelioma often have pain. Unfortunately, regular painkillers don’t always work, so some people have radiotherapy to help with the pain.

We know that radiotherapy can be useful in treating pain caused by mesothelioma, but we don’t yet know the best dose and schedule to use.

Research shows that having the usual dose of radiotherapy once a day for 5 days helps control pain in just under half of patients with mesothelioma. So, researchers hope that increasing the dose will provide better pain control in more people.

The aims of the trial are to:

  • find out if a higher dose of radiotherapy works better than the usual dose to treat pain

It is for people whose mesothelioma started in the 2 sheets of tissue known as pleural membranes (or pleura) that cover the lungs (pleural mesothelioma).

I have an appointment to sign up on Friday then a blood test then its all systems go.

In the mean time Im on Oramorph 5-10 ml. I tried 5ml on Monday afternoon and it was brilliant as all the pain subsided so clever me took 10ml Monday night. Well I slept but I also slept all day Tuesday trying hard to stay awake for a couple of Zoom meetings.

I took 5ml last night and that is better and Im awake today.

That’s where I’am today lets see what happens next.

Aims – Mavis Nye Foundation

A diary of a Mesowarrior living with #mesothelioma #asbestos- Im back on hitting Mr Nasty again.

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I haven’t really kept the blog going through the Pandemic year but its been a strange year. Stuck at home scared to talk to anyone incase they breath germs over me. How unsociable is that? I have felt safe in my zoom world talking to my internet friends. The weather has been so cold the heating on all through winter and not even seeing family.

My Sister in law passed and I couldn’t even go and stand by my brother and hug him.

Only seeing my son and daughter in law in the garden until we had the Jabs was a cold alternative.

Like I say, a very unsociable time.

But now Im back as a patient again so its time to write the blog to keep everyone in the loop. There isnt a trial out there for me. The bad side of COVID- I went on watch and wait and now, it has broken out of my Lung travelled on a nerve and reached my spine.

When you have had a Immunotherapy and rechallenged the drug that’s it. All the drugs are the same as they do the same job.

So its going to be radiotherapy and Gemcitabine. Its seeming that works well after immunotherapy, I hope that is true.

I feel well, I feel Ok except for my spine being painful some nights.so that all the news on that front at the moment.

I have had two great days in BTOG today It was good even the computer. There has been so much good news this year for Mesothelioma and at last we have proper treatment away from trials. The future is bright for Mesowarriors in the future and Im proud I have led the way.

I had a lovely present sent to me by a fellow Mesowarrior Tim Stokes. He is so clever he made this for me and I promised not to take it off, ever.

I have had a great time in the garden over the weeks straighten it and cutting back. A good tidy was needed and that has been done now.

All that left is a power wash.

Asbestos – Should Britain introduce an eradication Law?

The All-Party Parliamentary Group on Occupational Safety and Health believes that the time has come to put in place regulations requiring the safe, phased and planned removal of all the asbestos that still remains in place across Britain

The background

This year, in Britain, official figures estimate that 5,000 people are likely to die prematurely as a result of asbestos exposure. This is around three times the number of road accident deaths.

Almost all of the people who are dying now were exposed to asbestos decades ago and asbestos is now often wrongly seen as being a problem of the past as its importation and use has been banned since 1999.

However asbestos is still with us and it is still as dangerous as ever. Asbestos Containing Materials (ACMs) can be found in around half a million non-domestic premises (and probably around a million domestic ones). It is present in a range of different forms including lagging on pipes and boilers; sprayed asbestos on pipes and in voids; asbestos cement in the form of roofing, wall cladding, guttering, pipes, water tanks and corrugated sheets, insulating boards, tiling, textured wall coatings, and asbestos ropes and cloth. Often it is either hidden or has not been identified as asbestos.

This means that people are still being exposed to asbestos. It is often people who are working in maintenance, refurbishment or demolition, but people can, and do, become exposed simply by working in a building with asbestos, as fibres can become dislodged and breathed in.

How dangerous is asbestos?

