A Diary Of A Mesowarrior with #Mesothelioma #Asbestos- Struggled Through Traffic Jams To Get To The Marsden for Scan Results.

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I felt so bad with the coughing virus, as did Ray but we dragged ourselves through a devastating amount of traffic yesterday. There had been a problem on the M2 with the equipment they had used for overnight repairs. It had broken down and had to me removed so the Motorway was shut and everyone traveled to London on the M20

http://www.kentonline.co.uk/gravesend/news/roadworks-continue-on-major-route-118731/

. Then there was an accident on the M23, 

A 13 vehicle pile-up on the M23 caused lengthy delays for motorists on Wednesday morning.traffic

The collision happened at around 7am on the northbound carriageway between junction 9 ( Gatwick Airport ) and junction 8, leaving rush hour traffic stationary.

http://www.getsurrey.co.uk/news/surrey-news/m23-13-vehicle-crash-causes-12435229

All this with a Rail Strike, we were doomed from the beginning. I can’t believe, though, in the end, we were only 20 minutes late for our 10am appointment at the Marsden. I got out and Ray parked the car and walked Louis.

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Yes, I took the dog as they had forecasted snow and I thought if we got stuck, well he would be with us and not home alone. He sat there like a lord and seemed to know he was very privileged.

I went in and got my blood’s done and the Ray joined me for the Doctors appointment.

Still in remission.At 208 days after last Keytruda

We all laughed. but she said please take life easy and rest the bug hasn’t done any damage at all, your scan is very clear now.

She listened to my lungs and to my heart and is so happy with me.

I went up to Oak ward to meet my friend and his wife (I can’t mention names as they haven’t said anything on F/B yet. But a dear friend, I sat with them until they went in to get scan results and they were in there so long. Ray paced back and forth as I sat and talked to the last man standing on the 128 trial, he has had a great result of 80% and has many months still to go. 

When the Mesowarrior finally came out it was to tell me he was off the trial. It was a sad moment but immediately they are talking about what the next step is and where to find the next trial. I love such positive people.

I keep waiting for them to tell the warriors but they are in shock really they just wanted Keytruda to work. I said to Our Doc yesterday they really have to find out why I have such good news and they don’t he just held my arm and squeezed it and then the Mesowarior involved. It was a very emotional moment x

We traveled home with a lot lighter traffic thank goodness.

Then the cough has exhausted me and I have an early night again.

I feel better today and I have my medicine to keep taking. Everyone

I have to knuckle under and write a speech for the Lawyers convention in London in April. I really didn’t know how to tackle it and now I do. When you have such an opportunity to tell it as it is, you also want to use it to its best advantage, in putting the needs of Mesowarriors over so you can bring change. So I asked the Mesowarriors what questions they had. As always they have come up trumps and I can now write a clear speech.

This is for April so I will start working and getting this right.#

I was asked the other day what was my training to make me and expert on Asbestos ??

I have been involved with the product since 1957 and lived a life of seeing Rays mates die one by one the first was in 1961, he has nobody out od his entry alive today.  I have also lost a friend with Lung cancer and I now know that was through Asbestos and Ray lost his Aunt with Ovarian cancer and yes his uncle worked in the Dockyard. We have researched asbestos and what can happen in all those years as we worried about Ray. never thought it would be me that would succumb.

O’k I haven’t sat in a classroom and had training and exams I have a whole bunch of experts behind me on Linkedin and facebook that I call on to be factual, but surely if I have Mesothelioma then I have had life training so I hope no one is judging my right to talk about my life and what Asbestos has done to my family.

That also gives me the right to want to change the world of Asbestos for the future. I want Asbestos out of schools. I want Asbestos banned around the world in every country.

