Living With Mesothelioma -My Diary- ADAO had a Great Weekend

Its been a funny weekend for some reason. I have felt rough after the flu injection. Coughing away that interfered with my sleep.

I feel better today but the weather has changed and it has been a dull day. Very depressing. Autumn is on its way which I love. The wonderful Golds and browns and crunchy leaves,but its the turning the clocks back and pulling the blinds at 5pm that I hete.

I have loved this summer, warm days and nights we have had some great times this year.

So now we have to plan next years.

We have been out for little trips, Saturday the Park and yesterday.

The House is sparkling though all steamed and cleaned. The Garden is straight for winter so Im now ready for this weekend. Speeches ready Trains booked and Louis is booked for a weekend in the Kennels with his lovely kennel maids. They take pity on him as he is so nervous.






The Pride of Canterbury was arriving in Calais around 8am when thick smoke started billowing through the decks.

The ferry had left Dover with 337 passengers and 119 crew and scores of French police and firefighters helped them onto the shore. I bet that was so frightening. I dont know if we would have seen that from Dover. Its ony20 miles to France from here.

I dont think I would have been calm as this camera man.

I saw this on Loose women Lynda is overwhelmed by all the messages xx

They said on Facebook :-

Please share this touching message sent from Lynda during the show for both us and you, the viewer.
Lynda, we love you too. xx

 So sad that she has to suffer like this after giving so much to us on TV
Our darling OK Lady
Cancer is such a hideous disease thats that kills so many. It breaks up lives that have not been lived in full. So many plans and so much to do and say. Please hug your loved ones close and tell them you love them every day. Life is to short and very fragile.
ADAO went to town raising Awareness in the USA
Linda Reinstein wrote I’ve just arrived back at theAsbestos Disease Awareness Organization (ADAO) office after a weekend of powerful and emotional Mesothelioma Awareness Day events. I am so full of gratitude to everyone who spoke up to make the voices of asbestos victims heard, and to the organizers who put so much effort into making these events successful. In addition, many of you who could not attend an event united with us by joining theMesothelioma Warrior Virtual Team or by Taking a Pie in the face.  A very special thank-you toJordan Zevon, ADAO National Spokesperson, who has been by my side this past weekend, performing at Jammin’ for Asbestos Awareness in Omaha, NE on Friday evening, and then flying to Alton, IL for the Miles for Meso run on Saturday morning.
Mesothelioma Awareness Events ALL
Well done everyone.

Living With Mesothelioma -My Diary –History-of-asbestos-in-chatham-dockyard

I couldn’t think why I had a sore throat yesterday and today it has dawned on me. I had the flu jab  didn’t I.

Oh dear poor me, sneezing and blowing today, not happy.

I have had a lot of emails inviting me to Conferences etc etc. I have been filling my diary up.

One that did please us was the Mesothelioma and Asbestos Related Lung Cancer Study Day as its in the Chatham Dockyard. We feel we have gone full circle as this is where ray worked and where we came in contact with asbestos.

Then I had a invite from the Local Lions friends  who will donate the profit from their November Fashion Show to Mesothelioma UK. The Fashion Show will be at the Seasalter Christian Centre on Wednesday, 26 November so I have accepted that invitation as well.

I did have the date for my next Scan  31st October. They come round so quickly ekkkk !!!!!!

There is a Solicitors meeting in Chatham Dockyard Tuesday 14th October between 2.00pm – 5.00pm at the Royal Engineers Museum, Field Marshals’ Room, Prince Arthur Road, Gillingham, ME4 4UG

We ought to pop along as Ray might find some old work mates.—–

We have just found reading the history so helpful.

This year marks the thirtieth anniversary of the closure of the Chatham dockyard and naval base. It is also of course the centenary of the outbreak of the First World War, in which Chatham dockyards played a significant role. On 22 September a ceremony at Chatham dockyard will remember the tragic events 100 years earlier when 1,459 men (most of them from Chatham Port Division) lost their lives when three Royal Navy cruisers were sunk. Those sailors from Chatham Port Division were certainly not the last whose association with the site would prove fatal. Although Chatham dockyards now acts as a popular tourist attraction, its longer legacy may regrettably be one that had not been anticipated; it remains one of the top employers responsible for asbestos related deaths, including mesothelioma, lung cancer and asbestosis.

