A Mesowarriors Diary Living with #Mesotheloma – Bacon, Sausages and Red Meat Like Asbestos ??


Yes more rain all night long and all this morning but now the sun is beaming again.

I love living by the sea when the sun is shinning and you just hope you can stretch the summer out more before the fogs and winter weather moves in.

I feel very well again with all the itching under control in fact on the torso it is doing very well with The coconut oil keeping the skin soft and beating the Keytruda skin drying.

Im drinking spring water with fruit flavouring and so Im drinking more. This means an extra visit to the bathroom though in the middle of the night. The dog thinking, I have got up, runs with me and I have to make him run back He can’t read the time.

Mind you the lad reads my mind. How does he know that I was going to give him a shower yesterday so ran away and hid. There was no clues that I was going to shower him before myself. He does read my mind and this has been proved so many times.

Bacon is fried up in a pan in a kitchen in this photo illustration in Golden, Colorado, October 26, 2015. REUTERS/Rick Wilking

There has been a lot of discussion over the last few days about a report that

Eating processed meats like hot dogs, sausages and bacon can cause colorectal cancer in humans, and red meat is also a likely cause of the disease, World Health Organization (WHO) experts said.

The review by WHO’s International Agency for Research on Cancer (IARC), released on Monday, said additionally that there was some link between the consumption of red meat and pancreatic cancer and prostate cancer.

IARC classified processed meat as “carcinogenic to humans” on its group one list along with tobacco and asbestos, for which there is “sufficient evidence” of cancer links.

Each 50-gram (1.8-ounce) portion of processed meat eaten daily increases the risk of colorectal cancer by 18 percent, the agency estimated.

A 50-gram portion would be the equivalent of eating one hot dog or two slices of bacon. Americans eat about 21.7 grams of processed pork per day, according to a 2011 National Health and Nutrition Examination Survey.

Red meat was classified as probably carcinogenic in IARC’s group 2A list, joining glyphosate, the active ingredient in many weedkillers.

The IARC examined some 800 studies during a meeting of 22 health experts earlier this month.

“For an individual, the risk of developing colorectal (bowel) cancer because of their consumption of processed meat remains small, but this risk increases with the amount of meat consumed,” Dr Kurt Straif of the IARC said in a statement.

Im finding this very hard to take as Ok Processed meat might cause cancer but to liken it to Asbestos I dont undersatnd.

Meat like cigarettes can be avoided by people and so prevent their cancer but Asbestos we didnt that chance. and still dont.

We never knew the dangers therefore it could not be avoided.

We might smell meat, but it doesn’t get drawn in through our airways  to land in our Lungs and lay dormant.

But what it does prove is Chemicals play a huge part in cancer and we do need to get back to  natural world. So yes you can avoid processed meat by cooking from scratch and cooking a healthy diet.

Lets teach our children catering at school again but also we need to teach people that a meal is easy to cook. There are enough cooking programs on the Telly lets follow them and make nice wholesome meals. Lets slow the world down and make time.


I collect many Asbestos pictures from Facebook,Twitter and Linkedin they fascinate me just where asbestos was used.

Asbestos Voice has shown a classic one today  cement pipe

Can you imagine how water passing through these pipes will wear the cement down and so releasing minute fibres into our fresh water system.

Digesting asbestos causes peritoneal mesothelioma.  The peritoneum is a protective membrane that surrounds the abdomen, or belly. It has two layers, and mesothelioma can develop on both. The parietal layer covers the abdominal cavity, while the visceral layer surrounds the stomach, liver and other organs of the abdomen. Together, the layers support the abdominal cavity as a whole and the organs within it.

It is an easier one to treat as Operation is easier than the Lung but then if iit returns it has a bigger area to travelover as all our organs a re covered with a lining.

They want all asbestos out of our buildings but where it is hiding will be the puzzle for the surveys to find.

Rays Blog https://mesoandme.wordpress.com/

A Diary of a Warrior Living With Mesothelioma — I was reminded of Nancy Tait, Lou has published my story in Australia on her Petition

I have been living a quiet life involved in my families lives. Buying a hose and moving it is so great to be asked to be involved.

Emails of houses “What do you think” Love it when my opinion is asked for, to be needed. My whole world revolved around them for a moment.

Exciting times. The Motorhome will have a new drive to park on when we visit.

Then I have been reading so much about rules and regulations of Asbestos and working with it. That is a mind field.

Reading a lovely Story of a true fighter. We have met up with so many fighters since starting this journey. People I admire so much but this lady I can see a little of myself in her.

Maybe it is the courage that you find when You have a terminal illness that you didn’t do anything to cause it.You played no part, People of the past have let you down and allowed Asbestos into our lives.

Nancy Tait

Tait had steely determination and in 1996 became an MBE
Tenacious campaigner for the victims of asbestos diseases

Nobody achieved more than Nancy Tait, who has died aged 89, in raising awareness about the hazards associated with asbestos exposure. Driven by her own search for justice she campaigned for victims of asbestos diseases and helped more than 3,000 families pick their way through a legal and scientific labyrinth.

Nancy’s husband, Bill, a Post Office engineer, had died of mesothelioma in 1968. At that time, the link between asbestos and mesothelioma, a fatal cancer, had only recently been established, and Bill had not worked directly with asbestos, although he had been exposed to it. The Post Office denied that he had an industrial disease and refused to accept liability – a stance that provoked what one admirer described as her “genteel bloody-mindedness” into action.