I will strive to help to do that and voice my opinions. I have freedom of speech on my side.

asbestos-comic

 

 

 

 

 

A Diary of A #Mesowarrior Living With #Mesothelioma #Asbestos — Oh no you didnt Pantomime Time at the Marlow Canterbury

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The Motorhome all loaded up we set off Saturday to the Park and Ride at Canterbury where we met all our friends in the Camping and Caravan Club as they arrived or already there to travel down to the City to see the Pantomime.UK’s most popular TV stars, Stephen Mulhern and Marlowe favourites, Ben Roddy and Lloyd Hollett.

The theatre is lovely as it is very new and we admired it as we sat and had a coffee.

When it was time to go in we really enjoyed the whole show. The 3 D show they put on was so great as things shot out at you.

A 3D scene – glasses are provided – works brilliantly and has young and old alike squealing with delight – once again reminding us that 3D continues to work as a visually stimulating treat in any environment when the experience of the audience and it’s ability to intrude in their space, is put as its very raison d’etre.

Stephen Mulhern (Billy) – returning to the theatre after a gap of a few years where previously he was in a supporting role – is now the lead man and it’s hard to do anything but warm to him. He’s charismatic and disarming and some of his illusions will have you mesmerised. Lisa Davina Phillip (Fairy Bow-Bells) is worthy of praise for her high-flying role too.

And, of course, it’s hard to fault Ben Roddy (Dolly the Cook) as the pantomime dame. He was, as ever, the undisputed star of the show and almost worth the price of admission alone. In truth, the whole cast did a good job.

No, in that there is something a little more forced about it this year, which makes it a less satisfying experience than before. It’s still a great show – and despite the gripe’s it never veers from being good value for money – but given the high bar they have set themselves, Dick Whittington just seems to fall a little short.

UK’s most popular TV stars, Stephen Mulhern and Marlowe favourites, Ben Roddy and Lloyd Hollett.

The show will also feature the incredible Vladimir Georgievsky (Britain’s Got Talent) and a host of West End stars including John Barr (Les Misérables), Lisa Davina Phillip (Matilda) and Ben Carruthers (Wicked).

Once again, the show will be written and directed by Paul Hendy and brought to you by Evolution, the same team behind last year’s Box Office smash hit, Snow White And The Seven Dwarfs.

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http://www.kentnews.co.uk/entertainment/review_dick_whittington_pantomime_at_the_marlowe_theatre_canterbury_1_4798486

When finished we got the P&R back to the park and walked Louis and fed him so we popped out with our friends for a meal in the Pub on site. That was just a laughing time as we all get on so well and I have really enjoyed meeting up again.

So it was back to bed and a great sleep as the site is so quiet all night.then you wake up to Press the Green button Have a nice day. he he !!!

Made me laugh this morning the man in the next M/H said “Hi Mavis how are you doing”. Bless him he knew me and I’m thinking “Whoo are you “” I hate that when that happens It has to be Motorhome Fun or Facts.

So we are home and my cold has got worse so just resting and will get an early night.

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos. The Book Is Launched What a lovely Christmas Belated Christmas Present

book-3

Yesterday was just an ordinary day as we woke up or was it. The room was so warm and I touched the radiators and they were hot.

I found Ray sleeping on the settee ?? He said he had been coughing and didn’t want to wake me. Everyone seems to have this cough and cold and so many have gone on to have an infection from it.

We had breakfast together and Ray did take Louis for his daily walk. He came back feeling better.

The postman came and a parcel was there on the floor. Ray has been saying a present, he has been waiting for to give to me hadn’t arrived over Christmas, and this was it.

He disappeared and came back with a present, as it was wrapped in Christmas paper.

I opened it and was shocked to find a book with our picture on.

He has been beavering away on the computer daily, but that is normal, so I haven’t taken any notice. Turns out he has been writing my story of the last two years of my trial. Using my blog as a guide he completed it finally sent it off for publishing and it was accepted.

2 Years on a Keytruda Drugs Trial. Fighting mesothelioma an Asbestos related Terminal cancer.

This means we have a trilogy as 3 books are published and have covered the 7 years of my journey.