In 1567 Queen Elizabeth I appointed Chatham (then known as “Jillingham waters”) one of her royal dockyards. In 1613 the dockyard site was moved downstream to the present location. Ever since Chatham dockyards had played a key part in British naval history, building over 400 ships and repairing and refitting thousands more. The best known is HMS Victory, Nelson’s flagship at Trafalgar. At one time Chatham dockyards employed over 10,000. In the 20th century the Royal Navy embraced the submarine as its new weapon of war. During World War I 12 submarines were built at Chatham dockyards. During World War II 16 vessels were launched and 1,360 refitted. In total, 57 submarines were built in Chatham dockyard. The last of these was HMS Ocelot, launched in 1962. (Visitors to the Chatham dockyard today can admire it there in its final resting place). Even after 1962 Chatham dockyards continued to perform many submarine refits, the last of which, HMS Churchill, left the dockyard in 1983.

Asbestos was widely used as insulation material in the UK’s shipbuilding industry from the end of the 19th century until the 1960s and beyond. Pipework, boilers, tanks, engine rooms and diesel generating rooms were all heavily lagged with asbestos. Even after asbestos ceased to be widely used as a new material, Chatham dockyard workers were still often exposed to high levels of asbestos fibres from stripping out old asbestos lagging on refits.

Because asbestos was commonplace on ships/submarines, a range of Chatham dockyard employees could have been exposed to asbestos whilst building or maintaining ships and submarines. This includes shipwrights, joiners, engine fitters, electrical fitters, caulkers, labourers, rope makers, supervisors, cleaners and asbestos laggers.

Dangers from exposure to high levels of asbestos (especially blue and brown) and its association with asbestosis and lung cancer had been established by the second world war. However it was not until the mid 1960s that the real dangers of asbestos became well known. In 1965 the Sunday Times published an article warning of the link between exposure to low levels of the more common place white asbestos and the fatal disease mesothelioma. This eventually caused responsible employers at Chatham dockyards and elsewhere to take proper precautions to protect its workers from asbestos. Sadly for too many workers there was too long a delay between this knowledge and action to prevent asbestos exposure. A recent client who worked as a submarine fitter at Chatham dockyards in the late 1960s/early 1970s says they were told they didn’t need to worry about the asbestos dust because it was “only white”. Sadly decades later many former Chatham dockyard workers like him have learned the hard way how badly they were misled. Hundreds of them have found that the supposedly harmless white asbestos fibres they inhaled at Chatham dockyards have led to serious and often fatal diseases, such as asbestosis, diffuse pleural thickening, lung cancer, and mesothelioma.

Nationwide there are nearly 5,000 asbestos-related deaths a years (about half of which are from mesothelioma). The Medway area, which includes Chatham dockyards, is in the UK’s top four for asbestos related deaths. A total of 104 people died from mesothelioma in Medway between 2006 and 2010.

Health and safety” is too often referred to in derogatory terms, but a more conscientious attitude to the health and safety risks of asbestos in the 1950,s, 60s and 70s would have prevented such diseases like mesothelioma, asbestosis and lung cancer. It is because of such careless attitudes that employers like the Ministry of Defence at Chatham dockyards are often liable to compensate for diseases caused by asbestos. Unfortunately of course no amount of compensation can make up for a fatal illness.  To true !!!!!!!!!!!

It was mesothelioma Awareness day and Facebook was filled with so much Awareness.

I hope people listen and take note that we need more help to control Asbestos and also more money invested in Trials to find the cure.

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Candles have been lit in so many places remembering Mesowarriors that have passed and those that are in pain tonight. So many it breaks our hearts.