She was born Nancy Clark, the daughter of a compositor and educated at Enfield county school for girls. She started her career in the civil service and, during the second world war, was assigned to the Post Office, where she met Bill Tait. They married in 1943.

After the war she tried teaching, but found the reality less satisfying than the ambition. Later she worked for the Patent Office and London University, all the while honing her administrative skills. After Bill’s death, Nancy’s campaign for recognition of her husband’s illness as an industrial disease widened into a 40-year-long battle for justice for the many other casualties of Britain’s industrial past. Nancy’s tenacity led the journalist Geoffrey Lean to describe her, in 1999, in the Independent as “a latter-day Miss Marple” who combined “the fictional detective’s benign appearance with incisive shrewdness, gentleness of manner with rugged determination”.

She canvassed medical opinion, and lobbied union leaders, MPs and civil servants. She never gave up, thus making a thorough nuisance of herself to the asbestos industry and government. One internal DHSS memorandum in 1976, stated: “Normally officers of the department would be disinclined to meet somebody like Mrs Tait who probably wishes to pursue her vendetta against the department. However, in view of her sponsorship and determination, it is considered that it would cause more harm to the department’s reputation if we avoided meeting her.”

Nancy’s self-published booklet Asbestos Kills (1976) generated more media interest. The award of a Churchill fellowship enabled her to visit factories, mines, scientists and government departments across the globe. In 1978 she established a victim support group, the Society for the Prevention of Asbestosis and Industrial Diseases (Spaid), which lobbied for tighter asbestos controls.

Nancy worked indefatigably, representing families of asbestos victims at inquests, and, before social security tribunals, in appeals against the DHSS’s refusal to meet claims for industrial disablement benefit. In the 1980s Spaid, by then the Occupational and Environmental Diseases Association (Oeda), purchased its own electron microscope and employed lab technicians as Nancy recognised the need to have technical back-up to support her arguments.

Nancy met with formidable opposition, indeed derision from the asbestos industry. But on all the big issues – low-level exposure causes mesothelioma, white asbestos (chrysotile) is not “safe”, and asbestos dust causes lung cancer in the absence of asbestosis – she was right.

She was appointed MBE in 1996 and awarded an honorary doctorate from Southampton University in 1999. In 2005 the Institution of Occupational Safety and Health conferred on her the Sypol Lifetime Achievement Award.

The struggle for funding meant that Nancy had to close Oeda in 2008. She also recognised the limits of her own frailty, but she refused to accept that she had “retired”. She is survived by her son, sister and brother.

• Nancy Tait, campaigner, born 12 February 1920; died 13 February 2009

Some say Lou Williams and I are of the same bred as we fight and conquer Mesothelioma with Keytruda.

We battle away to get this drug into the Drugs list.both here and Australia

Lou has a Petition running in Australia to get the drug on the free list. I have mentioned before she is paying for the drug.

I have given her my story to back this campaign as if Lou wins maybe something can happen Uk to get the drug Fast Tracked through the Phase 3 trial. There are other drugs for those that fail Keytruda but patients should have a chance  of the drug. We need hope and My living 16 months 37 infusions next week has to show that Lou and I are doing well when there was no more treatments for either of us.

So please sign https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug/u/13927352?recruiter=55915192&utm_source=share_update&utm_medium=facebook&utm_campaign=facebook_link

Rays Blog https://mesoandme.wordpress.com/

A Mesowarriors Diary Living with Mesothelioma Im very worried about the NHS and Mesothelioma Treatment

I am a Mesowarrior.

Ray has been republishing my book as we have been selling from time to time and the money going to Mesothelioma Uk every bit helps.

We had to go to Westmalling Research Station as the TSSG Lung Tumour Specific Site meeting was taking place in these lovely surroundings.

I only have to attend twice a year but I do enjoy being involved with the Medical staff of the East Kent NHS.

These meetings are all very transparent and can be read http://www.kentmedwaycancerguide.nhs.uk/resource-library/lung-tssg/

One by one everyone arrived and lunch had been donated which was all very nice and it was great to meet up with familier faces as I have been involved for 6 years now.

We went through matters rising and then a discussion began

Well I listened and I realised that things are getting so very hard for the NHS. Over the years I have seen such a decline in the high spirits of the Doctors and nurses. They don’t talk so much of Trials and procedures but of Targets and Budget and a day to day struggle.

A talk on the collection of data was shown that the figures are not being kept by the system correctly .

The Doctors are doing their job but one system isn’t talking to another. .All this was doing so well a couple of years ago but the systems keep changing. I really don’t know how the Doctors can keep working when things keep changing.

Its all crazy The NHS seems to have grown so big it is impossible to keep track.

Government involvement seems to be that they are wanting to head to Privatisation that they are loosing sight of what the NHS is all about.

It was a business meeting rather than a day to day catch up on Lung treatment.

Then when they spoke about treatment Mesothelioma came up and I can’t believe my ears. They seem to have given up on us.

Operations on Mesothelioma is frowned at. with one doctor talking about the fact we patients get a payout and so they say if not operated on here Ok we will pay for the operation in the US.

This is not true as patients go to London and have the operation there. We have many mesowarriors that have had operations either

Surgery for pleural mesothelioma

Surgery for pleural mesothelioma can be done either to help prevent or relieve symptoms or to try to remove all of the cancer. Unfortunately, these tumors often have spread too far to be removed completely. Sometimes, the surgeon might not be able to tell the full extent of the cancer – and therefore which type of surgery might be best – until the operation has started.

