A Meoswarriors Diary Living With #Mesothelioma #Asbestos – Speaking in Liverpool and having fun








Sunday saw us taking Louis to the kennels where he ran in happy to see everyone. The young kennel maid greeted him and he wagged his tail.

So we escaped quickly and went home to get the taxi. Whoops not one for 2 hours. Our lovely neighbour Dawn came to our rescue and ran us to the station so we were soon on our way to Liverpool

We had been invited by Joanne Candlish to speak at Merseyside Asbestos Victim Support Group Living well meeting,







The Virgin train soon got us to Liverpool although they couldn’t get into Lime Street as it was having a wall rebuilt that had collapsed so we used the local train and soon arrived at the hotel. Well it had taken nearly 6 hours and we were tired and hungry.







We were soon in the room and had a little rest and a drink before going down to dinner









There was people in the bar as they had watched the Final of the World Cup.

So we had our meal then returned to the room and of course I went on my computer.

A great sleep except I have never been in a among a colony of seagulls. they must be all nesting on the roofs and the windows were wide open.

On waking shower and down to breakfast.

Joanne soon joined us to travel in the taxi to the venue. We saw the Liver birds and Museum, so many old and lovely buildings surprisingly all seem to have escaped being pulled down to build modern glass floored builds. Well done Liverpool.

We pulled up at the Quaker Friends Meeting house for the meeting.








Lorraine Creech a Mesothelioma UK Nurse  greeted us for and John Flanagan MAVS Support Officer. Lots of hugs and greeting and then loading our USB Pens with our presentations on. Then Mesowarriors came in one by one so there was lots of laughing and talking and hugging going on.

Ray spoke first and it was received so well as always. It is a fascinating talk of his life in the Dockyard and working with asbestos.







Then I followed and updated everyone with what is happening to me now.








So many questions it was brilliant and we talked for ages discussing every sort of question.

We then had a group Picture We had met Cyber friends but also made a lot of new friends it was a great meeting.









We sadly had to say goodbye although we ended up have a walk around to see different buildings again I felt so at home and it was all so friendly.

















This building was a School,The Bluecoat School Chambers is a beautiful building in the heart of Liverpool in School Lane at the end of Church Alley. The school was founded in 1709 and built in 1716-1717. It is a brick building with the central facade flanked by two long wings.

It was closed shame we was going to eat in there.

So we went to find another and that was great food. We talked and ate and drunk wine it was great as Joanne knew that same people we did and visits the South and London Often s we do meet often and different Conferences.










It was raining when we at last left and dived into a taxi, well guess who was wearing flip-flops and no jacket. Note to oneself to pack things even if you think the sun is going to shine all the time.

We said our goodbyes as Joanne had to travel on the underground under the Mersey.

Ray and I relaxed in the room chatting about all that had gone on during the day.

This morning we got up early and travelled al the miles home to arrive back in Whitstable and then shoot round to the kennels and pick Louis up.

He of course has behaved so well and the kennel maid said she adored him he was so sweet. Oh how he has grown up and behaves so well bless him xx

So we are back home and preparing to go back to the Chatham Dockyard to make a video. we are meeting A lovely young man, another cyber friend. But that’s another story for tomorrow.

A ps to this is that the Richmond Hotel is where all the Mesowarriors are going to stay in Sept Weekend meetup but that to is another story haha !!!






A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — The Keytruda Regime Has Started lets fight the battle again





This has been a medical week as Monday we travelled to the Royal Marsden for my CT Scan.

I was seen by the Doctor and she agreed I passed all the tests to start the MK3475-28 again.

So today we got up at 5 and sorted the dog out a bit of a tidy up and off on the roads that were so crowded with lorries. We only have a small car and we got hemmed in at times.

But we arrived at 8am and booked in then waited to be called.

I had all my vital signs done, blood pressure, temperature and then back to the waiting room to wait.

The doctor called me in and explained everything.

The marker tumour is 1.5cm have grown from 1.4 since April so it has been caught when very small.

Waiting back in the waiting room we talked to all the lovely patients as they came in for treatment. My dear friend Joanne came to see me even though it was her day off.