Rays Blog ——-





Living With Mesothelioma -My Diary- Macmillan’s coffee Morning Raising Money by our local members in Faversham

I had a email yesterday to say our Cancer Network Meeting for end of life had been double booked. I waited all day to see if it would be rescheduled, it didnt happen. So I got up early this morning and still no answer. It got where it was to late to get there and I didnt want to go and have it cancelled as it would have been a wasted journey.

So I was able to go to Brogdale where Macmillan were having their Coffee morning to Raise money.

Get your Coffee Morning Kit

The Courtyard Restaurant sells everything for 2 hours (10am – 11.30am) and puts the money into the Fund box.

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Everything was ready for the fun.








Dragon flies where on the cup cakes with the butterfly (I couldnt see the difference )








Balloons were everywhere. outside and in.

We had 2 rounds of toast and coffee and Ray put a donation in the box.

We bought raffle tickets and then walked around the Farm to pass the time to the draw.

I went to the butchers and bought sausages in bulk for the freezer.











We walked around the railway track.
















a lot of signals for just a small railway.








I dont know where they keep the engine but the track runs through the orchards so people can see all the fruit trees.









We went back to the Restaurant and sat to wait for 11.30am by that time it was full and we had a good laugh with everyone as they then called the numbers out.

I won a pair of Gardening Gloves.

We were soon on our way home but we had enjoyed ourselves.

There was an email to say that the meeting was still on as they had another room. Oh well it was to late anyway.

I steam cleaned the rug in the Lounge, den and all the floors throughout.

Tomorrow I will do the hand held bits like tiles and cooker Then everything will be sanitised.

Must admit I had a power nap and then we took Louis for a good walk in his park.

So beef sausages and new potatoes for dinner and broccoli, Its been a fun day today.

Rays Blog


First off a trip to the station to get  tickets. What  should have been a simple thing turned out to be not so. I asked for 2 tickets. Have you heard of the early  pre-booked tickets he asked me. No I said. He went on to explain it. He said I will give you a train  time. You  must be on that train or tickets will be invalid. There is no refund or alternative train. Thats not a lot of good to me I said I  want to go  out on the friday and return on  Sunday. I can do that but I must give you  the train to be on. If you  prefer  I can offer a more simpler  booking you  go out on the Friday and come back on Sunday on any time train you choose. Well that sounds better . Ah!  but that’s more expensive he said. Ok I said sod the expense just give me to  returns for  the Friday and Sunday. Ok. Would you like me to book seats.  Right If I say yes to book me a seat he will then have to know what train I am on or he will give me a train. And we are back to square one.

Am I missing something here or is it me? Anyway its done now I must put the tickets in a safe place as it was £186  of  tickets.

Next Off to B & Q for a steamer. But they didn’t have it. Off to Sainsburys for milk she came out with a trolly load of other stuff. Next  its a trip to sturry  to the range . They have the steamer she wanted.

Ive done my BP again today 128/77. how she got over 200 4 times yesterday I think her m/c is faulty.

Dinner is done  what now Oh yes I hear the music wafting past my  ears its Emmerdale. Looks like that bitch  will get whats coming to her. WTS.



Living With Mesothelioma -My diary- Rays turn for check-up appointments, Flu Jab and Patient Access is now up and running

A calmer day today although after a good nights sleep we had to get up early as Ray was off to Dracula’s clinic for a blood test. Also he had to see the diabetic nurse.

Louis and I went with him and I went off walking Louis. I walked around the Harbour when the Greta was moored.

'Greta' The Historic Thames Sailing Barge (1892)

‘Greta’ took part in the evacuation from Dunkirk in 1940, she is the oldest Dunkirk Little Ship that is still working today and is a member of the Association of Dunkirk Little Ships.

I love her history and it was great looking at her early in the morning with all the summer visitors gone and we have our wonderful town back for the winter.

I came back and put Louis in the car as it was right outside the door and we could watch the car, but he slept.

I did panic as Rays name came up to see the Nurse and I couldn’t find him. You hear of people going missing dont you. He was hiding down by the room as they had told him to sit outside to wait before I got there. He came out and told me if I wanted to I could have my flu jab as she had given him his.