Extrapleural pneumonectomy (EPP): This is an extensive operation, but it may offer the best chance to remove all of the cancer for many patients. It’s most often used when the surgeon thinks a cure is possible – typically in patients with resectable epithelioid mesothelioma that has not spread to the lymph nodes.

In this operation, the surgeon removes the lung on the side of the cancer along with the pleura lining the chest wall on that side, the diaphragm on that side, the pericardium (the sac around the heart), and nearby lymph nodes. The diaphragm and the pericardium are then reconstructed with man-made materials.

This is a difficult operation that is done only by experienced surgeons in large medical centers. You must be in good overall health with good lung function and no other serious illnesses to withstand this surgery. Several tests must be done beforehand to be sure you’re healthy enough for this surgery. Major complications can occur in as many as 1 in 3 people who have this operation.

Pleurectomy/decortication (P/D): This is a less extensive operation in which all of the pleura lining the chest wall (on the side with the cancer) is removed, along with the pleura coating the lung on that same side. The pleura coating the mediastinum and the diaphragm is also removed. The lung and diaphragm are not removed.

In a slightly more extensive version of this operation (known as a radical or extended P/D), the diaphragm and/or pericardium are removed as well.

This surgery can be used to try to cure some early cancers, but it can also be used as a palliative procedure to relieve symptoms if the entire tumor can’t be removed. It can help control the buildup of fluid, improve breathing, and lessen pain caused by the cancer.

Debulking (partial pleurectomy): The goal of this surgery is to remove as much of the mesothelioma as possible. In general, less tissue is removed in this operation than in a P/D procedure.

Possible side effects of surgery

The operations used to treat mesothelioma can have serious risks and side effects, although these depend on the extent of the surgery and the person’s health beforehand. Serious complications of EPP can include bleeding, blood clots, wound infections, changes in heart rhythm, pneumonia, fluid buildup in the chest, and loss of lung function. Most of these are less common with less extensive operations.

Because the surgeon must often spread the ribs during surgery, the incision will hurt for some time afterward. Your activity will be limited for at least a month or two.

Surgery for peritoneal mesothelioma

Surgical treatment of peritoneal mesothelioma can be done either to help relieve symptoms or to remove the tumor from the wall of the abdomen and digestive organs. As is the case with pleural mesothelioma, these tumors often have spread too far to be removed completely.

Debulking: The goal of this surgery is to remove as much of the mesothelioma as possible. Sometimes this means removing pieces of the intestine as well.

After the cancer is debulked (but before the operation is finished), chemotherapy may be given into the abdomen. This is called intraoperative chemotherapy. If the chemotherapy drugs are heated, it is called heated intraoperative (or intraperitoneal) chemotherapy or HIPEC. In either treatment, the drugs are left in for a short time, and the incision is closed after they are removed.

Omentectomy: The omentum is an apron-like layer of fatty tissue that drapes over the organs inside the abdomen. Cancers in the peritoneum often spread to this tissue, so it may be removed as part of surgery for peritoneal mesothelioma.

Surgery for pericardial mesothelioma

Surgery can remove a mesothelioma from the pericardium (the sac around the heart).

Surgery for mesothelioma of the tunica vaginalis

Surgery for mesothelioma of the tunica vaginalis, which covers the testicles, rarely cures this cancer. Most of the time surgery is done when the tumor is mistaken for a hernia. The surgeon attempts to treat a suspected hernia and only realizes the diagnosis after the surgery has begun. This kind of mesothelioma typically can’t be removed entirely.

For more on surgery as a treatment for cancer, see our document A Guide to Cancer Surgery.


We should at least be the ones to decide. It seems that the operations I have listed here are not carried out by our local hospitals nor are they discussed with the patient, maybe if young and fit Hey!! I was old and very fit and I have proved since that I had the strength for an operation.

There are options they should not be dismissed.

I talked about My experience with Keytruda and a Doctor said there are terrible side effects very bad.

I have no side effects I have not heard of one Patients that has had very bad side effects but who was I to argue as I don’t know what is going on in other hospitals with other drugs as I didn’t realise there were other drugs being trialled.

My Oncologists showed pictures of a man’s tumour in the neck. A huge tumour that had shrunk. the results are wonderful so why is there so much bad evidence.

I really felt we had gone backwards and if I was looking for answers at this point in time there would be none.

I go to conferences and listen to all that is done in research but feel that my own NHS is a cottage industry compared to what is going on out there. I don’t know the answer I really don’t Im only a patient but something has to be relooked at, In 6 years chaos is reigning.How do they turn this around?? The problem is to huge.

I even forgot to bring up the case of CNS Nurses  In East Kent as we have a CNS who is so stretched between 2 hospitals that she cant sit in with every patient and talk with them when 1st diagnosed. Patients dont hear what is being told to them properly as the shock of it all is so awful and your mind goes blank, then when we get out of the consulting room we have a thou send questions going through our minds.

.I was traumatized I think. How can an ordinary patient help these wonderful people, gosh if I feel so depressed about it what must they feel like working among it daily.

I want to get hold of Mr Cameron and sit him down and tell him to stop all this nonsense and stop wasting money and get to grips with what is happening.

Nye Bevan must be turning in his grave.

The NHS is a wonderful system that is envied around the world so we must hang onto it. It is sick and it to needs research and a cure.

