Photo: It has been a very busy day here at the office! Who else is happy it is Friday?!

A 4.30 awakening with the Sea Gulls over head and squawking again at dawn -getting cross. ha ha !!

Today the weather has been so nice and with all the house cleaned and tidy I feel so good. and ready for another weekend away in the Motorhome. We cant go away for a full holiday as my trips to The Marsden  does interfere but I really dont care.        I did some ironing and after lunch it was a trip out to give Lois a run. He chased his ball around and then he suddenly ran back to the car in the carpark. Strange behaviour we thought -No he had found a ball and claimed it as his own. All split but that didn’t matter he had a trophy and he wasnt going to give it up. he sat on it all the way home carried it from the car and dumped it in the front garden.

I did go down and wash the car over again as we are having problems with the polish that was used by the garage. There is a film over the car and when it dries it is very smeary. I did do better than ray and we now have the problem solved I think.

A lovely couple that live on the Park spoke to me about the Seagulls and had thought it funny how Ray swore about the fact they bombarded the car with deposits. I didnt know he did that yesterday.

It was funny to hear they read my blog and they know so much about me and what Im doing. Isnt that funny I write away to an unseen audiance and think nothing of it but Im amazed when some one close to me in my everyday life says they read it.

It is my diary and Im really just recording all I do each day for future reference.

A little late doing the blog as I have been on Facebook talking about fried mars bar.



  1. Chill the chocolate bar by keeping it in the fridge, but don’t freeze it.
  2. 2
    Mix the flours and bicarbonate of soda (baking soda) together.
  3. 3
    Add milk (traditional) or beer (which gives a lighter result) until you get a batter with the consistency of thin cream.
  4. 4
    Heat the oil until a small piece of bread will brown in a few seconds, but don’t allow to smoke.
  5. 5
    Remove wrapper from chilled chocolate bar.
  6. 6
    Coat completely in batter.
  7. 7
    Carefully lower into hot oil and fry until golden brown.
  8. 8
    Serve, with ice cream or french fries, if you’re so inclined.

    I really cant imagine eating one though as it must be very gooey.                                                                                                                                                                                                                                                                                                                                                                               Deep Fried Mars Bars. Photo by FanaChef

Ray has scarring on his Lungs and I was sent by a friend a great write up

Parenchymal scarring is scarring of the tissue in the lungs. It can be caused by a number of things and may be referred to with additional terms to provide information about its location or nature; apical parenchymal scarring, for example, is scarring at the tip of the lung. This change to the lung tissue can be identified on medical imaging studies and while a patient is in surgery. A doctor can determine if it is a cause for concern and make recommendations about the next steps to take in treatment and management of the issue.

Surgeries, infections, chronic lung disease, exposure to harmful particulates, and cancers are all potential causes of parenchymal scarring. The scarring occurs as a result of irritation or damage to the tissues, with the tissue scarring over during the healing process. Scars can be fibrous and tough, and extensive scarring may interfere with a patient’s lung function, making it harder to breathe or reducing availability of oxygen to the patient. In other cases, the parenchymal scarring may be benign, not causing any problems for the patient.

On X-rays, changes to the lung tissue can be visible. If scarring is identified, a doctor may request more medical imaging to see how extensive it is and learn more about it. In some cases, a request for biopsy will be made. In a biopsy, a sample of the scar tissue will be taken from the lung and analyzed by a pathologist to learn more about its nature and origins. This can provide important information a doctor will use in developing a treatment plan to manage the scarring.

If the parenchymal scarring is not benign, treatment can include steps to reduce further damage, such as changing a medication regimen for lung disease to bring inflammation down. In some cases, part of the lung may be removed, as for example if a patient haslung cancer. Lung transplants may be needed in some cases, if it is clear that the damage to the lungs is too extensive to repair. While awaiting transplant, patients may be provided with various treatments to keep them stable and comfortable.

There are some steps people can take to prevent parenchymal scarring or reduce its severity. Prompt treatment for problems involving the lungs is advised, as is ongoing monitoring of people with lung disease. Catching complications or poor responses to medications quickly will allow doctors to provide patients with treatments, and these can limit the chances of permanent damage to the lungs. Even with prompt intervention and management, however, some patients may develop scarring anyway.



I have had so much energy today. Already for two days I have washed curtains and changed them so the house already looked different. Today I changed the bed clothes and and vacuumed and polished. This is great but I do sit down and catch my breath every so often.

We took Louis out to the Rugby field at Swalecliffe so that Ray could go to B&Q as the rain is coming back in the porch through the doorstep. So he bought some filler. The rain did pour down last night though and we had a very wet front door mat in the porch so hopefully we will cure the problem.

The throat is easing off now that Im eating food like a baby.

I was given a good recipe book by Alistair’s wife at the Marsden yesterday and the meals are easy to swallow so I will be using that.

You can get a copy and any other booklet’s on diet and cancer, healthy eating, the build up diet etc etc at Macmillan Cancer support 0808 0808 00 00

Mine is Recipes for all people affected by cancer.

The Video of the Oncology Forum has been published it is a sort of Segment of the day that is very interesting but I was allowed the last word as the patent – a very proud moment I get the last word in as I am the patient -Thankyou Oncology Forum for letting me speak and you listened xx

There has been another lovely thing happen and that was the surprise of Jan Eagerton being remembered and a special way. I thought this was a lovey tribute to our Jan and she would approve so much.

