Five Years a Mesowarrior

By Raymond Nye

A woman's 5 year fight with a Terminal Cancer. Having been given 3 months to live ,she set upon a journey through 4 chemo regimes and 2 phase 1 trials. All without success .This after all this time resulted recently once more being told we have no more treatment to offer you. Just go home and get on with your life. That was not acceptable to her. She decided to widen her search. This disease was mesothelioma. It is an Asbestos related disease. Caught from washing her husbands clothes over 40 years ago when he worked in the Royal Naval Dockyard. She currently runs her website and several Global Facebook sites for worldwide victims of this disease. She is on personal speaking terms with Lords, Professors, Doctors and Members of Parliament. Who highly respect her and her work. She travels the country giving talks ,has been on TV, Radio. She is a NHS Patient Rep . Mesothelioma did not know what it took on when it took on this woman.

• Language: English
• Publisher: Raymond Nye
• Release date: Nov 26, 2015
• ISBN: 9781311883827

Raymond Nye

I am 79.Retired but still active. I have only recently entered the realm of Writing. My first book I am a Mesowarrior was a biography of my wifes fatal disease mesothelioma.Commonly refered to as Asbestosis.It is currently enjoying sales world wide.Profits on sales will go to the MavisNyeFoundation. All the revenue from sales curently goes to this charity.The second reason was to enlighten folk of its nature and give hope and dignity to a sad situation .A follow up book Five Years a Mesowarrior describes her fight after all chemo and 2 failed trials.My Second, Coffee Time Poetry is short collection of my poems selected from many I had written over the years and simply pushed to the back of the drawer.My 3rd ,A Surprise Christmas Present. Is a short true adventure of my strange Christmas present that both frightened and excited me.My 4th. Every Day makes a Difference. Is a biography of my childhood from 2 years old,living with an abusive mother, being dumped at 4years old at my first School, earning a few bob which mother took from my first Job,then on toMY Aprenticeship Capers in Chatham Dockyard Where mother took even more money.How did we ever learn a trade But we did. My memories of life as a National Service man. My eventual demob,Getting maried and then a return to normal life.My 5th, A short Story of fiction. About an old mans fears on a dark cold winter evening just what is out there.Its available for free.It was a toe in the water for me writing fiction.Also, an un-abridged version with legal and media comments included on the un natural death of my 16 year old daughter.Revenue from these also goes to mesothelioma uk.

Book preview

Introduction

I hope you have read my First Book I am a Meso WarriorIt will help you fully enjoy this, sequel.By using extracts from my Diary and Daily Blog. rayandmave.wordpress.com. Which has helped me to remember my journey through My terminal Mesothelioma. Most of you have shared my Ups and Downs. All of which is Portrayed in My First Book. I am a Meso Warrior I must thank again all those lovely people who have offered sympathy, help, advice, support and just an ear to bend. Also my Husband Ray who doesn’t say much, but I can read it all in his eyes .For his unbending support, and I am sure it will continue, as this insidious disease progresses.

Thank you to all my Doctors and nurses for their help. Without all these peoples support I might not have made it this far. You have all given me the strength to fight this. My thoughts behind this book are to give other Mesothelioma sufferers the insight to see that it’s not all doom and gloom. That you can still have a life after diagnosis.. For those sufferers who have refused chemo accept it. Its not pleasant but its better than an early Death. Don’t give up or sit back and wait for an early death. You just have to grab each day and do the best you can with it. Life’s a bitch when it’s down. But Life is so wonderful when it’s up. Just try to ensure that most, if not all your days are up and life will be wonderful. An awful lot has passed under my Bridge since the Publication of My First Book. " I am a Mesowarrior." That encapsulated my Life’s up and downs During my First Year until August 2010.

PREFACE

I first came into contact with Mavis Nye through a Motorhome forum. She was a regular contributor to many different topics, and her cheerful and lively comments made her many friends. Like others, I was shocked when she announced that she had developed Mesothelioma, a particularly nasty form of lung cancer. I knew the prognosis wasn’t good. With this cancer, there is no cure. There is only a hope to stabilise this insidious condition. Mavis’s life expectancy in June 2009 was 3 months, to 2 years at best. Despite this devastating news, Mavis, with the support of her husband Ray, decided that she wouldn’t give in to this nasty, as she calls it. She would fight it every step of the way.