There are several different fatal diseases that result from asbestos exposure. The main ones are lung cancer, mesothelioma (which is a cancer of the lining of the lung or the abdominal cavity) and asbestosis, a long-term lung condition.

There is estimated to be around 2,000 lung cancer deaths a year caused by asbestos exposure, although many campaigners believe that this is an underestimation. This is primarily considered to be a result of very high levels of exposure involved in activities such as asbestos spraying, lagging, etc. Most of this kind of work was stopped in Britain by the 1980s, and the figures from lung cancer are slowly decreasing.

However deaths from mesothelioma, which can result from much lower exposure, continue to increase and in 2013 led to 2,538 deaths. Fatalities from asbestosis are also increasing. In 2012 there were 464 deaths where asbestosis is likely to have contributed as a cause and 900 newly assessed cases for Industrial Injuries Disablement Benefit in 2013.

An analysis of mesothelioma deaths shows that they are far more common amongst occupations such as carpenters, plumbers and electricians, but also occur amongst other workers with no history of work in the construction-related sector but who are likely to be effected through exposure in their workplace. This includes shopworkers, health-care workers, telephone engineers, teachers and finance workers.

Around 85% of mesothelioma deaths are a result of exposure at work, but some are due to exposure in the home. An unknown number of people may have developed mesothelioma as a result of exposure while at school. This is because asbestos is present in around 75% of schools.

There is no safe threshold of exposure to asbestos fibres. This means that the inhalation of small quantities, even over a short period, can lead to mesothelioma decades after exposure.

The Health and Safety Executive estimates that the number of deaths from mesothelioma is likely to continue to increase until around 2020 and then decline. This is because mesothelioma normally has a latency period of around 30-40 years and most exposure would have happened prior to the introduction of regulations restricting asbestos exposure and use in the 1970s and 1980s.

Before the death rate declines, around a quarter of a million people in Britain will have died as a result of asbestos exposure. How many will die after that is dependent on what we do now. Unfortunately the estimates of a decline after 2020 depend on presumptions of exposure which, the HSE admits, “are particularly dependent on assumptions about certain model parameters for which there is no strong empirical basis – and in particular, the extent of population asbestos exposure after 1980.”

Yet, there are no accurate figures for the levels of asbestos exposure since 1980, or any reason to believe that exposure will decline considerably over the coming decades unless action is taken to remove the cause of asbestos related diseases, which is the presence of asbestos containing materials.

So what is the present legal position?

The first major controls of asbestos were introduced in 1931, but only covered asbestos manufacturing processes.

In 1970 new regulations came into effect that covered other factories that used asbestos, including power stations and warehouses. It required better cleaning and the use of protective clothing.

In 1985 some types of asbestos were banned from importation or use and further regulations were introduced 2 years later. By 1988 most of the processes that led to very heavy exposure, such as spraying, were banned, and the use of asbestos as a major building material ceased.

The import, supply and use of almost all asbestos was not banned until 1999. However there were still considerable amounts of asbestos out there and people were being regularly exposed.

From 2004 there was a specific duty on employers to manage existing asbestos, and in 2006 all the existing regulations were brought together into one single regulation that, with the addition of a few changes in 2012, applies today. This states that:

  • If existing asbestos containing materials are in good condition and are not likely to be damaged, they may be left in place; their condition monitored and managed to ensure they are not disturbed.
  • Those responsible for maintenance of non-domestic premises, have a duty to manage the asbestos in them, to protect anyone using or working in the premises from the risks to health that exposure to asbestos causes.
  • Before doing any building or maintenance work in premises that might contain asbestos, you need to identify where it is and its type and condition; assess the risks, and manage and control these risks.
  • In most cases, work with asbestos needs to be done by a licensed contractor, but even non-licensed asbestos work requires effective controls.
  • The control limit for asbestos is 0.1 asbestos fibres per cubic centimetre of air (0.1 f/cm3). The control limit is not a ‘safe’ level and exposure from work activities involving asbestos must be reduced to as far below the control limit as possible.
  • Training is required for anyone liable to be exposed to asbestos fibres at work. This includes maintenance workers and others who may come into contact with or disturb asbestos (e.g. cable installers), as well as those involved in asbestos removal work. It also includes Surveyors, Architects and anyone in the construction industry unless they only ever work on new builds or properties built post 2000