MesotheliomaHelp is pleased to announce the “Jan Egerton and Don Smitley Mesothelioma Scholarship.” We are proud to offer ten (10) scholarships in the names of these two mesothelioma warriors.

Jan Egerton battled mesothelioma for over 10 years and during that time she dedicated her life to raising awareness of the dangers of asbestos and to championing the researchers to continue to focus on finding a cure and new treatments for the cancer. Jan’s husband said, “I know Jan would be delighted to have this accolade, and I would be honoured for you to use Jan’s name. This is a legacy of which she would be proud.” Jan was one of last year’s judges.

Don Smitley spent his days enjoying time with his family, his dog, Charley, and playing in his bluegrass band, The Dunbar Boys. No one ever heard Don complain or wonder, “Why me?” while he fought mesothelioma. But everyone that knew him would say that faith and a positive attitude carried him through each day. Don’s daughter, Jennifer Gelsick, chronicled her family’s journey during mesothelioma, and now discusses life after losing a loved one to mesothelioma through her blog. “We are so honored to have Dad’s name on the scholarship. It’s such a perfect way to remember and honor him,” said Jennifer. Jennifer will be one of the essay judges this year.

mesothelioma scholarship

The scholarship is available to students in colleges and universities throughout the United States. Our goal is to help the educational efforts of students while raising awareness of mesothelioma, provide information about itsprognosis and the dangers of asbestos. Mesothelioma is a disease that affects men and women – both young and old.

See the list of past essay winners here and iPad-mini winners.


The ten scholarship amounts are as follows, and will be distributed after the winners have been notified on November 24th, 2014.

  • $5,000 – First Prize
  • $2,500 – Second Prize
  • $1,250 – Third Prize
  • $500 – Fourth Prize
  • $250 – Fifth Prize
  • $100 – Honorable Mention (there are 5 Honorable Mention awards)

Lou also did a good report of her Speech in Australia

Monday 14 July at Parliament House, Canberra to the politicians.

Senator Lisa Singh spoke, as did Peter Tighe then it was my turn.   Russell Broadbent MP also did the closing speech after mine.
(My speech below)
I’d like to begin by thanking the Parliamentary Group on Asbestos Related Diseases for organising this event and for raising awareness about this very important issue.   I’d also like to thank the Asbestos Safety and Eradication Agency for supporting this event and helping PGARD raise awareness about the dangers of asbestos.  I lost my father to pleural mesothelioma in 1985 – he was only 54 years old.   Like many people in our community, I was diagnosed with peritoneal mesothelioma, an asbestos-caused cancer in 2003. I never knew my fate would follow my father’s footsteps.  As I began to heal from surgeries and chemotherapy, mesothelioma spread to the pleura of my lungs in 2009.  I only know to fight – and fight hard – I am currently having further chemotherapy treatment.   Asbestos has had a hugely destructive impact on my family and me.
My story is only one of thousands of stories out there where families have suffered and have been torn apart by this insidious substance.  My pain and knowledge, has spurred me on to advocate for the sufferers of asbestos related diseases and their families and for greater awareness of the dangers of asbestos and prevent people from being exposed in the future.   I attended the initial Asbestos Summit in Sydney in November 2012 where Bill Shorten announced that an independent Agency would be established to target this issue.

In my mind this was the ultimate and very important step in asbestos safety and eradication for Australia and also leading the way worldwide.     I was so overjoyed that this had finally come into fruition through the work of support groups, unions and government.   I felt at peace, that if I died tomorrow I would be happy in the knowledge that this is in place.  As my mesothelioma battle continues, so do my advocacy efforts.  In April 2014, I was fortunate to attend the Asbestos Disease Awareness Organisation (ADAO) 10th International Asbestos Awareness Conference in Washington where I was honoured to receive an award for advocacy and support to other sufferers and their families. As a guest speaker, I shared my story.   Asbestos Safety and Eradication Council Chairman Geoff Fary was invited to also speak at the ADAO conference in 2013. He spoke about Asbestos Management Review, the new agency and the way forward, and people listened.  It was clear to me, that America and other countries see us as leaders in our country and abroad in campaigns to ban asbestos.  We have come a long way since the full ban on Asbestos in 2003, and most importantly, with the establishment of the independent Agency.  Mesothelioma is a death sentence for the person diagnosed and their family.  Asbestos tumours are likened to barb wire and eventually join up into like a mass of hard concrete in the linings and suffocate the organs making breathing painful.  It literally takes your breath away.

Australians need this Agency to ensure there is a national approach to identifying asbestos and developing ways to remove it from our community.  I have a great fear that without the Agency, the issue of eradicating asbestos will be put on the backburner and will fizzle out.  Please hear my voice. I would not wish this painful and aggressive cancer on anyone.  Those nearly invisible fibres have devastated my family, my friends, my community, and me.   My father paid a high price for his work – his life. Now I fight this painful, but preventable cancer.  Do we want asbestos to continue to plague us and the next generation?   For me, for us, please keep the Asbestos Safety and Eradication Agency viable – prevention is the only cure.   I thank you again for inviting me here today.

Standing on the steps of to the entrance of Parliament House prior to the PGARDS luncheon.

At PGARDS luncheon with team members of ADFA (Asbestos Diseases Foundation of Australia), Kat Burge South Australia and Senator Lisa Singh.