As she and Ray fought the disease, endured the hospital visits and treatments, she collected a growing army of supporters. She joined Forums and social networking sites, gathering people around her who had been touched in some way through this terrible disease. Has been interviewed and published by her Local newspaper. Been featured in Yours Magazine. Has spoken at Novatel Mesothelioma .UK. Year 5 conference in the company of Europe’s most eminent professors and Oncologists. In this captivating, funny and emotional book, she recounts, in her own words, her day-to-day dealings with the disease, and with life. She refuses to let it beat her without a fight, and she and her Meso Warriors continue to generate publicity about the disease, its causes, and its treatments.

Her fight continues.

Gerald Hornsby December 2010

Five Years a Mesowarrior

is

The Next Step on my Journey

Chapter 1

23rd August 2010

This is the Next Day of the Rest of my Life. My Diary well I’m not going mad there really is such a thing as Chemo Brain. I have come down to earth from all the excitement and all the good wishes of friends, which has surrounded me with Love and Joy. I have emailed my GP with my latest results. He is pleased with the results and so I started looking at the pains and stiffness I still have in my arms and legs and I have found there really is Chemo Brain and it can last for 10years!

Yes, Chemo Brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown. Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with Chemo when compared with those who were not treated with Chemo. These changes were still seen on scans 5 to 10 years after treatment stopped What is known is that Chemo brain is a real problem that affects both men and women. Even though Chemo does not seem to be the only cause, studies have suggested that up to 70% of people who have Chemo will notice symptoms of Chemo brain

So when I’m talking and I cant remember what the next words are I’m not lying when I say. Its My Chemo Brain again. only I feel normal again!

Well we are off again on our travels first to spend a few days at Maidenhead to see my son and girlfriend then off for the Bank Holiday at Warwick with my friends of MH facts and as it is my Birthday as well we are going to have a party. Even if it has been raining!

26 August 2010

We have travelled to Hurley River Park at Hurley Maidenhead on our way to Warwick. Arriving Tuesday we settled in and had a walk along the river looking at Parkhomes that have been sited so near the river’ but are very nice and I love the location. Our younger son came to visit with his family. That was a pleasure. On Wednesday we got up to a very wet day but this didn’t dampen our spirits and we walked down through a farm and into the village. This led us to Hurley Lock where we watched the boats going down as the lock emptied and then up again as it filled, then they went on their journeys.

The boat people were very friendly and we spent a while passing the time of day with each of them. In the evening Terry came and picked us up and took us back to dinner at his house. We chatted away the evening until it was time to come back to the Park and so to bed. Today we have been for another walk to the lock and shopped in the village shop so now we have plenty in the cupboards to see us through the weekend at Hatton where we move onto in the morning. I’m really looking forward to the rally with so many of my cyber friends. The rain has finally stopped and we have had another walk around the river. We have had dinner now. There have been so many Tents ’ here with young children and despite the weather they have all had a great time and so well behaved. The parents have bought tents as they say holiday’s abroad are too expensive but they have had a super time at Legoland as this site is near to that. Well back on the road tomorrow and off to Hatton and its my birthday yipee!

1st September 2010

August Bank Holiday

We went to the MHF Global Rally at Hatton at Warwick and had a fab time. It was my birthday on the Friday and I had so many cards and best wishes it was great. The weather could have been better but there was so much warmth from my friends it just didn’t matter and we were able to sit around. and chat away. Really having a good time.

I had a friend talk to me about the fact she was born and lived on a Blue Asbestos Mine in South Africa. Her Father died of Meso and her Mother died of Lung Cancer

(that just had to be meso) She was so worried after hearing what has happened to me that she went to the Doctors to ask for a Scan.

The Doctor has said that as she is showing no Symptoms she will not allow it as it’s not necessary and that she will go and study the subject as she knows little about the condition. Shame on her. How can that be the right answer, with a history like that, of coarse she is worried. I have told her to have a private MRI Scan, as the money that it will cost must be well spent, to put her mind at rest .She is going to do that. Another friend has a Cousin who has just been diagnosed. So I was able to tell him all I have been through and told him to get his Cousin to read my blog where I hope I can help him with all the info I have collected over this year and a half since I was diagnosed.

Well back to my weekend. Saturday we walked in a Pumpkin field that was at Hatton Animal Park where they are growing huge Pumpkins for Halloween where the children will carve them out and put candles in. We had a dog show in the afternoon and Louis was entered. We hoped he would behave. Would you believe it? Behave he did as we walked past the line of dogs and he stood so very quiet as the judges looked the dogs over. He didn’t win but he was a winner to us and we gave him a treat when he went back to the M/Home. That evening we had an open-air concert by an Elvis impersonator and Kenny J our resident Entertainer, who looks like Freddie Star, he is just as hilarious. We danced the night away and had a really goodnight. Sunday was a walk by the canal and then back for a walk through the fields with Louis off lead and chasing the ball.

