Living With Mesothelioma –My Diary –A very windy night

I couldnt sleep last night the wind really did get up and we felt like the yellow brick road.

There was a banging of next doors shed door. The house is empty but the door went bang bang bang !!! I had a coughing fit so I wasnt doing very well.

When we went out with Louis Ray went and shut the door if nothing else it will stop the rain from getting in for the new people.

I bet the snow must have got in and we had problems with that as Rays shed door had been open in the snow and his tools have gone all rusty.

We will have to sort them out now.

I did get out for a walk but this wind is to powerful for my lung and breathing is difficult so I got breathless and we were glad to get back home in the warm. Although I did manage to sweep the mess Mr Blackbird has been doing in my bark, to find food. I dont mind but i wish he would tidy up after himself.

Also where the snow was cleared we had grit mixed in so there was piles of stones left after the thaw. So now all swept up

I have had so many emails and messages saying they loved the video so we are well happy with our efforts.

So many business men are contacting me so I will have to see how I can help the Industry while they are so interested in the human side of  Asbestos and when Im told by  http://www.ibasecretariat.org/  There remains 200 million tons of identified resources of asbestos! A tidal wave of asbestos heading for developing  countries there is a lot of work to be done.

So onward s and upwards

http://www.youtube.com/watch?v=TIBnYMltl0U

A friend reminded me of Shawaddy Waddy today and I remembered I saw them at Chatham Central Hall and was in the front seat he came out and laid over all our laps I had his bottom I pinched it  he he he !!

http://mesoandme.wordpress.com/2013/01/31/thursday-32/  RAYS BLOG

Living With Mesothelioma–My Diary– IATP Video is made and published

So many New people are reading my blog now as I have made so many new friends this weekend. Welcome this is my day to day diary as I travel the path of Mesothelioma.

Not always about illness  as my illness takes second place at times as I have to much to do to raise awareness of this disease and the substance that caused it.

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I was shattered by last night and had to go to bed early where I slept from 9.30pm to 7pm this morning. Boy! did  i need that sleep.

So today  has been busy making a video. Ray took loads of batteries but they were old rechargeable’s and you all know Ray is prone to accidents!! Teeth and  hearing aids that go down the loo. just to mention 2 things. Just as i made my speech the batteries went flt grrr.

Anyway we have made a video of photos and I have recorded my speech. I still slipped up on a few words but I did on the night. the brain reads words that are not there.

All done and so ray loaded it up to You Tube while we went for a dog walk.

All done so I have sent the links to so many people, IATP, ADAO, Doctors, MP, MEP,s BLF and everyone is loving it.

My son is singing as we feel he played a part that evening and we needed music so why not his lovely voice. –he was free ha ha !!!

So sit back and relax and lets watch a show xx

http://www.youtube.com/watch?v=cI9rQrVO7cc&feature=youtu.be

ADAO have done a lovely presentation so I have copied that as well

Linda, at IATP’s event with Meso Warrior Mavis Nye

Posted on January 30, 2013

This weekend, I had the pleasure of attending the enormously successful Independent Asbestos Training Providers (IATP) fundraising event, “Casino Royale. Be Shaken, Not Stirred!” in Derby, UK.  As Sir Winston Churchill said, “A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.”  The IATP room was filled with optimists, innovators, and educators!

Over 100 attendees shared an exciting evening of dinner, disco, games, and, most importantly, meaningful connection.  The silent auction raised nearly £2,000 to support the Derbyshire Asbestos Support Team (DAST). The event photos are on Photobucket for easy sharing.

At the event, I had the opportunity to collaborate with innovative public health leaders and meet several online friends in person for the first time. One of these friends was Mesothelioma Warrior Mavis Nye, who I had the honor of presenting with the 2013 Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families.  Please click here to watch Mavis’ beautiful video about the IATP event! It was a true honor for ADAO to be recognized with the IATP 2013 Global Impact Award, which we all share with the volunteers, supporters, and donors who fuel our work and further our cause.

I encourage you to visit IATP’s stunning website, which was recently renovated. The website contains a wealth of information, including the most comprehensive list of asbestos training providers in the UK. I sincerely look forward to continuing to collaborate with IATP to partner for prevention.

IATP, you inspire us and give meaning to hope.  After meeting you, I am certain, that together, change is truly possible.