We Mesowarriors do voice our stories and our opinions on Asbestos and Mesothelioma in so many ways and yet we were once just ordinary people doing ordinary living until we were diagnosed with this disease.

So proud of those that can talk and get our case across for all the Mesowarriors.

ray and linda











Rays blog






It was a very early ride up to Marsden today but the roads were so clear as the Children are off school so the local traffic wasn’t heavy.

The new Sat/nav worked well although the volume on new Tom Toms are not very loud.

Stopped at Clacket’s  Lane and then got through to Sutton well.

They had let 4 nurses have holiday so with only 3 on it was very short staffed for the volume of patients that had appointments.

I finally got in and had my bloods taken leaving Ray asleep in the waiting area. He had got up at 5am so I let him be.

The Sister tried to find my veins but as usual it was a hard job and settled for the usual one in the crick of my arm.

Then blood pressure taken  134/75 so still on the low side but doing Ok.

When weighed I had lost nearly a stone but I had meant to as the weight was going up and up.

The Nurse has said that my scan is nest week but dont panic if the result shows a flaring as they are seeing that when the drug works and turns the Immune system on the scan shows a flareup. Explaining to me how when you cut yourself the wound goes red all around it as the ant bodies set to work. This is what happens to the tumour’

I then sat waiting for the doctor but I had to have my blood retaken as the Biochemistry test had clotted (but all of us had the same problem) Was the machine playing up ?? Because the cannula was used last time I had to have it taken out of a vein. tries of sticking needles in me I finally gave a sample.

With that done I waited to see the Trial Doctor. He finally called me in and carried out his usually examination. I reported my throat and how I had to take paracetamol to eat meat or potatoes. larger pieces of food.

He has ordered that when I have my scan next wednesday it will incorporate my throat.  I now wonder if the tumour in thyroid is having a flare up.Only the results will sort it all out.

So that was it I had to wait for the drug to be made so we went off for a coffee and Ray had a cake while I was good and had a yogurt.

Back up in the waiting area we sat talking to other patients. You meet up with the same ones each week so it is all light hearted chatter that goes on.

I was called in to get the drug as it was ready.

This was put through the cannula it it only takes 30mins with two flushes I was soon out.

We drove home and was so lucky as all the roads hd accidents on them. A caravan had turned over at Bromley but we came off at M26 so we were very lucky as the traffic built up.

We were glad to get home and have dinner. I did iron the curtains I had washed and we hung them up. Another job done

Rays Blog



Posted by: rayandmave | July 27, 2014

Living With Mesothelioma- My Diary- A weekend at Rye

We have had a great weekend again at Rye for the C&CC 50th birthday

I love Rye

We started off with panic as Ray found we had a puncture and had to call the AA. All packed up and waiting was funny.

Ray has told the story.

We did finally get away but the Sat?Nav played up all the way. I do know how to get there but we were testing it. So we dicided to buy a new one on the way home as I cant go back to reading maps now. I love a satnav


The O2 were being put together to hold the BBQ and food tables for the Saturday night birthday party But first we spent Friday being a tourist around Rye


Rye city wall


I made it up a steep slope and that was it -Shattered


Looking down into gardens behind the shops


There are so many little shops to interest


Ray climbed up on a wall to take this and there was a huge drop to below


A wonderful sunset Friday night


The party began and everybody had enough food at the BBQ well done to the cooks x


Lots of chattering and socialising went on as the wine flowed.


We finished the evening with a good dog walk as all the dogs joined in.































It has been a splendid time and just as we were all packed up to come home the heavens opened and the rain poured down.

We didnt really say bye just waving from the Motor Home but it had been a great rally.

On the health side I have as I have said before had a painful throat. It has now got to having to take 2 Praceomol just to eat a dinner of potatoes and meat. I ate the BBQ only because I had taken tablets.

I will ask tomorrow if this is a side effect. I really dont mind eating Mince and mash and all foods soft as that isnt painful. Its as if my throat doesnt wish to stretch or is it a tumour ??? So many questions tomorrow at the Marsden

















Such a lovely day again as the sun rose over the horizon. I was awake again so very early but my throat was so much better and I was swallowing better with just a little pain.

Tidied up and then nodded off in the chair while watching the news.

We had an early lunch and then set off for Margate to visit a very special Mesowarrior. We called in and bought a bouquet of flowers.They had 2 ornamental cabbages in the bunch.

Winter Bouquet - Carole Gomez/Photodisc/Getty Images

Like this one but all green.

We went wrong when we got into Margate and we panicked we were at the wrong road. We have been before and thats what made it so silly. Going back and forth we couldn’t find the house. I told Ray to go to the sea front and see if we could track back from there as last time we had been for a lovely walk to the seafront. Going through the roads we came to the right one and found the house. A very senior moment there.

It was great to see our friends and lots of cuddles and kisses. I didnt want to tire her so we didnt stay long as 2 hours of laughing and talking was tiring  but we promise to go again soon it had been so good to see her and to know she is fighting Mr nasty but Chemo has done so much damage as it did me. I pray she will recover from the chemo bit by bit and get stronger before the winter to be able to fight infection.

I was given beetroot pulled fresh from the garden and I have come home and cooked them. It makes you feel so healthy eating fresh veg like this.

We called in to the Supermarket and shopped for food to take in the Motorhome as we are off to Rye for the C&CC 50th birthday party so it is lots of fun in the rugby club this week.

