A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — The Contamination Expo, UKATA Award to me, Leigh Days Event at the Shard

 

 

 

 

 

 

The day came to put Louis in the kennels and travel to Birmingham.

We had to go to London  first to a board meeting which was very eventful as things have come together fast now. With Donations coming in from all sorts of sources as very kind people are backing my wish to make something of the terrible disease Mesothelioma is and also to back the Asbestos Industry and my wish to educate educate educate the dangers of the deadly mineral.

So  have now put together the program of bring the grants to life for Research and will have an event in March 2019 when we have adertised the grants and then sorted through and the panel of Doctors have chosen the ones they think fit our criteria.

We said our goodbyes and set off for Euston and was soon travelling to Birmingham.

The Hotel at the NEC wasn’t finished with their building work so they had put us in the Hilton Garden and realised just how far that was from the Venue. but they had laid on taxis so it wasn’t so bad.

On Wednesday we woke up breakfast and travelled by taxi to the event I so look forward to.

We all know each other as we are from Linked in and always keep in touch.

We were on the UKATA stand and speaking in their theatre.

I have had so many hugs and congratulations on my great scan result. 4 Infusions and 14% shrinkage has bought so much interest to Mesothelioma and Imunotherapy.The first person in the world to rechallange for Mesothelioma, that really is to enormous to take in, but I’m loving the hugs. 

Craig Evans

Chief Operating Officer at UK Asbestos Training Association Limited
1d
We’ve had a great two days at the Contamination Expo Series 2018 at NEC Birmingham. It was great to see so many familiar faces, Members and new potential Members. A big thank you to the team, all of the speakers within the UKATA Theatre and finally several of our Directors who spoke at the event this year; Graham O’Mahony BSc (Hons), Chris Bishop & Roger Willey. Also, a special mention to Mavis Nye BCAh, it was my pleasure to present this remarkable woman with the UKATA Outstanding Contribution Award today, very well deserved. We will be back at the Contamination Expo in 2019! 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So as so much went on Im having to let the photos do the talking.

One person who stands out was Andew Ramsden of Sundstrom https://www.safetycompany.com/brands/Sundstrom-Safety.html

So I now have a Swedish connection and a Mask of my own.

We have had a business meeting and worked out how to sell the Sundstrom Premium Plus Pack in the UK with a donation going to The Mavis Nye Foundation.

Paul Chamberlain Wefitrpe Ltd Accredited Fit2Fit Face Fit Testing Provider, Basildon Essex. 01268 520962‬ or 07956 587072 Email sales@wefitrpe.co.uk

Will be the outlet and each box will carry the Foundations Logo

Very proud as this is the second mask to be sold with Donations going to the Foundation as we have ESS Safeforce doing the same thing with their mask.

ESS Safeforce: 
Essential House, 
Vaux Road, 
Finedon Road Industrial Estate, 
Wellingborough, 
Northants, NN8 4TG
I couldnt be happier as this is such a passion of mine to make sure the mean are safe.
Also ESS are selling a Razor to men who have stubble and they pay a £1 into the charity. Getting it through that stubble means their mask isnt fitting safely.
http://www.hse.gov.uk/respiratory-protective-equipment/fit-testing-basics.htm

If this is something you would like to do please send for a Charity box and buy a pack of Razors and raise money for my Charity also.

https://ramos72.wixsite.com/mnf-donation-info

It was two days or such great fun and thank you to all the people I have met. The clock is ticking away to Next year 2019 and I cant wait. Its in my Diary I will be there please join me xx

We left and travelled back to London to another hotel in Southwark as we had an invitation to Leigh Days gathering in the Shard. 

 

 

 

 

 

 

It was great to be back here and watch London Light up for the night. What a sight.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My Fav Doctor was there and we can now let the secret out as everyone knows that it is Professor Peter Szlosarek

Congratulations and well done as you have worked so tirelessly to find treatment for the rarer Mesothelioma’s.  

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A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos – A Relaxed Day in London

 

 

 

 

 

 

 

 

 

It has been a great day in London today with our friend Harry Steinberg QC just a laugh and giggle day.

We were celebrating my great news of the shrinkage.

The journey up in the train amazed us as to how many people packed in as we travelled packed in like sardines. Football fans drinking beer already and children chattering excited to be going to London.

At St Pancras I phoned Harry, he could see me but I couldn’t see him and I’m looking outside and he is coming up behind us.