Please find that cure and save it dont let the TTIP win


Please push for treatment from Clinical Trials with your Oncologist http://www.mesothelioma.uk.com/information-and-support/research/clinical-trials/

Don’t give up take your treatment into your own hands take control Mesowarriors be prepared to travel to the larger hospitals that have the trials in and please contact me if you need help mavisnye@yahoo.co.uk

Raymond‘s Blog 

I have been very busy over the past 3 days. Because of some technical issues I have had the enormous task of re publishing maves book. Because the original manuscript is missing and I only had some of it its been a mamoth task. I then had to edit it and after several attempts format it to the right format for publication.



A Diary of a Mesowarrior Living With Mesothelioma A day at the Royal Marsden For Keytruda drug

autumn roses

God Morning its the day after the Marsden which wasn’t to good.

That journey was great even if it was pitch black as we set off. Dawn arrived as we reached the M25 but everyone was driving along very well and we arrived early even though we had stopped for fuel.

I had my bloods taken early and was back in the waiting room where Lynn and Richard had also arrived so we had a chin wag. I could feel the wave of weirdness over coming me again. I sat with my head in my hands and then wanted to go to the loo. I got up and everything was going black. I looked at Ray and pleaded Help me. He came with me to the loo and I came back a bit enough to carry on on my own.

He was waiting as I came out and we walked back to my chair and I felt a bit better. The doc called me in and he said it was blood pressure.

I think it really must be to do with getting up so early never sleeping well on the Monday night before our visit and the worry of the day ahead.

Anyway I told him about the rash and itching all over my body. He said take the piriton more regular throughout the day. He looked at the rash at the top of my leg and said it was a fungus so he wrote a prescription out..

We will wait for the scan next time it is all so very routine now. After 36 visits and nothing new going on in pain etc we drift on.

We went off to the food hall and I had some toast and gradually the feeling went off it had been very warm and now I was cold but I did recover.

The long wait for the drug to be made up but soon I was having my dose of Keytruda and we set off for home early for a change.

Anyway the journey home was very good and we arrived home at 4pm which was just great. Using the cream my rash has been comfortable and the coconut oil is keeping my skin so soft so things are looking OK.

I was needing some exercise so we walked the dog round at 8.45pm and the evening air was refreshing and very pleasant The moon shinning down and not a cloud in the sky. Then the rain has been hammering down from the early morning

.Sitting in my Twitter feed was this

Excellent research being funded by at the – Dr Koh looking at MRI scanning in

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Its great that we have such funding as it takes pressure off the NHS and great they are thinking of Mesothelioma in such a high profile way.

Dr Dow-Mu Koh obtained his primary medical degree in Singapore (1989). Following further training in internal medicine and diagnostic radiology, he was awarded the fellowship of The Royal College of Radiologists (UK) in 1996. He was Senior Lecturer and Honorary Consultant Radiologist in the Cancer Research UK Clinical Magnetic Resonance Research Group, Institute of Cancer Research, and within the Department of Radiology at The Royal Marsden from 2001–07. He was appointed to the position of Consultant Radiologist in Functional Imaging at The Royal Marsden in January 2008.

Dr Koh’s current clinical and research interest is in the development and application of functional imaging techniques for tumour assessment. He has a broad interest in applying MRI, CT and PET imaging for clinical and functional measurements.

He has a particular interest in developing and evaluating diffusion-weighted MR imaging in the body (DWI):

  • to enhance and improve the ability to detect and characterise tumours
  • to monitor the effects of conventional and novel therapeutics.

He also has an interest in gastrointestinal, hepatic and renal malignancies.

In addition to his research, Dr Koh has also been invited to lecture on numerous conferences and courses, including the UK Radiological Congress, European Congress of Radiology (ECR), International Society of Magnetic Resonance in Medicine meetings (ISMRM) and the Radiological Society of North America (RSNA) meetings. Dr Koh was elected a fellow of the International Cancer Imaging Society (ICIS) (2007) and is currently an associate editor of the British Journal of Radiology.

Dr Koh has had numerous publications in peer-reviewed journals and textbooks. In 2009 he co-edited a book, Diffusion-weighted MRI: Applications in the Body, published by Springer.

We are so lucky to have such great people in our NHS and such dedicated Doctors. Its something all us Mesowarriors have noticed the passion they have for us and our care.

Rays Blog https://mesoandme.wordpress.com/

Raymond Nye

A Meowarriors Diary Living With Mesothelioma A lovely Sunday but a Fire at the 02 and Children Removing Asbestos Tiles REALLY ??

I have got the itching under control but now I have a fungus growing on the dry skin on my Bottom. Sorry to have to talk about such a personal thing but if down the line someone follows this blog and are on Keytruda they will know what can go wrong. Boy I feel down until I can find out tuesday what cream to use.

I have read this can happen when the Immune system is out I wondered if the drug was boosting mine up to much. I have read a USA forum and they say that some of them have a rest from the drug after 2 years and go back on it. I worry if they took me off of it they wouldn’t put me back on again.


Met up with a Lovely friend who has moved from Scotland to Kent and so we met up for a coffee I found it hard to lift the cup up and not knock it over myself. We had a lovely catch up as the last time we met was at Meso Uk Conference.

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Thais a sorry sight and a frightening one I do hope it isn’t serious  http://www.standard.co.uk/news/london/o2-fire-former-millennium-dome-evacuated-as-restaurant-blaze-fills-venue-with-smoke-a3093116.html?utm_source=dlvr.it&utm_medium=twitter

I love the dome although its now the O2 where so many concerts are held so many well known stars entertain.