Levels of current exposure

It is impossible to give a clear figure for the number of people who are exposed to asbestos today, or the levels they are exposed to. Although high exposure is now rare, the lower levels of exposure, which can lead to mesothelioma, are still happening on a daily basis. The HSE estimates that 1.3 million tradespeople are at risk of exposure, and they could come into contact with deadly asbestos on average more than 100 times a year.

Between 1950 and 1985 asbestos was used in millions of homes, workplaces and public buildings. It is estimated that as late as 1997 there were over 3,000 asbestos products on the market, ranging from paints and tiles to brake pads and resin toilet cisterns, but the main use was either as insulation or in the form of concrete cement, which was made into products such as corrugated roofing sheets and pipes. As a result it can be found in factories, homes, schools, shops, hospitals, offices, restaurants etc.

It is estimated that over six million tonnes of asbestos fibres were imported into Britain during the last century. The peak was in 1973 when 195,000 tonnes were importedix. Most of this asbestos is still there and it is likely that at least half a million commercial properties and a million domestic properties contain some form of the asbestos containing material.

Provided the asbestos containing products are in good condition and are not likely to be disturbed during the normal use of the building, the recommended action is to leave the material as it is and manage it in place. This has been the generally accepted practice in the past, but was always seen as a temporary measure. Yet 15 years after the introduction of a ban on its use, the vast majority of asbestos is still in place and poses a major hazard to both workers and the wider public. It is the view of the all-party parliamentary group that retaining a policy of managing asbestos in place is no longer appropriate and must be changed.

It is extremely unlikely that asbestos is never going to be disturbed if it is left in place for decades. There can be few cupboards, boilers, wall panels and pipes that have had no work done on them since the 1970s, when asbestos use was at its’ peak. There is therefore considerable doubt that most of the asbestos that is to be found in buildings is going to lie undisturbed for the next twenty years, let alone the next hundred.

Despite the regulations calling for all premises to be surveyed and asbestos containing materials to be regularly inspected and labelled, we know that this is not happening. A 2010 survey of 600 schools showed that only 28 per cent of respondents said the presence of asbestos-containing materials was clearly marked in the workplace. Where there was an asbestos-register, only one third of respondents were aware of its existence and only 20 per cent of the total sample confirmed that the register was shown to contractors before they commenced work.

This is particularly worrying because the Committee on Carcinogenicity has concluded that children may be more susceptible to develop mesothelioma as a result of exposure.

However exposure to asbestos is not just a problem in schools as can be shown by the number of prosecutions of shops, local authorities, factories and others for allowing workers to become exposed. Yet these prosecuted are only a tiny proportion of the employers who put the lives of their workers at risk by exposing them to asbestos. The asbestos regulations, however good they are, simply are not being complied with. In workplaces across Britain, most asbestos containing material remains unrecognised and even where it has been identified, accidental disturbances by contractors and others are common-place. Asbestos can also be dislodged by everyday activities such as vibration.

In addition there is a clear lack of awareness amongst those most at risk. In 2014, when asked by the HSE, only 30% of 500 tradespeople who were asked, were able to identify all the correct measures for working safely with asbestos.

Plumbers, carpenters, electricians and builders can also be exposed by working in domestic premises as there is no requirement for homeowners to survey for asbestos.

One trade union alone, Unite, has a register of around 15,000 of its members who have reported being exposed to asbestos, and that is likely to be only the tip of the iceberg, as most workers who are exposed will not have been aware of it or have reported it.

Need for an eradication programme?

Simple regulations for managing asbestos in the workplace, however good, will never protect workers from risk. So long as asbestos is found in any place where someone could be exposed there will be a danger. The only way we will eradicate mesothelioma in Britain is by removing asbestos. That will not be easy and there is a need for a realistic timetable, but work towards that should start now.