An email was here from the Royal Marsden changing my scan date. I sweated as I checked the dates as I had sorted my diary out for July/Aug but it is all good so everything is calm again.

My Local MP Julian Brazier has replied to my email regarding choice and free social care at the end of life.

It is a issue in which he has a great interest as he fought to save our Canterbury Pilgrims Hospice which was under threat of closure.

He gave me a link to our local Commissioning Group.

Dying matters

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Dying is an inevitability we will all face.

It is a topic most of us shy away from discussing, but talking about it can make all the difference to the person reaching the end of their life and those around them.

Next week (12-18 May) is Dying Matters Awareness Week and NHS Canterbury and Coastal Clinical Commissioning Group (CCG) is encouraging people to talk about their preferences for their end of life care.

Dr Maliha Karamat, GP at Saddleton Road Surgery, Whitstable and CCG clinical lead for End of Life Care, said: “Death is a subject that can be very difficult to broach, however, it’s important to let your family, friends and GP know what you’d like for the end of your life.

“Talking about the practical and emotional aspects of dying is important in ensuring a person’s wishes are carried out.”

The NHS provides support for people at the end of their life in a variety of ways, whether it’s from a palliative care team in the community, pain management at home, in a hospital or hospice.

NHS Canterbury and Coastal CCG has recently developed an End of Life Strategy. This includes information for GPs and practice staff and sets out commitments around:
• Supporting patients to ensure their end of life wishes are followed
• That people coming to the end of their life are able to die in the place of their choice, pain free and with dignity
• That support is provided to families and carers of those nearing the end of their life
• And that support is provided to families and carers once their loved one has passed away.

Dr Karamat added: “As a CCG we are committed to improving the quality, care and services for all our patients. Our End of Life Strategy is an important part of ensuring people nearing the end of their lives are made to feel comfortable talking about plans for when they die.

“How people die remains in the memory of those who live on so it is essential for the patient as well as their loved ones to be open about this discussion.”

Dying Matters is a national coalition which aims to change public knowledge, attitudes and behaviors towards dying, death and bereavement. It has produced a leaflet called You Only Die Once which lists five things everyone should do.

1. Live well and die well. Make your wishes known today.
2. Write your will. It is the only way you can be sure your wishes are carried out correctly – and it avoids leaving your family to make difficult legal decisions.
3. Record your funeral wishes. Have the funeral you want.
4. Plan your care and support before you get ill. Talk to your family, healthcare workers and GP. After a sudden stroke you may not be able to talk.
5. Tell your loved ones your wishes. Talking about dying often isn’t easy but you should share your plans and, if you have written them down, let your family know where they are kept.

For more information on Dying Matters see or call 0800 021 4466.

If anyone has any comments on the draft NHS Canterbury and Coastal CCG End of Life Strategy they are encouraged to email the CCG:

The Latest for the Saatchi Bill


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Daniel Poulter, The Parliamentary Under-Secretary of State for Health, has replied to a written answer from Jim Fitzpatrick MP (Poplar and Limehouse, Labour) on the Medical Innovation Bill.

Feedback on the Bill to date has already led to excellent suggestions – such as an open database of innovation, to be developed and hosted by Oxford University.

We look forward to the Government amendments.

Read the question and answer below and here in Hansard.

Jim Fitzpatrick (Poplar and Limehouse, Labour): To ask the Secretary of State for Health with reference to the written statement of 22 November 2014, Official Report, column 65WS, on the Medical Innovation (No. 2) Bill, when he plans to bring forward legislative proposals to remove barriers to medical innovation, along the lines set out in that statement.

Daniel Poulter (The Parliamentary Under-Secretary of State for Health; Central Suffolk and North Ipswich, Conservative)
My noble Friend Lord Saatchi has reintroduced the Medical Innovation Bill in the current parliamentary session as a private peer’s Bill, which had its second reading on 27 June. The Government is supportive of the principles of this Bill, but believes it is necessary to amend the Bill to ensure it does not:

put patients at risk;

deter good and responsible innovation;

place an undue bureaucratic burden on the national health service; or

expose doctors to a risk of additional liabilities.

The Bill will proceed through Parliament in the usual way.

Hansard source (Citation: HC Deb, 21 July 2014, c999W)

Another really lovely day after the clearing of low cloud by dinnertime.

I was up so early as my throat was so painful and I took painkillers to relieve it. I stayed up and worked on the computer sorting problems out. I love sharing my knowledge I have gathered together the last 5 years.

I sorted my diary out as i have planned so many trips amongst my appointments.

Off to the park in Faversham after lunch which was packed with mothers and their children enjoying the sunshine. It seemed also packed with dogs running after balls or just racing around. Louis stayed on the lead anyway as the park is surrounded by roads and that always seems so dangerous to have no control of your dogs.

We walked around and then went back to the farm shop to buy fresh vegetables and fruit. The plums are in but not my favorite victorias.

I made do with strawberries and cherries.

Dinner was lovely fresh veg and mince as we have had so many salads over they last week.


I have to visit this new shop for treats for Louis

WHITSTABLE is known for being a top place for food lovers – and a new bakery is hoping for success, by catering for their four-legged friends instead.

Daisy’s Dog Deli, based in the Harbour Village, is a bakery selling roast chicken dinner muffins, liver cake, carob brownies, beefy postmen and even birthday cakes, all for dogs.