All the hugs over with we got a taxi but I had a phone call from Lucy Johnson of the Express. She is writing a piece on me for Sundays paper so wanted to read it through with me. So no false news in the Sunday express they talk it over with the person they are writing about.

The taxi pulled up outside a lovely restaurant right by The Aldrich Theatre where the show Tina is showing.

It was a lovely meal and lots of chatting to catch up on as Harry has been travelling around Europe.

 

 

 

 

 

 

 

 

The time flew by and it was time to travel home so in a taxi and back to the station.

We said our goodbyes but not for long as we are in a board meeting on Tuesday.

 

 

 

 

 

Ray has come home and snoozing now !!!

 

 

 

 

 

 

 

 

https://ramos72.wixsite.com/mnf-donation-info 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Life is a Rollercoaster, But I have had a great Scan result

 

 

 

 

 

 

Life is a Roller Coaster

Ray had a phone call from the hospital to make an appointment after his scan result is showing something is going on in is Lymph Gland. Why that would give him a lump in his groin we do not know so all will be revealed on the 17th.

We do of course suspect the big C . We are positive people so we try to put the bad thoughts to the back of our mind but we will meet any challenges head on.

Getting old is such a pain (excuse the pun)

Well yesterday was treatment day at the Royal Marsden for me. I had a scan on Monday so we set of very troubled at what my results would be.

The traffic was very heavy as we travelled all the motorways but we did get there on time.

Bloods were done after a fight to find my veins. This is getting harder after so many times the poor veins have been abused with needles through the years.

We sat and waited for the Doctor to call me  in.

 

 

 

 

 

 

 

 

 

He said everyone was delighted when they had looked at my scan in the meeting.

14% shrinkage on only 4 infusions. I have responded so well on a rechallenge of MK3475-28 (Pembro)

Ray sat there shocked and his hand over his mouth.

From then on everyone came up to me and gave me a hug as they said we have heard the great news. Im the first meso Patient to achieve this great news.

A nurse came and saw me, she is one I meet often at conferences and she was so pleased. I said I would love to be brave enough to leave my body to research but she said Mavis you are doing so much while you are alive concentrate on that. There is a chance they do another bi-op so they can really see what is going on a rechallenge  That is Ok by me I said.

I want to know so many answers to the question What is it in my body that is allowing this great result so it can really help other Mesowarriors ??

So Infusion 5 is in and travelling around my veins now The story continues.

I have emailed the great result to Doctors that were waiting to hear, and received lovely answers back it was a great day yesterday.

Im surviving through this terrible disease.

 

 

 

 

 

 

 

 

 

Today we are going for an eye test. I hate it. Does it look better with this ? Does it look better like that?? I can never tell the difference

 

 

 

 

 

 

 

 

 

 

 

 

Please donate to Mavis Nye Foundation lets find the answers to Mesothelioma and fund Research.

https://ramos72.wixsite.com/mnf-donation-info

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – Ray has had a scan, My Interview in the Dockyard, and a new donation page

 

 

 

 

 

Well we have had a turn around here Im the carer and Ray is the patient.

He had to go for a scan.

He had a very bad ear ache a few weeks back and I found him rocking and banging his feet with pain. I got him to the GP Surgery and I thought that something was travelling around as I read up and you can get a stone so my theory was had passed through as he had a lump in his groin. So I worried about his Lymph glad system.

The GP had no idea what it was so a x-ray was ordered.

He had the X-ray and that proved he didn’t have a hernia so a scan was ordered and that’s where we went today.

I have to tell you about a wonderful old lady that came in with her daughter. She was so sweet although had partial sight. It was the kindness of her daughter that amazed me. She did everything for her mum. She had even bought a couple of biscuits for if her Mum was hungry after the scan. We had a great discussion about gin and tonic with rosemary in.

When she went in for her scan another lady laughed because the daughter had spoken very loud so we all heard, but I said it is just lovely to see an older person so well cared for when so many old people are lonely and never see a sole all day.

I do hope there is nothing to seriously wrong I said to Ray how funny how we meet people and then never see them again so you never know how they get on.

