A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos -Alan Gully’s Funeral, New Trial, Speech for Annual Asbestos Seminar Written, Mesothelioma Applied Research Foundation Conference

It seems ages since I sat down and wrote my blog. It has been a really busy week.

I had to go shopping as the family were coming for Mothers Day. I didn’t want to go out to a Restaurant as they get so packed any Sunday but mothering Sunday I knew would be a No! NO! I love children but nowadays they seem to let them run riot and so noisy,

So a quiet Sunday was planned.

First on Friday I had to attend the Funeral of Alan the husband of Tess Gully who was a friend as well as a Mesowarrior.

We lived close as Tess lived in Margate.

I wrote this article with Alan’s Permission https://www.linkedin.com/pulse/asbestos-schools-my-dear-friend-tess-the-brent-report-mavis-nye-bcah


Alan lived on so so little time. He did a lot in that time as he sold up and moved away but we kept in touch but he didn’t have time to tell me he had cancer as well and passed so quickly.

The Funeral was very sad but all you could keep saying was the two childhood sweethearts were together again.

Goodnight to a wonderfully loved man xx

I was very sad.


Dean Fennel at MARF Talking about iMIG2017

I had an email from CRUK

CONFIRM trial. We are almost up and running with it now –   Your input was a great help to us to get to this point so a huge thank you for that.

We are setting up our trial management group which will be a team of people who are involved in making decisions about the running of the trial, would like to take part as a patient representative.

Wow try to stop me it would be amazing to play a part in helping others to get on a trial like this.

Than an email from Dean Fennel  a trial called MiST is on the cards .

CRUK non randomised pembro/defactinib trial is opening soon nationally but as a phase 1 recruitment numbers will be limited

It would be great to get your support again, on the trial management group for MiST. I will be in touch with more information soon

Dean has announced all this at  MARF in the US at the weekend. So I’m a real happy Bunny.

I spent the weekend contacting all those that need a trial so the emails are going off.

And still I got a message from a Mesowarrior who’s  Father is really do well but as the scan result was growth again. He was told there is nothing more so that’s it he is off Chemo and Of a trial he was on.  Why don’t they google and hunt on the computer for their Patient. I’m so lost. So I have got him to email for an appointment for a second opinion.

I also had to write a speech for a really prestige meeting https://www.12kbw.co.uk/events/annual-asbestos-seminar/

Annual Asbestos Seminar


Wednesday 5th April 2017


2.00pm – 6.00pm


Courthouse Hotel in Shoreditch, London, 335-337 Old Street, EC1V 9LL

We are delighted to announce our inaugural Annual Asbestos Seminar.

The Seminar will be held on 5th April 2017 from 2pm to 6pm, at the Courthouse Hotel in Shoreditch, followed by a drinks reception.

The event will be chaired by Harry Steinberg QC and will include talks from Mavis Nye, Brendan Tully, Michael Rawlinson QC and Gemma Scott.

There will also be talks on low level-asbestos exposure, medical and legal aspects of the new wave of immunotherapy, and recent developments (and new thoughts) on dependency claims.

I had met Harry at the book signing of Mary Seacole and he thought it would be great to have me talk the lawyers.

I asked the Mesowarriors if you could ask one question what would it be. I had a lovely response and the questions have been woven into my speech. Ray has approved it so I’m happy now that it’s all ready for the big day.

mothers day

Well Mothers Day came and it was lovely. A very good day with flowers and cards delivered and dinner cooked the day passed so quickly.

Then these next two days I have been live streaming


There are other rooms where most people were but here in the live stream with Patients and carers we listened to so many wonderful dedicated Mesothelioma Doctors and Nurses. They amaze me with all their knowledge.

The MesoUK Nurses were there with Liz Darlinson and they played a big part.



MesoUK Nurses

Mary Hesdorffer is retiring from MARF and she will be missed although she is playing a part still and I know she will still be giving her help to Mesowarriors where she has been involved with the Mesowarriors for so many years now. always there to give  help and advice. We pass patients to her if they contact us UK as they google for help.




Then I saw this photo and I saw  Peter Szlosarek standing up at the back always talking medical and Mesothelioma He is a dedicated Man.  They all are and working so hard together for treatment for us Mesowarriors around the world. A huge Thank you to you all xx



A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos -A Report Of The BTOG Meeting In London And Then The Shock Of The Killings At Westminster.

Yesterday was a very amazing day as we got the Fast train we never dreamt it would turn out to be such a eventful day.

We were all booked in for BTOG– Mesothelioma UK & British Thoracic Oncology Group (BTOG) – The Essential Update on Wednesday 22nd March 2017, Venue:  Welcome Foundation, London

It was pouring with Rain as we walked from St Pancreas to Euston which isn’t to far but in the rain and cold it seemed miles thank goodness we take our stick when we go  to London.

I love this meeting as the people who attend are all medical or connected to Mesothelioma in some way. Doctors Nurses as well as Mesothelioma Uk nurses attend with Solicitors and BLF, MSD and other drug companies and so many Doctors that are so Mesothelioma dedicated.

Mesothelioma UK and British Thoracic Oncology Group (BTOG)
Mesothelioma 2017 – The Essential Update
Date: Wednesday 22nd March 2017
Venue:  Wellcome Foundation, London – easily accessible from Euston or St Pancreas
Approved by the Federation of the Royal Colleges of Physicians of the United Kingdom for 5 category 1 (external) CPD credits (code 109884).

Mesothelioma UK and BTOG are pleased to be collaborating to present Mesothelioma 2017 – The Essential Update.  The meeting will be co-chaired by the Mesothelioma UK Chair of Trustees, Professor Michael Peake and BTOG Chair, Dr Sanjay Popat.

