Living With Mesothelioma-My Diary- Week 3 of the MK375 PDL Trial at the Royal Marsden

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Once again we got up at 4am to get ready for the hospital run to the Royal Marsden. I love a slow morning coffee and  breakfast so as to keep my nerve. Ray likes to take the dog for a walk as he is shut up for a long time. He is so good though and nothing is out of place when we got back home.

The traffic was good only a couple of hold ups so we called in st Clacketts Lane Service station. We picked up a bag of sweets but at £3.00 a packet we said that was dear and when we did buy them at the hospital they were only £1.49. When I told the lady serving us she said she knew and if we buy them at the hospital the profit goes to the Hospital Fund raising. I will remember that in future.

So with a busy but good journey we arrived at 8am and went to Oak ward and booked in.

Alistair and his wife came into the waiting room and we were comparing how we had felt the past 2 weeks.

We had bloods taken, 9 files were filled up for testing to see just what the drug was doing to us. While in there Joanne came in and surprised me. she is the daughter of our camping friends and I was really pleased to see her. She is Senior Ward Clerk on OPD. We had a quick chat and I hope I will see her again. She was hobbling in a medical boot but at least that means she is mobile again after an Op on her foot.

Then we went back to the waiting room to wait for the Doctor.

I was called in and he asked how had I coped.

I explained about the pain getting worse in the ribs and very sore to touch. I explained that I had loads of energy the first week and then last week went down hill. No energy always sleeping for two hours then awake. A runny nose and shivers down my back and the coughing. He noted it all down and said they are all the side effects. I was happy to hear that. So I hadn’t had a virus. I really should then give in and sleep when my body said so and live life again when Im awake.

When you think how bad Chemo was this is a party.

Very sad to hear though that the trial has been closed now to others. Im so so glad I didn’t hesitate. So pleased I grabbed this chance with both hands.

So disappointed that other Warriors wont get the chance.  I wish they would up the spaces from 375 around the world. Maybe if it is a great success they will fast track it and if I do well on it I will push for that to happen.

We had to go away to wait for the blood results so taking a Bleeper we bought a coffee and a cake.

Funny enough I had asked about my weight and what we should and shouldn’t eat. I was given a little booklet but reading it it does say not to loose weight or they will take you off the trial. So maybe a little little bit should come off and i can eat healthy. But I said to Ray I look at food and just don’t fancy it. So I look at a cake. I really must sort it out.

We went back to wait and the results came through good so defo no virus. This meant they start to make the drug up 12 mid day.

We went down to eat a dinner but I didn’t fancy any of it so I had sponge and custard. ?? as I sai I must sort myself out.

Back into the waiting room and Ray dropped right off and I kept shutting my eyes and going off.

2pm we finally was called in for the drug to be administered, I Had to wake Ray up.

Everything was checked and double checked at at last my little bag of hope was put up on the stand and dribbled into my veins. It seems like a golden glow around it. Please work Please!!

So all done and we got out fast to come home. It was a great journey home the roads were clearer and more free flowing.

4.30 entered the house to a ball of wagging tail and head and claws down my legs. My little buddy always so loving waiting for us. Ray took him out and he had a good run around.

I got the kettle on so pleased I was home.

No sickness this time and feeling Ok

 

 

 

 

 

 

 

 

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Living With Mesothelioma -My Diary- A good Weekend Car Hunting

Saturday was eventful as I decided to buy Ray a new car as a surprise. We have been talking about it since travelling up to The Royal Marsden. We needed a bigger engine or a more powerful one to keep up with the traffic on the M2 M26 and M25.

Ours is great for around town but we had never planned on a longer journey like the Marsden.

We looked at the garage where we bought our car but there was nothing that caught our eye.  So we went back to Whitstable to the Harbour garage.

When we arrived we were amazed that every car had balloons flying from them. It was packed with cars being moved around. Great it was a special sales weekend.

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The sales team were all there  and made us feel so special Even Louis was welcomed although he wasn’t happy with another dog that was there.

I saw the car standing there I loved her on first site. Lucky enough Ray did to. So she soon became ours. The great thing about buying here is the Milage is always low. People retire here and buy a new car and then find they have to give up driving for many reasons. So a Bargain is always to be had.