Another sad story today was http://crazymainelife.blogspot.co.uk/2014/09/asbestos-and-maple-floors.html

I cannot believe that a parent could be so dumb as to allow themselves to pull up Asbestos tiles, where the asbestos is in the  bitumen adhesive even has asbestos in, but to let their children do it is beyond belief.

Floor Renovation 031 (1)

The blog is a year old so the harm will be going on in their body and wont show until they are 20/50 years older. I have left a comment of coarse.

The Mother says

And before anyone freaks out about the kids helping to remove them, Hubby is experienced in home renovations. He’s been working in this field of work for nearly 20 years, and we did our research to find out the risks before hand and we found out that unless we were grinding it up, it was fairly low risk and doing ONE floor was highly unlikely to cause anyone any damage. Most of these tiles were breaking up into good sized pieces and we got many that came up in strips of 2 or more tiles!

I had a picture…. but I accidentally deleted it thinking it was on the computer… but here’s one showing how important safety is! We couldn’t find any safety glasses, so we went for stylish instead.
—- Oh so that’s ok then so what about a mask and protective clothing she really is being very silly risking their lives like this.

Well the day has gone so quickly as we have been out with the dog in the warm sun it did end up very nice hope you have all had a great Sunday xx

A Dairy of A Mesowarrior Living With Mesothelioma- A Victory Announcement Of Asbestos In Schools

Today we have received great news that must be making Michael Lees so happy.

Michael Lees’ wife Gina was a nursery school teacher. She was exposed to asbestos at school and died of mesothelioma at the age of 51. It soon became clear in his investigation into his wife’s death that the lack of asbestos management and the resultant exposures of staff and pupils in schools is a national problem.  In the twelve years since her death he has campaigned tirelessly to make schools safe from the dangers of asbestos. 

His research has been extensive. He has investigated the widespread use of asbestos in schools, the failure of many schools to effectively manage their asbestos, and the increasing deaths of teachers and support staff from mesothelioma. He has highlighted the particular risk to children.

He has written extensively on the subject and has had many articles published in both professional journals and national and local press. He has given many interviews on national and local TV and radio programmes. He lectures widely and has given presentations at asbestos, health and safety, medical, legal and parliamentary conferences. He has received a number of awards for his work.

Michael worked with the media to bring the issue to the public so that they are aware of the potential for their child or themselves being exposed to asbestos at school. He wants openness so that parents and teachers are able to assess whether asbestos in their school is being properly managed.

He retired this year as he could see that IAS had got through at last to the Government.

I have met and worked with this lovely dedicated man and I have always backed his cause.  So at last this report has been Published today and it is great news

It is great news for us all that have been raising Awareness to have Asbestos out of our lives and so maybe this might be achieved before 2030 that is one hell of a work load but I pray it is achieved. At least peoples re talking our talk so lets hope they walk the walk and achieve .

MPs demand removal of asbestos from all buildings Ι Construction Enquirer

A report published by the All-Party Parliamentary Group on Occupational Safety and Health calls for urgent action to address the legacy of asbestos that remains in Britain’s workplaces and public buildings.

5,000 people die prematurely every year 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 can be found in around half a million non-domestic premises (and probably around a million domestic ones).

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.

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.

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. Only that way can we ensure that future generations will not have to experience the same deadly epidemic from asbestos-related diseases that we suffer today.

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.

In a new report published today (16 October 2015) the group is calling for:

•              All commercial, public, and rented domestic premises should 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 dutyholder 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 timeframe 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.

Ian Lavery, chair of the all-party group said

There is far too much complacency about the asbestos which we can still find in hundreds of thousands of workplaces as well as a majority of schools where children face exposure to this killer dust.

“We believe that the Government needs to start now on developing a programme to ensure that asbestos is safely removed from every workplace and public place so that we can end, once and for all this dreadful legacy which has killed so many people, and will continue to kill until asbestos is eradicated.” 

The original link is here To the booklet and contains the time table of events



The tide is turning

 Then the news came through to me that Access to Medicine (Innovation) Bill passes to committee stage. Success in Commons.Chris Heaton-Harris and Lord Saatchi and Dominic Nutt

A diary of a Mesowarrior living with Mesothelioma— Well the Flats in Glasgow are down, update on Ketruda trial, The Peak will not be hit in 2016 BBC your report in 2012 was wrong.

It has been a very busy weekend as I watched the Demolition of the Red Road Flats on Facebook with many of the residence.

They had waited all day as they couldn’t get some protesting residents out.

All of a sudden the flats just went I didn’t know at the time that there supposed to be a helicopter fly over that was the signal they would be ready and then a siren should have sounded.

This was missed out as they Council had been warned that the protesters were going to take over at that point, hence the flats went up with no warning.

Another message was the nursery opened on the Monday. I do hope they clean it thoroughly. It is unknown to some people that cement if it, came from China has asbestos in it so the dust is so dangerous as it spreads  up and out after the explosions.

Well the deed is done but lets hope and pray that in a few years there isn’t a hot spot of Mesothelioma.

My drug is now causing the itching that I have been warned of. In the middle of the night when, it gets warm under the duvet.

I itch.

But as long as it is still killing MR Nasty I can put up with that. I have had an email today and I have to sign another amendment to the trial. Oh dear they have put the deaths in. I find that scary. The drug has to have the fact that clots formed, infection was caused in another patient,

All together 6 patients have died from the drug treatment other than their cancers out of 306 patients from 22 cancers. I have been so happy that my side effects have been slight but I suppose that isn’t right for everyone.

There is a sentence that says now that if you have been stable for 24 months you can be taken off and monitored well afterwards.

