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.

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Rays Blog   http://mesoandme.wordpress.com/2014/06/22/sunday-88/

 

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.

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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.

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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.

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Lots of staircases in the hotel. A wonderful old building.http://www.palacehotelmanchestercity.co.uk/about-us/

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our bed

 

 

 

 

 

 

 

Our Bedroom was huge.

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I loved the rooms and it reminded me of Mr Selfridge

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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.

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Peter Sissons ran the Question time

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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.

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

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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.

http://www.cancerresearchuk.org/science/research/who-and-what-we-fund/browse-by-location/newcastle/newcastle-university/grants/-15934-cruk-12-039-capp3—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: www.capp3.org, 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.

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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 http://mesoandme.wordpress.com/2014/06/21/saturday-3-days-in-manchester/

 

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

 

 

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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

Wednesday

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.

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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.

http://www.athenameetings.com/index.php/blog/144-oncology-forum

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 http://www.linkedin.com/groups/UK-Oncology-Forum-5076674?trk=myg_ugrp_ovr

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!

Living With Mesothelioma -My Diary- Day 2 of the Trial- Feeling normal.

Photo: Can this be achieved in the asbestos removal industry

Can this be achieved in the asbestos removal industry

Its been a quiet day as I have felt so tired and yet I was awake at 3.30am very thirsty and dieing for the Loo.So got up and had a coffee but I was wide awake  I feel just like when I was on steroids when i was on Chemo.

Im writing everything down in my Diary to show the Trial Team.

Lots of chest pain but that was happening anyway and with the bottom of my Lung very restricted that is to be expected now.

I had a lovely Face book message from the lady I said was on the trial. Her daughter has contacted me so Im really pleased to be able to compare.

She isnt on a computer so I honour her wish for privacy. But when we get through al this and we have something to celebrate I will try and meet her. She is on the Friday’s  list. They offered me Friday but it would have messed up my camping days, so I chose Monday.

We went shopping and I bought nice tasting foods so that I keep my appetite up. Im loosing weight so I dont mind a bit but it mustn’t just drop off- bad sign.

I also treated myself to another jumper for the going away this week.

We have had to check Louis paperwork and so he is all ready for the kennels. Bless !!

I did do some weeding and I will finish a little more gardening tomorrow.

So  we are living normal life now.

After my Blog yesterday I have had a comment –

Hi. I like your friend Ray worked in Devonport and also on board the Eagle, which was a big ship with lagging everywhere. I was a fitter and every chance when lagging was being removed I tried to keep clear. I have heard stories that even some office girls ended up in the same trouble.

Another point is that the dangers of asbestos were known about in 1948 but the powers to be did not act, or provide the protection needed.

I googled Devonport and came up with this great report.———————-

In the five years from 2008 to 2012, a total of 396 deaths linked to asbestos exposure were recorded in Devon and Cornwall.

Unsurprisingly, given the prevalence of asbestos in Devonport Dockyard, 120 of those were in Plymouth. A quarter were from incurable mesothelioma.

That figure would most likely be far higher but for the work of former dockyard union leaders Bill Goffin, John Williams and Dick Powell.

In turn, as senior dockyard AUEW/AEEU conveners, they would be the thorn in the side of managers, insisting that new safety regimes were introduced – and adhered to – despite the consequences.

The dangers of asbestos, which began to be used commercially in the mid 1800s, had been recognised as far back as 1898. By 1970, regulations came into force which set out limits for asbestos dust exposure.

But for Bill, there were no safe limits, and he set about adopting a “zero tolerance” to the material in 1973 – a full ten years before legislation was strengthened.

“I got all the shop stewards together, showed them the information and said ‘this has got to stop’,” he said.

“There was no protection whatsoever, in those days – none. We worked in the same conditions as people had in years gone by.

“The supervisory grades tolerated it because they had worked in the same conditions. As far as they were concerned asbestos didn’t hurt anyone because they had worked in it and they were all right. I decided we couldn’t carry on as we were and we then, in a piecemeal way, took action against it.

“We later realised that lads who were taking a stand were being crucified, being taken off overtime, and were being threatened with being moved. Eventually we decided to embark on a policy of ‘scratch one and we all bleed’. To a man it was well supported, no-one argued.

“We adopted a zero policy regarding asbestos and other dusty materials. We wanted a regime of cleanliness and inspection. It wasn’t easy – people were losing money, but eventually the management were forced to negotiate with us.”