The educational meeting will attract over 100 thoracic oncology health care professionals from the multi-disciplinary team

09:00   Registration and Refreshments – Williams Lounge      Meeting – Henry Wellcome Auditorium Chairs:  Michael Peake and Liz Darlison 09:30  Open and Welcome       Michael Peake 09:35  Mesothelioma UK’s Strategy for Making Mesothelioma Matter  Liz Darlison   and an Update on the Mesothelioma Coalition 10:00  National Mesothelioma Audit      Susan Harden 10:15  BTS Mesothelioma Guidelines     Ian Woolhouse 10:30  Panel    10:45
Diagnosis, Staging and Symptom Control in 2017 11:15  Approaches to the Optimal Diagnosis of Mesothelioma  Nick Maskell 11:30  Mesothelioma Staging Classification     John Edwards 11:45  Symptom Control in Mesothelioma     Andrew Wilcock 12:00  Does the Specialist Mesothelioma MDT Add Value?   Anna Bibby 12:15  National Peritoneal Mesothelioma MDT    Emily Arbuthnot-Smith and Akash Mehta 12:30  Panel
Supporting Research in 2017 Chairs:  Sanjay Popat and Peter Szlosarek 13:45  Mesobank        Robert Rintoul 14:00  The Importance of Mesothelioma Genetics    Bill Cookson 14:20  Basic Science Research Funding and Grants    Ian Jarrold 14:30  Panel

The Clinical Trials Portfolio in 2017 – Criteria and How to Access 15:00  Chemotherapy/Immunotherapy     Sanjay Popat  15:20  Radiotherapy        Noelle O’Rourke 15:35  Surgical        Eric Lim 15:50  Panel 16:15  Close
Programme Final

Emily Arbuthnot-Smith, Peritoneal Malignancy Service Manager, Hampshire Hospitals NHSFT

Dr Anna Bibby, NIHR Doctoral Research Fellow, School of Clinical Sciences, University of Bristol

Professor William Cookson (Bill), Professor of Genomic Medicine, Imperial College London

Liz Darlison, Mesothelioma UK Director of Services and Consultant Nurse, University Hospitals of Leicester NHS Trust

Mr John Edwards, Consultant Thoracic Surgeon, Northern General Hospital, Sheffield and BTOG Chair of Trustees

Dr Susan Harden, Consultant Clinical Oncologist, Cambridge University Hospitals

Ian Jarrold, Head of Research, British Lung Foundation

Mr Eric Lim, Consultant Thoracic Surgeon, Royal Brompton & Harefield NHS Foundation Trust

Professor Nick Maskell, Professor of Respiratory Medicine, University of Bristol

Dr Akash Mehta, Clinical Fellow, Hampshire Hospitals NHSFT

Professor Michael Peake, Honorary Consultant and Professor of Respiratory Medicine, University of Leicester and Clinical Lead for Early Diagnosis, National Cancer Registration and Analysis Service (NCRAS), Public Health England and Mesothelioma UK Chair of Trustees

Dr Sanjay Popat, Consultant Thoracic Medical Oncologist at the Royal Marsden Hospital and Honorary Clinical Senior Lecturer in the Molecular Genetics and Genomics Group at the National Heart and Lung Institute, Imperial College London and BTOG Chair

Dr Noelle O’Rourke, Consultant Clinical Oncology, Beatson Oncology Centre, Glasgow

Dr Robert Rintoul, Consultant Respiratory Physician, Papworth Hospital NHS Foundation Trust

Dr Peter Szlosarek, Clinical Senior Lecturer and Consultant in Medical Oncology at the Barts Cancer Institute (QMUL) and St. Bartholomew’s Hospital

Dr Andrew Wilcock, Clinical Reader in Palliative Medicine and Medical Oncology, University of Nottingham

Dr Ian Woolhouse, Consultant Respiratory Physician, University Hospitals Birmingham

You can see from this that there is just so much info I just can report all but there are a couple of things that stand out.

Pain Control —- Codeine is the best to use as it changes to Morphine in our bodies. Morphine is quicker pain control than Opioids Please disguise with Oncologist but that is amazing

A thing learnt is they should do a first CT scan  before they drain our fluid off It gives a better scan and diagnosis .

I’m afraid I did set 2 questions to the Panel that through them

Bill Cookson  Spoke to us about The Importance of Mesothelioma Genetics  so I asked the question that Mesothelioma doesn’t have many mutations and so does  chemo change the mutation for Immunotherapy to work. as I was so toxic. He had no answer and apologise and told me it was a very good question he has now to go away and think about it  I saw him at lunch and we laughed I said I’m sorry if I put you in a spot but he wouldn’t hear of it and really wants to solve it for me.

The other question was to Dr Robert Rintoul, Consultant Respiratory Physician, Papworth Hospital NHS Foundation Trust who gave a great talk on the Tissue bank but I was amazed that he had collected enough data to do a study of looking at Bi-Ops and comparing Mesothelioma.

MesobanK is the UK’s largest unique collection of high-quality tissue, cells and blood samples from mesothelioma patients. It is dedicated to the study of mesothelioma by providing researchers with samples for a range of mesothelioma research. It is the patients that donated their Bi-Ops

Mesothelioma is a disease affecting both men and women and is most commonly caused by exposure to asbestos. Present treatments do not cure the disease and the aim of MesobanK is to make available samples and data which may be able to assist researchers find new and more effective treatments. As well as access to tissue, scientists can request anonymised data linked to the sample, and the treatments they’ve received.

MesobanK was established in 2012 and collaborates with hospitals around the UK to identify patients with mesothelioma and collect samples.

I said that when I cane back from Ireland BTOG2017 we had been told to make sure we all knew where our tissue was being stored  as finding out for Trials was taking for some up to 5 months to trace.and like others I thought Mine was at Papworth but I do know I have some at St Barts and The Royal Marsden. Robert said he didn’t know what they did with the Tissue. He will find out. He said the best questions usually do come from Patients

 A round up of all the tweets Mesothelioma UK have done a great job publishing this

It was just as it all came to the end that we had heard about the trouble at the House Of commons.