In unity,

Linda

Linda’s Social Networks

ADAO’s Social Networks

Rays Blog http://mesoandme.wordpress.com/2013/01/29/tuesday-36/

Rays blog http://mesoandme.wordpress.com/2013/01/30/wednesday-29/

MY SPEECH AT THE IATP AWARDS

My Speech we are still going to make a Video but this was the speech
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Thankyou speech

I must first thank IATP for honouring me today with this award.  It came as a big surprise to me, because I didn’t think I had done anything special to deserve it. I also thank Chris Ward who has so kindly sponsored this award.

              All I have done really is to first help myself to available knowledge to help me take control of my  future. And secondly pass that knowledge on to help as many people as I can. 
         That has taken the form of helping fellow suffers from Asbestos Exposure ,by putting this information in an easier place to find, Like Mesowarriors and contacting. 
         :-MPs .Doctors and even Prime Ministers of other countries, in order to bring awareness of the dangers that asbestos causes and the suffering  it creates.

                 So I say thank you IATP. For this award today.
           I would like to thank Christine(who I have spent so many hours on face book) and Mark for their tireless devotion to broadening that awareness and actively working hard to bring that about.

I must thank Ray my husband for his continued understanding love and support during my journey.

I thank all my mesowarrior friends for their support and on a daily basis an for an ear to bend when I need one and a shared laugh when times are tough. 

I thank Terry and Nicky who have put their lives on hold for the duration of this insidious disease.

        Oddly enough this disease has changed my life in unexpected ways. Before my diagnosis. Who would have believed that quiet shy old me, would have articles printed in Magazines.
         Make TV Interviews, Videos for the British Lung Foundation. Do interviews for local and National News papers. 
         I have given Speeches at the Novatel  Conference.
         I am a National Health Patient Representative holding group and one to one discussions with Doctors .Professors  , Surgeons. NHS Senior trust Managers..
          And now today Business executives in the Asbestos industry.

        I have written a book MesoWarriors My Story.
          This has seen sales all round the world.  
        And Now I have started My next Book .
       All income from  my first book goes to  Mesothelioma UK and this will continue  from  my second book.
       So I think I had a role to play in life and this one is mine.

      If I had a message to give today,to you, here representing British Asbestos Industry,it would be. 
         I would love to see asbestos banned all round the world. Close the mines. Stop the spread of Mesothelioma.
         Spare the miners a slow painful death. 
        A worldwide refusal to deal with asbestos. 
        Most urgently remove it from all our schools, all schools to preserve and shield our future generations from its dangers.

        I would ask you each to spread the word, to do your bit to continue the awareness and back the cancer research for mesothelioma. This takes time money and dedication. And people in High Places, But most of all money.

         We know there is no cure and probably never will be. But by banning it and removing it from the environment .That would be  tantamount to a cure in my book.

         I was diagnosed with mesothelioma 4 years ago and given 3 months. I was basically told go home put your house in order. Go and do what ever you wanted to do now.
        But I didnt give in. I will not give in without a fight. 
        I will continue to fight for as long as I can. I ask you all to do the same.
         This Asbestos legacy is a quietly marching death sentence. All hidden away taking,  as in my case over 40 years to surface. 
        So each of you here today could be in my shoes in the future.
        Fight it destroy it ,don’t give in.
        As my husband once said. Mesothelioma didn’t know what it had taken on when it started on me.

             So you the Industry please go out there and fight with me
                                         Thankyou.

Thank you IATP for the Wonderful Award for my work with Asbestos Awareness

Sunday we woke up to a very snowy scene

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and I didnt think My Son and Daughter in law would be there so I phoned and they were already on their way up the M1 saying how clear it was but they were being held up by a accident.

So I relaxed and had a lovely breakfast, a full English it was delicious.

I went to Linda Reisteins room to make a video for the ADAO conference that I cant got to in case my Lung collapsed on a plane as it is a long time and a long way, Im very disappointed by that.

We made a video and Linda had given me the Alan Reinstein Award. I made a little thank you speech but as it was more about the Meso Warriors and Mesothelioma I suddenly put the notes down and from nowhere I spoke from the heart. Linda said “That was beautiful” So it was soon made. We chatted away as if we were old friends but we are. We have Skyped so Linda has been in my home and I in hers what a funny world the cyber world is.

I went back to my room to where Ray was relaxed and Louis was asleep. He has been an angel even though he has been left alone in a hotel room for long hours. I think he has only just forgiven me.

We went up to reception as my son and DIL arrived and I introduced them to everyone.

Then in came Chris ward who had driven all the way from Portsmouth so we were pleased to see him. he grabbed me and took me to the room we were to be in and showed me all the lovely table decorations that Stephanie had made.