What resulted was an inspection process which had to be signed off by both management and union reps before work started, although mistrust still remained.

Throughout the 1980s, national regulations on working with asbestos were tightened. It was eventually banned outright in 1999. For hundreds, though, the new health and safety regime came too late – they had already been exposed. They now face the possibility that those asbestos fibres will claim their lives.

Bill, John and Dick all worked, unguarded, with asbestos during their time in the yard. Dick, 70, now has pleural thickening – scarring on his lungs from inhaling asbestos. He recalled: “You would have someone working below you and there would be loose asbestos floating down on them like feathers, landing on his head. Now you look back and think you were really poisoning them.”

Bill added: “Lots of materials were not identified as containing asbestos. They were known by acronyms or trade names and people were working on it quite ignorant of that fact that it contained asbestos.”

John said: “I worked in offices where women were working, in those days on their typewriters, and we were ripping out asbestos alongside them not knowing what it was. If we had, we wouldn’t have touched it. They were walking around in it all and breathing it in and yet they were exposed to asbestos, having never been aboard a ship.”

While the men’s frontline union duties have long since passed, their asbestos fight goes on. Attending funerals of asbestos victims is a regular occurrence. Dick has been to two in the last month. All still receive phone calls from former dockyard workers who have now developed asbestos-related diseases and advise them on the legal and compensation process.

The random nature of asbestos-linked diseases, affecting some early, some very late, in life while leaving others unscathed, is a difficult question. “You could be working with someone for years and then suddenly he gets it and in the worse cases gets mesothelioma and you are left thinking why haven’t I got it?” said John, now 73. “There are wives who have contracted mesothelioma – but not my wife. There is no-one that can explain why.”

“That was one of our problems in fighting against it,” Dick added, “because some of us got it and someone of us didn’t.”

Bill said: “All the time people who you had worked closely with were becoming victims of asbestosis, they were coming through with pleural plaques and being diagnosed with mesothelioma and we had to pick up the pieces of that. Lads would come into the office with one word – mesothelioma – written on a piece of paper. We had to find the words to tell them it was a death sentence.

“We were seeing claims through the legal process and meeting with all kinds of awful tactics. The stalling tactics that went on, while people were seriously ill, over the matter of a few quid, I thought was disgraceful.

“All this impacts on you, it marks you and makes you even more determined.”

None of the dockyard’s “Holy Trinity”, as Dick jokingly refers to them, would take credit for saving lives, although John is quick to say: “Bill has probably saved hundreds of people in this city who worked in the dockyard from developing problems from exposure to asbestos.”

In turn, perhaps predictably as a union man, Bill is quick to deflect such individual praise.

“It is one thing that I will never regret,” he says. “The lads I represented, who lost pay and in some cases were vilified, stood their ground.

“I believe they have saved many, many lives because of the protection we insisted on.”

Read more: http://www.plymouthherald.co.uk/Plymouth-trio-fought-save-workers-asbestos/story-20882728-detail/story.html#ixzz34vRb3rlY

Rays Blog http://mesoandme.wordpress.com/2014/06/17/tuesday-98/

 

 

Living With Mesothelioma -My Diary- I have started the MK3475 trial today.

Today was the day to go to the Royal Marsden to start the  Trial MK 3475 which is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor. PD-1 is present o the surface of cells of the immune system that fights cancer. However, when these normal surface cells encounter cancer cells PD1 becomes inactive d by PD l1 which is found on the surface of the cancer cells. This has the effect of making the immune cells die or become exhausted, and stopping them from attacking the cancer cells. Blocking PD 1 with MK-3475 means that PDL1 cannot inactivate it and allows the immune system to start attacking the cancer again. Putting it into easy words he said that they have found that tumours  have a switch to turn off   the Immune system and put it to sleep and so the tumour can grow away. We switch the Immune system on and wake it up and they say (come on there is a burglar in the house. destroy )

We got out early this morning as once again we had to meet the M25, which was very good just slight hold ups. They call the Phantom hold ups as you never see why it happened.

Arrived and booked in. We waited to see the doctor who shook my hand and said Mavis Nye I have heard so much about you and all you do for Mesothelioma. I have had a female patient as well and she has sung your praises. Because of protocol I cant name her —-Please you know who you are and you have seen all my writings about the trial and have been to the Royal Marsden to talk about it. Please get in contact with me as you will be the second woman on the trial if your Bi-Op passes..