Run by Lisa Gosling, the business, which is named after her Wheaten terrier Daisy, opened in its new premises on Saturday. The trained chef told the Times she was inspired to launch the business after Daisy had problems with her diet.

CROWD-PULLER:  Whitstable Oyster Festival's Mud Tug by Moonlight  Picture by Brian Baker

THE Oyster Festival returns to Whitstable next week for another bumper packed nine days of fun, food and frolics.

The annual event opens on Saturday July 26 with the food fair in the harbour from 10am.

The traditional Landing of the Oysters will take place at Long Beach at 2.15pm before the parade takes to the streets from 3pm.

In the small Kentish town of Whitstable, a large part of life revolves around oysters. So it is only to be expected that – every once in a while – the inhabitants should get together to celebrate their livelihood.

That celebration takes the shape of the annual Whitstable Oyster Festival – and you don’t have to be mad about oysters to enjoy it!

Actually, whether you’re a history buff or just love a celebration, the Whitstable Oyster Festival is a good place to be.

From the traditional Landing of the Catch to the Blessing of the Waters, from an oyster eating competition to a mud tug and a fireworks spectacular, there’s plenty to do and see for adults and children alike.

And then, of course, there are the oysters, for which Whitstable has been famous since Roman times. Back then, they were not the delicacy they are today, but subsistence food that even the poorest could afford.

Oysters © hamper |

Throughout Anglo-Saxon times and the Middle Ages, oysters were widely fished, providing income and food for whole communities.

So it seemed only natural to invoke some higher protection to ensure commercial success, especially as many sailors refused to learn to swim, preferring to trust exclusively in the security of their boats.

With the spread of Christianity a saint – St James of Compostela – was assigned the task to watch over oysters and those who fished for them, and communities whose lives depended on oysters began to celebrate his feast day on July 25th.

St James’ festival traditionally began with a blessing of the sea, the sailors and their boats, in hope that their lives and livelihood survived in safe abundance.

And this year is no exception.

The 2013 Whitstable Oyster Festival begins on Saturday, July 27th, with thetraditional oyster blessing. The oysters are carried in procession to the Lord Mayor of Canterbury, while a grand parade through the streets of Whitstable follows the blessing ceremony.

Afterwards, the festival gets underway with plenty of educational and fun activities.

If you think you can suck oysters down faster than anyone else, then the Oyster eating competition might be right for you. Try eating half dozen oysters and washing them down with a half pint of Whitstable Brewery Pilsner. Do this faster than anyone else and you’re a winner.

Even though oysters are nowadays regarded as a delicacy and therefore not to be had cheaply, visiting the Whistable Oyster Festival will not leave a hole in your pocket.

Oyster Feast © Seemann |

Art galore is part of the festivities with local artists, classes and displays. Much of the entertainment is free and the flea markets and craft sales cost you only what you wish to spend.

Crafts and food always go together and the Whitstable Oyster Festival is no exception. Feed your taste for delightful and unusual foods while you feed your soul at the festival.

There is even a masseuse if you’ve had too much activity.

Another tradition is Grotter Day. The grotter is a hollow mound made of mud and decorated with seashells. Often children would make them and then receive a penny or two for the best one. This free activity starts in the early evening so you have all day to collect the shells.

Seashells and Starfish © Janpietruszka |

And for those who plan to visit the festival, the following fun facts about Whitstable might come in handy:

  • Tipping the Velvet, a book and television drama by Sarah Waters, used Whitstable as one of the settings
  • The 2006 movie Venus, with actor Peter O’Toole used the Old Neptune Pub in Whitstable for filming
  • W. Somerset Maugham lived in Whitstable with his uncle from the age of 10. The setting of Blackstable, for his book Cakes and Ale bears a great deal of resemblance to Whitstable. (Not really a big reach when you consider the name.)
  • Peter Cushing, star of the classic vampire, monster, and mummy movies, lived in Whitstable after his retirement

The Whitstable Oyster Festival offers something for everyone. Most of all there is great entertainment and music to accompany delicious local food and drink. Rays Blog

We have had a great weekend away in Uckfield so I think I will load photos and they will tell the story.

My voice is back completely but the small price to pay is a very painful throat  The amazing thing is I have been able to walk around so steady and my legs are strong again.

Appetite is Ok have managed to eat healthy though and thats the main thing.









The very hot weather bought  wonderful storms

The night sky was filled with strikes as we watched from our Heki

This was at the Isle Of Wight not very far from where we were when it comes to storms as this  came over us and we were watching the show.


There have been wonderful clouds overhead


Blue skies in the warmth and this was the view from our M/Home


Sun sets and sun rises were all so pretty


Sun set






Lots of relaxation time where you just sit and look atnature

Lots of relaxation time where you just sit and look at nature


















Mick got out his guitar and played Country and Western.











Did we care if it started raining-no of coarse not it just meant the umbrellas came out.

















The sun soon came out again, our patients was rewarded.





Saturday night was another storm and we had a huge lightening strike with a huge bang as a fireball exploded just over the wooded area. Fire engines with sirens blasting and a house had been hit as was reported in the newspaper Sunday.×378.jpg

It really has been an eventful weekend and I have enjoyed every minute.

We came home today and I have done the washing that can be packed back in the Motorhome for the next trip.