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We sat down and Chris who had sponsored my award and he was going to present it to me, so he asked questions about me so he could draw up his speech. He to has had cancer and come out the other side bless him.

With that over he escorted me back to my seat with the others, such a gentleman. I was smitten.

2 other Mesowarriors arrived so we had Rose Fletcher, Linda Thomas and Judith Turnball joined us as well as my DIL and Son so gradually we were all together having coffee’s and a natter until it was time for me to feed Louis and to get dressed.

I had a shower and put all my long dress on and make up and it got to 7.15 and ray hadn’t returned from walking Louis I was getting uptight. grrr

He finally walked in and explained he had been talking to my son –Men!!!

He rushed getting ready and we went up stairs where everyone was gathering and we walked on a red carpet.

Chris Ward was making sure I was Ok and I met his lovely wife Sylvia she was a delight all evening and we got on so well you couldn’t help it she is s sweet.

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We quietly did a photo of me with the Alan Reinstein Award as we didnt want to take anything away from IATP as Linds Conference is in March so we will cover it then.

I gave Linda a Dragonfly to remember us by

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The Mesowarriors got together for a photo, we are a mad lot xxxx

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We all sat down to very nice meal with lots of talking and laughing and enjoyed the evening.

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Well it came to the Awards soon enough with Christine and Mark from IATP opening the procedures

and after honouring some wonderful people it was my turn

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Chris said a lovely speech and then I had to deliver my thank you.

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Ray found the video camera wouldn’t work and he was devastated but we are putting together a slide show and a surprise that I wont spoil but when it is done we will put it on my blog.

I delivered and I could here it was very powerful but when I finished every one gave me a standing Ovation and I could see everyone was crying or grabbing tissues and then I looked at my family and they were all crying.

My Son said ” Mum Im so so proud of you” that was it I broke down after being so strong.

He said to Ray ” I can appreciate all the work that Mums doing and all the peoples here and their efforts, but at the end of day it wont help my Mum –nobody here can cure her”

That was a powerful message to me then and he is so right xx

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Linda and I showing off our awards

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We had a gaming table as this was the Casino Royal and 007 and then the Silent auction began.

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I dint know Ray had put in a bid for me of £200 for

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RAF Leeming, North Yorkshire
Your day at RAF Leeming will include:
Tour of the camp,
Go up into the Air Traffic Control Tower,
Visit the Technical Communications Unit –
A tour round all the Jets,
Chance to sit in a jet and have your photo taken,
Lunch in the Officer’s Mess.
This really is a prize that money can’t buy.

But ray didnt know my Son put in a bid at £300 for me a ha !! we were pipped at the post ahhh!!

Well we danced the night away and went to bed about 2am What a wonderful night

The next day we all woke up very tired and it showed xx

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We had to say Goodbye and came away with wonderful Memories.

The snow had melted all away and we saw nothing all the way home where we collapsed and we really havent woken up today, we are shattered.

Ray is making a slide show so I will put it on here soon xx

I missed Councillor Keith Kelly as I wanted to meet him as he has given me so much encouragement and is always Tweeting and Retweeting  me. but he was unable to attend because he had something more Important.

Keith I forgive you xxx

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Living with Mesothelioma– My Diary — My Big Weekend –Friday –the arrival

On Thursday we traveled to Derby for the IATP 07 Charity Dinner dance

We were so worried setting off as we had snow but ours was disappearing but we were frightened. As we got onto the M2 we realised that things were going to be OK as the motorways was very good and very light in traffic.

Under the Dartford tunnel and into Essex the fields did have light covering in them.

We made our way to the M1 and got to Northampton Services where we were going to camp for the night but we had got there in 2 hours and only had another 80 miles to go.

That was it decision made we traveled on.

Gradually the fields had more snow in them and the scenery was wonderful.

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Have you ever seen the M1 so clear.

We were soon at junction 28 where we had to get off and we rolled into the Hotels car park.

errr they hadn’t cleared any snow and the car park was filled  up with cars.

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We couldn’t believe a Hotel hadn’t cleared the snow away. We found a box with salt in so we knew we could use it if we got stuck.

We had to go down to the bottom of a slope where we found a spot.

The hotel said they were full so we said we will stay in our Motorhome. The hotel was happy for us to park up as we said we will have a evening meal, this is what you  can get away with in so many hotels and pubs.

We snuggled in with gas fire on and it was soon very warm.

We had a meal and then went to bed early but we still slept in to 9.30am friday.

Friday we got up and waited to book in at 2pm. We went for a walk with Louis and then went into the bar to have a very nice handmade soup for Lunch.