The evening was a quiz night and then more entertainment from Kenny J. where we were dancing having just a great time .Monday we walked Louis with Gerald’s dog Tess and Mo’s dogs so Louis has had a special time with his friends. He really isn’t a problem anymore which he really proved when the 2 Jack’s jumped out of the M/Home window and chased him all over the campsite. Well Tuesday saw us having to say goodbye to everyone as we all returned home to the washing and getting the M/Home ready for this weekend as we are off to Canterbury. I really have a new lease of life, another chance to enjoy life to the full for a little while longer than I first thought.

Chapter 2

29 September 2010

We travelled through Wells and Cheddar to arrive at Brean Sands last Tuesday. We came here last year just before I went into Chemo. So it is great to come back and relax this time but our friends have been running us around in their car. We have been to Weston and even played Bingo there where I waited over 6 mins for number 30 with a prize of £1700 nearly in my grasp .Hey ho it wasn’t to be.

Today we have been to a huge market in Cheddar and there were a few bargains to be had. Then a trip into Burnham on Sea, for a wonderful lunch. The entertainment has been great in the Beachcomber Club here and the other night we were treated to a Amy Winehouse act who then did a Lady Ga Ga act that was out of this world—what a great night. Last night was an act Total Madness and that was head banging! But great to. We are going into a week of Country and Western here in Brean where the whole town becomes one big Western Show so more fun ahead. We are nearly at the end of a great holiday as Wednesday we have to travel home to get ready for the British Lung Foundations Conference a Hotel in London and I haven’t prepared my speech yet.

Chapter 3

29th September 2010

Well-Done Richard.

Asbestos saga proves our feeble press watchdog has no bark and no bite It took a seven-month battle to get the Daily Mail to correct Christopher Booker’s dangerous claims about asbestos. Guest post by Richard Wilson. My Big Day Saturday. I have been invited to talk at the 5th Mesothelioma UK Patient & Carer Day 2010 2nd October 2010 (Saturday) Venue: Novotel London St Pancras

Patients, relatives and friends register free of charge. My speech is written and my Train Ticket has been bought I have bought a great outfit and I’m ready to deliver my story to this conference.

I will write about my weekend on Monday—wish me luck xx

4th October 2010

What a Weekend. I had to put Louis in the Kennels on Friday as we had to go to the Mesothelioma’s 5th Conference on the Saturday and as we had to get such an early train we wouldn’t have time on the Saturday. It was hard leaving him but we did and then never slept all night worrying about how lonely he must be. On Saturday we got up at 5 rushed around and set off for Whitstable Station for the fast train to London.

Err only to be told there was working’s on the line and we had to go down to Ramsgate to get the fast train from there—not happy. We got a Ramsgate train and when we arrived we had to wait an hour for the fast train–ekkk. We did get the train and it speeds along so fast, which gives you a feeling of flying. We arrived at St Pancreas and just got to the Novotel Hotel on time and we had a coffee and calmed down. So many Meso Warriors to meet it was lovely to see my Facebook friends. We heard the Doctor, Scientist and nurses talk about their work in the field. Also the famous Professor Vogl it was great to hear so much information. Debbie gave a wonderful speech as she is also a fellow sufferer and then it was my turn. I spoke from the heart and it was soon over and I was so emotional and ran off the stage with the clapping ringing in my ears.http://www.youtube.com/watch?v=RnYU5_NK7ic&feature=player_embedded

When it came to the end I said my goodbyes and went to our hotel near by with our friends Bill and Betty and dumped our bags and then went to a pub for a well-deserved drink and a meal. Tired we went back to the hotel and dropped straight off to sleep. In the morning after a good breakfast we went to South Kensington and visited the Museum and then to Trafalgar Square to the National Galleries. It was soon time for us to say our goodbyes and set off for Ramsgate, again on the fast train and then another hours wait for the Whitstable train. We didn’t get in until 9pm Sunday so we answered all our emails and all the congratulations it had been a memorable day.

Got up this morning did an update and boom!!!! My Computer went Blue screen!! Oh no we couldn’t do anything with it so we rushed out and bought a new one–an expense we hadn’t planned for. We picked the dog up and the owner congratulated Louis for being such a good dog as he really had been so well behaved—so proud of him.

He fell asleep when we got in and so did I to, as I was exhausted. Ray has set up a web site for us meso warriors at www.onestopmesothelioma.co.uk and we have spent all afternoon sorting out info for it–this will keep us busy for a long time but at least it has given Ray something to focus on. Keep Fighting Meso Warriors and see you all next year xxxx

5th October 2010

I have spent the last two days glued to the computer talking to so many Meso Warriors and friends we just mustn’t let the subject of Asbestos die down.