Ray had miss calls on his phone from our son who was so worried just where we were.

I know why he did that as it bought  back a bad Saturday for the pair of them I feel sick when I look back at this. Terry was blown off a ladder and fell on his Dad and yet they still phoned me https://en.wikipedia.org/wiki/1993_Bishopsgate_bombing

We were  fine and got home safe unlike the poor people we have seen so many distressing photos today and the wonderful Policeman that lost his life. It was so distressing. But I loved hearing how the medics and nurses ran out of St Thomas’s bless them I bet they saved lives by being on the scene so quick.

A huge thank you to all the emergency Services and al the wonderful people that came and helped the poor people involved.

FIVE people were killed, including the attacker, and around 29 others were injured, after a knifeman brought terror to the heart of Westminster during a deadly attack.

A police officer was knifed to death inside the ground of Parliament, and members of the public were killed during the attack in London on Wednesday.

Among those injured were people from Ireland, America South Korea, Romania, France, Poland and Germany.


A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Saying Goodbye to Mesowarriors and a thank you to the Asbestos Removal Industry.

The latest information shows:  There were 2,515 mesothelioma deaths in Great Britain in 2014, a similar number to the 2,556 deaths in 2013, and 2,549 deaths in 2012.  The latest projections suggest that there will continue to be around 2,500 deaths per year for the rest of this current decade before annual numbers begin to decline.   The continuing increase in annual mesothelioma deaths in recent years has been driven mainly by deaths among those aged 75 and above.  In 2014 there were 2,101 male deaths and 414 female deaths.  There were 2,130 new cases of mesothelioma assessed for Industrial Injuries Disablement Benefit (IIDB) in 2015 compared with 2,215 in 2014.  Men who worked in the building industry when asbestos was used extensively are now among those most at risk of mesothelioma.

 Just numbers that we read but there are personal stories behind these fact and figure’s.

On Facebook we collect together and share our fright and our fears, we become friends and meet up at Mesothelioma UK Patients Carers Conference in October. Or in offices at meetings to sort will the problems out this brings together Lawyers, Doctors, Support Groups and we thrash out asbestos in schools etc and  ways to make the world understand how we need more research and we need treatments.

At last we do seem to be on more people s radar The Victor Dahdaleh Foundation– the charitable organisation of Canadian entrepreneur and philanthropist Victor Dahdaleh has signed a formal agreement to donate £5 million to the British Lung Foundation to fund mesothelioma research in the UK. The donation, which matches government funding announced last year, was made official at a signing ceremony in the House of Lords today. It is the largest ever made to the BLF.The funding will support the development of new treatments for the disease by a combined research team from the University of Leicester, Papworth Hospital NHS Foundation Trust in Cambridge, and the government-funded National Mesothelioma Research Centre at Imperial College in London.

Speaking at the ceremony, Victor Dahdaleh said the Foundation was confident that the team would be able to deliver tangible benefits for patients.

“We are delighted to be working in coordination with the British Lung Foundation, the UK Department of Health, and the research team to support the quest for new treatments for this terrible disease.

“The UK already has leading expertise in mesothelioma research, and we believe that by working together in this way we can do even more. The professionalism we have already seen from everyone involved has been second-to-none.”

In an additional move towards greater collaboration between research centres, the British Lung Foundation has formed a Mesothelioma Research Network, involving the programmes at Leicester, Papworth and Imperial together with other specialist mesothelioma centres across the UK.

This matches the news that The Chancellor’s Budget 2016 announcement that the government would give £5m to establish a National Mesothelioma Centre of Excellence was greeted with surprise by many who work with asbestos disease victims and those campaigners who have sought to raise funding for many years. Mesothelioma research has been underfunded in the past and the governments initiative was welcomed.

Meetings are being held that I attend and the plans are going into action

It is all very exciting news but it is all in the future and last week I had to light the Mesowarrior Candle 3 times.

It breaks our hearts all the suffering this brings to families.

I just wanted all my asbestos contacts to know how we appreciate all you do to irradiate the poison from our buildings etc etc

My contacts are growing by the day, Im so grateful for all the help you give me.

I copy to FaceBook  retweet and share all your knowledge and Photos as I share all the photos the boys put on Facebook here with you all.

I get wonderful messages and conversations with so many and have met up with you at the Contamination Excel Exhibition (I will be there this year ) and now Im being asked to speak at more and more of your conferences where we do our double act as Ray talks about the guilt of bring the dust home on his clothes.

I have a huge talk coming up with a Lawyers Conference so that is very daunting but I have written a speech from asking the Mesowarriors  on F/B if they had just one question what would it be.

I often do this about many subjects involving our illness then I can get their worries and fears across to the Doctors etc etc.


Niki Strange on the death of her wonderful Grandmother said — Have just lost the most beautiful, loving, funny, selfless and naughty Nanny anyone could ever wish for, the hole she has left if unbearable. Please everyone give her a loving, happy thought because she was the most perfect Nan anyone could ever ask for ❤️ we will drink sherry and giggle some more don’t you worry. I love you so so much xxxxxxx

Racheal Place said -Today is definitely one of the saddest of my life as I had to say goodbye to my beautiful loving mum, the best mum and best friend a girl could ask for Carol Place You’ll always be in my thoughts and my heart mum and will be sorely missed by me and all the people, friends and family, who’s lives you enriched. Rest in peace mum you put up a good fight but it’s time for you to be at peace with the angels.Love you to the stars and back and I’ll be talking to you everyday like I always do xxx

Pauline Starr on the death of her beloved Adrian said :- Mavis you’re wonderful you give us hope to carry on and the impact of keytruda on your cancer is amazing. Long may it continue … However only a percentage of sufferers will respond to keytruda and other immunotherapy drugs.