Other countries are already developing eradication plans. In 2013, Australia set up an Asbestos Safety and Eradication Agency with the specific goal of removing asbestos from public and commercial buildings with a view to eliminating asbestos related disease in the country. Poland, which has 13 million tonnes of asbestos in place, has also made a commitment to remove all asbestos by 2032. The European Parliament has called for the removal of asbestos from all European public buildings by 2028

If we are to protect future generations from the risk of exposure to this deadly fibre, the All-Party Parliamentary Group believes that we need a new law on asbestos with a clear timetable for the eradication of asbestos in every single workplace in Britain.

It should include provisions to ensure that:

  • All commercial, public, and rented domestic premises have to conduct, and register with the HSE, a survey done by a registered consultant which indicates whether asbestos containing material is present, and, if so, where it is and in what condition, to be completed no later than 2022.
  • Where asbestos is identified in any premises, all refurbishment, repair or remedial work done in the vicinity of the asbestos containing material should include the removal of the asbestos. Where no such work takes place, or is planned within the foreseeable future, the duty-holder must develop and implement a plan for the removal of all asbestos which ensures that removal is completed as soon as is reasonably practical but certainly no later than 2035. In the case of public buildings and educational establishments, such as schools, this should be done by 2028.
  • The HSE, local authorities and other enforcing agencies must develop a programme of workplace inspections to verify that all asbestos containing material identified is properly marked and managed, and that asbestos eradication plans are in place and include, as part of the plan, an acceptable time-frame for the eradication. Resources should be made available to the enforcing agencies to ensure that they can ensure that all workplaces and public places are complying with the regulation relating to management and removal, and that disposal is being done responsibly and safely.
  • Before any house sale is completed, a survey should be done which includes a survey of the presence of asbestos. Any asbestos containing material should be labelled. Information on the presence of asbestos should be given to any contractor working on the house.

Do you think that the Government should introduce an eradication Law?

Please contact us by phone 01458 253682, email or discuss this with others on our Facebook page. Source Asbestos – Should Britain introduce an Eradication Law? | Wilkins Safety Group

A Diary Of A #Mesowarrior living with #Mesothelioma #Asbestos — Written for #RareCancerday2021

The Story of Mavis Nye and Mesothelioma a rare disease written by Ray Nye 

I am often asked the question how I feel knowing that I have given my wife a death sentence. That question sounds ominous, but refers to the fact that I probably have. I am guilty of giving Mavis mesothelioma. It is a terminal cancer. caused only by contact with asbestos. 

To give a brief summary of how this came about we need to step back in time. For me it all began in 1953. I became an apprentice at Her Majesty’s Royal Dockyard in Chatham. My father was so proud that I had passed the entrance exam and had been offered an apprenticeship. Stay in the dockyard he often told me. Its regular and a job for life. At aged 15, what did I know? 

Roughly four years into my five-year apprenticeship the most wonderful thing ever to enter my life was about to happen. I met and fell in love with Mavis. 

I was just 19 and she was a couple of months short of 16. This was a relationship that has, to date, lasted 58 years with 55 of those married. 

In the dockyard asbestos was used on the ships. It was required for safety reasons and naval ships were built around asbestos. 

It was almost everywhere onboard ships. Almost all the inboard pipes were lagged with it. The boiler rooms could not function without it. It was everywhere. During refits and repair work, it was removed, then replaced. The waste asbestos was allowed to settle where it fell to be removed later by gangs of labourers. During its removal it created an inevitable dust cloud which one walked through constantly or simply worked amongst it. 

Those poor labourers removing it would descend on board with their brooms and shovels and begin sweeping it into piles and shovelling it into buckets ready to be dumped ashore, usually beside the gangplanks or on the dockside. 

It was piled up in heaps, left on barrows, dumped outside of workshops… No-one took any notice – it was part of everyday life working in the yard. No one told us to be careful or that it was dangerous. 