I was pleased as they only do it on a Saturday normally and in October. So I went in and she did mine. Job well done.

Ray has done really well with his diabeetus except for Blood pressure was very high. So he will send her readings everyday.

We then went for Ray to have a blood test and then we were free to go.

I wanted to go to the vets to buy Louis dog food. After parking in the car park (straight away the Traffic Warden came and was looking at all the cars for tickets. I waited as if you havent got your Disabled Badge just right on the Dashboard they can fine you) Phew she looked in the car and went on.

Louis started shaking like a bag of jelly. He smells the vets and panics. I carried him in telling him all I was doing was buying his dinner, silly dog.

Back to the car and traveled back home where a coffee was very welcomed.

Just a quiet day from then on.

My PICC line is more comfortable today. If you dont get everything laying down right it can get sore. I really dont like the claw that holds the line in. Its a new invention and the nurse said we are all moaning about it but they say it has to be used.

I have a better tube bandage on it which seems to hold it OK.

We just dropped off for a power nap when the door bell rang. Ray answered and came with a delivery from the Chemist ? We had not ordered anything. It was a pair of compression pop socks. The Royal  Marsden had sent my prescription  in to the GP and he had ordered them for me. Such good service.

Our Surgery has gone on line as well so Ray and I registered and we have our pin number now.

Its called Patient Access

It sounds good and I hope it works well.

Rays Blog



Living With Mesothelioma -My Diary- My 8th MK3475 infusion

I didn’t sleep at all last night. The fear of overlaying stopped me. What a waste of a lovely cosy bed.

Finally I could get up 4.30 am and got ready for the journey to the Royal Marsden. It was still dark as Ray walked Louis and then we started our drive But Dawn happened and we had a blazing sun pop up to say hello.

sun 1









The M20 was great, if a little busy as the sun rose up from its sleep but the M26 got busier and as we travelled on the M25 we had our usual half an hour of hold ups. Then the local traffic to sutton was horrendous. We arrived though at 8am and I booked in. I sat in the waiting room where there was another lady. I didn’t hear my name called just I knew that lady got up and she went in. I sat there and an hour had gone by. The nurses rushed in and said that the lady had gone in under my name and was even answering to Mavis as they put her in a bed. How weird.

We really laughed and joked  and the lady though didn’t talk to me from there on. So where I was going to be bed 4 they had to change all the paperwork to bed 3.

My PICC line preformed so well as bloods were soon taken and off to the Lab.

I was weighed and and then I waited for the Doctor to see me.

The Doc soon turned up and he was one of the trial Specialists. He said did I know how good my Scans were. I told him I did. He said that my shrinkage was excellent. I had already been told that there are two of us with a great volume of shrinkage. A young girl and myself. So now they have to start investigating why.

I asked the Doctor, were they pleased, Yes, he replied  but its not the volume of shrinkage thats important but the long term sustainable shrinkage that maters. He is pleased with my health and the condition of my body that I can go on. Only stopping if I get ill or I deteriorate in anyway.

I asked if its OK to start talking about it and he said. By all means so long as I did not generalise and only talk of my own experience as Mesothelioma patients are all different and their disease is made up of so many different Physiology. I said I wanted everyone on the trial and he said that is impossible as there are so many criterias to this trial but that they are going to keep going down the path of Immunotherapy as it seems to be giving the best results.

More trials are being worked on over the next 2 years but they have so much investigation to do, as they now need to know why it has worked on me. I already give extra blood each visit for them to look at my DNA etc etc to see why I got Mesothelioma but now they are working on Why Im responding so well. This really pleases me as I always wanted for them to look at my DNA and I would love them to look at Rays to see why he doesn’t have a Cancer gene and why he doesn’t have Mesothelioma.

Talking to Ray he would really like to volunteer so we will ask.

After 2 hours the result came in that my bloods were good and that they are making my drug up. I wanted to go and visit a Mesowarrior who has just been diagnosed and had come for a scan result on Thursday and had been kept in as the scan had shown it was in his stomach as well. All this in 3 months after living a normal life. I know how that shocks everyone, we are so healthy and then bang we cant breath and we are never the same again..