Only today the programme 60 minute make over said the young couple had stripped the walls of Artex—I wonder if they took all the precautions–I bet they didn’t.

The prime minister

Dear Mr Cameron

I have started a fight for my life because I have Mesothelioma.

The video clip is my speech at the Mesothelioma UK 5th Conference in London. I am amazed at how little is known of this disease and I would like more time and money offered to this disease especially to Professor Vogl’s http://en.wikipedia.org/wiki/Chemoembolization

Patients are having to pay and travel to Germany for the treatment, which tires them so. The story of one woman who has like so many others had good results with the treatment. I would love the NHS to begin to help us with the treatment here in England, as the Professor wants to help Medical Staff to train in the use of Chemoembolization

Please give some thought and help to us.

Kindest Regards Mavis Nye.

6th October 2010

Dear Mavis

5th Mesothelioma UK Patient & Carer Day 2010

Date: Saturday 2nd October 2010

Venue: Novotel London St Pancras

I am writing to thank you very much for participating in the Mesothelioma UK Patient & Carer Day. I am pleased to confirm that 49 patients, 104 patient relatives/carers/ friends attended the day plus 36 from asbestos support groups, charities etc (total 189). The feedback received has been excellent.

Much appreciated. Best wishes to Ray.

Kind regards

Dawn

Dawn Mckinley

Operational Manager

British Thoracic Oncology Group and

Mesothelioma UK – National Macmillan Mesothelioma Resource Centre

Hospital Management Offices

Glenfield Hospital

Leicester

LE3 9QP

0800 169 2409

www.mesothelioma.uk.com

7th October 2010

My Friend Jan has set up a Fund.

Kevin Weston a Breath of Life. Fund

Thank you for taking the time to look at this page. If your here you have probably lost a loved one through some type of lung disease and for that I am truly sorry x

Let me tell you the story of a very brave man who fought but lost his battle against a crippling lung disease.

Kev was diagnosed with mesothelioma a lung cancer caused by exposure to asbestos. Kev fought the whole journey and supported all of his family through this heartbreaking time, he never once complained just said It’s the luck of the draw and I was unlucky. Kev passed away on Sunday 19th September 2010 aged just 52. 2 years and 8 days after being diagnosed. He left behind Daniel, Shelley and Russell his much loved and devastated children and his lovely grandson Rhys- the apple of his eye x

If it hadn’t of been for the people I met on facebook known as the Mesothelioma Warriors I don’t know how any of the family would have coped, they gave us advice, support and inspiration all the way through. With their help our sons have so far managed to raise over £2,000 for mesothelioma research.

Kev didn’t want any flowers or tears at his service and we asked for donations, and again nearly £1,000 was raised for mesothelioma research. Now our plan is to raise a further £5,000 over the next 5 years to give hope to all of those still suffering or those about to be diagnosed. Please try and donate because every single pound will help another family in their journey. There is not enough awareness of this illness or the affects it has on the family and this needs to stop.

There is so little research done into finding a cure for mesothelioma and most people have to pay for their own treatment- please help put an end to this suffering. With your help this could be known as a curable cancer!

http://lunguk.tributefunds.com/fund/Kevin+Weston/showFund/

What a lovely Day the Sun is out.

I have been tidying the garden up today as the sun has been shining away so it looks better for the winter months.We soon put the clocks back and the nights will be dark earlier–such a shame.I have an appointment for my Scan on the 10th November and for the Oncologist on the 20th November so I hope and pray for more shrinkage. Louis is back to normal after his holiday in the kennels and is joining in again in playing and not so nervous which is good to see.Asbestos awareness calendar. This is our official Logo for our Mesowarriors web site and we are going to make a Calendar to sell in 2012 with pictures of us girls in with workmen in the places where Asbestos is still a danger. It will be good if we make people aware of the dangers.

8th October 2010.

A letter of Hope

Debbie received a letter and we have acted on it: - Thank you for contacting the BSIR regarding the proposed research study proposed by Professor Vogl. I note the correspondence with Dr Edwards and concur that quite a lot of work would be required before such a trial could be undertaken in the United Kingdom.

Clearly Dr Edwards is an expert in mesothelioma and has contacts with the National Cancer Research Institute (NCRI). In my experience such a trial requires a centre which has a specific interest in the treatment of the underlying condition and a team of experts able to offer all the required treatment modalities.

There are undoubtedly many interventional radiologists who would be able to perform such treatments, which in their own right are not technically challenging.

If Professor Vogl and Dr Edwards know of suitable centres BSIR would be able to put them in touch with a local interventional radiologist.