When it was time we did book in and went to our room.

It was all very nice so we were happy.

Linda Reinstein, Christine and Mark Winters arrived with loads of luggage but it was wonderful to meet up and hug and kiss, and sit and have a coffee together with rose Fletcher joining in.

It was lovely to meet everyone.

We all had a lie down and rested making arrangement’s to meet up for the dinner.

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In the dinning room was the Two women who run DAST and they were full of good info about what we can claim so they help so many people in Derby who have Mesothelioma.

While we were eating Dinner the snow fell and they couldn’t get their car out of the carpark so stayed at the hotel as well that night.

It came down so fast we though “Oh dear that’s it the people that had cancelled were right we will get trapped here. That my son wouldn’t get through I was so disappointed.

Everyone was tired and Linda needed to catch up with some sleep having flown in from the US so we all said goodnight and settled into our rooms.. Louis really appreciated the hotel room but then we had paid £15.00 per night for him.

Saturday the wet snow was very thick but the roads were once again cleared and My son got through from London so fast. They didnt meet snow until just after Leicstershire.

I worried unnecessarily.

I will write tomorrow about Saturday as it was full of so much love and awareness.

Rays blog  http://mesoandme.wordpress.com/2013/01/27/sunday-37/

Living With Mesothelioma –My Diary- The Sun shone and created a Thaw so we have lost some of our Snow

I have been practicing my speech today and getting the ironing done so I have a nice wardrobe of clothes ready to take away with us.

This is nearly here and Im beginning to get the butterflies.

I keep being told how bad the weather is but the roads are so clear and we are used to traveling in snow as we are campers  and traveled to Spain in snow over the Pyrenees , a very hardy crowd are Motorhomers.

I have seen it as another goal to achieve, to reach and here Iam still here and still fighting and  we are about to set out on another adventure. infact a big adventure.

So our clothes are ready I have the Tiger for the Auction to raise money so Im very happy now.

Today we had a thaw as the sun shone and the skies were blue. It was warmer and the snow melted. We went for a Louis walk and only the side roads were difficult to walk on as it was turning to slush.

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Early this morning this morning we could see the road again

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What a lovely morning and now all the snow has gone from the road it is clear.

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What a shame as we watched it melt little by little.

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On our walk we saw an Ariel covered in birds, they really must have thought it was a tree.

Out in the countryside around us away from  the coast  the ground rises towards Canterbury and towards Maidstone. so the snow is thicker. It will take sometime for it to thaw and then we will have problems with flooding I expect

A view from Chatham Hill

Found another picture that was a blast from the past as we used to live in Gillingham and I used to push a coach built pram in the 60’s with 2 babies in up and down this hill to Chatham everyday to my mothers.

I loved the view of how it was yesterday in the snow.

It isnt a main road like it was as the M2 has been built since we were there and every Sunday this used to be blocked with day trippers returning back to London after visiting the coast. Mainly Margate.

Oh well enough of going back lets have a good nights sleep so I can clean the house  and get ready for Off Thursday.

Rays blog  http://mesoandme.wordpress.com/2013/01/22/tuesday-35/

Living with Mesothelioma –My Diary– Today the snow has stopped

A day to stay in the warm but all the snow seems to be down now.

We could here the traffic running on the main road so knew they had salted all the roads in the night. They have down a great job down here and deserve a pat on the back. Only thing is they are our dustmen earning overtime so our rubbish didn’t get collected. That isnt a problem far better they keep the traffic running and help people travel safely.

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Mr Blackbird was sitting on the empty home next door and I realised I had some meat fat I could put out so I made up a plate of meat fat and se ate that so I threw him some dried fruit.

This seemed to last all day

I also sneaked out and brushed the snow off the path but Ray was watching so he made a hot drink for me.

Of for a dog walk and Im so pleased I got out. the snow is still soft and it was very easy to walk.

Tomorrow might be different as the frost bites for a couple of days.

Just one more day of snow as well and then a respite.

The death of a young lady in Deal saddens me. A young woman found dead in the snow in Deal after walking back from a night out was not wearing a coat, why dont the young wrap up snugly, what a wast of a life.

Frozen Rochester Cathedral and Castle. Picture by Snapaway78

Love this picture of Rochester Castle where we used to live

http://www.kentonline.co.uk/kentonline/home/2013/january/21/snow_pictures.aspx

So once again we are all snug in doors

Rays Blog   http://mesoandme.wordpress.com/2013/01/21/monday-28/