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We found it strange as you done need road tax as the emissions are so low.  At the moment we pay a smaller tax but this one is free ??? didn’t know they did that.

So we can collect her on Thursday so something to look forward to.

It rained last night just after we went to bed. So so hard it was very noisy on the roof.

Been taking life easy as this virus has knocked me out this week. Its the sleeping that was frightening. 2 hours awake meant 2 hours asleep all day yesterday. I tried to force myself to cope with it.

Ray said I scared him in the night as my breathing became bad and then stopped. He thought I had gone he said but as he panicked I took a huge noisy breath.

I slept all day and then all night so I didnt know a thing. Then today has been the opposite and Im right back with life again.

My ribs hurt bad though -on the left side. When I touch them they feel sore. The hospital knows about this and they have said it is the disease progressing as the bottom half of the lung, as it is covered and restricting my breathing.

Such a sad disease .

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We have lost 3 Warriors this weekend. They all have fought a Courageous battle but Mesothelioma won in the end.

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Goodnight my dear friends, We will miss you .

Rays Saturday Blog http://mesoandme.wordpress.com/2014/06/28/friday-96/

Rays Sunday Blog http://mesoandme.wordpress.com/2014/06/29/sunday-89/

Living With Mesothelioma -My Diary- The Saatchi Bill has had a good Result in the House of Lords today. I also went to my Locality Meeting.

I dont know where to start with todays blog as it has been a very eventful day.

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It started this morning with Lord Saatchi presenting the second reading of the Bill in the House of Lords and he even mentioned me.

Please watch it here http://www.parliamentlive.tv/Main/Player.aspx?meetingId=15576

Im so pleased it has passed another hurdle and i will carry on backing Lord Saatchi in every way I can.

I had to leave the Debate to go to my Own NHS East Kent Partnership Locality group.

Ray and I thought the meeting was very good as we had speakers that were talking about subjects so close to my heart.

Dr Gordon Ellul lead Clinician and Consultant in Nuclear Medicine . I have never had a PET Scan and always wondered why. It is because Money plays a part and we only have a Mobile one that visits the hospitals on rotation.

All that is going to change

Because of the lack of availability, PET scans tend to only be recommended for people with complex health problems. They are not routinely used to diagnose cancer, but are often used in confirmed cancer cases to see how far the cancer has spread and whether treatment has been effective.

However, PET scans are becoming more widely used by the NHS, with an average of 40,000 PET scans being carried out by the NHS in England each year.

I never knew an ordinary scan is taken with PET Scan so that they can compare. As a Scan shows a tumour and a PET Scan shows that the tumour isnt always solid but can be debris where the tumour has died  So when they do a Bi-Op they might not actually put the needle is a solid part. The PET Scan shows them where to take the bi-op.

It can save money  as it could show that an Operations wouldnt benefit the patient. As at the moment with just a Scan it isnt showing the whole story, The PET Scanner is needed for more detail.

Patients wont have to travel to Guys now it will all be carried out in East Kent.

http://www.nhs.uk/Conditions/PET-scan/Pages/Introduction.aspx

Trials are the best Medicine nowadays as we are making such progress.

A PEt Scan costs £750 per patient that has come down from £1000 and is coming down more next year. A ordinary Xray costs £25.00.

Other things discussed were Lymphoedema Services and Supportive Therapies like The Harmony Trust  http://www.theharmonytrust.org/

Then Dr Barbara Mercier and her team discussed Clinical Trials in East Kent.

They said to use  http://www.cancerresearchuk.org/cancer-help/trials/

There are new trial being realised in the next few weeks. Of coarse this is for all cancers so keep searching for Mesothelioma.

The East Kent  Oncologists are going to have a better National Database for trials so Push your Oncologists throughout the country to sort trials by National Database as the Open data Platform is growing .

http://www.docman.com/news/post/nhs-eastern-and-coastal-kent-and-nhs-medway-required-a-solution-to-transfer-documents-electronically.asp#.U625NPldVuZ

EDT Hub has been deployed to NHS Eastern and Coastal Kent’s 120 GP Practices and NHS Medway’s 61 Practices to distribute documents electronically rather than using the previous paper-based method.