  1. There needs to be more funding allocated to research – no doubt said many many times….though there’s no incentive for drug companies to be involved.

  2. Though this is a subject I know little about I do know about the anguish of being a carer, of holding the hand of a loved one during the hospital treatments, the what seems like hours in waiting rooms for appointments and in helping nurse at home during the final weeks of life. Our local Macmillan nurses were amazing and the support provided enabled Adrian to spend his final weeks at home.

So I once again I give a huge thank you to you all for your dedication to Asbestos and the huge problem of managing and removal but above all please keep safe  and don’t cut corners your safety is important as well.

Please use any of my videos on my web pages in your presentations it is why I do them so anyone can share



A Diary Of A #Mesowarrior Living With #Meothelioma #Asbestos -Ray has Been Interviewed for Local Paper Hope it Helps #CHEK And the fight for our A&E Critical Care Unit #NHS

I could have been dead if Canterbury hospital’s urgent care centre was closed’

A heart attack survivor who was rushed to the urgent care centre in Canterbury has branded its closure a “disaster”.

Staff at the Kent and Canterbury Hospital were told last month that the centre – which treats patients with acute medical illnesses such as heart attacks and strokes – is likely to close this spring.

The decision would leave the hospital with only a minor injuries department, and could mean emergency patients heading to William Harvey and to the Queen Elizabeth, Queen Mary Hospital in Margate.

The speculation has worried former Kent and Canterbury patient Raymond Nye, 79, who had to use the acute ward when he suffered a heart attack four years ago.

‘I could have been sitting up with the angels’

The Seasalter resident has warned that if the urgent care centre were to be closed when he fell ill, he could be “sitting up with the angels” due to the distance of the nearest emergency department.

Mr Nye said: “I’m 79-years-old now, which means I’m no spring chicken. When you have an emergency you don’t expect to be travelling half way round the country.

“It took me 15 minutes to get to Canterbury by ambulance, where it would take at least 30 minutes to get to Ashford.

My face hurt, my arms hurt and I had pins and needles. I thought to myself this isn’t right so I turned round to go back home.

“I phoned my GP saying I had severe pains in my neck, arms and face to which he told me to ring 999 immediately.

“In less than 10 minutes there were paramedics here and they connected me up to all these machines.

“They told me I had suffered a heart attack and the next thing I knew I was in hospital.”

Mr Nye spent the next week in Kent and Canterbury hospital following the sudden emergency, where he was moved from the urgent care centre to the Taylor ward.

37 minutes to get to William Harvey

He added that the only way to get to the William Harvey Hospital from Seasalter would mean travelling down single lane roads which would be “dangerous” at seed. He added that the journey to Ashford would take 37 minutes and just under 19 miles.

More than 2,300 people have signed a petition urging the centre not to close, although hospital bosses have not officially confirmed whether they are shutting the unit.

A spokesman for the East Kent Hospitals University NHS Foundation Trust said: “We have a duty to ensure that hospital services are safe, 24 hours a day, seven days a week. They are safe now, but finding enough permanent doctors to work at Kent & Canterbury Hospital is difficult and we are relying heavily on locum doctors.

“If we reached a point where there were not enough doctors to look after patients safely, we would need to make temporary changes to some of the services we provide, with some patients needing to be seen at Ashford and Margate hospitals instead.

“Keeping patients safe is our priority, so we will only do this if it is the safest thing to do for our patients.”

ray heart
Read more at http://www.kentlive.news/8216-i-could-have-been-dead-if-the-canterbury-urgent-care-centre-was-closed-says-heart-attack-survivor/story-30202431-detail/story.html#cxiTaP4yGBQygs65.99


CHEK Concern for Health in East Kent was first established in 1996 to save the Acute Hospitals in East Kent from being down graded, especially the Kent and Canterbury Hospital. We succeeded at that time in saving the Kent and Canterbury Hospital, but it was a long expensive battle.

Now in 2017 it seems that we need to fight all over again. If we lose the Kent and Canterbury or another of our Hospitals we fear for the safety and quality of the Health services patients in East Kent will receive.
We need to fight and need money for leaflets other communication and for legal advice.
We are campaigning for a new hospital with much-needed mental Health beds social care facilities and a new Medical school to train Doctors. This coupled with the Medical training of other Health care professionals in our universities in Canterbury will make sure we can give the best health care to our patients here in East Kent
The Kent and Canterbury has Kept me alive through my 36 years of being a cancer patient, and I want to give something back to those brilliant staff who looked after me so other patients will benefit.



A day of booking up hotels I have meetings and speech’s that warrant me staying away from home so we can mix a couple of days sight-seeing as well.

Ray left it all to me so I have to keep making sure I have all the details right I would never live it down if I slipped up.

The dog has to go into the kennels and the is almost as dear as our hotel.

I had fun anyway.

Julie Sapey’s B & B’s Charity Ball on 12 May at Sprowston Manor. Julie is the daughter of one of our patients who attends our Norwich group  Julie’s mum was also diagnosed with mesothelioma from washing her husbands clothes. 

This charity ball is raising funds for the Norfolk & Norwich Lung Cancer and Mesothelioma support group and supporting Priscilla Bacon Lodge Support Group, it is being held at the beautiful Sprowston Manor only a few miles away from central Norwich The ball has been running for several years now and has grown from strength to strength. Brian Wallis Mesothelioma UK Ambassador will also be attending.

Then on the Tuesday I will go to the Norwich group  support meets at the Offices of Ashtons Legal so it is a busy weekend but we have built-in time to sightsee Norwich. We haven’t been there for years.

All that is in May and I have April to  get through yet I will have lots to blog about




A Diary Of A Mesowarrior Living With Mesothelioma– A Brilliant Meso Video, A shocking Report of Asbestos and Children and My Trial Result in The Lancet #Mesothelioma #Asbestos

Watch Peter Szlosarek Explain Mesothelioma so well and he even mentions me and my result although he doesn’t say my name but we all know who he is talking about

This has been a hectic day with Asbestos reports sent to me that had to be shared .