I was so happy with it and I have to sit down and read it now Well done Ray and thank you for all the hard work as I know how hard it is to have a book published. Every paragragh and spelling must be right. No easy  task

http://rayandmave.weebly.com/maviss-book.html

We have a collection of books written and published now with all the money going to Mesothelioma UK, as I support them and all the work they do

http://rayandmave.weebly.com/more-info-our-books.htmlhttp://rayandmave.weebly.com/more-info-our-books.html

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http://www.mesothelioma.uk.com/

About Mesothelioma UK

Registered Charity No. 1126083


Mesothelioma UK is a national specialist resource centre, specifically for the asbestos-related cancer, mesothelioma. The charity is dedicated to providing specialist mesothelioma information, support and education, and to improving care and treatment for all UK mesothelioma patients and their carers.

The charity integrates into NHS front line services to ensure specialist mesothelioma nursing is available at the point of need. This is achieved through a growing network of specialist mesothelioma nurses, regionally based in NHS hospitals but funded by Mesothelioma UK.

Mesothelioma UK is based at the University Hospitals of Leicester NHS Trust Glenfield site.

The charity relies entirely on donations, legacies, fundraising and sponsorship to ensure all services provided free of charge across the UK.

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos -My 2 Month Scan now scanexity sets in

Image result for royal marsden christmas tree 2016

I had to go to the Royal Marsden yesterday for my 2 month scan. the tree was still up from Christmas and everywhere in every corner was a smaller tree.

The room where we wait for a canula to be fitted didn’t have many patients in so I though good we will get out early. WRONG!! When I went in I got stab in so many places. No plastic tubing would go in. The radiologists go it into the vein but the valve shut down each time and so no saline would go in so it wouldn’t be ok to put the dye in. The veins are so scarred after too much use. I will dread these visits if this carries on hands in hot water she finally got one in and I couldn’t move in case it came out again.

I was seen at 4.10pm but it took over an hour to finally get some blood out to test my kidney.

Ray panics when I’m in there to long and gets very het up so I came out to wait for the blood to be tested he was really loud with his complaints. He embarrasses me and I tried to hush him up but then the wife of a man who went in next started to agree with Ray.

She was saying that as a carer she never knew what was going on so she worried. She went on to say how hard it is to watch your loved one going through all the treatment so there was two careers nattering away helping and agreeing with one another. Its great when this happens as they are both supporting each other and it calmed Ray down.

We finally went down stairs to the waiting room and it was packed. Oh no! we would’nt be home until 10pm I said WRONG!! The radiologists came out and called my name. I felt all the eyes on me and heard mumbles as if people thought I was jumping the queue.

The Radiologists asked my name, date of birth and address and she said “Have you had a scan before” “Yes 7 years of them every 3 months now every 2.” “I thought I recognised you”

So it was hold your breath and as I move out of the machine with cheeks aching as I hold that last hard breath and then Breath again I let it go and take a deep breath. That was just the set up one.

Th radiologists comes back in and the dye goes in. You taste it first and then it travels down the throat through the stomach and then that hot feeling that makes you think you are going to wee yourself but of course you don’t –well You hope you havent

It’s funny you never feel it going down your legs into your feet?

That was it all down and home I can go. I go back on 11th for results so scanexity sets in now.

Ray was able to buy his cough Medicine and we travelled home in the dark getting in very ;ate 7.10pm.

Ray is coughing too much today and has stayed in on the settee most of the day.

All my decorations are down now don’t you miss them.

So my new target is to see them up next year.