I took a bleeper and off Ray and I went from the East Wing to the West Wing. I found the ward and asked for our Warrior. They allowed me in to see him. Bless him he has an Infection and is on Oxygen.

Ray and I had a chat too his lovely son and we have swapped details and will keep in touch. I couldn’t stay long as I had to get back in my ward for my lunch.

I got back and Lunch was served. cauliflower cheese . A Doctor walked by and stopped and said “That smells divine” you dont hear that very often about hospital food never mind from a Doc.

2pm my drug arrived and I was all set up on the infusion machine. Half an hour and that was finished and I had a flush for 10 mins.

The nurse then gave me all we need to flush my PICC line at home now that Ray is trained to clean and flush it.

So I was set to go home. Everyone shouts out bye. They are such a lovely bunch of people.

The journey home was very good traffic was easy until we got to the A249 and they are going to be doing road works for a few weeks. The jam was horrendous I do hope they sort that out.

A249 road works for NINE WEEKS for new water pipes. So be warned all my friends that us this cut from the M20 to the get to the coast or Dover fro the Ferries or Tunnel.

Rays Blog





Living With Mesothelioma UK-My Diary- A Weekend Away with my Camping Club C&CC

We have had a brilliant time since Thursday where I have really chilled right out.

We arrived at Brogdale and there were just a few Motorhomes but they kept coming in and coming in until there were 44 filling up the whole of the Rally field.

That is so good for C&CC Motorhome section in Kent. As it wasnt a special rally just a normal weekend rally. Its amazing what is popular.

Ray and I walked around the shops that are there and bought some meat for dinner on Thursday.







We did some really lovely Orchard walks through the weekend and the plums were just finishing. Plenty of apples though but we were so good and dint go scrumping.









Through the summer you can ride a little train through all the Orchards but sadly it was to late for us to do this as its the end of September.

Friday saw us having a lovely Meal in the restaurant but it was far to big and we were far to full to eat a sweet.

They are going to do a cream tea on Macmillan’s Cake Day and put all the money into Macmillan’s fund next Thursday and I said I will go and join in the fun.

Saturday we went back and had our Apple Crumble much to the amusement of the waitress.

We bought our beer to put on the table for the evening. The lady in the shop said that we will be able to sample so many as all the campers were buying different ones.









There was a lot to choose from.We walked that off Louis was so pleased to have so many walks that he is now laying at my feet worn out.

Then the evening fun started  as we all sat together













Viv waiting for the stock of beers so she can play bar maid at the Wagoners Return.
























Pub games were played which was fun.









We were sitting chatting away and sampling the beer.



























It started to drizzle but that doesn’t stop our cooks as they were sausage BBQing.

So you can see what a mad lot we are but we do enjoy ourselves ans it was a job well done as they fed 88 people.

As long as you have a good solar panel these rallies are a great way to camp.

Sunday we woke up to more sun and so we were able to do one last walk with Louis.after Coffee morning we went to the butchers to buy meat to take home with us.This is my local butcher as we do visit here. We were only 5 miles from home.

The Butcher of Bogdale

Its good to have a real butcher away from a supermarket as the meat is of a higher standard.

So that was it we have come home and have to get back to traveling tomorrow to the Marsden.

Life has to go on in a more serious vein, but I have had a lovely rest and although very tired Im now ready to go on in battle.

I must admit I do think sometimes that if the Docs had been right and I had passed in three months I would have missed such a lovely life as we have really got our retirement just right.

I came home to another Mesowarrior passing after only 5 months of diagnosis  I do really feel each passing as I just want it to stop. so many candles are being lit. Too Many

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Goodnight to a very brave  Mesowarriors RIP


Living With Mesothelioma -My Diary – Good Luck to Scotland x We say goodbye to another Mesowarrior.