Rays Blog he has enjoyed it as much as I have had bless him.


Had a very tiring day yesterday. The heat was so stifling as the air was so humid. The heat after all last weeks rain caused the humidity to rise.

I cant believe after moaning about the rain last week Im moaning about the heat this week.

One thing we are noticing is the fact I have my voice back. I have often talked about the change in my voice. Very croaky as the tumour grows back and clears as the tumour shrinks. That is happing so it must be the tumour has shrunk off the nerves to my voice box.

My Scan in August will tell me if I’m right.

Still the pains in my shoulder and all down the right left lung from under my arms. A weight loss though so the fluid is going away. Im eating very healthy now. Low fat and more fruit as strawberries and cherries are plentiful at the moment and plums are ripe so they are the fruits I love, Still no bananas though. I love them but they make my potassium rise.


We did have a good day yesterday and I did a really good clean through. Love changing shower curtain and toilet mats to blue from green as it changes the whole appearance.

Moped all the floors right through. So pleased we dont have carpets as it is so much fresher after a good mop.

The only thing is Ray and Louis always walk back in, why do they always choose that moment.

Windows were flung wide open to let the sun and breeze in and you feel so good.

Then I flag. We did go to B&Qs but walked Louis to the rugby field first. He had a great game off lead but he was getting to warm and was panting away so we cooled him down and ray went shopping. We couldnt wait in the car as it was like an oven.

We are going camping as the weather is going to be so lovely and our group are at Uckfield in a lovely field on the outskirts of town. It will be good to meet up with everybody again.

They do forecast bad thunderstorms but that means the M/Home will be washed down well. I will put all the foam over it and let the rain wash it all off ha ha !!

The fight for Asbestos in Schools took a new lead yesterday

The APPG Asbestos Seminar took place yesterday at TUC London

IATP was there delivering a solution to be delivered to schools via JUAC & Mr Beaumont their lead rep on this matter.

he need for action by the All-Party Parliamentary Group on Occupational Health and Safety has this month been released.

Lucion’s Tim Hearn comments on the update:

“First published in February 2012 the updated report has some concerning statistics:

  • Britain has the highest mesothelioma incidence in the world.
  • Mesothelioma deaths among teachers is averaging 15 deaths per year since 1980 (267 in total). These figure do not included cleaners, cooks, premises officers secretaries and other school workers.
  • Between 200 and 300 people will die each year of mesothelioma  because of their asbestos exposure as a child at school in the 1960′s and 1970′s.  This equates to 4,000 to 6,000 former pupils.
  • A nationwide survey of asbestos in schools showed that only 33% of school safety representatives who responded knew where to find the asbestos register and only 20% ensured that visiting contractors were shown the the register before they commenced work.

The report can be found here:–2-1-.pdf

The report also highlights an alarming lack of training held by those with a duty to manage the problem in schools including building managers,

head teachers and school governors “particularly those in academies and free schools”.

Whilst the report calls for the phased eradication of all asbestos in schools the HSE

stance remains to ensure that asbestos is regularly inspected and managed in situ.

A problem with this is that tests have shown that unsealed concealed asbestos can be disturbed by normal school activity and condition inspections are often carried out without an accompanying air test.

Other countries are taking action with regard to asbestos safety in schools,

The Australian Government passed the “2013 Asbestos Safety and Eradication Bill” which will prioritise the total removal of asbestos in public buildings, whilst this year the Netherlands will be introducing an environmental safety level 3,000 times lower than the current UK level.

Until the UK government follows suite it is essential that asbestos management procedures within schools are effective and robust.

For those concerned with the issues of the updated report, a recent White Paper released by Lucion this month can found here detailing duty holders responsibilities.”

Julie Winn said on Facebook —Read my letter to British Safety Council on asbestos in schools.

More than one in 10 non-local authority controlled schools faced enforcement action for failing to meet adequate

asbestos management standards during a recent HSE inspection initiative.

A further 15% of the 153 independent, voluntary aided and foundation schools, free schools and academies inspected across the country

between April 2013 and January 2014 received written advice from HSE on managing asbestos containing materials (ACMs).

Of the 20 improvement notices served on the schools, eight were for failing to have a written asbestos management plan; eight

for a failure to undertake an adequate survey of asbestos; two due to a failure to implement a suitable system to manage the risks

from asbestos; and two for inadequate training and information for employees.

But according to HSE statisticians, dutyholders’ awareness of their legal responsibilities was 9% higher than during the last inspection programme run in 2010/11. The vast majority – some 95% – of schools had a full or broad understanding

of the requirements of the Control of Asbestos Regulations 2012.

By contrast, in 2010/11 164 schools outside local authority control were inspected and 41 improvement notices were served on 28 schools. “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, ” said Geoff Cox, the head of HSE’s public services sector. “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” According to HSE, the inspection initiative revealed a number of common themes in those cases where schools were falling

short of the requirements. In four key messages HSE recommends schools should:

Ensure their records are up to date: 85% of the schools HSE visited had carried out an asbestos management survey. In some schools, however, the records were not up to date or did not include all the buildings.