First one was last night the report came through that I find so hard to accept.

Pupils ‘hosed down’ for asbestos and four other key points on school buildings heard by MPs

You could never believe this could ever happen but it has.

A former headteacher has told MPs how his pupils had to be “fumigated” and “hosed down” by the emergency services amid fears they had been exposed to lethal asbestos fibres. Phil Keay, former head of Hetton School in Sunderland, said his students were forced to go through a “fumigation van” to be “de-dusted” after asbestos came loose in the school due to high winds. Mr Keay gave the startling account when giving evidence to the Public Accounts Committee on the issue of deteriorating school buildings on Monday. It comes just weeks after a Government report found that asbestos in schools was still a “serious” problem, and a potential threat to children’s health. Pupils were ‘de-dusted and cleaned’ Mr Keay described how strong winds had lifted ceiling tiles made of asbestos, sparking fears that the deadly material may have contaminated the wider school before the school was rebuilt last year. “Students had to go through a fumigation van – the emergency van – to make sure they were de-dusted and hosed down and cleaned. It really was that serious,” he said. “Obviously, parents were informed, the emergency services and so on. But it was not a building that was fit to have children in for several years prior to its closure.” According to the Health and Safety Executive, asbestos is responsible for more than 5,000 deaths a year with exposure leading to possible lung cancer, such as mesothelioma, which is “always fatal”. Symptoms of having inhaled the dangerous fibres may not appear until 40 year later, however. Meg Hillier, Labour MP and chair of the Public Accounts Committee, described the evidence as “compelling and scary”. Also giving evidence, Mike Green, Director of Capital at the Education Funding Agency (EFA), said the only real way of completely dealing with asbestos was to “rebuild the school”. According to building surveys carried out by the EFA, Mr Green said, 85 per cent of schools have asbestos of some sort and he added that HSE guidance says to “leave it and to manage it”. ‘Significant cause for concern’ But the Government’s own report found that a fifth of schools were “not fully compliant” with proper asbestos procedures, with around a million children at risk of exposure. The report also found that 100 schools were considered to be a “significant cause for concern”. MPs were taking evidence as part of an inquiry into the state of the school estate, after a National Audit Office report found that too many schools were being left to crumble. More than £6 billion is required to bring schools up to a satisfactory standard, while a further £7 billion is needed to bring them up to a good standard. Amyas Morse, head of the NAO, said “significant challenges remain” in improving the quality of school buildings. Get daily news updates Subscribe to the newsletterSign up today Subscribe to the National Newspaper Of The Year Find out more by Taboola Promoted Links Explore MoreScale your cloud servers on demand and pay as you useFasthosts InternetUndoWhere to Meet Great Singles Over 50 in KentEliteSingles.co.ukUndo

Read more at: https://inews.co.uk/essentials/news/education/clear-decline-quality-english-history-teachers/

This really must be looked into so many people have campaigned for the safety of our schools, for proper high quality surveys. I pray they come to their senses now and make our schools safe. Can you imagine the fear these children and their families are going through. 20/50 years of waiting to see if the Asbestos fibres have got into their Lungs or Stomach. If you think we are exaggerating then go to a Chemotherapy ward at your hospital and see what Mesothelioma means to a person, How hard it is to breath and the dreadful pain we suffer.

             Have written a great Blog today

Asbestos has been disturbed at schools in a way that could affect the health of staff and pupils on at least 90 separate occasions in the last five years, Schools Week can exclusively reveal.

Although all forms of the deadly substance have been banned as building materials for decades, it is found in about 85 per cent of schools – and was reported to councils as having been “disturbed” on 93 occasions over five years, meaning “possible exposure” to teachers, builders, caretakers or pupils between 2011 and 2016, according to Freedom of Information requests.

Campaigners say these accidental disturbances call into question the government’s claims that the presence of asbestos – which causes several aggressive forms of cancer – in schools is safe if not disturbed.

At one school, balloons released during a science experiment knocked asbestos in the ceiling to the floor – forcing all teachers and pupils to change their clothes. In another, a Second World War mask pupils held to their faces was found to contain crocidolite, the most lethal blue form of asbestos.

A spokesperson for the National Association of Head Teachers (NAHT) said teaching unions were joining forces to call for the proactive removal of asbestos in as many schools as possible, and to ensure all staff were properly trained about its handling.

“How can you ever guarantee that asbestos is not going to be disturbed?” asked Russell Hobby, general secretary of the NAHT.

“What might be safe in an office is not suitable in a school; there are footballs being kicked and teachers pinning into walls.”

Hobby added that the Department for Education (DfE) was “simply not taking the risk of asbestos in schools and academies seriously enough”.

A National Audit Office report released last month found asbestos was a “potentially dangerous issue” in most schools, and warned it could be disturbed by “unruly” pupils or teachers attaching work to walls.

The FoI requests to councils revealed asbestos had been disturbed in 51 schools over the past five years – a figure campaigners described as “the tip of the iceberg”, since many teachers do not recognise asbestos when they find it.

In Lancashire, primary school teachers rummaging in a store room found damaged asbestos around a pipe. An administration officer in Milton Keynes similarly “disturbed asbestos pipe lagging” in a cupboard while moving archives.

Meanwhile, a contractor working “in breach of the Health and Safety at Work Act” disturbed asbestos at a Cambridgeshire primary school. Another “put his foot through the ceiling into the empty classroom below” out of school hours.

One school even had to evacuate its premises. Whiston Academy in Rotherham was forced to move into another building in 2013 after refurbishment works “identified asbestos in the ceiling”. Pupils could only return after air safety tests had been carried out.