The Doctor gave me another examination, beating all around my lungs and listening in. He said the bottom of my left lung is restricted but the scan showed that anyway so no surprise there.

I then had to wait and wait. We had coffee and then Dinner.

The company making the drug had not been informed I was starting the trial.

The drug had to be Registered as well. Shambles at that point as I cant see why they weren’t told.

2.30 The drug arrived. I sat down and had bloods taken and the man next to me was having bloods taken. I said have you got Mesothelioma and he confirmed. So we are the first man and woman on the trial. I pulled rank as like twins, one them have to be born first and my line was put up first .

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We both said here we go this is going to be the one.

We swapped stories and I asked if I could put it here on my Blog as a guest blogger.

We will be able to talk about and compare how we feel and any side effects.

So thats it the drug is in so we will  have to wait and see how it goes now.

Rays blog http://mesoandme.wordpress.com/2014/06/16/monday-90/

Guest Blog —

Alistair E Hault, RN Retired

A Stokers Story….

On a cold, wet February morning in 1964, a lone youth stood, suitcase in one hand and travel warrant in the other, waiting for the train which would take him on an adventure of a lifetime.  It seemed forever since the day he had walked into the Naval recruiting office on Green Lane in Derby to join the Royal Marines and for him to come out, an hour later, having taken the Queen’s shilling and joined the Royal Navy.  Some recruiting Chief Petty Officer had persuaded him that, having worked for 3 years, since leaving school, as an apprentice Plater/Welder, he would be better off and more useful to the country as a Stoker.

The long journey from Derby to Plymouth seemed to go very quickly; after all, it was an adventure, like the Enid Blyton’s Famous Five books he had read as a boy or even Biggles.  The train pulled into Plymouth station later that day; new friends had been made on the journey doing the same thing.  Gone were the worries of what lay ahead; we were all in it together and the team feeling had begun.

Outside the station stood a row of dark blue Navy lorries like buses at a foreign holiday destination and we all piled on after being checked off a list by lone Leading Hand.  Over the Tor Point ferry and on to HMS Raleigh for a day of haircuts and knitting out with uniform.  Later on, the relaxation in the NAFFI Bar for the ones old enough to drink and some that were not.

Next day the early start of the beginning of training on the Parole Ground (got to knock the idea of “civvy life” out of you and instil some discipline and did they ever do that!).  This day was put aside for splitting recruits into divisions (named after Admirals) and allocating mess dormitories.  Five weeks of knocking “civvy street” out of everyone and instilling “The Navy Way” into you.  Then the hard work began with the introduction of Trade training and the first introductions to the inside of a ship, although on land.  Pipe work, Admiralty three-drum boilers, system layouts…….all had to be learnt; examinations had to be taken.

Doing the trade introduction was the first time we came across “LAGGING” pipes.  They were covered in a white painted substance.  Little did we know that although it was there to protect us it was a killer waiting, in later life, to creep up and kill us.  During this training period was the time recruits were introduced to the “real Navy”.  The frigates, old WW11 destroyers converted into type 15 frigates with all the old machinery, engines and boilers, all of which were covered in lagging.  Every engine part that got hot was covered in this white covering like plaster of Paris.  Little did we know that this was asbestos and it was a killer.  No-one knew in the 1960’s what asbestos was, just that it stopped you getting burnt by the hot steam pipes throughout the ship and, believe you me, there were a lot of hot pipes, even in a small frigate.

After my trade training and an extended special course to get my rank early I was drafted to my first ship of the line HMS Eagle, a Fleet Aircraft carrier and a big ship.  Duties on board were mainly watch-keeping in the engine rooms, boiler rooms, gear rooms and fridges.  All of these areas of watch-keeping were full of pipes lagged with asbestos.

Two years on board HMS Eagle were some of the best years of my life, travelling the world from Mombasa to New Zealand and beyond; long stays in Singapore, Hong Kong, then back home to get married and go through the problems of living accommodation.  Starting firstly in a one-roomed flat in Southsea in the middle of winter with a one-ringed electric stove to keep warm.  Then the luxury of a three bedroomed flat on Portsdown Hill, Portsmouth overlooking harbour and dockyard.