Where refurbishment work had been undertaken in some of the schools that had recently become academies, the asbestos register did not always reflect current information about presence, location and condition of ACMs

Have an asbestos management plan: the regulations require dutyholders to have a written plan of the actions and measures necessary to manage the risks from ACMs.  77% of the schools visited had an asbestos management plan, a 14% improvement on 2010/11

Ensure in-house employees undertaking building and maintenance work have received adequate asbestos training: among

the schools where in-house staff were engaged in such work, 63% have training in place, a 14% improvement on 2010/11

Have a system to inform anyone who may disturb ACMs of the presence of asbestos: just over half of the schools inspected

(54%) had a comprehensive system in place to ensure that anyone who may disturb ACMs would be provided with information

on any asbestos that may be present. This reflected only a slight increase on the findings for 2010/11 (50%).

Christine Blower, the general secretary of the National Union of Teachers, said the findings demonstrated the need to bring back proactive inspections of schools.

“This report demonstrates that significant numbers of schools are still not safely managing their asbestos. The fact that 13% of these schools were served

with a formal improvement notice is extremely worrying, particularly if that picture was reflected more widely across all schools.

“Of even greater concern is the finding that nearly half (46%) of the schools visited did not have a comprehensive system in place to ensure

that anyone who may disturb asbestos – this could be staff or contractors – is told of its presence. “It is clear that some schools are struggling to meet their legal requirements to manage asbestos safely. Academies, free schools and

other independent schools, which cannot rely upon local authority support, are particularly vulnerable. “Against this background the NUT calls for the re-introduction of pro-active HSE inspections of schools, which were abandoned in 2011.

Without these inspections there is no safety net to pick up instances of poor management that expose staff and pupils to risk. There is also no wider intelligence about the success or otherwise of the Government’s policy on the management of asbestos in schools. “The longer the issue remains unaddressed, the more people will be exposed. What is needed is a long-term strategy aimed at eradicating the problem once and for all.” So you can see things are in the headlines to make our schools safer for young lungs and out future generation.

I hope it all succeeds —————————————–


Rays Blog



A lovely day today so we have summer around again.  I woke up after sleeping a very deep sleep. I was exhausted wasn’t I.

I have been checking out and my having low blood pressure is due to my drug.

Things you can do to manage hypotension:

  • If you have low blood pressure, changes in position must be performed slowly. Rest for a few minutes in between lying, sitting and standing.
  • Avoid hot environments, such as a shower or a bath, which may cause your blood pressure to be reduced.
  • Avoid alcohol and certain drugs that may cause low blood pressure. Discuss these causes of low blood pressure with your healthcare provider.
  • Drink lots of fluid. Drink 2 to 3 liters of fluid every 24 hours, unless you were told to restrict your fluid intake. This will decrease your chances of being dehydrated, and developing low blood pressure.

So Im more relaxed and Ray is monitoring it for me on his machine. It is higher slightly tonight so I will keep drinking fluids. This means more water for the diuretics, this might be hard ha ha !!!

We went shopping after lunch to Canterbury and it was lovely walking around in the sunshine.

The postman came and there was a lovely Dragon Fly with the story to go with it.

dragon fly brooch





















Gradually more and more Mesowarriors said they had received one.

I knew from the postcode who it was as it came from Brighton. It was Jan Weston. I think that was a lovely thing to do Bless her. We will all have to wear them to our meet up in August.

I also shared Michael Crills From Libby, Montana lovely but sad poem. He is very clever to capture just how it is.

london calling montana











London calling Montana

Today I’m Told
By Mike Crill

Today I’m told I have asbestosis in both my lungs
and that I am being sent home to die because there is no cure and asbestosis
is my guarantee to death…

Today I am scared to what has become of me.
I no longer can run nor walk very far.
Life’s getting harder every day…

Today I’m saddened by those who love me as they try to hide
the truth and their pain, knowing I shall soon die and that
they will witness my every moment, until I die…

Today I feel so lost because my life depends on a tube that
pumps oxygen into my lungs to keep me alive. Knowing beyond
the end of that hose lies the end of my life…

Today I am mad because I can’t feed myself and someone has to
bathe me, dress me and change my soiled pants. It’s times like
these I wish I were dead…

Today I am in the hospital. I’ve become too much for my loved ones
to endure and I am crying inside because I know when I leave here
I’ll be in Heaven…

Today is the worst, no feelings in my hands and feet, both are
turning blue and non-stop morphine is all that’s left to ease
my pain…

Today I tried my hardest for my last breath, for my last
touch of a hand in mine, as the last words I heard and the last
words I spoke, “I love you…”

Today … I’m in Heaven. No pain for ever more. It’s really
beautiful here. And I shall await for you all to join me in
eternal life and love…God bless and Amen

He also shared


AS I anticipated spending X mas
With my family and loved ones
As I drove into my parents drive way
Such joy I would soon share all day

Opening the door to a maze on the floor
And into the front room I saw more and more
All amoungst the house, a site to see
Clear plastic hoses run every which way.

This hose run every which way
This hose went left,right and back
All tangled up and a mess on the floor
Way in the corner, a big box, I see.

All these hoses begin their for me to see
Each one of these hoses, I follow to their end
Hooked to the nostrils, of my dearest best friends
I stood in the hallway and saw what I seen.