I don’t think this applies to me as it has been agreed I go on all the time I feel well and have no side effects. I will be discussing this on my next visit.

A brilliant speech in Australia

Lee speaks on evidence that the West Connex Delivery Authority is violating environmental regulations, including the removal and storage of asbestos contaminated soil.

We need more Politicians like this talking for Asbestos. especially as when in 2012 the BBC announced, when talking about DIY that the peak will be in 2016, Oh dear all this guessing when we are really nowhere need that Peak that they keep talking about. I contacted the BBC and asked them to do a update.

It was such an effective material for insulation and fire-resistance it was used everywhere: in cement, to insulate pipes, ceilings and wall cavities.

It was only after decades of use in a wide variety ways that people noted the link between exposure to asbestos fibres and a number of different lung diseases – particularly the aggressive, cruel chest cancer mesothelioma.

Asbestos fibres can lie dormant in people’s lungs for anywhere between 15 and 50 years after initial exposure.

A recent BLF survey of 2,000 adults showed that only 22% knew that all forms of asbestos were finally banned in the 1990s, while 67% said they could not confidently identify asbestos around the house.

Both figures suggest that, as the initial furore over asbestos and health has subsided, so people ‘s awareness of the danger it presents is fading.

Gosh its not for the want of trying as Mesothelioma warriors that I know of are always raising awareness. USA, Canada, Australia and most of all My Uk mesowarrior  friends we all shout from the roof tops. We all give speeches at conferences etc etc .

We all know the sadness and heartache of the disease so Please lets call a halt to the madness and lets do the demolitions right, DIY, and house renovation etc etc

Please everyone the DIY we do in our houses that are built before 2000 could contain Asbestos so the figures of Asbestos diseases are going up and up, people have been restoring their houses Please keep safe if you think it is Asbestos then stop and call the experts even pay for a survey it could save your life and your families life http://www.bbc.co.uk/news/health-18456555

Lets keep our people around the world safe from Asbestos.


Yes that bay is me and I have Mesothelioma

Rays Blog 

Bit of a lazy day . Not felt like doing much. Watched a couple of TV films. Its been cold again. Good news is Louis seems to be back to normal. I think the squealing was a pulled muscle in his leg. He does go raving mad when the postman comes. Mats go flying in all directions. He jumps up onto the back of the sofa and peers out the window ,next he is tearing down and heading for the front door mats sliding in heaps. Back and forth he goes barking like a maniac, I recon he jumped a bit awkward. But he is ok today.


A Diary Of a Mesowarrior living With Mesothelioma –The End of Red Road Flats and the End of Our Darling Vulcan Bomber

Well its Monday and I have spent the whole weekend with the people of Glasgow on Facebook and some of the men that worked on clearing the Asbestos in this gigantic job of clearing the Asbestos out Red Road Flats

So many people so worried that Asbestos hadn’t been removed and that the people who live there or were watching this event would be contaminated at the last demolition.

I read a fascinating history of the building which was built in the days we though Asbestos was a wonder material. Who wouldn’t be scared if a fire started in such a building.


1979 Asbestos fears raise health concerns

The Red Road buildings used asbestos throughout their construction, to the extent that even drilling holes into the walls to hang pictures was banned due to the risk of releasing asbestos fibres into the air.

Asbestosis, an inflammatory condition of lungs that can cause shortness of breath and coughing, eventually scars the lungs making it hard to breathe. Long-term inhalation of asbestos fibres also increases the risk of lung cancer.

Between 1979 and 1982 the buildings were fitted with coloured metal overcladding to cover the exterior asbestos walls, however, as it was integral to their structure, it could not be fully removed without the whole towers being demolished.

There were many Videos on face book afterwards but the best one to show the dust was
I cannot believe that they have opened a nursery today it is at the base of the flats –or was — I hope they have checked the dust and it washed everything.
Well that it the Demolition is over and all the bad reports of the Asbestos has fallen down with it. I bet the Contruction Company is relieved but I hope their Insurance is solid for 30/40 years down the line when Men that worked on the site and people around it start to get signs of Mesothelioma. We have had to deal with this for so long and we are supposed to reaching a peak about now but believe me we are nowhere near that point and after I have chatted to men who work with in the Asbestos stripping trade, we never will.

We did have a treat yesterday with the Vulcan coming over on her last flight. What a wonderful idea to fly her over Uk like that
Vulcan 2
We watched from our home but we should have gone down to the beach as he flew all along the beach to Whistable. We could hear it though. That wonderful sound of a brill Plane.
Louis hasn’t been well I truly believe it has something to do with the chews he loves. He has improved over night so he is on health watch and see what he is like after his little snooze. I think he will improve all the time if not he will get a visit to the vets this after noon.
Lets hope the week calms down now.
Rays Bog We set us today to take pictures of the Vulcan Bombers last fly by. 1.30 pm. But what it did it do it flew along the beach and very low level. We just couldnt see it. Oh well. We are a bit worried about louis. he is moping about walking very slow and being sick. He just stands and looks at you. [ 53 more words. ]


A Mesowarriors Diary and Living With Mesothelioma My Interview has been printed and Glasgow has a block of flats blowing up tomorrow

Dashing out this morning to get our flu jab at last. The sun was lovly though even if there was some sea mist.

An early morning swim

We were soon seen although they wanted me to have a blood pressure done . I explained I have it done ever time I go to The Marsden but they said they need it so I had to go and have it done. 173/70 so that was good.

