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









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.

harbour garage







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.













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 .


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

candle 2






Goodnight my dear friends, We will miss you .

Rays Saturday Blog

Rays Sunday Blog

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.





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

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.

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

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

They said to use

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 .

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.

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

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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.

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

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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.

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– See more at:

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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,

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.











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

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.




















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.

Whitstable featured in music video


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

Asbestos Hunter has published photos of the different Asbestos.

Photo: Wow, 7-million views and counting. That's a lot of awareness.

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

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

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.

2.  A full list of schools inspected and the results of the inspection is available online at:

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

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

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.

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.”


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

Living With Mesothelioma- My Diary – The Video of my Speech is ready

It has been a relaxed quieter day with Louis sleeping most of it. He is so shattered it was so noisy with all the barking. I have washed his bedding as well so we are back to a normal life.

I have no appointments until Fridays East Kent Clinical Meeting  at Kent and Canterbury so I have a lot to report as they didn’t know I was going to Manchester.

We have been doing some heavy clearing of hedges in the garden. Not mine but they cause a lot of cutting back on our side so we have cut right down and although I have lost some privacy it has ended up Ok though as the man who lives behind is is very quiet and we never see him.

So we were well happy with all the work we did.

All the hosing down I have finished and so it is very tidy.

I have been sorting out all the friend requests from lovely people I met over the last few days and tweeters more and more people reading my Blog.

Ray loaded the video to You Tube so I have put that on my facebook and twittered so here we are x

Im very pleased with it. It fitted in so well as they were discussing the Patient and so I gave the patients view.

My Grandson has said

I feel like you’ve become a politician going to all these different places and talking on important subjects— I’m very proud to have you as my gran, I hope you know that.

What a wonderful thing to say and he is only 23 bless him. I love him so much as well and all the fighting I do is so I can watch him grow up.







Rays Blog


Living With Mesothelioma -My Diary- My time at the Manchester Oncology Forum 2014

I will have to do this blog in 2 parts as we have a video of my speech but it has to edited and sent to U tube. A long process. So lets have the personal look today.

Lets look at the photos and i will comment as we go through the wonderful time I have had.








On the train to London this group of people were on their way to Ascot and they included us in their Champagne Breakfast only the Boss that sat with us thought Ray need it on his trousers. I said dont worry it will dry and smell lovely all day. They were all from an estate Agency in rainham. It made our trip to London just so special.

We then battled the Underground to Euston but everyone was so kind and helped us with our case on the escalators.







Euston we found our Virgin train to Manchester and we had been booked into 1st class travel so our seats were reserved and we settled in for the longer journey.








Lots of staircases in the hotel. A wonderful old building.


















our bed








Our Bedroom was huge.








I loved the rooms and it reminded me of Mr Selfridge






We sat and rested and then it was time for Afternoon tea. We had so many people to meet.

The Form was opened by by Prof Daniel Hochhauser Oncology Forum Vice Chair.

Professor Alexandra Eggermont was a Keynote speaker

He had me in tears as although he talked of The Re Naissance of immunotherapy for Skin Cancer he was talking about my PDL Trail with such keenness and evidence of working I was so humbled that I was in the Mesothelioma trial of the drug.

Liz Darlison came over at the end of the speech and we cried together and hugged. What a wonderful moment of realising –This is going to work.





Peter Sissons ran the Question time





The Panel was  Prof Mark Baker, Mike Birtwistle, Simon Crompton, Liz darlison, Dr Clive Peedell and Prof Clare Wilkinson.

This was run very professional just like on TV. It was filmed so I hope to get a copy to show you all.

We then got ready for evening Dinner.

















Deep in Conversation with the Lorraine Dallis a Director of Info and support for the Roy Castle Lung Cancer.








Dean Fennel came in late and sat on our table. it was so lovely to meet up again.

The meal was really good and we then went off to bed shattered.

Next morning we all came together for a breakfast to set ourselves up for the day.

9am we were all in the Grand Room where Prof William Steward Chaired and spoke to us about the day ahead. We all split up into separate groups under the heading of different Cancers.

So I was in the Delivering Care to the Uk NHS Cancer Patient..The hotel has so many rooms used for conferences it was amazing.

I was speaking with Liz Darlison who Chaired the meeting Lorraine Dalles for the Roy Cancer lung foundation, Dr Mick Peake Consultant and Senior Lecturer in Respiratory Medicine, Mike Birtwistle, health policy expert Incisive Health.

Then Me little old me. I was billed under Onestop Mesothelioma which is my web page. I realised that it had become an official web site presented to the NHS as everyone was from or involved with the NHS. It was a very proud moment.

I have to add Uk to the tittle now.

I hadn’t realised people were recommending the site to new patients as it is for and written by me –The Patient.

We all gave our speeches and everyone was so good but I suddenly saw that my Speech fitted in so well. Me My disease and my”high cost” treatment. A patients story about undergoing high cost non curative treatment.

Ray has videod so we will send up to You Tube when we have edited it. that will take time but it will be done ASAP.

Everyone congratulated me afterwards I was so proud as I have mentioned the warriors and facebook.IATP, ADAO and Bernie Banton as we have come together on a Global scale.

So that was it we met up again in the Grand Room and Prof John Burn talked about mismatched repair deficient cancers, diagnosis, treatment and prevention. He is going to market a hand held DNA machine at the cost of a phone.