Rays Blog

I have got to say Good Luck to Scotland as what ever the result Scotland will never be the same again. This has torn you in halves with either Yes or No . Hope Friday is a day when you can rebuild again the Scotland we Britains Love xxx

My Blog

Yesterday was a weird day with this heavy cloud we have. They promised sunshine in the afternoon but it never came as they now say that when the low cloud lifted higher cloud came and shrouded us. It makes you feel like you have a thick head, so very weird. I know Ray felt the same and I kept saying are you Ok.

There is a lot to do this week with all the garden so tidy now we have had a great rest. Just the normal housework and washing clothes.

We are off to Brogdale (Based in the heart of Kent, Brogdale is a living gene bank of over 4,000 varieties of apples, pears, plums, cherries, cobnuts, currants and quinces and the Biggest & Best collection of fruit trees in the world!)

We will be in the Motor Home as its just around the corner in faversham. Im looking forward to some country walking to see how I fair but I will take a walking stick just in case I get tired as thats when I start tripping.

Will take photos of coarse. It will soon be turning colder as winter approaches so making the most of this unusual warm weather. They said on TV that we cant call it an Indian Summer until the 21st and that it is wrong to think and Indian Summer is to do with India, its not its to do with the USA and the Indians there. You live and learn.

Sure enough Wikki knows —-

The US National Weather Service defines this as weather conditions that are sunny and clear with temperatures above 21 °C (70 °F), following a sharp frost (the “Squaw Winter”). It is normally associated with late-September to mid-November.

In the desert southwestern United States, where frost is rare, the term is sometimes used to refer to a brief period of hot dry weather which occurs after the hottest months and before the onset of winter cool and/or rain, typically in October or November. It may also be used to refer to any unseasonably warm weather during the first few weeks of the rainy season, before the approach of spring. In the Pacific Northwest, it refers to warm, dry weather after the first late-summer rains. In some regions of the southwestern United States, “Indian summer” is used colloquially to describe very different weather phenomena, including the hottest times of the year, typically in late July or August.

A late-19th century Boston lexicographer named Albert Matthews made an exhaustive search of early American literature in an attempt to discover who coined the expression. The first reference he found dated from 1778, but from the context it was clearly already in widespread use.

A famous use of the phrase in American literature is the title of Van Wyck Brooks New England: Indian Summer (1940), chosen to suggest inconsistency, infertility, and depleted capabilities, a period of seemingly robust strength that is only an imitation of an earlier season of actual strength.

My blog yesterday has bought mixed reactions as I highlighted the video and the history of Asbestos.

You can read in the comments boxes at the side but I highlight something I dont understand —– Mave this is a great bit of work thank you. Did you know that here in Canada we produced over 40% of this stuff some not far from where I live here in Newfoundland many more will die before anyone does anything. What will it take? I Know they will keep hiding this because there is money to be made and killing people does not matter to big or small business we cause to much trouble they just close down and reopen under a different name WHEN IS IT GOING TO STOP i WILL DO ALL i CAN FOR THIS CAUSE.

I thought Canada was understanding as they had to close the Mine down and the Prime Minister didnt get the loan to reopen. I did know they had a stock pile and were sending that to India.

I will have to have a snoop around and investigate.

Also Derrick wrote a comment — An excellent video Mavis I worked around the spray on insulation I did not know they were using it in the 1800’s I thought it was discovered in 1925 god the evilness of the coverup never fails to bring tears to my eyes. “Mans quest for riches robs him of his humanity”

Im so grateful for fed back as it spurs me on in my fight for Asbestos Awareness.

I have also been asked to talk to some nurses at the Mesothelioma UK Conference on the friday night as they havent met someone on 5th line treatment. Of coarse I said yes as it something close to my heart to shoe the NHS we do live with Mesothelioma so stop calling it arer and get on and fund more Innovative research PLEASE!!!

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I have had this message over night Dear Mavis. Please would you share my sorrow, my beloved husband Mike Hopkin lost his battle with Meso on Monday, he was such the life and sole of the party and only saw the good in everybody,and if they were bad it was because life had delt them a hard hand.It’s true the good die young. Many thanks Shirley ————so I light a Mesowarrior candle for Mike our brave Mesowarrior