We came back home and then the fun began

A Interview I did was published today http://centreforjournalismprojects.co.uk/theinformer/?p=933

Potential asbestos controversy as demolished bungalow in Grain could threaten public wellbeing

Asbestos house picture

Asbestos fears have been raised as a 100-year-old bungalow known as Rest Haven, has been demolished near St James’ Primary School on Green Lane, Isle of Grain.

Concerned local former asbestos worker who lives just behind the site in Grain, Jack Hope, 53, raised his concerns while walking past the site and filming the demolition:

“The exterior was not even tested or even considered. The school route for most kids flows right past the site and while the builders wore masks, they never considered anyone else.

“To say I am angry is an understatement but I will persist in getting these crooks who think it is ok to potentially infect children with a killer waste product prosecuted.”

Jack Hobbs picture

Mr Hope’s has since filed an FOI request in a hope to put his to gain access to the documents that would put his mind at rest but he says his initial inquiries were met with silence:

“The Health and Safety Executive and Medway council were both informed of the asbestos content and the school route but neither did a thing about it.

“Everyone involved is compliant in the possible infection of hundreds of residents and damning the children who walk this route on the way to school.

“If this building had been behind Gun Wharf it would have been treated with complete regulated respect, It appears once again Grain Village is not worthy of regulations that are written and there to protect us.”

Exposure to asbestos is highly dangerous. It takes just one fibre to enter your airways and to get stuck in your lungs or organs to cause a mutation of cells and cancer to grow.

Mr Hope’s experience while working with asbestos and own personal tragedy has led to his passionate concern:

“My Uncle recently died of asbestosis, my Aunt of lung disease and my two nans of cancer. Cancer is a horrid disease and anything that stops it including complete regulated control during asbestos removal must be followed.”

The potential effects of poor regulation of the site have lead concerned a former local to help Mr Hope.

Mavis Nye, 73, recently retired from Chatham to Whitstable and is a cancer patient suffering from strain of cancer mesothelioma.

She contracted the disease after washing her husbands asbestos riddled clothes after he finished work at Chatham Dockyard in the 1960’s. Mrs Nye was given three months to live at a diagnosis but is still battling over 6 years on:

“I feel there is a lack of education. It’s a case of ‘it won’t happen to me’. If they contracted my disease or lost an arm or a leg they could see you have to take care. Training companies do offer free education but so few take it up. It’s a shame.”

Mrs Nye has worked hard to bring the issue of asbestos related diseases to the forefront. And runs ‘Mesowarriors’ Facebook group that offers a forum for sufferers to discuss their issues and get advice and also campaigned against asbestos around the country:

“I was very involved with the fight for stopping an asbestos collection station in Lordswood, as it was right by residents houses and a nursery. My one real hate is Asbestos in schools, 81% of schools have asbestos in them and teachers are dying as a result, just as my dear friend did.”

“Younger people are getting Mesothelioma so exposure at school or during DIY is getting into younger lungs. It is not an old mans disease!”

Mrs Nye’s therapy on the Keytruda Trial has so far been a success with shrinkage on her tumours and three that have vanished In her view she believes the way we deal with asbestos needs to change and has called for cheaper removal prices needed to stop dangerous fly tipping and for school children to be educated as they were with smoking.

Both Medway council and the recent buyers of the property were unavailable for comment.

Then a friend sent me these pictures

These Glasgow tower flats will be blown up Sunday 11oct and they may contain Asbestos..Families are planning to take a ‘picnic’ to watch it…note how close other houses are and if the winds right North East England will cop the airborne Asbestos.. Chris Griffin (ards) is the man responsible for this job .. …No Asbestos Is Safe.

I have been investigating all day and it seems the Asbestos has been removed over many weeks but then this link was sent to me http://www.dailyrecord.co.uk/news/scottish-news/workers-drop-asbestos-120ft-onto-1104980

Workers on the 12th floor of a block of flats dropped asbestos on to the grounds of a nursery school as children played outside.

Workers on the 12th floor of a block of flats dropped asbestos on to the grounds of a nursery school as children played outside.

And days earlier, a window was dropped from the same condemned tower block.

The accidents happened while workmen were dismantling Glasgow’s Red Row flats.

Furious city council bosses have reported the bungles to health and safety bosses.

A source said: “We’re lucky no children were seriously injured. There were dozens out playing when they saw these things come crashing down.

“A window was dropped from the ninth floor and crossed into the nursery grounds.

“Then the same thing happened on Monday, but with an asbestos sheet from 120ft up.

“The debris dropped on to a fence at the side of the nursery grounds where the soft-play area is. There’s a distance between the play area and the outside fence but you don’t know how far the debris could scatter – and it’s toxic material.”

Bonnybroom nursery have now banned children from playing at the side of the grounds near the high-rises.

Dundee firm Safedem are dismantling the Glasgow Housing Association (GHA) flats ahead of demolition.

A Glasgow City Council spokeswoman said: “We must have assurances from them that they will take any necessary action as the safety of children and staff is paramount.

“Until we are confident that these steps have been taken, nobody will have access to this area.”

Safedem said: “This unfortunate occurrence could not have been forseen and we deeply regret this incident.

“We have taken additional safety measures and continue to work closely with the nursery school, GHA and the Health and Safety Executive.”

Seems there has been many problems so what happens on Sunday when they demolish this building.

Will they make sure no rubble or dust has blown through this School. I do fear for the people around the site and the people watching but more for the people watching this great event.

Here are some videos to show you the dust and we all remember 9/11 so I pray they have taken all the Asbestos out and nobody will end up with mesothelioma in 40/50 years time.