The end-to-end solution enables the effective transfer of electronic documents to improve patient care, reduce processes performed by healthcare professionals and provide significant time and cost savings.

The solution is calculated to save NHS Eastern and Coastal Kent and its Practices £198,616 per year in time savings and consumables when transferring 900,000 documents, without taking into account savings in postage costs. NHS Medway estimates that approximately £108,122 will be saved per annum in time savings across its practices.

Transferring electronic documents using EDT Hub

EDT Hub captures documents from Secondary Care systems and distributes them to any GP practice. By sending documents electronically, Hospital Trusts can not only meet delivery targets like the 24 hour discharge summary, but they can also make significant savings by removing printing and postage costs. The PCTI EDT platform is a proven solution for delivering electronic letters to GP practices such as Discharge Summaries, Discharge Letter, Encounter Reports, Radiology Reports, Outpatient Clinic Letters and Out-of-Hours Reports.  There are over 40 Hubs already deployed (between Hospitals and GP Practices ) delivering the benefits of joining up healthcare.

Once again push your hospitals through the country and take the link to prove so much is going on in the NHS.

We here in the East Kent are having a recruiting for more Patient Repa they are really listen to the patient. Please what ever your illness think about joining people like me. I love being in the working end of the NHS. I dont moan I get in there and try and make change. Please turn your anger into Positive and help bring the changes.

Well thats been a great day and helped me to take my mind off of how I feel.

http://locality.org.uk/events/south-east-regional-network-meeting-kent/

Locality is the leading nationwide network of development trusts, community enterprises, settlements and social action centres.

Who are we?

We are a national network of over 700 inspiring, ambitious and dedicated community-led organisations and 200 associate partners. View theinteractive map.

The Locality staff team works all around England and our head office is near Old Street in East London. We are a team of friendly and hard-working community-sector professionals working to support our members and the communities they serve.

What do we do?

All our work aims to inspire local communities to change and improve.

  • We help people to set up locally owned and led organisations
  • We support organisations to exchange ideas and best practice oncommunity asset ownershipcommunity enterprise and social action
  • We work to influence government and others at national and local level to build support and investment for the movement.

Our projects

We also run a wide range of major national projects, including:
Community Organisers
Community Rights
Neighbourhood Planning
Our Place

Visit our projects page for a full list of everything on which we’re currently working.

Get in touch

Please visit the contact us page if you’d like to get in touch.

 

Locality, the trading name of Locality (UK), was formed in April 2011 by themerger of bassac and the Development Trusts Association, two leading networks of community owned and led organisations.

Locality is an Investors in People certified organisation.

Locality is an accredited London Living Wage Employer.

– See more at: http://locality.org.uk/about/#sthash.rBgIFax4.dpuf

Rays Blog http://mesoandme.wordpress.com/2014/06/27/friday-95/

 

 

 

 

 

 

 

 

Living With Mesothelioma -My Diary- A huge day for Lord Saatchi In the House of Lords as the Bill gets a Second Reading

I do feel so much better today. Yesterday was still frightening as I kept dropping off to sleep hour after hour.

I have everything written down to show the team Monday. I think my body has been able to fight off infection as the virus was draining. I listened to others that had the virus and knew I felt the same.

I did manage to go with Ray and Louis to the park and had a walk around and played with the dog. I felt very rough. Im over it now drinking coffee here more aware of my surroundings.

So today is sounding good. I have a East Kent Partnership Locality Group Meet at Kent and canterbury Conference rooms.

The Agenda is very interesting with so many speakers.

PET Scans

Clinical Research

Volunteer Services

Benefit advice Scheme

Cancer pathway Events

Kent and Medway Cancer Collaborative

Info Up to date from Strategic Clinical Network.

So you can see we have a very full Agenda to get through.

I love being involved as I like keeping up to date so I can pass on Information to the Mesowarriors.

Today is a huge day in Parliament for the Saatchi Bill and I believe he might even mention me and my struggle for treatment. That will be a very emotional moment if he does, as I so admire him and all he has achieved with the Bill so far.