The Health and Safety Executive, which sets asbestos regulations and describes it as “the hidden killer”, holds that “as long as asbestos is in good condition, well-managed and unlikely to be damaged or disturbed, it is not a significant risk to the health of teachers and pupils”.

Nevertheless, councils have paid out more than £10 million in compensation claims to teachers and former pupils for exposure to asbestos over the past five years.

Almost 250 staff and former pupils made claims for asbestos exposure between 2011 and 2016, with just under half (48 per cent) winning compensation. The claimants all had mesothelioma, a cancer which develops as a result of asbestos exposure.

Among the claimants was an ex-pupil in Devon who, along with four school staff members, said they had been victims of negligent management of asbestos at school. All but one member of the group won their case.

Last month Lucion released an article outlining the key role SEM (Scanning Electron Microscopy) analysis can play in the ongoing management of Asbestos in schools, stating that most teachers and school staff are not directly involved in managing the buildings or in carrying out repair or maintenance work.     Read all the Blog here http://www.lucionservices.com/latest/staff-and-pupils-exposed-to-asbestos-on-more-than-90-occasions/

At Last the Lancelet has published my Trial MK3475-28

Clinical safety and activity of pembrolizumab in patients with malignant pleural mesothelioma (KEYNOTE-028): preliminary results from a non-randomised, open-label, phase 1b trial



Malignant pleural mesothelioma is a highly aggressive cancer with poor prognosis and few treatment options following progression on platinum-containing chemotherapy. We assessed the safety and efficacy of pembrolizumab (an anti-programmed cell death receptor 1 [PD-1] antibody) in advanced solid tumours expressing programmed cell death ligand 1 (PD-L1) and report here on the interim analysis of the malignant pleural mesothelioma cohort.


Previously treated patients with PD-L1-positive malignant pleural mesothelioma were enrolled from 13 centres in six countries. Patients received pembrolizumab (10 mg/kg every 2 weeks) for up to 2 years or until confirmed progression or unacceptable toxicity. Key eligibility criteria included measurable disease, failure of standard therapy, and Eastern Cooperative Oncology Group performance status of 0 or 1. PD-L1 positivity was defined as expression in 1% or more of tumour cells by immunohistochemistry. Response was assessed based on investigator review using the Response Evaluation Criteria in Solid Tumors (RECIST; version 1.1). Primary endpoints were safety and tolerability, analysed in the all-patients-as-treated population, and objective response, analysed for the full-analysis set. This trial is registered with ClinicalTrials.gov, number NCT02054806, and is ongoing but not recruiting participants.


As of June 20, 2016, 25 patients received pembrolizumab. 16 (64%) patients reported a treatment-related adverse event; the most common adverse event were fatigue (six [24%]), nausea (six [24%]), and arthralgia (five [20%]). Five (20%) patients reported grade 3 treatment-related adverse events. Three (12%) patients required dose interruption because of immune-related adverse events: one (4%) of 25 each had grade 3 rhabdomyolysis and grade 2 hypothyroidism; grade 3 iridocyclitis, grade 1 erythema multiforme, and grade 3 erythema; and grade 2 infusion-related reaction. No treatment-related deaths or discontinuations occurred. Five (20%) patients had a partial response, for an objective response of 20% (95% CI 6·8–40·7), and 13 (52%) of 25 had stable disease. Responses were durable (median response duration 12·0 months [95% CI 3·7 to not reached]);

two patients remained on treatment at data cutoff.   But only me with Complete Response I find that so sad and this is where my survivor guilt started.


Pembrolizumab appears to be well tolerated and might confer anti-tumour activity in patients with PD-L1-positive malignant pleural mesothelioma. Response durability and efficacy in this patient population warrants further investigation.





A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Stop the Closure of Urgent Care Centre at K&C Hospital

I had a phone call this morning with Peggy Pryer updating me on the meeting held yesterday. Peggy has said — Considering CHEK had organised the meeting in less than two weeks, the committee was reasonably pleased with the attendance ( over 300). We had relied on the local press and media for publicity and the meeting had been mentioned by both, not as much as we had hoped but due to very limited funds we had to depend on free publicity. What did help no doubt was the fact that we had used social media to get publicity. —-


As part of the proposals, the K&C could lose all its specialist services to either Ashford or Thanet, with an additional threat to its acute services as the Trust looks to cut 300 beds across Kent and Medway.

The future of its urgent care centre  remains in doubt following speculation the east Kent hospitals trust is set to close it temporarily amid a staffing crisis.

It would mean heart attack and stroke patients being diverted to the QEQM Hospital in Margate or Ashford’s William Harvey.

Trust chief executive Matthew Kershaw last week denied staff had been told the centre was shutting this spring, contrary to what employees have told KentOnline.

But the fears surrounding healthcare in the city have sparked a meeting today, which is being organised by the recently reformed Concern for Health in East Kent (CHEK).

The group has previously fought for the future of the K&C and stopped it being downgraded at the turn of the century, but could not save its A&E department.

It has now been revived following the release of the Trust’s new sustainability and transformation plan (STP), which will likely see specialist services relocated to just one of the Trust’s three main hospitals – speculated to be the William Harvey.

People worried about the future of the NHS in Kent gathered in Canterbury to question health bosses about proposals they fear could lead to the loss of hundreds of beds. Campaigners organised the public meeting after claiming they were being kept in the dark. Nashreen Issa was there.


ray heart.png

He is smiling again here but the story could have been so different if he had to travel further.

We have had to use this acute ward for Ray when he had his heart attack.

We called 911 on the orders of the Receptionist at Medical Centre as Ray was having bad pains in the chest after a dog walk.

First the Paramedic appears and starts treatment and sets up the lounge like a hospital ward with all the machines measuring everything.

Clot busting drugs are given, If he was having a stroke they couldn’t give the drug as a scan would need to be done first.

He was then driven to the hospital in the Ambulance but as the Ambulance comes from Dover the crew have to use a SAT/Nav that doesn’t show the 6ft wide roads so we go up a Church Lane which is 6ft wide it is always blocked by traffic trying to pass each other.

