A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — receiving a honorary Doctor of the University degrees a graduation ceremony in Rochester Cathedral—what an honour!!!

 

 

 

 

 

 

 

I have been silent as Ray and I have both had the Virus again. So much coughing and a very sore eye that I couldnt open my eyes as we travelled to the Marsden on Monday.

I felt so unsociable as the Nurses were kind and the Doctor gave me a prescription of drops so I gradually opened my eyes.

I have rested all week and each day we waited for the news from Kent Uni that I have had to keep so secret. I went last week to finalise all the details of the day and my cape is all ordered.

So at last yesterday It was twittered

UniKentCongregations
Campaigners Mavis @grandmamavis and Ray Nye, who promote awareness of the asbestos-related cancer #mesothelioma, will receive their honorary Doctor of the

University degrees a graduation ceremony @RochesterCathed on 9 July, starting at 10.30 #KentGrads

 

 

 

 

 

 

 

 

 

So I feel the cork is out of the bottle.

I have had so many messages and comments from such lovely friends who all seem so happy for us. It is an honour -a huge honour but I dont do all this work for honours I just want Asbestos Awareness and a cure for Mesothelioma so if Im playing a small part alongside so many activists then Iam fulfilling my part in a larger world.

The University are excited as they havent done a couple before and they were worried how we will go up on the stage, Ray and I solved that as we will go together and give a speech together

In fact they have listed us as —  Mavis and Ray Nye are campaigners who use social media and advocacy to promote awareness of the asbestos-related cancer Mesothelioma. They are the first married couple to receive honorary degrees together from the University of Kent. They will receive their honorary Doctor of the University degrees at a ceremony at Rochester Cathedral on 9 July, starting at 10.30.

https://www.kent.ac.uk/news/kentlife/22111/singer-ellie-goulding-among-those-to-receive-honorary-degrees-from-kent

Im so pleased another first ha ha !!!!

And to be with such great people and many friends

Well Im back done to earth and getting ready to travel to Scotland to Edinburgh next Tuesday to the ROSPA Conference we can toast the news in some real whiskey

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Scan Results not good but not bad either !!

 

This week is calmer after all the filming we did last week.

 

 

 

 

 

 

 

 

 

 

 

 

 

Not just the ITV news but Ray and I made a film for training purposes all to do with ships. That will take a long time to be finished so I will share when they have been published.

 

 

 

 

 

 

 

 

Then Saturday and Sunday I spent all day on twitter and live stream as it was ADAO’s Conference which I will Blog another day as today has been an important day for us.

I  went to the Royal Marsden to get my results of my scan form last week.

We got there early and instead of going in the usual room they put me in the day ward and gave me a bed.

This isnt unusual if there isn’t a chair because they are full up so that was ok even if my mind was running overtime. we do get worked up with scanexity its just something you can help. You know your whole life can change in one scan result.

My bloods were taken and then the doctor came round to see me.

The scan result is my Mesothelioma is growing but its still to small to take another bi-op. Their decision is to wait and let it grow larger and then have another bi-op.

The drug had worked 14% shrinkage from the start of the re-challenge so its grown 4% over 3 scans. So thats in 24 weeks it has only grown 4%. The Meso is very small that it would be impossible to get a bi-op yet.

That is great news, no really as without the trial drug Pembro it would be growing rapidly so the drug has really slowed things back.

He asked about my ankles swelling, sitting there in a chair they were very swollen I said it was from Chemo days but he said Its because I had my veins striped years ago when I had Vicarious Veins. He said that I needed my veins to drain the fluid and didn’t I get told I would have a problem when they did the op.

He is the first one that has been able to explain why I have a problem.

So I will stay on Furosemide  but I said I couldn’t take them today as you never know when you will get caught in a traffic jam and I would be in trouble. he laughed and agreed.

The next thing I know my nurse came in with a tape measure and measured me up for some lovely green socks called Fitlegs

It was great that we had others to talk to as the day was soooo long.