I wish Lord Saatchi all the luck in the world. There is opposition to his Bill and I hope it will all be ironed out. The Bill is needed by us terminal ill patients of disease. We should be allowed all treatment possible when we have no more hope. We are having to pay so much out in travel to find treatments. We should have more say in Trials as we are desperate and through our desperation they might find a cure for the future,

 http://www.parliamentlive.tv/Main/Player.aspx?meetingId=15576

The Second Reading in the House of Lords of the Medical Innovation Bill starts at 10 am on Friday 27 June 2014.

It can be watched live on the Parliament TV website.

Twenty-two members of the House of Lords have put their names down to speak in the debate. In alphabetical order, they are:

Living With Mesothelioma-My Diary- Cold Virus is getting better

I feel so much better today. I have had a scare as I never knew what a cold can do to a Mesothelioma patient.

Ray has asked me from now on to be truthful, when he asks how are you? I must really tell him.

This has come about by the fact I fell asleep in my chair yesterday and he came along the passageway. Now Im a light sleeper but I knew in my unconscious level  he was there but I was having to shout to myself to wake up.

I couldn’t wake up.

I did finally come back to a waking mode but Ray said it took some time. Now we understand how a failure mesowarrior dies so quickly when they have a cold or infection.

I rested all day although we did manage to get out to shop and I enjoyed the ride out.

I slept on and off and I have had a good sleep even if I did wake up at 3.30.

Im just so grateful to see another dawn rise.

 

 

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On Facebook a friend has said there is a bad virus going around so Im pleased to know thats all it was.

So another has said honey and lemon for the throat I have got a lemon out of the freezer and will make a drink up.

Just had a message that A Mesowarrior is fading. We have been friends for some time and  reading back I have always been there to help with all the different pains. I wish I could be there to take away this last few moments of pain. Bless him I hate itwhen we lose another warrior.

My love and hugs go out to him and his family and Im behind his daughter now. She has been so loving and caring. We make so many good friendships as we travel the journey together.

Boy do we need a cure for cancer. A nasty Biologist said to me at the weekend, We have to die of something. Maybe! but not at the hands of a man made fiber. I just turned my back and walked away.

So now I will  get breakfast and today is a chill out day.

Rays Blog I will leave him to tell you about a watch he has bought me. As big as Big Ben on my wrist -I like big watches but this is taking the Mickey

http://mesoandme.wordpress.com/2014/06/25/wednesday-93/

Living With Mesothelioma -My Diary – Louis Haircut and a great song about where I live has been released

Spent yesterday knock out with this cold. Its the first one I have had in 5 years and the fear it brings as so many Warriors have gone so quickly with infection from a cold.

I slept most of the day so that began to frighten Ray. Just a simple cold.

I have woken up feeling a bit better but not 100% so will rest again as I need to be well for Mondays drug.

Coughing was very bad and it hurts the lung so much, I have escaped the meso cough for so long but now its here and I dont know what I can take to help it.

I cant just take anything as it might clash with the drug so I will have to phone to ask today.

We are getting used to Louis Haircut, it makes him such a little dog when we thought he was a larger tubby dog.

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So small but he has been enjoying the luxury of being at home. He really isn’t a kennel dog.

The culture shock was to much for him.

http://www.canterburytimes.co.uk/Whitstable-featured-music-video/story-21283246-detail/story.html

Whitstable featured in music video

WHITSTABLE WONDERS: Men With Ven 

A NEW song celebrating all that is wonderful about Whitstable is set to become an internet smash.

The music video was released online last week by cheeky band Men With Ven and is already causing a stir on social media sites with its catchy chorus.

The band takes their name from the supposed plural version of ‘man with a van’ and are described as ‘three men and nearly as many chords, on the road from Barking to Deptford’.

The song shows band members Bill, Dave and Carl driving through the area and features well-known sights from Whitstable, including the Old Neptune and the Duke of Cumberland pubs.

Dave Barratt from Men With Ven said: “It is a well known fact that Whitstable is a future European City of Culture despite not even being a city, so we have jumped on a non-existent bandwagon and rode it as far as we could.

“Also Whitstable rhymes with ‘mystical’, ‘spectacle’, ‘delectable’ and ‘biblical’. Who could resist that?

“We all love it down here. Bill lives full time in Whitstable, I spend about half my time here and Carl is a fully fledged DFL (Down From London).”