Anyway Ray had his cannulae put in and then his scan was completed so in his own words

Well Ive had my Scan. I even got out an hour early. I wasn’t expecting a full body scan, only the relevant area, but a full one was what I got. But no one tells you anything yet.
I did not like the feelings when they shoot the contrast into you. He said you may feel like a wee but don’t worry. I did worry I honestly thought I had done it, it’s that real. But I wasn’t prepared for the burning hot flush.
I now know what Mavis has endured over the past 9 years of regular scans, bless her. I have no Idea what to expect but as Mavis said what ever the result we ill deal with it. I just hope it doesn’t interfere with me taking her for treatment every 2 weeks. So its WTS.

So we have Scanexity with Ray now and they have scanned his chest abdomen and pelvis so they are looking in all the right places at long last for someone who has worked with Asbestos and his wife has Mesothelioma –at last.

Alec Smith published his video of my Interview in the Dockyard I’m very pleased with it.

He had published Rays

We are so happy that this is now shared and please anyone can use it in training courses that will make us so proud to know the history of the Dockyard is used to keep raising awareness.

We have had a great week as it was my birthday and so many cards, messages and presents it was just so great. Ray what did Ray buy me ??? well a box of chocolates and a battery operated power washer. so I can clean the car ha ha !!! say no more !!!

 

 

 

 

 

 

 

 

 

He did book Ben Portsmouth (Elvis) it was a brilliant show and I cried when he had Elvis’s private video showing on a big screen.

But it was a great birthday Thank you Ray xx

 

 

 

 

 

 

 

We have a new Donation as we are now with BT My Donate. All the other donations to Charity Choice are in the Foundations Bank account so thank you everyone for all the wonderful donations so far. We will be Launching Research Grants in December but we have a long way to go to achieve all the Grants.

https://ramos72.wixsite.com/mnf-donation-info 

Life is going to busy again in September as we travel and give our talks at Conferences the Contamination Expo in NEC Birmingham is first

 

 

 

 

So many people to meet up with again.

My newsletter grows 4 Pages for August but there is so much going on in Mesothelioma and Asbestos People are at last showing interest and reporting such a change in the 903 years I have been involved

 

 

Mavis Nye Foundation Newspaper

https://ramos72.wixsite.com/mysite-1

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos Treatment continues as summer is almost over- Now The Speaches begins again

 

 

 

 

 

 

 

The long hot days of summer have disappeared this weekend of course as it is August bank holiday. Why does that happen everyone has been working and looking forward to a bank holiday and the weather turns.

We have managed to work in the garden, cutting back each overgrown plant. Ray helped me so we did get all round and it all looks thinned out and ready for Autumn.

But we came in shattered each evening.

A trip to the Royal Marsden and I have had a top up of my drug, No 4.

I had a phone call asking if I would speak at a Occupational Health Study Day in London in October and Margaret asked where she could meet me, I replied what better place than the Royal Marsden as Im stuck there all day.

They turned up and I used the waiting room as an office much to the amusement of the patients. That kept us all awake.

I went through all that I speak off and that Ray speaks now, that has gone down really well and they invited Ray and he agreed so we are all ready for the event.

They are going to write a piece for the media which I will of course blog and share.

Its been a very busy world on the Computer with the Mesowarrior. Sad times as we have lost so many and so many are very ill. It just goes on and on no let up.

I keep pointing people to trials and support groups I find it all so sad.

So I carry on raising awareness where ever I can.

 

 

 

 

 

 

 

 

 

If only I had a magic wand –Oh if only !!!

 

 

 

 

 

 

I have all the kennel and hotels dates booked for all the other speaking events, September is going to be busy.
Well its my birthday next week another target is reached but also an item off my bucket list will be ticked.
Ray has booked us to go to the Marlow Theatre Canterbury and we are seeing Ben Portsmouth.

https://marlowetheatre.com/shows/the-king-is-back-ben-portsmouth-is-elvis/

The King Is Back: Ben Portsmouth Is Elvis
The world’s number one Elvis tribute artist.
Ben, a multi-talented musician, singer and songwriter had Elvis’s DNA in his blood from an early age. His father was an avid Elvis fan and Ben grew up on a diet of Elvis songs. Having honed his musical talent Ben started his journey as an Elvis tribute artist in 2005 when he formed the Taking Care Of Elvis band. Audiences quickly realized that this was someone with a special talent.
He looked like Elvis, sang like Elvis and had an on-stage charisma that had audiences believing at times they were watching the King himself. This talent saw Ben rapidly rise through the ranks of Elvis tribute artists.
In August 2012, Ben made history when he won the Elvis Presley Enterprises Ultimate Elvis Tribute Artist Contest which took place in Memphis, crowning Ben as the Worldwide Ultimate Elvis Tribute Artist, the first European Elvis to ever win this title.
Fans from all over the world declare Ben Portsmouth as the closest they have ever seen to Elvis Presley. Social media forums are overwhelmed with fans demanding his return to their country.
On this night, you will see the live performance that left David Letterman at a loss for words exclaiming, “Oh my God, Oh my God!” when Ben headlined his show in February of 2013.
Internationally renowned as one, if not the best Elvis tribute in the world today, Ben Portsmouth will bring his unique style and charisma and will show audiences why he is regarded as the best in the business.