At 11.45 we decided to go to the restaurant and have lunch. The Doctor stopped me that had has my BI-Op and is doing many tests on it. I hadn’t realised that they were finding out what the tumour is made up of and the DNA, you see they want to know is it the same as the tumours I had before Immunotherapy or is it different.

Why my Immunotherapy turning the Immune system on and made my T cells, Killer cells so banishing my Mesothelioma that worked so why didnt they kill these new cancer cells, how did they manage to get by. How did they disguise themselves, have they a different DNA. All very scientific, all exciting stuff.

So off in the lift to get something to eat and to take in all we had learnt today.

Getting the food everything was so familiar nothing seems to have changed, but I certainly have in the two years away.

On the return to the day ward I had a great welcoming party lots of laughing and talking to so many nurses that remembered me, it was time to be cannulated  as the drug would be up at 1pm.

It came up at 2.30pm.










Rex and I had a laugh as this was the first one of 24 infusions.

The half and hour passed quickly and I was soon on my way home again. The roads were very good and we soon got home to a nice cup of tea.




A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — Linda Reinstein visited Whistable !!!








We had a made arrangements to meet Linda Reinstein (ADAO http://www.asbestosdiseaseawareness.org/ ) as she was visiting UK fo Action Mesothelioma Day and I couldn’t get to London to the LASAG meet at Guys as I was attending The Dockyard meet and Ray was talking there.

I thought it would be a great idea if Linda came to Whitstable to see a quant seaside town. I wasn’t wrong she enjoyed every minute. The weather was so lovely, the sun was shinning and the skies were blue.

We got to the station early so sat on the platform. We watched people going off to London and people arriving it was like the old days, children with their buckets and spade and laughing excitedly.

I was amazed at the packed trains coming in. Then Linda’s fast train arrived and I was looking to my right and she came to my left. All the hugs and kissing over we walked into town.

I wanted to show her our castle where we had drinks and cakes an a long natter.

























Linda being Linda asked a kind man to take this photo –Turns out he was a retired photographer and he had us posing just right.

Ray went to see some paintings and slipped down a bank trust him.

We walked to the harbour then.










Ray dreaming again !!!





















We met the artist of all the lovely sunsets I have left the card in the postcards I bought for Linda to take home so I will have to pop down and get her card again.

After walking about we went to the local pub for a Pint and a sit down were we had a sort of business natter. talking out our plans and where I saw my

Foundation going and what I want to achieve with it.

We both talked over a lot of ideas It is good to talk as they say!!






















There was so much more to see but the time went so fast and we had to walk back to the station.

The train was late but when it did arrive we waved goodbye like the railway children.

And we travelled home.


Linda Bio http://www.asbestosdiseaseawareness.org/archives/6384

Linda Reinstein became an activist after her husband, Alan, was diagnosed with mesothelioma in 2003. Her search for answers led her to the realization that she and Alan were far from being alone. In 2004, she co-founded the Asbestos Disease Awareness Organization (ADAO) to reach out to those who have been affected by asbestos-related disease. Now serving as President and CEO, Reinstein has focused the power of the social networks to instantly unite those affected by asbestos-related disease, and those fighting for a ban on asbestos in the U.S. and elsewhere. Since 2004, Reinstein has been a strong political voice for justice in every major asbestos-related issue. She has frequently served as a U.S. Congressional witness and has also presented persuasive testimony, presentations, and keynote speeches.

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — A great Mesothelioma Awareness Day #AMD2018











Vivian Swain became the symbol of 2018 Action Mesothelioma Day

We were very close as I contacted when she appeared In the papers when first diagnosed. I’m so pleased I had the opportunity to met her in Manchester before Passed away so suddenly.
She was Ok on the Friday and Died on the 17th May – it was a shock and today her cremation was at the same time I set the Doves flying at the Chatham Dockyard.

It was so emotional but I kept the tears hidden even if I did have a sad heart.

Good Night Our wonderful Mesowarrior.

We turned around and went inside to have a lovely lunch and a chat then we sat down and listened to the speakers.

Speakers include Professor Karen Cox,

Vice Chancellor at the University of Kent,

Louise Gillham, Kent Mesothelioma UK nurse specialist,

John Reeves, National Union of Teachers (NUT) representative,

Ray spoke of his experience of working In the Dockyard where our story started

Professor Bill Cookson, National Mesothelioma Research Centre,

Dr Tuck-Kay Loke, Consultant Respiratory Physician

and Jeremy Horton, Asbestos Compensation Partner at Brachers.