I never realised before what a bumpy ride it was in an Ambulance. We did get to the hospital and Ray was put into a room where he had more tests. From there he went to the Acute holding room (they have closed that now) where he stayed until they could find a bed in Taylor Ward. This ward has 10 beds for heart patients  this has been reduced to 5 beds but often finds itself with 8 and so short of nurses.

He did go to Ashford for his Stents to be fitted but at least that wasnt in emergency mode. I was in chemo at the time so I had to travel so as to visit

Now I explain all this because if they close the Acute Ward that will mean a longer ride to Ashford.. From here in Seasalter the only way is to go to the Faversham turn off then travel on a roads that are single lane and so very dangerous to travel at speed.– 37 min 18.9 miles. If you had a straight run.

So why would you want to do that when K&C Hospital is in the middle of East Kent it would be better to set the Acute Ward in K&C. The road and rail network is good Don’t turn it into a cottage hospital.

In an ideal world the only real way to sort the problem out is to have a state of the art hospital built-in Canterbury  with a Medical School  built next door to it so as to help the shortage of all the Health Care  professionals — but that is an ideal world

Stop the Closure of Urgent Care Centre at K&C Hospital

150,000 plus residents of Canterbury will have to travel a considerable distance to find urgent help.
The hospital has slowly been ‘stripped back’ and this appears to be another step towards the Trust achieving the closure that was threatened in the 1990s.
As pointed out by a previous campaigner in Thanet, in relation to losing local urgent care services – “our hospitals in surrounding areas are already under enough strain” and that is without having to accommodate for the whole of our area as well.

Please sign the Petition


A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – As Sepsis is in the news I have told my story here.


As Sepsis is in the news I thought I ought to write about my experience of this.

I was attending the Royal Marsden every three weeks in my trial and over many months  they took my blood, flushed and then I would see the Doctor who would wait for the results of my bloods and if I passed he would order the drug for that session.

I then went for a coffee and the waiting began for the drug to come to the ward for my treatment to begin..

Over some months I would go woozy in the Restaurant and I used to hold my head in my hands until the feeling wore off.

I did tell the Doctors as I would always end up being sick in the loo and we thought it might be because I had set off so early and so my blood sugars dropped. I used to make sure I ate a piece of toast after my bloods were taken

This kept happening until one session when after the bloods were taken  I got in the lift and then I did what I called my dying swan over the banisters of a stair case.

Nurses help me to a chair and I recovered.

Another time I was sitting in the restaurant chatting to a mesowarrior and his carer and my dying swan act really took hold.

Sitting at the table drinking my coffee and chatting the people in the room were going further and father away the sounds becoming a muffle. I felt hot and sweaty and sick all rolled into one.

Lynne (my Friend) went back to the ward to get help and everyone was in a panic.

People were talking to me but I couldn’t really understand what they were saying. I was taken in a wheel chair back to the ward. Where I came round and cooled down.

I was put into a bed and it was found that Sepsis was in my blood. They grew the blood culture over night and yes I had Sepsis.A young nurse had mentioned my Pic Line and said it does sometimes grow in that so the Picc Line was taken out and tested and yes There was the bug living in there.

I had a whole 5 days of very strong new antibiotics as Sepsis has become so hard to treat..

I hadn’t realised just how serious this was but Ray said everyone else was very worried about me.

So as this is in the news  I urge anyone who feels faint after a blood test please seek help.

If you have a PICC Line make sure the District nurses do come in to clean it. Apparentley the bug loves plastic so anyone with a new hip has to be careful as well.

A watchdog has urged doctors to treat suspected cases of sepsis within an hour, amid fears the warning signs are too often missed.

Sepsis – a life-threatening complication of other infections – should be dealt with as an emergency just like a heart attack, according to National Institute for Health and Care Excellence guidelines.

What is sepsis?

Sepsis is a rare but potentially fatal condition, which can cause multiple organ failure.

It happens when the body’s immune system goes into overdrive as it tries to fight an infection.

This can cause more problems than the initial infection, as widespread inflammation damages tissue and interferes with blood flow.

It can be triggered by an infection anywhere in the body, but most commonly in the lungs, urinary tract, stomach and pelvis.

Other areas with infections that can be associated with sepsis include the appendix, gallbladder, bile ducts, skin, brain, bones or heart – and even flu can trigger it.

What are the symptoms of sepsis?

Early symptoms include fast breathing or a fast heartbeat, high or low temperature, chills and shivering. Sufferers may or may not have a fever.

Severe symptoms can develop soon afterwards and include blood pressure falling low, dizziness, disorientation, slurred speech, mottled skin, nausea and vomiting.

Who is at risk of sepsis?

Anyone can develop sepsis after a minor infection or injury, with 260,000 estimated cases a year and tens of thousands of deaths.

But the most vulnerable people are young children, the elderly, people with a medical condition or treatment that weakens their immune system, people in hospital with a serious illness, people injured in accidents and people who have just had surgery.

Is sepsis the same as blood poisoning?

Sepsis is often called blood poisoning or septicaemia, but they are not the same.

You can get sepsis and it can affect multiple organs without having blood poisoning or septicaemia.

You can also get sepsis from viral or fungal infections as well as bacterial ones.

What is the treatment for sepsis?

Treatment involves antibiotics, intravenous fluids and oxygen if levels are low, with three tests also likely to be carried out.

But severe cases or septic shock – dangerously low blood pressure – may require admission to an intensive care unit, which can help keep the body going while staff focus on tackling the infection.

How likely is sepsis to kill?

Sepsis is treatable if identified and treated quickly, with most sufferers enjoying a full recovery with no lasting problems.

But up to four in every 10 people ill with severe sepsis die from the condition, and an estimated six in 10 dying from septic shock.