A Diary Of A Mesowarrior Living With Mesothelioma Busy Days and Secrets, New Drugs and Ketruda

Oh dear I can’t sleep. Itching away and the creams don’t help so will take an Antihistamine tablet and a paracetamol and return for a couple of hours sleep.

The last couple of days have been so busy arranging conferences, hotels and travel and dog watch and a long computer interview about everything Asbestos and many questions for a Kent Paper. A really nice reporter though so I was happy to answer all his questions and look forward to his write up, he left the deadline very late though hope he made it.

I have been asked to talk at the  NLCFN Annual Conference at Windsor late November which is an honour..

2015 Annual Conference

The NLCFN is delighted to announce details of the Annual Conference, which is taking place on 19th-20th November 2015.   Come and share best practice with your colleagues and learn all about the latest developments in the diagnosis and management of lung cancer and mesothelioma.

The National Lung Cancer Forum For Nurses was established in 1999. The forums membership has increased from around 40 in 1997 to approximately 260 members today.

And then  a surprise honour that I will reveal when Im told I can. Something so big and Im so excited but Im not allowed to talk about it yet

Ha ha !! love teasing but Im so excited.It is a date the beginning of Nov so not long and I can reveal all.

I have ordered a new wardrobe of clothes and we went and bought a smaller case as the one I have is far to big when travelling on the train.So we are all ready poor ray just as he thought life was going to calm down and get ready for Christmas our word has been turned upside down.

Then as a Consumer Member on the review panel at NHS I get the news of trials early so I can show the warriors early and they can get on the list early, I have just had notification of a New trial for the harder Mesothelioma If you have these two then please get in touch with Barts if your in the South and not near Southampton.
A Global TRAP phase 2/3 will be opening in 2016 (US, UK, Europe and Australia) to patients with biphasic and sarcomatoid mesothelioma only.and you mustnt have had any Chemo,

Patients will be randomised based on histology to either Pemetrexed + Cisplatin + ADI-PEG20 or Pemetrexed + Cisplatin + Placebo.

Until then patients with ASS1-negative mesothelioma will continue to be enrolled for the TRAP Phase 1 study. New centres for TRAP Phase 1 are opening in several UK sites, including Leicester and Southampton and in the MD Anderson and Mayo Clinic in the US.

The new Ketruda Combination trial is getting funding so that will start in early 2016. It has jumped to Phase 3 as Phase 2 was successful in the USA but we have to remember that it isn’t for everyone even if they are not taking the PDL and PDl 1 into consideration any more but it is still down to your genes but they have to still find out just why it works for some and not others.

The drug is still very expensive but it is coming down in cost the more it’s used.

Lung cancer had the break through with Ketruda so maybe Mesothelioma will have it fast tracked soon.

The FDA cleared this immunotherapy drug to treat patients with advanced non-small cell lung cancer (NSCLC) whose tumours express a protein called PD-L1, and whose disease has progressed after other treatments.
“Our growing understanding of underlying molecular pathways and how our immune system interacts with cancer is leading to important advances in medicine,” said Richard Pazdur, director of the office of hematology and oncology products in the FDA’s Centre for Drug Evaluation and Research.

The quality and duration of disease response that was seen in the trial had previously been extremely rare in lung cancer. For people battling this deadly disease, this approach provides real hope of long-lasting responses while avoiding the toxicities of typical chemotherapy,” Garon noted.

The response rate and duration of response for Keytruda were greater than for drugs traditionally used to treat lung cancer.

In the three-year clinical trial, the overall response rate (the percentage of people in whom tumours were substantially reduced in size) was 19 percent.

In people who responded to treatment, the average duration of response exceeded one year, a remarkable advance in this difficult disease.

The most common side effects of Keytruda included fatigue, decreased appetite, shortness of breath or impaired breathing (dyspnea) and cough.


I have been lucky and had no side effects but the rash across my tummy and the discolouration of the skin is starting.

I don’t feel ill, just I look like a ragged dog

Image result for picture of a dog scratching

A good read http://www.nejm.org/doi/full/10.1056/NEJMp1510079?query=genetics#.VhYljgDwcd9.facebook

Releasing the Brakes on Cancer Immunotherapy

I had a call and was asked by a support group if I would have a chat with a newly diagnosed patient. This is the second patient this week. This side of my work is growing and I love it when a very frightened person is on the end of a phone in tears and they end up putting the phone down laughing and happy again. I love making people see you have to be positive something I had to be from the very first day of my diagnosis.

I’m always here on the computer helping as this to has become such a big support group among the Mesowarrior. We have so many new members that it is so sad they figures are growing. Or is it that we are being found more easily.

I know people are shocked when I go to conferences at the following I have but that also shocks me. Google my name and you get every word I have uttered.

When I look for pictures on google I’m shocked that photo’s i have taken appear. Even snow scenes in Seasalter appear.

We have had lovely Sunny days this week though so it has been great to go out without a coat but all that is changing next week as it is going to get a chilly wind from Russia where they have already had snow.

Rays Blog

I’ve been busy doing my bits and bobs. I had a blood test yesterday to check on my DVT. Ive been trying to sort the re publication of maves book. I have been working on her next book.. Last night I had a problem I clicked on a link in my diary and wow it deleted all my notes. devastated. Eventually I recovered it.

read the whole blog here https://mesoandme.wordpress.com/2015/10/08/thursday-137

Find his jigsaws on this link

Wednesday pzl @ http://onestopmesothelioma.co.uk/