When it came to break time and lunchtime this was almost exclusively spent on board ship where the air was permanently blown around creating a cloud of dust. The dust would settle on out outer clothes, on our overalls, in our hair and on our skin. There was no escaping it. When a sandwich or lunch box was opened it would settle on its contents, which we consumed, unaware because it was so fine it was barely visible. 

At lunchtimes some of us who had transport would leave the dockyard. I at that time had a motorcycle and I often used it to visit Mavis for a few minutes before dashing back to work again. I would remove my overalls and dash out. This killer asbestos dust would be in our hair on our skin and inevitably on our clothes and was unwittingly, easily transferred from me to Mavis. 

Once we were married, Mavis washed my clothes, increasing her exposure to the asbestos dust. This exposure continued for a further couple of years until I left the dockyard. But by that time she had already breathed in this deadly dust. 

I had contaminated Mavis. I had laid the seeds of her later demise. 

This is where my guilt began. This is where the, ‘if only’ and ‘what if’ questions started. If I had never worked in the dockyard, would she be free of it now? If we had been told of its dangers, would I have chosen to leave the yard? If Mavis had never met me, would she be ok today? 

So, to answer the initial question, how do I feel about the fact that it was me who has given her this sentence? Gutted, destroyed, sick and, yes, guilty. 

Although the dock workers were ignorant of the far-reaching dangers of contact with asbestos, it was a proven a killer agent as far back as the early 1920s. But it was decided that it would be better for industry to simply pay-out those few compensations claims that were successful rather than the billions that would be lost if it was banned. 

We had to wait 30 odd years before it was finally banned here in the UK in 1999. 

Not much consolation for me. The damage was done. 

It was over 40 years before the asbestos exposure hit home. It was 2009 when we received the devastating news that the one thing in all my life that I treasure and have protected all those years now only had a matter of weeks left. 

The words ‘you have mesothelioma and it’s a terminal cancer. There is no cure, your prognosis is three months.’ cut so deep in my heart that I felt physically sick. My guilt mounted minute by minute. This feeling continued so heavy for several years. 

Mavis and I have discussed this and agreed, at least in principle, that I should not feel guilty, that it was a government decision to play down this danger. 

This doesn’t make the feeling go away. But I have come to terms with it. That does not mean I accept it. Shifting blame from me to them does not make it go away. 

With all the pain and misery, I have put her through it’s no wonder I feel guilty. She never asked for it and she doesn’t deserve it. If there was any justice it should be me in her shoes. 

The good news is in June 2014 we were offered a place on the MK3475 trial at the Royal Marsden which proved amazing. 

Today, we are more than fortunate to have a place on a wonder drug trial. A year ago, after chemo and other treatment and trials Mavis had deteriorated to a point where getting about was only possible with the help of a Zimmer walking frame. She was unable to walk a few paces without falling over. She would burn or cut herself without feeling anything. Unable to breathe without pain. She slept a lot she was so tired, worn out by five years of chemo and trials, all of which only provided temporary respite. That chemo damage is set and we have to deal with that. However, it is a small price to pay to have arrived here six years after that first three months prognosis. 

To date we did have complete response 2016 and 2 years freedom, there were very small amounts of thickening then 2020 and it has grown on the spine so now it is a watch and wait situation BUT despite the damage that has been done, she is alive and doing so well it’s amazing. 

We hope this is a continuing trend. Long may it reign for her.  Never give up hope xx

Ray 

The link to Mavis’s DNA Molecular and immunological features of a prolonged exceptional responder with malignant pleural mesothelioma treated initially and rechallenged with pembrolizumab (nih.gov) 

Her blog May 2020 – Rayandmave’s Blog (wordpress.com) 

The Mavis Nye Foundation Aims – Mavis Nye Foundation 

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos -Such a busy time life on the computer is hectic

Im really lagging behind on my blog postings aren’t I.

Stuck at home for exactly a year seems strange saying I have been busy, but I have. The cyber world is working hard at getting people involved in meetings.

Every day I get an invitation to do a interview or a a podcaste so each day Im learning something new.