It was so very warm today the heat hit us as we went out in the sunshine.

There is one blog that stands out it was from Leigh Day

Action: Mesothelioma
Asbestos diseases lawyer Steven Dickens on why, on Action Mesolthelioma Day 2018, the need for action on this asbestos-related disease is greater than ever as numbers of those dying from the disease still continue to rise

Figures produced by the Health and Safety Executive at the time showed 1978 people had died from mesothelioma in Great Britain in 2004.

The disease, a malignant lung disease which results mainly from exposure to asbestos, was responsible for killing somebody every five hours in the UK. The peak of the epidemic was estimated at the time at being reached in 2015.

The “action” that was demanded in 2006 involved making mesothelioma a “national priority” and funding “good quality research”.

Now, as we mark the 13th Action Mesothelioma Day with a nationwide series of events on Friday 6th July 2018, the HSE have reported this week that the number of people who lost their lives to mesothelioma in 2016 was 2595.

Since the 2006 call for Action over 2000 people have died from mesothelioma in Great Britain every year.

The upward trend in the number of people who lose their lives to this man made illness shows no sign of slowing down.

Figures from HSE, Mesothelioma in Great Britain showing annual deaths and cases of mesothelioma assessed for Industrial Injuries Disablement Benefit (IIDB).

In the 13 years that have passed since the initial call for Action on mesothelioma the HSE have amended their predictions as to when the peak of the epidemic will be reached.

In 2012 the numbers of deaths that were being recorded was already at a level that the statistical model had envisaged would be arrived at by 2018. Whilst the HSE remain of the view that a peak will be reached it now considers that the peak may not be reached until some point in the next decade.

It’s statistical model suggests that we are unlikely to see the numbers of annual mesothelioma deaths in Great Britain fall to their pre-2006 level of below 2,000 per annum for perhaps a further 15-20 years.

The reasons as to why numbers of mesothelioma deaths continues to rise beyond expectations is unknown. However, the experience of specialist asbestos lawyers and advisors is that the sources of exposure may well have been underestimated in the statistical modelling.

The suggestion that exposure would have declined following the 1969 Asbestos Regulations or the 1987 Control of Asbestos at Work Regulations takes little account of the exposures to asbestos of those in “secondary “ trades such as joiners, plumbers and electricians who continued to disturb asbestos left in situ on buildings constructed in the 1950s and 1960s for many years.

It also takes little account of an often lax and laissez faire attitude taken by many employers to appropriate protection for employees.

The call for Action on mesothelioma has seen some breakthroughs. Mesothelioma UK was launched in 2004 with financial support from Macmillan and the Mick Knighton Mesothelioma Research Fund. As a charitable organisation it goes from strength to strength working alongside the NHS to provide the best standards of care for mesothelioma patients.

It has recently appointed its 18th Mesothelioma Clinical Nurse Specialist in the UK, with plans to recruit more The role of Mesothelioma UK in administering and providing information and support in relation to clinical trials is vital.

As at June 2018 there were 11 available clinical trials currently recruiting according to the Mesothelioma UK website. Anyone with a longstanding interest in mesothelioma will identify that there has rarely been a time when as much research was being carried out.

The Forum of Asbestos Victims Support Groups was established in 2005 as an umbrella for the network of local asbestos victims support groups. These groups provide first line help and assistance to those who have been diagnosed with mesothelioma and assist with applications for welfare benefits and other important practical advice, as well as providing much needed support.

The Forum plays a vital role in campaigning on behalf of asbestos victims. With our assistance the Forum, represented by it’s chairperson Graham Dring, recently intervened in a significant case between insurers and a major historical producer of asbestos products to try to prevent documents held by the company from being destroyed.

Both organisations dovetail, and continue to go from strength to strength. However, both organisations remain funded largely by charitable donations. More could and should be done to make them and the provision of research the “priority” that was demanded in 2006.

In 2008 only £820,000 per annum was being invested into mesothelioma research, and whilst that figure was increased with a significant package of investment in 2016 the figures being invested remain inadequate and significantly lower than the figures invested by the government into research into other cancers.