 

 

 

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos- Happy New Year A Look Back On 2016 Thanks To Keytruda Im Still Here.

happy-new-year-fairy

I was going to do a 2016 look back and the Angela put a lovely message on face Book that does sum up a part of the year for me

Happy new year to my side kick mavis and ray. Thank you for always putting me back on the rails when I accidentally fall off lol. You two have made 2016 a very special year and especially to my family. First your OBE in london, caravan stay in Kent and being at dolciez graduation. And you becoming the first meso warrior in the world to be in remission. Keep smiling as i can say this because THE WHOLE WORLD SMILES BACK AT YOU. A lot of your work is done in private and many don’t realise the extent you go to, you’re not in it for selfish gain or recognition but to just simply be there. THANK YOU FOR BOTH BEING YOU and love u both. HAPPY NEW YEAR xxxxxxxxxx

This does sum up my Mesowarriors as I loved the caravan holiday we did and the London trip for the surprise BCAh was  a wonderful day in London and we met Larry Lamb

Picture

As lovely as that was my real memory of 2016 is the fact I was able to Announce with Dean Fennel at iMIG that I was in remission and have been for 198 days and counting.

This video that Ray made isn’t very good but it does show just how the news was received with such delight as I have paved the way for Immunotherapy. I have a scan again Wednesday and even if the result isnt what I want to her we have proved Keytruda by Merk is the way to go and so many drug companies are following now. I’m so proud to have played a part in the history of Mesothelioma.

Then in September we travelled to Amsterdam where I was the Key Speaker with Ray

I received a wonderful EAF award from Yvonne Waterman and Hans van der Wart

Then right at the New Year Amazing I have top billing in the Mesothelioma World as my Story was cascaded around the world. but it has been a great year and I celebrate my survival and pray so many will follow me in 2017

https://www.mesotheliomahelp.org/2016/12/2016-year-review-top-mesothelioma-stories-74100/

Today New Years Day I have just read on Linkedin  –Russell Cooley
President of operations Bio-Clean Environmental Industries Inc.

A MUST READ FOR ALL GAC’S ASBESTOS SUPERVISORS AND WORKERS !!
A very special thanks to Mavis Nye BCAh a very strong, courageous woman! While developing our awareness page for our website we reached out to Mavis for her story and wow! I have been in the abatement industry for a number of years and this is a very powerful message to all GAC’s, Asbestos supervisors and workers if you think you can’t affect the people you love most by not stripping down and wearing proper PPE think again. I encourage you to goto our website’s awareness page and read Mavis’ story it just might change how you do things!

https://www.bio-cleaninc.com/asbestos-awareness.html

I have dates going into my diary for this year to talk at some wonderful places and I will be blogging these as I complete them but I’m so pleased to be feeling really well and be able to carry on raising awareness through the year.

I just want to thank all the wonderful people who I know who work so hard to achieve so much.

If I listed them I would most likely leave somebody out and that isn’t fair as I really have so great friends in Asbestos, mesothelioma, NHS, Lawyers, and Mesothelioma UK. If you know me then its you Im saying a huge thankyou to as you have joined me on my Journey. What a Journey.

Even young men on the trains who insist I sit down and then carry my case. All my Facebook, Twitter and Linkedin friends so many people are in my life.

BUT there is one person that deserves a meddle and that is MR Thatcher- as Natalie Woodward of DAST nicknamed him as he is always walking behin=d the Iron Lady.

Ray has been so supportive even though he has had medical problems of his own heart-attack and back Op. He is doing all the housework now so that I can Type this Blog.

We Met 60years ago in June 1957 when I was 15 and he has been my brick every since. So a huge thankyou to my husband  and to you that is reading this now Thankyou for the interest you show in me.

Oh Yes and this dog who has been through so much with us for the last 10 years xxx

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I do remember all the Mesowarriors we have lost. So many wonderful friends that I cry for everytime they pass. My heart goes out to their loved ones and pray they had a good Christmas with their families around them. Also to the Mesowarriors that are fighting the disease so bravely. Im still one of you there, as no one knows how long I can kick its arse (as Debbie used to say.) But I said 2016 would be a brilliant year for New Draugs and I was so right so believe me when I say 2017 will be even better and so we are surviving and I pray you all get a chance at the new trials that are coming through. To all the newly diagnosed please find us on Facebook as there is a community there that understands all you are going through and we can guide you through. xxx