I hope that this is helpful and wish you well with your treatment.

Yours sincerely,

David Kessel

CC: BSIR

Good Morning.

Thank you for listening to me at the Novotel Hotel.

So you know my background and I would like you to at least consider Dr Kessel’s Letter to Debbie. I didn’t receive any compensation from my husbands Company so it is impossible for me to travel to Germany and pay for Professor Vogl’s treatment. I think you cannot deny that his treatment is working very well, as there were many of his patients in the room who prove this fact.

I know its not a cure but I’m prepared to be part of any trials UK trials because the trials are a possible cure for the future

Kindest Regards Mavis Nye

Things are happening.

Just had this from Kate Corr (a Woman’s magazine Writer)

Dear Mavis, thanks so much for contacting me. I am very interested in your story and would like to pitch it to a few magazines. Have you spoken to any magazines before?

-well that’s me taking it to a wider audience.

We are fighting Meso Warriors

9th October 2010

Steve McQueen and mesothelioma.

The King of Cool

As part of the 30th anniversary of Steve McQueen’s death on November 7th, the British Lung Foundation is reminding people to be aware of the dangers of asbestos after Steve tragically lost his life to Mesothelioma, an asbestos-related cancer, at only 50 years old.

Steve McQueen: © Barbara Minty McQueen from the book Steve McQueen: A Tribute To The King Of Cool by Marshall Terrill. The celebrations of Steve’s life will also see his widow, Barbara McQueen, and his biographer, Marshall Terrill, coming to the UK in November to promote a new book about the iconic movie star. Steve McQueen: A Tribute to the King of Cool tells the actor’s story through the eyes of those who knew him best: family, friends, co-stars, business associates, acquaintances and adoring fans from around the globe.

The book also details Steve’s battle with the lung cancer Mesothelioma. The disease kills one person every five hours in the UK and is caused as a result of asbestos fibres being inhaled and 15 to 50 years later the disease becomes active. As part of the recent ‘Be Asbestos Aware’ campaign, the BLF is urging trades people and homeowners who do DIY to be aware of the dangers of the material and ensure they get the right advice before handling asbestos containing materials. A series of top tips have been put together by the BLF to offer guidance on what to do if asbestos is disturbed. There is also an online video highlighting the dangers.

Dame Helena Shovelton, Chief Executive of the British Lung Foundation, said: Steve McQueen was one of the greats and his iconic movie roles will keep him in our memories for ever. I don’t think Steve was aware of how or when he came into contact with asbestos. This is the same for many other people. Mesothelioma is a cruel disease and we are delighted to be working with Barbara McQueen to ensure everyone is aware of the dangers of asbestos to try and limit the problem in future! The UK tour for ‘Steve McQueen: A Tribute to the King of Cool’ will start on Thursday 4 November. The promotional activity is as follows:

11th October 2010

Journey back in Time.

Woke up to another really wonderful sunny day so worked hard on all my emails so as to be able to go out. We Messo Warriors are going to do a 2012 Calendar of very artistic photos of how each of us contacted Mesothelioma from Asbestos. My pal Chris has agreed to be mine and Debbie’s photographer and any of you that know his work will know what a Coup that is. He hopes to make mine a subject for a competition at his club so I’m really pleased if he pulls that off. Anyway we had to get a new tap for the Motorhome as ours has a leak in it. We set off with the dog and went to Harrietsham but they haven’t got the one we want. They did have a tap but it was £74.00.Why so dear.

We then decided to run to Chatham to the Camping shop there. We stopped at Bearsted village green to give the dog a playtime and he found a football much to his delight. We kicked it around for him as he loves football and we had to leave the ball as it might have been a child’s but Louis had no thought for children he wanted the ball and sulked back to the car. Off we travelled again to Chatham, but guess what, they didn’t have a tap either–why didn’t we shop on-line. This was now a journey back in time as we used to live in the area before we retired so we called in at Capstan Park and it hasn’t change a bit. After strolling around the lake we put the dog back in the car and drove home to Lunch. The sun has shone all day, which is just great.

I have done so much these past days working with Mesothelioma on Facebook as we set up the calendar and then I have cleaned and tidied the shed. I then started in our wardrobes as I have taken all the clothes out and swapped ardrobes with Ray, all this has resulted in my finding clothes I had forgotten we had, so they are all sorted. I have made a note to myself " I really mustn’t buy Ray any clothes for Xmas

Chapter 4

14th October 2010

I have learnt something today. On Facebook a woman wrote Hi all, my name is Melanie, and my dad has recently been diagnosed with Meso. I was wondering if anyone here has any knowledge of ‘multi focal motor neuropathy’ which is something my dad also has. It is apparently a very rare condition, but just wondered if anyone knew about it and it’s effect in relation to the Meso. Currently dad has been offered no treatment at all, as they say he is not strong enough to cope with anything. I am just really angry with the whole thing, as the medical profession seem to have completely written him off and all they are interested in is helping with pain relief, surely there’s more that can be done! He is only 68 and should have years of life ahead of him. And one answer was:-Kevin suffered with nerve damage as well it affected his left hand and his right leg, they did 3 lots of radiotherapy to try to push the tumour back away from his spine which was affecting him.