During this time I was working in Portsmouth dockyard on numerous ships under the flag of Fleet maintenance.  This involved day after day stripping lagging off engine room components to get at them to be maintained and then re-lagging them by a special lagging party.  Two years of this and then a draft to HMS Triumph in Singapore dockyard for 2 years married accompanied and living in Malaya, on call to go to ships needing maintenance in Mombasa, Bahrain, New Zealand, Hong Kong doing maintenance and dealing again with asbestos.  I didn’t really stand a chance!

Did I join the wrong branch of the Navy?   I didn’t believe so at the time.  If I had been a seaman instead of a stoker would I have ended up 40 years later with mesothelioma (asbestosis), probably not.  No-one knew then, not even the Big Boys in Whitehall or did they?  I was proud to serve Queen and Country and wouldn’t change it one iota, but I would have liked to have been looked after better by those who should have known better.

In 1973 by term of service ended and I joined the Derbyshire Constabulary.  I had no further contact with asbestos during the period 1973 to 2002.  I retired from the police in 2002 and it came all too quickly.  My retirement really started then; walking was my big joy – Cotswold Way, Great Glen Way, no problems!  Snowdon, no problem and I don’t mean on the train.

Then came the day walking in the Peak District in Derbyshire.  It was a winter’s day and I came to a hill which normally would have caused no problems but this day caused big problems.  I was unable to breath and I thought that I had caught something but I put it down to a cough and the flu/pneumonia jabs that I had recently been given.

A week later, after I was starting a cruise in New Zealand, when I came to a steep hill in Auckland I had to admit that something was wrong.  Badly wrong!  I carried on with the cruise and came home.

A few days after returning I visited the Nurse Practitioner at my local surgery and was treated for an infection with antibiotics and also had an s-ray.  I was lucky that they had an x-ray department at the health centre.  The results of the x-ray showed high levels of fluid in my right lung.  I was referred to Royal Derby Hospital and I was diagnosed with mesothelioma.  I was lucky again because a thoracic surgeon was there at the time from Nottingham City Hospital.  He offered me certain options, one of which was radical surgery to remove the outer layer of my right lung to try to eradicate most of the cancer developing there.  I went for that option and 4 weeks later, at Nottingham City Hospital, I underwent surgery.  I went through a lot of pain and discomfort but it is now 3 months since the operation and I am on the mend.

I will be going on holiday to America in September; I made this my target right from the outset.  It was always my first question to all the professionals that I have seen.  “Will I be able to go to America in September?”

One person who helped me greatly to sort out what I needed to do was an employee of the Asbestos Helpline, Colin Tunstall.  One thing he told me was to get in tough with the Veteran’s Association.  I completed the claim form and they did all the work that was needed for me to get a War Pension which I was awarded some weeks later and payable for the rest of my life.  As I was a member of the Royal Navy when I contracted this disease I was unable to sue the Crown.  This is because there is immunity to prosecution for anyone exposed to asbestos by them before 1987.

One thing I told Colin was to be positive; it’s not the end of the world if at time it might seem to be.  There is a story in Norse mythology about the “Tree of Life”.  Under that tree sit 3 spinners, spinning everybody’s fate.  If your fate is that your time is up there are no surgeons in the world that can change it.  “Que sera sera!”

 

 

 

Living With Mesothelioma -My Diary- A Wonderful Weekend at Canterbury

We have had a wonderful couple of days and all at Canterbury P&Ride. As you know I meet friends there as they go and come back from the Tunnel. They live up North and I dont get to see them on rallies.

Janet and Drew were off to france so it was lovely to meet up with them.

Janet R Naylor

We were parked up by the time they arrived Friday and we sat out in the sun and boy was it warm.

Hungry we had a lovely meal in the Old Gate pub

http://www.vintageinn.co.uk/theoldgateinnbridgecanterbury/

Well pleased with the service and the cooking so we were all happy and enjoyed ourselves.

It was still light when we went back to the motorhomes and was able to sit out and natter on.

Saturday we said bye and saw them on their way.

The P&R was full of Motorhomes and people from all over Europe, I love the friendly atmosphere and helping people where to go and what to see. Why other Councils dont follow suit Idot know as we all went down to the City all spendinding money. I like to stock the M/Home up for the summer with all the soaps and deodorants etc etc. I bought clothes and we had a wonderful breakfast in the Weavers Cottage.

http://www.weaversrestaurant.co.uk/

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The breakfast was huge and we were so full up when we left

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My Scramble egg

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Rays Full English

We shopped until we dropped just like tourists its so funny how staying in our home City can look and seem so different.