I have only to wait until Tuesday and I will be Rockin and Rollin in the aisle Just brilliant.

 

 

 

 

 

 

https://ramos72.wixsite.com/mysite-1 

Mavis Nye Foundation Newspaper

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — August Holidays, My Newsletter, The Contamination Expo with UKATA team

 

 

 

 

 

 

 

 

 

Good Morning

I haven’t written a blog for such a long time. August is a funny month when all the world seems to be on holiday and yes we managed to get away in the hot August days and spent a wonderful week in the Motorhome.

At Quiex Park with our Caravan and Camping club we relaxed and chilled right out among the Thanet countryside, listening to the farmer and his combine harvesters collecting in a good harvest this year.

We walked around the Maze field and learnt that they don’t eat it anymore but make a biofuel. Oh how the world is changing.!!

 

 

 

 

 

 

They have made a maze out in the field where you can here laughter as people lose their way !!

We shopped in the Barn and bought fresh farm foods and just lazed away the days.

We left to return home with the promise of coming back but the weather broke and we had storms and a cooler wetter time.

I carried on working with my Mesowarriors.

So many new patients and they are getting younger. So sad that it seems to hit men and women and very young girls. Peritoneal is rising more and more.

We also loose so many it never stops.

Im coming to terms with the fact I have it again and we travel every 2 weeks to the Royal Marsden as they have allowed me to have Pembro 10mg/kg.

Im on my 3rd infusion now and will have a scan in Sept to see if it is working if not there is a trial at the Marsden of Pembro with a new drug (they wont tell me the name )

Its good to know there is a plan and that they see a way forward. I would get depressed if I thought that I have reached the end of the road.

I have been told my Bi-Op is being used to see what the make up is of the new growth. How does it compare to the old Bi-Op of 9 years ago, what are the changes. This just might give them answers of why I had such a good response. I hope it does.

I must be the only cancer patient to say “Oh great that pleases me ” when told they have cancer again but my thoughts are that it will help to understand Immunotherapy and help more Mesowarriors. We are not wasting a moment of my time that is left.

This has all bought more interest in my case and I have been asked to a huge venue her in London in Oct which I will report on at the time.

 

 

 

 

 

 

 

I have also just signed for permission to show the video of Ray and I in the Live Stream we took part in at Covance Chiltern. This will be shared around the world and seen by thousands.

 

 

 

 

 

 

I wont even go into the shock of Trump say he will bring back production of Asbestos. I did a personal tweet to him he has to be stopped. I have been pulled up by a lovely man on LinkedIn who doesn’t approve of my bringing politics into my comments but HEY! having Mesothelioma from Asbestos is a very political point. It’s through Governments greed for money that is the basis of my dilemma. I also attend the House of Commons with the Asbestos working party so of course I get political and how can I stand by and watch trump bring back asbestos. He has to Ban it not produce it.

 

 

 

 

 

 

 

 

 

Ray created a Newsletter for me where you can keep pace with the news that I find interesting https://mnfnewsletter.weebly.com/

Please have a read through and save as we keep abreast with all the news each month.

They say the warmer weather will return so we shall see if it does we might get another weekend in before Ray and I are off on our conference talks.

the first one being the Contamination Expo

 

 

 

 

 

 

UKATA have partnered with the Contamination Expo Series for 2018 and I will be on the UKATA stand and speak in Theatre 9 on the second day. Exciting.

There are lots of exciting plans in the pipeline so I can never say life is dull –no not even with cancer.

 

 

 

 

 

 

 

 

 

 

A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos –A week of senimars and hospital appointments

 

 

 

 

 

 

 

The wonderful hot weather we have had has been so enjoyable but so very hard to travel in a car and in traffic jams. We have so many road works going on our roads are so hard to get through.

Monday Ray had a CT scan carried out as he has a lump in his groin so I went shopping while he had this done.