And yet they keep telling me they don’t know why I suffer with my hands and feet. They do say there are only 3 of us at K&CC hospital with meso .is it really still that rare down here. Is it because they didn’t have Industry as fishing was… the main occupation here in Whitstable. This is the first I have known any body with my symptoms and as you know I have always said my arms and hands are twisted and my feet are numb so at last I have an answer that I have always known –the Tumour is laying on nerves. I do accept that it is where my tumour is laying that it is damaging my nerves that explains so much. I will tell my Oncologist that others have nerve damage and see what she says.

I have received a letter from the House of Commons today and Julien Brazier has sent a reply to my Email asking for help.

His reply is:-

Dear Mrs Nye

Thank you for your email of the 8th October about Professor Vogl’s work on mesothelioma. I was sorry to learn that you suffer from this yourself and can appreciate that you are very keen to see trials of Professor Vogl’s experimental treatment established in the UK.I have, as you asked taken the matter up with the Health minister, asking for his comments on the matter and I shall let you know as soon as I receive a response. In the meantime, you will be pleased to learn that the Department of Health has asked the National Cancer Research Institute to carry out a review of research in mesothelioma and other asbestos-related diseases.

The outcome of the review will inform the future strategies and work of the Institute’s partner funders, and help develop the potential to build research capacity and increase research investment in asbestos related diseases.

The review is due to report shortly and I look forward to reading it

J Brazier

An interesting Piece in the Daily Mail today.

Cancer is a man-made disease, fuelled by the excesses of modern life, study of ancient remains from fossils to mummies has concluded.

A review of Egyptian mummies, fossil records dating back to dinosaurs and classical literature found tumours to be extremely rare until recent times, when factors from pollution to poor diet made life more toxic. They discovered that the disease rate has risen dramatically since the Industrial Revolution, in particular childhood cancer – proving that the rise is not simply due to people living longer. They believe that a better understanding of the origins of cancer could lead to new treatments for the disease which claims more than 150,000 lives a year in the UK alone.

17th October 2010

On Saturday Ray and I went to the GP Surgery to have the Jab and there were so many patients. It was packed out. The Nurses were working very fast, that we soon got called in to roll up our sleeve and receive the jab. That was that for another year. Off we went to do some shopping and then had a great time walking Louis. We had Gammon Steak for dinner and settled down to watch X factor on the Telly, went to bed and watched a film until I went to sleep.

Woke up with a sore arm and then run to the bathroom to be sick. Stayed in bed while Ray did the housework and take the dog out as I slept on. I did start to feel better but then slept all afternoon. Tonight I feel better, a lot better so I can only think that putting two vaccines together has hit my Immune System. They have given us the Flu and Swine Flu together this year. Oh well I do feel OK so that’s it for another year.

This week is going to be exciting as I’m talking to Frances McKay, a Macmillan Lung/Mesothelioma Clinical Nurse Specialist, At Medway Maritime Hospital as she has asked me to help set up the Kent Group. At the moment I don’t know what that will entail but I’m about to find out. Asbestos has been found in Gardens on the site of a former Textile Mill in a West Yorkshire Village. Asbestos has been found in gardens on the site of a former textile mill in a West Yorkshire village.

Tests have shown that four out of 11 gardens on Forest Bank and Springfield Avenue in Gildersome, near Leeds, have the problem. Soil from the streets’ remaining 49 gardens will now be tested. The Environment Agency has given Leeds City Council £50,000 to carry out the work.. The Health Protection Agency said the risk to residents was low.The houses were built on the site of the former Springfield Mill in the 1970s and 1980s.‘Very worrying’

Max Rathmell, the council’s contaminated land manager, said: Until we have more information we can only have two theories.One is that it was part of the mill itself, because many textile mills did actually weave asbestos into various fabrics that they produced.The second sources would be that potentially it was introduced on to the site in topsoil and subsoil that was brought in to make the gardens. Residents on the two streets have been sent letters informing them of the find and the planned soil sampling work. Annette Armitage, who has lived in Forest Bank for 18 months, said the letter was very worrying. She said she was concerned as her young granddaughter often played in the garden.It doesn’t seem right really, just a letter, she said.You think somebody would come visit us to tell you, to come speak to you about it.Dr Mike Gent, from the Health Protection Agency, said: The risks appear at the moment to be low. Asbestos really affects people when you breathe it in and therefore if it’s in the soil then there’s less risk of people actually being exposed to this at all."Today I watched workmen opposite my home cutting insulating board and they were emerged in a cloud of dust. I later asked him .Why are you not wearing a mask. He said yes I should. I said you will pay for this later in life. He said I figure that for me, it’s to late, and by the time it affects me Ill be to old. That’s a shame.