We went back on the bus shattered and had a coffee and I went to sleep for an hour -well we both did.

I started to get uncomfortable in the back and then the chest. The bottom of my Lung hurt more than usual. The thought that I carried all the shopping and we were on our feet for 4 hours. I was proud I had walked up and down the main road and in and out of all the shops, but it had taken its toil.

I went to bed to watch a bit of telly and took my Paracetamol but woke up about 1 or 2am. Took a couple more but the pain was so bad. It is a reminder that things are moving on inside and The Meso thins he is getting a hold.

I cant wait to start the trial tomorrow. It is really becoming necessary I do know that. I keep thinking I was given 3 months at the start so if it is growing and has got back to the same sizes and yeat more coverage than doe the 3 months come back into play again.

So here we go Im home unpacked washing done and all ready for tomorrow. Up at 4 am and on the road 6.30.

Please let it be the success I know it will be Im very confident.

Rays Blog http://mesoandme.wordpress.com/2014/06/15/sunday-87/

 

Living With Mesothelioma -My Diary – Scan Day and Screening Day at the Royal Marsden –Drug Day Monday

Gosh we were up at 4am as I had to shower breakfast and Ray had to walk Louis.

Today was The Royal Marsden and all the Screening to confirm my going on the trial. We arrived at 8am due to an accident on the M25. When we got to the queue of traffic we sweated as they can shut the M25 and you can stay there all day. This was our worst nightmare. Lucky the moved everyone involved over to the inside lane-this was the hard shoulder but now its the inside lane and boy does it cause problems now. We sailed pass and our speed picked up. This is why we will leave early.

They told me today they make my drug up when I arrive so getting there earlier might be a good idea anyway.

I cant get over how clean and shinning the hospital is. Toilets as well are spotless.

So we went to the 3 floor to Oak Ward and waited until the staff arrived. I was assigned to a very nice Nurse. She took so much blood and put them in many tubes and labelled them all up. The cannula was in  for bloods and also for contrast used when scanned.

 

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This is called a baseline scan as it is used as a marker to watch how the disease grows or shrinks. They bought the 12.40 appointment forward so off I went to the department and I was shown to the wrong one. After waiting ages a nurse ran in and told me to follow her . Down the Staff stairs and into another scan department.

What I couldn’t get my head around was all this equipment and all the staff and all hospital in fact was for just Cancer. It does seem to make you feel well looked after and being on a Trial you are really looked after.

The Scanning staff had me lay back on a scanner (Really up to date state of the art ) They set up the contrast and disappeared. I did a breath in and breath out and they came rushing in. You have an under wired bra on –whoops!!!.

They striped me like a conjurer on the stage. I wasnt to get up just roll as they had the scan all set up.

Doing this bent the cannula so she was so worried. If I felt any pain shout. I didn’t though so all went well.

No she said to drink for 24 hours to flush my kidney -That’s something I have never been told before. Didn’t know they were very worried that my right hand kidney has shrunk and my other one is very out of shape. When I saw the Doctor he told me this and I said that I have lived since I was 2 like that and that the made me a new Urethra  when I was 45. It now works 100% after all the Chemo I have thrown at it.

Made me laugh as I was just confirming what was down in my notes.

So he finally said, after more form filling, Ok your on the trial and start Monday.

Yipee. Another Mesowarrior has just signed up and is having a bi-op looked at so I cant wait to meet him/her.

I sat and had read through their Magazine Im amazed at the work they do.

http://www.royalmarsden.nhs.uk/about/publications/Pages/rm-magazine.aspx?PRINT

That was it all done so we came home again very happy. Ray seems content now we arent going every week so we can plan days away through the rest of the summer.

Mesothelioma UK have sent out their email News letter but it is a download so we will have to wait for it to appear on their web site http://www.mesothelioma.uk.com/news-and-events/newsletters/

Linda and Steve Wride have written about Steves Trial and Journey thats on Page 3 and on Page 6 is my write up about the Saatchi Bill really pleased we Warriors are writing more Articles.

Rays Blog http://mesoandme.wordpress.com/2014/06/12/thursday-91/