To find out more about Men With Ven, visit http://www.menwithven.biz

Asbestos Hunter has published photos of the different Asbestos.

Photo: Wow, 7-million views and counting. That's a lot of awareness. 
https://www.flickr.com/photos/asbestos_pix/sets

Other people make videos of their speeches and I was really impressed with Mesowarrior Sandra Kinart who has talked about her story. So impressive xx

Rays Blog http://mesoandme.wordpress.com/2014/06/24/tuesday-99/

Living with Mesothelioma -My Diary- HSE have printed a great report for Asbestos In Schools -Easington MP Grahame Morris has signed a Parliamentary motion calling for the Government to invest in a long-term sustainable mesothelioma research plan.

Finding it hard to sleep for long periods. Couple of hours and then wide awake again.

This means I drop off during the day and thats it the sleep pattern is all wrong.

We worked hard in the garden again and Ray cleared rubbish out of the shed. Then after lucnch i finished it for him. The weather is so hot that I think I have got hay fever and not a cold. So much sneezing.

There has been a lot of feedback about how inspirational my speech was. Very proud. Seem to have reached so many. Dont really know where I go from here, how to use it to its best advantage in my fight for awareness.

No doubt my life will unfold and I will see where to concentrate next.

Two hot od the press articles today I keep saying 2014 is the year things started to move.

The Asbestos in Schools report is very good and will go along way to managing Asbestos in Schools

http://press.hse.gov.uk/2014/hse-announces-results-of-asbestos-management-in-schools-inspections-201314/

The Health and Safety Executive (HSE) has published the results of its latest asbestos in schools inspection initiative, which took place in 2013/14.

HSE inspected a carefully selected random sample of 153 non-local authority schools between April 2013 and January 2014, which included independent, voluntary aided and foundation schools, free schools and academies.

The majority of schools inspected (71 per cent) required either no further action or were given straightforward, simple advice. However, 29 per cent (44 schools) received written advice from HSE, and 13 per cent (20 schools) were subject to enforcement action, in the form of improvement notices.

The improvement notices set out a requirement for recipient schools to improve arrangements for managing asbestos. Enforcement action was taken over failures such as training staff and producing written management plans – not because staff or pupils were considered at significant risk of exposure, but because these are vital elements of the required control measures.

Compliance with the Control of Asbestos Regulations in England, Scotland and Wales showed an overall improvement compared with that found in a similar survey and inspection programme of 164 schools outside local authority control in 2010/11 where 41 improvement notices were served on 28 schools..

Geoff Cox, the Head of HSE’s Public Services Sector, said:

“Over the last few years there has been a lot of work by stakeholders across the school sector to raise awareness of the duty to manage asbestos. It is really encouraging to see that awareness of the requirements has increased since our previous inspection initiative.

“That said, schools should not be under any illusion – managing asbestos requires ongoing attention. Schools now have access to a wealth of guidance setting out clear and straightforward steps to achieve and maintain compliance.

“Where duty holders fall below acceptable standards, HSE has taken, and will continue to take, enforcement action”

The inspections revealed a number of common themes in those cases where schools were falling short of the requirements. HSE has published its findings to help share more widely what can be learned from them.

All schools must ensure they have up to date records of asbestos containing materials in their school – this is to make sure that the school knows the location of any asbestos containing materials that could be damaged or disturbed by normal activities, by foreseeable maintenance, or when installing new equipment.

Training is essential for maintenance staff whose work could foreseeably expose them to asbestos and every school needs a robust system to alert anyone who may disturb asbestos at the school.  The key group of personnel at risk from asbestos is tradespeople – particularly those undertaking maintenance activities.  It is vital that schools ensure that anyone who may disturb asbestos is made aware of its location and condition.

Asbestos which is in good condition and remains undamaged and undisturbed does not pose any significant risk to health if it is managed in compliance with the legal requirements and according to HSE’s published guidance.

 

Notes to editors

1. The Health and Safety Executive is Britain’s national regulator for workplace health and safety. It aims to reduce work-related death, injury and ill health. It does so through research, information and advice, promoting training, new or revised regulations and codes of practice, and working with local authority partners by inspection, investigation and enforcement. www.hse.gov.uk.