19th October 2010

Will they Ever learn. Today I watched workmen cutting insulating board and was emersed in a cloud of dust. I later asked him .Why are you not wearing a mask. He said yes I should. . I said you will pay for this later in life. He said I figure that for me now it’s to late, by the time it affects me Ill be to old. That’s a shame.

25th October 2010

It has been a busy time as each week something new happens. Many emails to answer from people that need help with Mesothelioma advice as their loved one’s are suffering. Today I have had my 10year renewal for my Driving License and you have to put any medical problems. There is no Mesothelioma listed only Lung Cancer. When are we going to get recognised properly? I went to Tesco and had my photo taken, that’s gone up to £5.00 and we have had to send £20.00 with the application. Everything gets dearer doesn’t it, I wouldn’t mind but next August I’m 70 so I will have to have another new License so will have to pay this all over again. DOH!!!

Well I did have a great weekend at the Kent MCC AGM held at Lenham, we met all our old friends there and it was just wonderful and so friendly as we kissed hello and everyone was so pleased to see me and kept saying I looked so well.

We got up Saturday and went to the School Hall for the AGM which went off with no hic up’s so we were soon able to have a nice walk to the village with the dog, it is a pretty village. We went back to the Motorhome and got ready for the evenings Entertainment in the hall and had a brilliant time as the band was very good and played all the songs we knew so well so much so my throat was aching next day from all the singing. Ray let his hair down and he really danced the night away it was lovely to see him so happy. Ray has finished with running the MCC web site so that he can concentrate on my www.mesowarriors.com site where we can gather as much info in one place as we can.He runs other web sites so he has plenty to keep him busy. I have an Interview with Yours Magazine on Wednesday, I’m making some notes to make sure I cover the Information I wish to discuss.I will be very pleased that Mesothelioma and Asbestos is being made aware of, as so many people have not heard of my Cancer.

Chapter 5

26th October 2010

Latest News about the Lungs.

The human lungs can taste bitter substances in the air, according to a study that could lead to new types of drugs designed to make it easier for asthma sufferers to breathe.It is the first time that taste receptors, normally found on the tongue, have been discovered in the involuntary smooth muscle that controls the flow of air into the bronchi, the narrow airways of the lungs. Scientists said the taste receptors are identical to those designed to detect the presence of bitter compounds in the mouth but, unlike the taste buds on the tongue, the receptors in the lungs do not send nerve impulses to the brain. The discovery, published in the journal Nature Medicine, was so surprising that the researchers who made it initially thought they had made a mistake. They also discovered that, rather than narrow the tubes of the lungs to protect them against bitter, poisonous gases, stimulating the receptors actually widened the airways.

Nobody expected that taste receptors, considered to be for the tongue, would be found on the smooth muscle of the bronchi, said Professor Stephen Liggett of the University of Maryland Medical Centre in Baltimore. When we [stimulated] these cells, we figured that they would constrict the muscle, signalling a person to leave a toxic environment. Instead, they open the airways better than any known drug for treating asthma. Many poisons made by plants are bitter, so the scientists thought that the receptors must play a role in warning the lungs of a potentially toxic environment. I initially thought the bitter-tasting receptors in the lungs would prompt a ‘fight or flight’ response to a noxious inhalant, causing chest tightness and coughing so you leave a toxic environment, but that’s not what we found, Professor Liggett said. It turns out that the bitter compounds worked the opposite way. They opened the airway more profoundly than any known drug that we have for treatment of asthma or chronic obstructive pulmonary disease, he said.

New drugs to treat asthma, emphysema or chronic bronchitis are needed. This could replace or enhance what is now in use, and represents a completely new approach. There is no possibility that the lungs could be subconsciously used to taste air, Professor Liggett said. In the tongue, there is a neural pathway from the taste bud to the brain. There is no such pathway in the lungs. The receptors are on the airway smooth muscle, and signal to the interior of the cell to cause it to relax, he said. One explanation for their presence is that the taste receptors detect bacterial infections, which secrete bitter substances, thereby ensuring that the vital airways are kept open.