As such, the call for Action remains as valid now in 2018 as it did 13 years ago.

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos — We have a Mesowarior of 19 years old why so young ????









Kirsty and Amie x

There is a worrying trend of young people showing Mesothelioma. Why?? it has me searching for answers and I found a report from 2013.

So many are being contaminated at school or DIY But we have now two 19 year olds. WHY??

This must be ringing alarm bells !! if not why not.

They tend to be Peritoneal at this young age, so they have to go through a horrendous operation where they lose so much of their stomach area.

Cruelly they have to have a hysterectomy, saving their eggs for when they might like to try for a baby, if they are lucky to be able to save their ovaries, or they have to think of a surrogate but that is in the future.

As one mother has told me :-  They removed 100% visible cancer (full hysterectomy) and did the hipec wash. It was the best news we could have hoped for. Now just waiting to see if they intend doing a course of chemo as a precaution as cancer was aggressive. Consultant said her life expectancy should be the same as anyone else with results from surgery. Had to sacrifice a lot along the way but she is here to tell the story and that’s all that matters. Basingstoke were amazing but I am just so thankful to the gp for finding the problem and fast tracking her. The nhs have been amazing. Basingstoke said to us they are not 10O% peritoneal one is caused by asbestos but have no proof either way so it’s just presumed it is. It came as a massive shock as her only symptom was a little bloating but only what you’d expect of a girl this age with rubbish periods. So scary what you can be walking around with not knowing anything is wrong xxx

That is horrendous for a family to have to go through.

We had the awful case of Mesowarrior Kirsty List.

We were so close and messaged all through her illness. We talked about a memory box for her little girl where she did buy one and put things into it for he little girl to look through when Mummy wasn’t around anymore.

“Everything revolves around my daughter. It’s that simple.”
“She’s five and she’s dealing with everything that I’m going through like an absolute champion.”

But she shouldn’t have had to go through it. Why wasn’t something done about Asbestos in those early days when the Governments knew. That’s a question I aske time and time again.


Kirsty, who has a five-year-old daughter, Aimee, was diagnosed with mesothelioma – a cancer of the lining of the body’s organs – after she began feeling unwell in September 2015.
She was initially diagnosed with gallstones but doctors discovered a tumour around her gallbladder when they attempted to remove her gallbladder during surgery.










Then there is our Danielle who has really done so well at the early age of 23

There have only been two other cases of peritoneal mesothelioma in under-25s since 2009.
Danielle said: “It’s been such a shock. I didn’t even know what asbestos was.”
Peritoneal mesothelioma is most common in men between the ages of 50 and 69. Most are veterans or have been exposed to asbestos at work.

Asbestos was fully banned in 1999.
Danielle’s parents Amanda, 47, and Simon, 51, run an alarm fitting business and have not knowingly worked with, or come into contact with, the substance.


A Report published in 2013 said. In terms of lifetime risk of developing mesothelioma, it is well recognised that the
younger a person is when they are exposed, the greater the risk of developing
mesothelioma, which reflects the latency of the disease as younger people are more
likely to live long enough for the disease to manifest itself. The effect of age of
exposure on the risk could be large, as risk increases