From down in my heart I felt myself scream
Two frail people, gasping for air
Each step they take doesn’t seem fair
They both aren’t very old,60 plus years

So hard to walk, so painful to hear
Dead in my tracks, mind in a daze
What I am seeing, brings back the old days
Days of my Mom, running faster than me

Chasing me for wrong with a switch from a tree
A woman who raised six children with love
Never to stop loving till her last day
Always their for me when trouble I do

Teaching me right from wrong that I do
I stood for a moment, seemed like many a years
Life flashing before me, holding back my tears
And beside her, her love of 46 years

A hose to my Dad and I lost all my tears
This x mas shall never forget
Never before have I felt so sick
As we all stood, looking at each other

Me their Son, they my father and mother
What has happened, how could this be
What I felt as my parents looked at me
Oh such pain I saw in both their eyes

A look I felt as if they were saying good bye
Miles of tubes, constantly feeding them air
All I could think is how life is not fair
Confined to a hose, as far as the end.

So slow each step, their knees they can’t bend
It’s so hard to write down a hurt that’s inside
And finish a poam my tears I can’t hide
I turn away fast and take a deep breath

Cry in my silence yet fooling no one
They didn’t say much, not much could they say
As we looked at eachother,oh what a day
I walked towards them to give them a hug

I went to my mom first, as I always done
I reached my arms around her
Wanting to just hold her so tight
In my arms as we held each other

So many times as a son and a mother
Over whelmed with emotions going faster than light
All that in life I love as I’m holding Mom tight
I love you dear Mother, I love you so much

A special love shared, when ever we touch
A thought of this moment that I’m sharing with Mom
A day will come and I will be alone
So I held a little tighter, heart against mine

Fighting back thoughts of Mom, not in my arms
I give Mom a kiss, say I love you again
A extra hug and our arms became unhooked
I look at my Dad, to give him a hug

He seemed so distant as we became one
With my arms around Dad, his around me
Over his shoulder, it hurts what I see
Here is the man, once strong and so free

Holding me loosely over my shoulder to see
To feel what I did, Dad in my arms
My arms holding on, I don’t want to let go
I Love you Dad, I say close to his ear

Holding him tight,we could feel our own fears
As I let Dad go from the love in my arms
I felt so sad for having let go
I had to be excused,into the bathroom,I locked the door

I sank to the floor, I could not hold back no more
I cried so hard, seeking peace from within
God give me strength so I can begin
To get to my feet and hold back my tears

Go face my loved ones, not showing my fear
I did rather well yet I know they could tell
They felt my pain as I shared in their hell
Helpless I am, what’s done it’s too late

Time is a ticking, time is their fate
Saying good bye to what I last saw
Changes my life to stand and not fall
All that matters and all that I see

I Love you Dad and Mom, best friends we’ll forever be…
God Bless Dad and Mom from your loving son…Mike

Thank you for allowing me to share this special time in my life with you. Both parents are gone as are many others from living and breathing the deadly air in the town left to die…Libby Mt.

Rays Blog

Its been a long long day at the Royal Marsden today. We got up at 4.45am and showered and Ray walked Louis so we could set off at 6.15.

The traffic was great until we got to the M25 and then it was weird. We all came to halt and then next minute we are speeding away.

I thought it was the Variable speed doing it but at the hospital Alistair (the other Warrior on the trial) explained that it is an automatic thing that happens. There are sensors in the road and when 3 lorries travel side by side it sets the sensors off and the Lower speeds kick in.

They does ring true to us as lorries do travel alongside each other. Im sure they play games to make their journeys less boring.

We arrived 8.30am I was told I had been booked into the day hospital as there was a spare bed.

I was with 3 other lovely women who were on Phase 1 trials but they had to stay over night as it was the first time the drugs had been used. The Marsden has to monitor them just incase there are reactions. I was lucky and escaped that as The MK375 has been used on other Cancers so they know the reactions already on a body. Im just teaching them what its like on Mesothelioma.

Im so pleased I dont, as they have been delivered there by family and then they go home and then they have to come back the next day to take them home. All that extra travelling.!!!

My bloods were taken and tested. They came back Ok so they made the drugs up.

The lady with Liver Cancer had to wait while her drug was flown in ??? She was still waiting when I came home.

My young (very young Doctor) visited me and we were all smile as we are getting to know one another. I asked if I could have water tablets and really hit the fluid buildup in my body but mainly my legs.

Of coarse he agreed. So we will see how that goes.

I asked why the trial wasn’t Recruiting more patients and he told me how if everything goes well, for me and the other 3 patients on the Trial, then they will recruit more. So they are waiting for my scan on Aug 11th. I said it will be showing shrinkage as I really do believe in it, he just smiled and squeezed my foot —ahhh bless.

Then the nurse took all my blood pressure etc etc and my  blood pressure was very low. 105 over 54. She made me drink Orange juice as I don’t like the taste of water.












I had lunch while Ray went and sorted my prescription and he got himself something to eat. I had a hospital meal as I had a bed so I chose haddock spinach and cheese sauce but I wasnt that hungry.

We were then getting so tired and I was laying on the bed which made it worse.

At last the drug arrived and I was all set. It only takes 35 mins to go in and than a flush and I was soon on my way home again. All done for 2 weeks.

We travelled home with all the rush hour traffic.

Home to our house and garden.









We are very tired so an early night is on the cards and I will let the drug work its magic.

Rays Blog

Listening to international anti-asbestos advocate Lou Williams at the Parliamentary Group on Asbestos Related Disease.











Lou Williams at the Australian Parliamentary Group on Asbestos Related Disease.She looks so well but was suffering with her latest Chemo. Well done Lou and look forward to your report of the time you have spent in Canberra.


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