2.  A full list of schools inspected and the results of the inspection is available online at: http://www.hse.gov.uk/services/education/asbestos-management-1314.htm

3. Inspectors took enforcement action in 20 schools targeting the following issues:

No written asbestos management plan – 8 schools

Failure to undertake survey/assessment or an inadequate assessment of the presence of asbestos containing materials – 8 schools

Failure to effectively manage the risks or implement a suitable system to manage the risks from asbestos – 2 schools

Inadequate training and information for employees – 2 schools

Details of the last inspection programme in 2010/11 are available atwww.hse.gov.uk/services/education/asbestos-management-1011.htm

4. Duty to Manage: The Control of Asbestos Regulations 2012, regulation 4 requires duty holders with a legal responsibility for non-domestic premises to manage the risk from any asbestos that may be present. For more information visit www.hse.gov.uk/asbestos/managing/index.htm

5. Frontline HSE Inspectors work with duty holders in a proportionate and consistent way to improve health and safety performance. This includes:

Advice: This provides guidance on practical improvements that can be made. Though advice has no legal standing, failure to follow it may result in further enforcement action being taken.

Improvement Notice: This sets a legal timeframe for a particular situation to be resolved. There is not considered to be an immediate danger. Employers failing to meet the terms of a notice by the expiry date may be subject to legal proceedings.

Prohibition Notice: This is served where an employer/ duty holder is failing to protect employees and the public and there is a risk of serious personal injury. A prohibition notice deals with immediate danger and the work/ activity must stop immediately, while the issue is resolved.

http://grahamemorrismp.co.uk/?p=3535

Commons Chamber

Easington MP Grahame Morris has signed a Parliamentary motion calling for the Government to invest in a long-term sustainable mesothelioma research plan.

Mesothelioma occurs following exposure to the deadly asbestos fibres which are still present in many buildings. Approximately 2,500 people die from mesothelioma every year in the UK. The numbers are not predicted to fall before 2017 at the earliest.

Mr Morris says: “Mesothelioma is a traumatic disease and has had a devastating impact on thousands of families in County Durham. It often takes 40-50 years for symptoms to present themselves after exposure so it is vital we invest in research now for the long term.”

In terms of research funding mesothelioma receives considerably less in relation to other major cancers. Bowel cancer research gets £22 million, breast cancer research gets £41 million and leukaemia research £32 million. Mesothelioma in contrast receives just £1.4 million.

The Parliamentary motion states that mesothelioma is an invasive form of lung cancer and recognises there is no cure for the disease. It goes on to note the UK has the highest rate of the disease in the world and over the next 30 years more than 50,000 people will die of mesothelioma unless new treatments are found. It calls on the Government to facilitate the establishment of a long-term sustainable mesothelioma research scheme funded by the insurance industry.

Mr Morris added: “I am appalled that funding for this aggressive and terminal disease, with life expectancy from diagnosis only 9 months, receives such little research funding compared to other cancers.

Important legislation has recently been passed that ensures mesothelioma sufferers, once denied compensation because they couldn’t trace former employers or their insurance companies, will now receive 75% of the compensation they would have been entitled to from a specially created fund through a levy on insurance companies.

I believe victims of mesothelioma should receive 100% of the compensation they are entitled too, however, since these proposals have been rejected, I believe this unrecovered money should be used to fund a long term research scheme, to the benefit of all sufferers and to give hope to the victims of mesothelioma.”

EDM 93 – MESOTHELIOMA RESEARCH FUNDING

That this House notes with concern that mesothelioma is an invasive form of lung cancer caused primarily by prior exposure to asbestos; recognises that there is currently no cure for this devastating disease and that mesothelioma patients frequently have a very short life expectancy and experience complex debilitating symptoms; further notes that the UK has the highest rate of the disease in the world and that over the next 30 years more than 50,000 people will die of mesothelioma in the UK unless new treatments are found; believes that investment in research into the causes and potential cures for mesothelioma is desperately needed; and calls on the Government to facilitate the establishment of a long-term sustainable mesothelioma research scheme funded by the insurance industry.

Rays Blog http://mesoandme.wordpress.com/2014/06/23/monday-91/