30th October 2010

Medically there isn’t much going on in my life, pains come and go in my Chest and my arms and hands ache, more now the colder weather is upon us.I have a scan again on the 10th November so the build up of fear is back and I keep saying that everything will be OK –But you never know and my mind must also be on the fact things might go wrong again.

I have had an Interview for Yours magazine so I have to wait and see how this is put together. Ray said I gabbled along but Kate seems to be thrilled by my story and is carrying out a lot of Research now on the subject of Asbestos which is great. Tuesday I’m going to a meeting of the Lung Cancer and Mesothelioma Support Group at The Wisdom Hospice Day Centre Rochester. The Guest Speakers are Sarah Lavender and Aileen McCartney so it will be the first time I have been to a

Hospice .I have very mixed thoughts and hope I learn something from this visit .I will report about on this when I get back Tuesday. On face book a man has said how he hasn’t taken up the offer of Chemo. I said Oh Peter you should have had the Chemo as they said the same to me but I had Disease stable for 2 scans then a little shrinkage and just waiting for another scan in November to see if there is more shrinkage. Then another person answered

Hi Peter – I was told the same re Chemo – told it was palliative but didn’t think I was at that stage so refused. Anyhow a friend – 73 year guy from Inverell has had about 3 lots of ordinary Chemo and is 3 years after diagnosis with meso stabilised .My heart cries out for these people, as I know Chemo is so daunting but they should try everything. You cant sit back and not do anything and I find they really aren’t explained everything very clearly.

Thank goodness we have Face Book where we can talk and give all the help that is needed, when you get into this situation. well as my heading says Whitstable is getting ready for Xmas so on Thursday December the 2nd Our Local Shops will be launching Christmas shopping with a Victorian theme which all sounds inviting.

Coastal Towns manager Chris West is arranging street entertainment’s and other attractions between 5pm and 7pm and is hoping as many businesses as possible will keep their doors open.

Harbour Street, High Street and Oxford Street will be included in the fun, with a trail for shoppers to follow. A window spotting competition, and a free prize draw to win £100 of vouchers to spend in Whitstable shops There will be children’s shows in St Mary’s hall, Oxford Street (the Umbrella Centre) and street music. There will be lots of Surprise attractions and in Oxford Street traders will also switch on Christmas lights on Saturday 4th December between 5 and 8pm with more music and entertainment. This is something to look forward to.But I have lots to do in the meantime. Outside the Cathedral And the Salvation Army played

As a footnote from me Ray. Just my thoughts here. Regarding Chemo. If your the patient I appreciate its your body your life. But there are other considerations here. The people you leave behind you. Spouse wife husband partner. They have got to bear the pain after you leave. IMHO I think it short sighted to refuse something you haven’t tried that may prolong or help your quality of life. During your current suffering spare a thought for those that love you. You only get one shot. As I said it’s my opinion, Ray the one being left behind.

22nd November 2010

My Diary has been quiet of late. After all the excitement of the Photo Shoot we have been busy, as at the same time my book is now ready for publication on e-books. I will soon have the links available when my publisher has completed the task. (Well-done Gerald you are a star) he has been proof reading while on holiday in France –a true friend. I will soon be able to say when the Yours Magazine comes out and believe me I will be buying lots of copies as friends in Australia, South Africa and USA and Canada don’t think the magazine is sold out there. I hope I might be able to get it on line, as it would be so much easier. On the home front, Ray broke his hearing aid last Tuesday so we had to go to the hospital as the Audiology Dept is there. He walked in and showed them and they said it was too old to repair so he had to make and appointment for a retest, Oh I thought what’s that in a month, swoon in 1 hour absolutely amazing. We went and had a breakfast at the restaurant ,which killed time and he soon went back in.

The Audiologist asked why he only had one aid. Ray said that when he arrived at the department to receive his second aid. The audiologist at that time said why are you here. To receive a second aid, for my other ear .He was told go away and dont be greedy as he was lucky to have one. Well she couldn’t believe that and said of You do need 2 aids so of course you can have 2. That will save us about £2000 as that’s what we paid twice for 2 private aids. She said that he had wax so go to the Doctors and sort that out first which he did and had his ears syringed on Friday with no problems and so another appointment for his hearing test has been made this Thursday. My Oncology Appointment is Friday so good old Ray had forgotten that and now we have the fun of going Thursday and Friday to the hospital OMG.

Very nervous about mine as I always am at this point. The result can go either way and it is nerve racking waiting for them. We have had a great weekend with Ray painting the Shower room out. I had it in Blue and