Our first combined group meeting with HASAG and The Mavis Nye Foundation was a great success with mesowarriors, nurses and lawyers was very well attended so it is now set up for monthly events. The next one is March 8th.

Simon Bolten is presenting a paper at iMIG in May which is exciting as He is financed by the Research Grant The Mavis Nye Foundation has presented to him.

Action Meso Day is coming together well through lots of meetings where lots of idea’s are thrown into the pot and agreed. Lots of fun getting everyone under the one umbrella to join up and become one voice.

Please sign up and join in the champagne we need everyone to join in

https://www.actionmeso.org/about

Ray and I have joined a Research group in Sheffield to help with a Patient Carer group, Patient and Public involvement and engagement with Dr Julie Hedayioglu who is a psychologist at the National Institute for Health Research.sounded interesting tp share our journey.

Wow, what an incredible digital asbestos spotlight! 🙌

The speakers Yvonne Waterman, Founder & President of The European Asbestos Forum, Dr Mavis Nye, President & Co-Founder at Mavis Nye Foundation, Andrew Paten, Co-Founder at UKNAR – UK National Asbestos Register, Andy Newitt, Account Manager of Calcot Asbestos Recruitment Ltd, Nathalie van de Poel MBA, Co-Owner of Purified Metal Company, and all attendees for coming to this session made it a great time

On Thursday we listened into the Contamination Expo, which if you have read my blogs over the years I have visited in London and Birmingham.

I love this conference as I meet up with all my contacts on Linkedin

Those were the days but this year the Contamination Expo was well run by the team and I was involved with a recorded Interview

by Piage Mynard and thank you Daniel Rogers and the entire Contamination & Geotech Expo team who worked so hard on this and we’re so glad that so many enjoyed the Digital Spotlight!

The feedback on my speech has really made me happy thank you for all the compliments it always pleases me and makes me know Im doing the right thing sharing my journey xx here is the recording ASBESTOS SPOTLIGHT – Contamination & Geotech Expo 2021 – The UK’s leading event for Contamination, Geotechnical, and Environmental professionals (contaminationexpo.com)

I had had a telephone appointment with my Oncologist and she agreed I need my port flushed.

So Friday I was able to break away from the house and visit my hospital to have the flush which was all done within 30 mins the quickest hospital appointment I have been too

So that is a catch up for more read our newspaper Front Page | MNF News Page (wixsite.com)

A Diary Of A #mesowarrior Living With #mesothelioma #asbestos — Zoom has kept me sane in this mad world.

This has been my world lately. I have been into every meeting I can, sometimes 3 a day. Its just so lovely to see people and be involved in conversations.

The Mavis Nye Foundation is doing a Zoom meeting Combined with HASAG if you would like to join please send me your email address

We Are setting up a Zoom Meeting to have a chat about all things Mesothelioma. The Mavis Nye Foundation is partnering with HASAG to provide support to mesothelioma sufferers in Kent so please join in on Monday 8th Feb 2021 at 11am to 12 noon. It is open to everyone in the UK.Email mavisnye@yahoo.co.uk to be sent a link.

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I need to keep sane with Rays Lymphoma returning. But i must admit they have not hung around and with home telephone calls and hospital appointments he is back on the mend.

I know know what it is like for him having to sit outside in the car as he has gone for treatment and I couldnt go in with him.

I had the radio on as the evening darkened around me.

Ray has had Radiotherapy and Im proud of the positive vibes he has shown.

He has rested well and the lumps and bumps of the Lymphoma have been shrinking. Unlike my hidden cancer we can see his and so it is good to see the results of treatment with our own eyes.

Life is going on and we have longer daylight hours so we know Spring is on its way.

I bought Daffodils in bud in my on line shopping this week and its lovely to see the yellow flowers. Life will get better we must just be a little more patient.

My Donate Page – Mavis Nye Foundation

A Diary Of A Mesowarrior #asbestos #mesothelioma -The COVID Vaccine in in my veins brilliant

Yesterday was a good day

Ray had taken a phone call last week to say he had to attend the Medical Centre for his COVID Vaccination and I was so jealous until a Mesowarrior told me to ask if they had any cancellations. So I altered my shopping delivery and told Ray I would come with him.