A Diary of a Mesowarrior Living With #Mesothelioma #Asbestos -The results of my scan


It wasn’t like this yesterday as the rain came down and it was so murky.

As we set off to the Royal Marsden it blared on the radio that traffic was at a halt on the M25 at Junction 6 and queuing back to Junction 4 that it would take an hour to get past as there had been an accident. Then there was a warning the M20 had an accident. Oh no!!

We met up with the first queue as we came down the hill on the A249 as people were trying to get onto Maidstone. As we came onto the M20 it was running well but then Oh no we found the Queue.

From then on we travelled well but it kept saying about the hold up. Gosh don’t they check with the road cameras to see how the traffic is flowing.

So we arrived at the hospital and found a parking space.

Bloods were soon taken and I was then seen by the Doctor. He was new to me but very good as he examined me really well.

He said my Scan was so good absolute no more changes In remission still.

He said it amazed him at the reaction in the scan meet everyone was so pleased as they looked and talked about my scan.

He asked me what medicines am I taking and crossed everything off except the Paracetamol. He laughed when I said  I’m buying my own now and doing my bit to save the NHS some money. They are charged too much for paracetamol and I can buy them so cheap.

He listened to my breathing and said there is a difference between the right and left Lung. It is still very damaged.

He wants me to go under my GP for the edema as it has lasted far to long. It isn’t my heart and so its Chemo damage. He feels the GP can help.

The Peripheral Neuropathy  is nerve damage so will not repair.

BUT!! I do not complain as I have my life back.

We came out feeling so happy with another 2 months in front of me.




A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos -My Speech at Kent and Medway Cancer Alliance Engagement Event

great danes

Today we have been to the Kent and Medway Cancer Alliance Engagement Event at the Mecure Maidstone, Great Danes Hotel, Ashford Rd,  where I had been asked to give my story but I was amazed to find I was the key speaker.

All those wonderful Doctors and Nurses Clinical, Research Radiographers GP’s just about every department of the NHS was represented and they all listened to the Patient. I was so honoured and so nervous.

Ian Vosden Quality Improvement Lead at NHS England  Opened the meeting

Matthew Kershaw

Chief Executive, East Kent Hospitals University NHS

Foundation Trust, Chair of Kent and Medway Cancer


Dr Henry Taylor

Consultant in Clinical Oncology, Co-Chair Kent and

Medway Cancer Alliance

They spoke about the new Alliance Plan and lead the delivery of the transformation required to implement the Cancer Taskforce strategy locally so they need to engage land involve our local stakeholders and to begin on going engagement that was why we had been invited to the days meeting.

A bid has been submitted for funding to develop diagnostic hub which will be supported by the National Cancer Team.

After a coffee all of us returned to the room and there were tables set  out as working groups. as 4 sections we could join. Prevention, Early Diagnosis,  Living with and beyond, Treatment and care.

Each table put their ideas forward and discussed and we came up with a final list each.

It was so interesting Ray and I joined the Prevention and Early diagnosis workshops.

These groups are being formed right through the NHS and if you really want to make a change in the NHS please join in at your region network.

Understand How we can minimise our risk to cancer, seek help with concern about early signs and symptoms, be offered options of different needs, have equality communities, have cancer signs and symptoms identified promptly and fast tracked through acccesabilty, diagnostic services so they rapidly access the appropriate care, be fi=ully included in decisions about our treatment, be supported and take an active role in managing our own care, have cancer outcomes in line with those of the best systems in Europe, have care provided in a integrated and patient centred way.

The meeting came to an end and we had to say our goodbyes but seems we have joined in a very exciting group and I look forward to more meetings.


A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Never know what you see at the station

Off to the station to buy tickets for a very early journey on Monday as I have been invited to talk at the British Lung Foundations Breakfast Meet.


Delegate List Mesothelioma Patron’s Breakfast 8am

British Lung Foundation:

Dr Penny Woods CEO

Alison Cook – Director of Policy & Communications

Jason Cater – Director of Fundraising, Marketing & Digital

Ian Jarrold – Head of Research

Nathan Bennet – Policy & Public Affairs Officer

Shemina Sayani – Partnerships Manager

Joelle Fitch – Corporate Partnerships Executive

Mavis Nye – Mesothelioma Survivor, Advocate and Author

We have to get up early and travel on the Fast Train hope we keep awake

 We arrived at the carpark to a Jaz Band playing The Orient Express was in town.

The engine was the Diamond DieasleEngine built in 2007

The naming of 67 029 as Royal Diamond at Rugeley Trent Valley station on Friday 12 October 2007 commemorated the diamond wedding anniversary of Her Majesty the Queen and His Royal Highness the Duke of Edinburgh. At this stage, the idea of non-standard nameplates was forgotten, and a nameplate in the usual locomotive position was provided, and this policy was followed again when 67 015 was named David J.Lloyd at Gobowen on 16 May 2008. By July 2008 the other three original W&S-liveried locos had also received names, from of a competition organised among primary schools in Wrexham and Shropshire. Sadly, the Wrexham & Shropshire operation was closed down in April 2011, and the locos and rolling stock have found further use with Chiltern Railways. The locomotives have lost their W&S branding, but retain their silver livery.
At the beginning of 2012, three 67s were painted blue, and at the end of March took over the working of the Cardiff – Holyhead expresses from Class 57/3 locos.
March 2012 saw 67 026 given a silver livery to haul the Royal Train during the Diamond Anniversary of the Queen’s reign.

A lucky little boy was having a tour of the engine but I was enthralled with the Pullman coaches remembering when we travelled on the train as a Christmas present from my Son and DIL.  It was a brilliant Sunday and I loved every minute of it.

Louis didn’t like the Tuba but what tickled us was the fact the man in the ticket office didn’t know why it was there he thinks they have started the Oyster and Champaign trips again.

It was a surprise you never know what you will see when you go to town