Tuesday we travelled by train very early to Wellingborough as we were both talking at ESS Face Fit. I love this venue as they are a great bunch that have always made us so welcome and I did a talk at the seminar last year.

 

 

 

We arrived at Wellingborough Station and was met by two old friends and was whisked away in a Honda 4 x4 pure luxury.

The Seminar soon got underway.

 

 

 

 

 

 

 

 

Daniel Hill started the talks for ESS Safeforce

 

 

 

 

 

 

 

 

 

Alan Murray from BSIF gave a real fascinating talk

 

 

 

 

 

 

 

 

 

Our lovely Fred Charlton spoke about the history of RPE

 

 

 

 

 

 

 

 

 

 

After lunch Ray and I spoke and as usually everybody is amazed at Rays story of Chatham Dockyard

Mark Webster and Harry McCormack from Globus Group

Silicone-based products have long been used in manufacturing because they make excellent lubricants and release agents.
But there is a down side – silicone contamination.
The same properties that make silicone excellent lubricants and release agents causes them to be an enemy of adhesion, therefore a serious contaminant in bonding applications. This results in surface defects and a poor quality finish.
One environment where silicone contamination is a major concern is in coating operations, such as automotive refinishing. Even traces of silicone can result in adhesive failure, causing primers and paints or other coatings to “fisheye”.

They are very active with out NHS

Brian Martin of Dust Solutions  gave a good demonstration of power tools and dust collection.

We then had Nadia Misbah putting us through our paces of GDPR The European Union’s (EU) General Data Protection Regulation (GDPR), effective 25 May, 2018, enhances the security of personal information of citizens and residents of the EU countries as well as Norway, Iceland and Lichtenstein. The unified standard also will cover UK citizens and residents post-Brexit. It’s hard to imagine a company or industry offering goods or services in Europe that won’t be affected by these detailed personal data protection requirements.
They’re rigorous but reasonable and consistent with the spirit of security and transparency in which we’ve handled personal information in the past, not only in Europe but around the globe but we learnt so much about the subject that we now run our lives around it all.

A great Question and Answer was had and it was time to say goodbye and we were driven back to the station to travel home.

It had been a great day

Wednesday we had to travel in the most awful traffic to get to the Royal Marsden to have my second Infusion of my Drug.

The doctor told me that if the MK3475-28 doesn’t work then the MDU, multidisciplinary team,have had a discussion and have lined me up for another trial just in case. It was great to learn of a back up plan.

We left late, thanks to the pharmacy, but my oh my !! the traffic. 1.5hurs just to travel the M26. I get so frustrated

We arrived home at 8pm after leaving the house at 6am.

Thursday Ray had an appointment to collect his new hearing aides –Whoopee !! no more repeating or shouting to make myself heard.

It was to hot to travel.

Friday Ray dropped me off at the Hospital again as I had to go to a  East Kent Cancer Action Group (CAG) meeting.

It was one of the best I had been to as it was very interactive. if anyone in Kent would like to become a member please join us.

http://www.kmcc.nhs.uk/patients-and-carers/km-cancer-action-partnership-and-cancer-action-groups/

Kent & Medway Cancer Action Partnership and Cancer Action Groups
We first met in 2001 as a “Cancer Patients’ Forum” following a Government initiative to involve patients in their own care. We became the ‘KMCC Service User Locality Group’, with our own Partnership Co-ordinator.
In 2016, after a consultation review it was decided to rebrand and rename the Locality Groups. The groups are now called Medway Cancer Action Group, West Kent Cancer Action Group and East Kent Cancer Action Group CAGs for short and the Kent & Medway Cancer Action Partnership is the over arching umbrella of these groups.
The members of the Cancer Action Groups are:
Cancer service users – patients, ex-patients, carers, family members
Representatives from the voluntary sector, including cancer support groups
Healthcare professionals who work in cancer services and have an interest in user involvement

 

 

 

 

 

 

 

 

 

Then like everyone else we have had violet thunderstorms I couldn’t get all our windows closed quick enough so we have a broken window it has to broken hinges.

Oh dear another bill !!

Ray has had a letter that they are not happy with his scan and has to go for another on as it isnt a Hernia oops !!! they might have to do a Bi-Op here we go again.

Scanexity for Ray now

https://www.ess-safeforce.com/news-events/ess-safeforce-provide-face-fit-testing-rpe-user-training/