I was looking on our local Whitstable Face Book and there was a picture of the traffic queue to get into the centre so we set off earlier.

I was out in the fresh air only it was cold air, but I was out which is such a rare occasion at the moment.

Traffic where was the traffic?? We sailed through until we got to Estuary View and then we joined the queue but we were so happy to be there. It snaked all around car park just like the queues at the airport, it meant that everyone was able to get off the main road and not hold any traffic up that was passing through.

I started to get nervous as we approached the large covered area, What if they said no! The Royal Marsden wanted me to have it so I was clear for any trial that might appear, That kept me determined to ask.

A doctor approached and asked was it both and so I said I only 79 and have Cancer could I join in. Yes that was possible he said as we finish at 4 and we have enough vaccine. I was over the moon.

As Ray was the driver he needed to stay after the injection for 15mins so we were guided to the Portacabin and had to park up.

In this new queue we waited for our turn and then we sat down, answered all the questions and that was it on jab was in my arm, The miracle vaccine was on its way to do its work and make antibodies to knock this Pandemic that has changed everything we know as normal life.

Ray was soon done and we sat out in the car for our 15 mins.

Everyone was in a good mood and so much laughing it was just good to see.

I would like to thank all those that worked to get this day to happen. From the scientists, drug companies, those first patients that went through the trials, the fast tracing that was done was just brilliant and then a Huge thank you to everyone in the NHS but then a huge thank you to our local surgeries and all involved.

First pictures from inside a Kent vaccination centre show just how busy it is – Kent Live

A Diary of A Mesowarrior #asbestos #mesothelioma — Happy New Year 2021 is at last with us its a new world.

So we are now in the first week of the year 2021. I hope things improve but sadly we are now seeing so many friends and their families falling to COVID with this new variant and that means another lock down.

We had a very quiet Christmas and Im so pleased I got Netflex for company. I watched the whole series of The Crown and then many other brilliant films. I have never ever watched so much. Normally we are away in the Motorhome and always see New Year in at a site meeting. Oh how our life has changed !!

I went to the Royal Marsden for my scan and poor Ray had to stay in the car in the old for over 3 hours.

I said to a nurse that it causes so much tension for the patients leaving their carers in the car park and guess what? My phone wouldn’t work so I couldn’t let Ray know that I was having a long wait to have my port opened and then closed. I didn’t know I could get so mentally worked up. I know now.

I have trapped a nerve in my back so I was having a problem lifting my legs on and off the scan table. I was convincing myself the cancer was growing well on my spine. In my mind I’m was dying this is it I thought 2021 will see me leaving my wonderful world and my wonderful family. I talked myself into it.

So when I got a phone call yesterday saying we dont want you to travel all the way to the Marsden for the results will you take it on the phone. Well that was it I was right. Then i realised the Doctor was saying The scan was good its not changed to much from last time. Wow!! the blood rushed in my ears I could hear it throbbing. “How much has it grown” “1mm in just one area.”

Wonderful news so because of COVID they don’t want treatment to start as it is growing so slowly I can have my next scan at Kent and Canterbury and I can have my port cleaned as well so we can relax for a while and concentrate on Rays Lymphoma. He has appointments and will have Radiotherapy. The hospitals are so worried about putting patients into chemo.

So that’s the start of my year normally I look back on the year that has passed but 2020 has been the weirdest year for us all. Zooming is the in word and you on mute !! is the funniest sentence,

I have a wardrobe of clothes that are not being worn a poor car that doesn’t want to start it coughs to life when we turn the key. We have saved so much money as the fuel bill is zilch and also no train expenses.

I did join Manchester’s Well being meet and Joanne from DAST did a great move it or lose it on Zoom. It worked really well and at least I have moved.

I have been sitting this morning entering Dates in the Diary and Ray and I have written speeches for the Training Zoom dates we have so we carry on Zooming and Netflex this is our new world. Please stay safe XX

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