Then the amazing discovery that 2 aspirin is being trialled as a prevention to colon cancer.—a-double

Background: CAPP2 recruited worldwide 1009 people with the Lynch syndrome (LS) who are at high risk of hereditary cancer due to being carriers of mismatch repair gene defects; it showed, in a randomised placebo controlled trial format that 600mg daily aspirin for 2 years results in 63% reduction in colorectal cancer and similar reduction in other related cancers, apparent from 4 years (Burn et al Lancet 2011). It is important to establish whether this protective effect can be achieved with lower doses of aspirin and, consequently, fewer adverse events and to support translational studies of underlying mechanism. Aims: CaPP3 will be a double blind randomised dose inferiority trial (RCT) designed to compare the degree of cancer prevention resulting from three daily doses of enteric coated aspirin; 600mg, 300mg and 100mg. Methods:Recruits will be adults of 60 or under who have been shown to have a constitutional pathological variant in one of the mismatch repair genes (hMSH2, hMLH1, hMSH6 or PMS2), who are not known to be sensitive to aspirin. The UK regional genetics centres have identified approximately 6500 adult LS gene carriers (based on 2011 audits) and all are under 1 to 2 yearly followup colonoscopy. Gene carriers will be consented and blood/ saliva biobanking samples collected before blinded dose allocation via secure website:, regular review and cancer registry data will be combined to assess impact on new cancers and adverse events related to medication for at least 5 years. Sample size calculation used CAPP2 observed “survival probability” for all Lynch related cancers and colorectal cancer: 0.889 and 0.949 after 5 years respectively. The null hypothesis is that 600 mg aspirin as active control is superior to the new treatments (300 mg and 100 mg aspirin). We have estimated that all Lynch syndrome cancers will be reduced by 50% using 600mg while 100mg will result in a 25% reduction. If 300mg results in a 30% reduction, the target would be to follow 1000 participants in each group. Parallel studies in other countries using the same randomisation are under development and will provide greater power. Application: This trial will establish a new international standard of care in hereditary cancer and inform the debate about more widespread use of aspirin to prevent cancer, especially in people with a personal or family history of cancer.

We all had a buffet lunch and gradually people left to get their trains. We were staying on though for another night as i wanted to rest before the journey home.

Im pleased we did as we had a late dinner and then went to be early. haha !!! Manchester is like London it didnt sleep. Loads of noise of clubbers going for their late train/ well very early morning and sirens going. But it did finally go quiet but I couldnt sleep. My head was so full of so much info and I had just had the time of my life.













Waiting for the taxi this morning back to the station. We were on our way home, tired but very happy. Thank you Oncology Forum for this wonderful opportunity to meet the Wonderful people that dedicate their lives to Cancer and the NHS.

A huge thank you.

Rays Blog


Living With Mesothelioma -My Diary – Louis is in the Kennels ahhhh. We are off to Manchester to the Oncology Forum.










We had to take Louis to the Kennels as we are off to Manchester as I have been asked to talk about my journey within the NHS.

It was so difficult to leave him there among other barking dogs and sad little dogs who are just waiting to be picked up by their owners. He has his blanket so he should be Ok.

I cant sleep now as I can here him walking about. I actually hear his little claws on the floor tiles.

We arranged for him to have a hair cut though so that should pass the time today and I know he is getting some attention.

We have to pick him up on Saturday, I cant wait.

I came home and did a bit of gardening and then packed our suitcase. We are all ready for the taxi today at 8-15am

Ray has written it better than I xx


Oh dear!

Mavis up at 3 am. She can’t sleep again. Me I got up at 4 am I was awake worried about her. But she says  she is ok just can’t sleep. Today we have to  put louis in kennels. We hate doing it but we can’t take him to Manchester with us. I’ve been telling him he is going on holiday  and will meet new friends. He isnt going until after lunch. It will be a quiet lonely night without him. We are off early in the morning. we will miss him.

.We have some packing to do I am sure mavis wont get everything in the case.  When I see what she packs for a weekend camping I am terrified at what she intends to take for this conference. Probably will be no room for my stuff. Good job its got wheels on.

I am sorry but there will not be a puzzle  for Fri/Sat. But Should be on line again for Sunday puzzle. Its just too much hassle taking the laptop and plugs leads connectors power supplies all crammed in  one case.

Its been  a nervious day constantly checking train times platform numbers  how many stops between  places. Ordering taxis  sorting  clothes  so many things to remember. Its worse gong by train than  going in the camper van. Thats hectic enough. Nervous  in case the kennels find something in his docs that they dont like or we have missed.


Well the dirty Deed is done. Louis has been left in the kennels. He was happy as Larry to get there. But when it came to put him in the kennel he wouldnt let us shut the door on him . he wanted out  with mummy. The Man had to step in and hold him while we got out. The look og utter disbelief on his little face when he raealised he was staying was hurtful. But  hopefully we can  get home in time to pick him up on Saturday so its only 2 nights at best 3 nights if we cant make it.

Suit case is packed . All we got to do now is relax and get ready forthe taxi in the morning.


Poor ole louis has been away for over 4 hours now. I bet he doesnt know what he has done to deserve this. We miss him already. We just have to make a big fuss of him when he comes home bless him. Oh how we love our pets.

Oncology Forum 2014

Venue : The Palace Hotel, Manchester

Thursday 19th June 2014 (registration at 15:00hrs)
Friday 20th June 2014 (concludes at 13:00hrs)

The faculty for the Oncology Forum would like to announce the date for the 2014 meeting which is PLATINUM SPONSORED BY SANOFI UK, Gold sponsored by Bayer, Silver sponsored by Celgene Ltd, Merck Serono and Medac and Bronze sponsored by Lilly UK. Chaired by Professor Will Steward, the meeting programme has been designed to be both challenging and informative.

Please follow for more updates on Linkedin

Oncology Forum 2014 big breaking news! Professor Alexander Eggermont, ~ current President-Elect of the Federation of European Cancer Societies (FECS) ~ will be the opening keynote speaker 2014!