Following our deliberations, we make the following conclusions:
a) Asbestos is classified by IARC as a group 1 carcinogen, i.e. it is carcinogenic to
humans. Asbestos causes mesothelioma, and cancer of the lung, larynx, and ovary.
In their recent evaluation, IARC also considered that there is evidence (in some
cases limited) in humans for positive associations between exposure to asbestos
and cancer of the pharynx, stomach and colorectum.
b) In general terms, the levels of respirable asbestos fibres in air range from lowest
to highest in the following order:
• background outdoor ambient levels (lowest levels)
• background indoor ambient levels in buildings not built with asbestos
• levels in buildings built with asbestos where the asbestos is in good condition
• levels in buildings built with asbestos where the asbestos has been disturbed
or damaged and/or is in bad condition (highest levels)
c) The data in general suggest that the levels of asbestos found in schools with no
asbestos in their construction are of the same order of magnitude as indoor asbestos
levels in other buildings. When asbestos is present and is disturbed or damaged, the
data indicate that exposure to asbestos fibres can increase. However, the
information on levels found in schools is largely historical and there is a lack of
contemporary data on asbestos in schools. In view of the importance of this issue,
there would be a benefit in generating new exposure data.
d) There is also potential for children to be exposed to asbestos in their home
environment in homes where asbestos-containing products (ACPs) were used in
their construction. In general, the reported levels of asbestos found in traditionally
built houses and flats are of the same order of magnitude as ambient indoor levels.
However, activities such as maintenance can disturb asbestos and increase
exposure both at home and at school.
e) From an epidemiological perspective, there is good evidence that childhood
exposure to asbestos can cause mesothelioma in later life. However, the
epidemiological data are too limited to assess differential susceptibility between
children and adults. We recognise the effect of increased life expectancy of children
compared to adults and the increased likelihood of mesothelioma as a result of the
long latency period for this cancer. Because of differences in life expectancy, for a
given dose of asbestos, the lifetime risk of developing mesothelioma is predicted to
be about 3.5 times greater for a child first exposed to asbestos at age 5 compared to
an adult first exposed at age 25 and about 5 times greater when compared to an
adult first exposed at age
There are respiratory and immunological differences between adults and children
but their impact on the susceptibility of children to asbestos-induced cancer is
unclear. We were informed that the juvenile lung is particularly susceptible to injury
obstruction, would remain for life. However, it is not possible to determine what effect
fibre inhalation before the age of 5 would have on lung function, and whether any
effect would persist. Some physiological differences (e.g. respiratory rates, total
volume, and airway dimension) have the potential to modify the susceptibility of
children compared to adults to asbestos. However, modelling of fibre deposition in
children has indicated that children are unlikely to inhale more fibres than adults.
While the available relevant animal study provides data on age-related
susceptibility to asbestos in rodents, it does not offer any significant insight into the
relative vulnerability of children compared to adults to asbestos.
From the available data, it is not possible to say that children are intrinsically more
susceptible to asbestos-related injury. However, it is well recognised by this
Committee that, due to the increased life expectancy of children compared to adults,
there is an increased lifetime risk of mesothelioma as a result of the long latency
period of the disease. In reaching our conclusion and taking into consideration that
there are a number of uncertainties and data gaps, we conclude that exposure of
children to asbestos is likely to render them more vulnerable to developing
mesothelioma than exposure of adults to an equivalent asbestos dose.

Please read the report it is an eye opener —- The Committee on Carcinogenicity of Chemicals in Food, Consumer Products and the Environment (COC) prepared this statement in response to a request from the Department for Education (DfE). The statement sets out the committee’s views on the relative vulnerability of children to asbestos, and it informed the discussions of the independent Asbestos in Schools Steering Group.
Published 1 July 2013 https://www.gov.uk/government/publications/relative-vulnerability-of-children-to-asbestos-compared-to-adults


A diary of a Mesowarrior living with #Mesothelioma #Asbestos — A Day in the House of Commons






















Tuesday June 26th 2018

meeting 2 Mesowarriors in the restaurant of the House of Commons was a great part of this All Party Group on occupational Safety and Health meeting.









We had become such firm friends as her Dad suffered Mesothelioma and now I have met her and her Mum in real life makes it all such a special day.

It is why I enjoy going to the House Of Commons as you are right where you can fight and change laws with the help of MP’s.

So we made our way to Room 14 and met all the other members of the forum but also this again was special as at last I have met up with Fernanda Giannasi fro, Brazil

Fernanda Giannasi  is a symbol of the struggle to ban asbestos in Brazil. As Labour Inspector for the Ministry of Labor since 1983, Giannasi defends the public interest as regards worker safety and health. Although Brazil still uses asbestos, it has been banned in more than 40 countries, including the European Union members. Asbestos is used in the production of roofing, water tanks and brake pads, and 3000 other products. It can cause severe respiratory disease and cancer.
Giannasi is a founding member of Associação Brasileira dos Expostos ao Amianto (ABREA), the association of asbestos‐exposed workers in Brazil, and coordinator in Latin America of the Citizens’ Virtual Network Against Asbestos.