We arrive for 8am so that we are there for 8.30am.

There was a training today so we waited and bloods were taken by 10am.

We didnt get the drug up to the ward until 4.20pm

Then my canulla had been in so long it had bent so another one had to be fitted. Rex is the only one that can deal with my veins and valves so he popped in to do it. We got out of there 5..20pm which meant we arrived home 7.10pm thats a long day when you have got up at 5am.

But I cant moan as this is my life when on a trial and they have saved my life for 5 years now.

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos Awareness Week and Asbestos still killing 5,000 Britons per year

After a lovely Mothers day with family visiting and an Indian meal to wade through

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We had to get up today and travel to the Royal Marsden early for my Scan day.

We had a phone call from ITV News to ask if they could interview me as figures came out today

Asbestos is killing 5,000 people a year, two decades on from the toxic material being banned, a new report has shown.

The Institution of Occupational Safety and Health (IOSH) said people were still being exposed to asbestos, 20 years after it was outlawed in Britain.

More than 130 companies or individuals have been ordered to stop work activities over the past year because of non-compliance with asbestos regulations, said an IOSH report.

Asbestos is present in at least 500,000 buildings built before 1999, said the report.

IOSH chief executive Bev Messinger, said: “It is unacceptable that 20 years on from asbestos being banned in Britain, organisations are still potentially putting at risk the lives of employees, their families and other members of the public.

“Thousands die in Britain every year from cancers like mesothelioma, while many more are diagnosed with it.

“All this is preventable through good occupational safety and health. It is time for organisations to wake up and realise how dangerous asbestos is. There are no excuses.”

Asbestos is killing 5,000 people a year, two decades on from the toxic material being banned, a new report has shown.

The Institution of Occupational Safety and Health (IOSH) said people were still being exposed to asbestos, 20 years after it was outlawed in Britain.

More than 130 companies or individuals have been ordered to stop work activities over the past year because of non-compliance with asbestos regulations, said an IOSH report.

Asbestos is present in at least 500,000 buildings built before 1999, said the report.

IOSH chief executive Bev Messinger, said: “It is unacceptable that 20 years on from asbestos being banned in Britain, organisations are still potentially putting at risk the lives of employees, their families and other members of the public.

“Thousands die in Britain every year from cancers like mesothelioma, while many more are diagnosed with it.

“All this is preventable through good occupational safety and health. It is time for organisations to wake up and realise how dangerous asbestos is. There are no excuses.”

https://www.telegraph.co.uk/science/2019/03/31/asbestos-still-killing-5000-britons-year-20-years-ban/

 

 

 

 

 

 

 

 

 

 

So that is why I was sitting in the sunshine at the Marsden talking about my life and asbestos.

Ray and i went in and I signed in to have the canula fitted and then went to the scanning room ans the Marsden allowed filming of me going into the room and settling on the scanning table.

The room was crowded ha ha !!

The scan was soon completed and we were free to go home where we just got in in time to see the News at 1pm and there I was. all 5 mins after an hour of filming.

It doesnt matter just so long as the message gets across that Asbestos is still in our life and we must still protect ourselves.

This week starts the Asbestos Awareness Week I love this GIF

Global Asbestos Awareness Week April 1 – 7 — Day ONE: World Health Organization and Elimination of Asbestos-Related Disease Worldwide Each year, the Asbestos Disease Awareness Organization (ADAO) dedicates April 1-7 to increasing awareness of asbestos and preventing exposure by bringing together experts and victims from around the world to share, learn, and take action. 

 

 

 

 

 

 

 

 

 

I have sent a tribute from the uk and I will be opening the conference with a video I have already sent to ADAO

https://www.asbestosdiseaseawareness.org/archives/50846?fbclid=IwAR1TW4wrPr7NTi7YXXRpNVRA7m2Sq0539nLPB4yWOFduUA-8PciOT6RmGvw