We all settled down as Martin Doherty Hughes MP and Jo Stevens MP Chaired the meeting.

Liz Darlinson had to read Our Dr Mags Portman a Mesowarrior who fights along side me with the disease.

She was on BBC 2 last night https://www.bbc.co.uk/programmes/p06bttt6 As here field is Aids and has fought the corner for so many sufferers to get the drug on the NHS.

Now she has a new battle bless her and was to unwell to come and talk herself of her story.

Sir Antony Newman Tailor Prof at the Imperial College spoke of the biology of Mesothelioma as the basis of effective treatment.

Jason Addy of the Spodden Valley Trust spoke of a subject I know well as I’m in with the residents and their fight of stopping building of many houses around the Turner Newel factory that although empty children are playing in such danger. The earth is contaminated around there. and is causing a 3rd wave of the asbestos disease Say No To Hindley is their campaign







Then Fernanda spoke the fight to ban Asbestos I Brazil a fight she has so passionately fought for a long time.

She leads the struggle of 3500 workers who have filed lawsuits against the industry. Criminal charges driven by economic interests have been filed against Giannasi for slander by Eternit, the biggest asbestos producer in Brazil, and by supporters of the French multinational Saint‐Gobain. She has suffered pressure from the Canadian government, the world’s largest exporter, and has been the subject of death threats. In the USA and Europe, her work is well known and respected.
Giannasi has successfully widened the world discussion. According to Giannasi, “I defend an immediate world ban on the production, marketing and use of asbestos”.

John Mclean gave us an update on Asbestos in Schools Figures by the Joint Union Asbestos Committee (JUAC) in conjunction with the campaigner Lucie Stephens and Rachel Reeves MP, reveal the shocking disparity in asbestos management across Multi Academy Trusts (MATs) and reinforce the need for the Government to take urgent action.
The data, gathered via Freedom of Information requests, included 54 reported asbestos exposure incidents in academies, including:

Krishnendu Mukherjee told us of the film Breathless -the fight against global asbestos industry

New documentary Breathless focuses on asbestos industry in developing countries – Film comes at a crucial time for the asbestos industry, as it looks further afield in order to manufacture its deadly products

This left time for questions and the meeting was closed.

We said our goodbyes to those that had trains to catch while others walked to the pub and finished the day with a chat in the sun and noise of London.

It had been a good day and a good meeting.





A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Our First Live Stream Presentation with Convance Chiltern and a relaxing time by the thames







I have had another great adventure as we at last went out in the Motorhome. The sun has shone all the time and the weather really warmed up.
Wednesday we packed the Motorhome and travelled to Hurley Camp site. It was a good journey so we were soon unpacking and relaxing by the River Thames.














Thursday we got up and packed everything away and travelled a short distance to Maidenhead to Covance Chiltern













We just didn’t know what to expect. With our presentations on a memory stick and Louis all sleepy in the Motor home into the building we went.

At reception came  some lovely members of staff who made us feel so welcome straight away.

We had lunch and talked away and it was explained that we were being joined by the head Office –In the US . Oh the wonders of Live Stream.

The photographer wanted photos outside with our Motorhome he was fascinated by our mode of transport.

Louis has got into the picture of course.

Returning back to the building and settled in with Mic’s and lightening and we were ready for go.

Only a few people in the room and we don’t know how many were listening in and watching us. Ray presented first and I followed. Then question time.

People we couldn’t see were asking so many questions and we were happy to answer. It seems everyone was thrilled with us and our presentations. The video will be published and used world wide.

When I spoke of this in our Private group in Facebook  Mary Hesdorffer said – These are companies that do the data management, lab assays and ensure adherence to clinical trials. They contract with companies that are developing and running trials to make sure compliance with clinical trial directives. the patient experience is so helpful and inspires some who do the work remotely who never have the opportunity to engage with those that they have an impact upon. Good for you Mavis and Ray!

I’m so please we did this now. and also I might need their expertise in the future.











Thank you girls for the wonderful day and memories you have given us and we look forward to the video.

We said our goodbyes and returned to the campsite and spent a restful time until returning home yesterday Sunday.

Lots of walks by the river and down country lanes. It has been a great break.






























But I did keep a check on my Mesowarriors and sorted out problems for them xxxxx