A Diary Of A Mesowarrior Living with #Mesothelioma #Asbestos — A film Star for a Day. Well making a training video. The last engagement of 2018

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James Wakefield and Rosie Greer had been in touch to see how we could work together so it was decided that Ray and I could make a film.

The amount of planning that they did to get the right atmosphere was brilliant. I was treated like a queen.

So they booked a hotel room, not just any hotel. It was the  One Warwick Park Hotel at Tonbridge Wells near the Pantiles.

19th Dec

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We met Tom who was helping James out So me in a hotel room in the day time –so funny.

A plan was all laid out and it went like clockwork.

10:30 am James (me) to pick up Mavis and Ray from home at approx.

11:45 Arrive One Warwick Park (we was a little late due to a detour with the sat/nav up a one track road but we did see a wonderful old church.)

12:00 – 13.30 Light Refreshments/Lunch for Mavis and Ray we were a little longer due to setting up the camera.

13:00 – 15:30 Record (approx.) This went to plan but it had me flummoxed at times as I have never filmed like it before. It wasnt questions to me it was leads.  but we got through and James was over the moon with it all so a good shoot and wrap. I’m now waiting to see how it is edited and how it will be worked into their Training Program which is the plan for us to work together.–all very exciting

16:00 – 17:00 Afternoon Tea

17:15 Tom to take Mavis and Ray home. Thats how it went but poor Tom the sat/nav took him across country so as to miss all the traffic on Motorways. Even I didn’t know where we was at times.

 

 

 

 

 

 

 

 

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A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — A Busy week LASAG, House of Commons

What a week this has been.

 

 

 

 

 

 

 

It started with a board meeting in London where it was agreed that we could now go ahead and advertise the MNFoundations Research Grants which was exciting as it has taken so long to reach this point. A lot of hard work to raise the donations that would help fund this aim.

After calling in for a coffee we said our goodbyes and got back to Victoria and an easy journey home as both Ray and I were getting over the coughing bug. Seems so many have had it.

Tuesday saw us up at 4.30 walking the dog and off to the Royal Marsden I was praying I would be OK for treatment —but— although the infection had been fought with antibiotics my team decided another weeks rest would be the best idea. I did learn that they will give me the Prembro for another 2 months then if the scan still says stable they will add another drug to help the Pembro. so they have plans which is always great for a Mesowarrior. We need to know there is another treatment waiting.

 

 

 

 

 

 

 

 

 

Well I felt like I had been let out early so we were able to go to LASAG Christmas party in Canterbury which shocked everyone as i had said I couldn’t go.

We had a rock choir which was so lovely and Ali Blake sung a solo for us It was very emotional as we had lost a member that morning and he had left instructions for us all to have a cracker each. Ray and I have left them pride of place on the Fire Place.

I had a great conversation with some of the members especially one man who truly believed he was going to die last year and there he is still enjoying another Christmas.  A lot of hugging goes on at these meet ups xx

Wednesday we had to travel to London again to the Asbestos Working Party and I was really pleased to see Asbestos in Schools was discussed to go before the MPS. Although they couldn’t be there as it was the day the PM was having her Vote of no confidence, which she won –Just.

There was TV Cameras everywhere and people being interviewed.

We had to say our good byes at 5pm as that was the time we were supposed to be at the HSE Women in Health 2019.

We found the Jubilee Line and was in Southwark  in no time and found 240 Blackfriars Road.

Image result for pictures 240 blackfriars

I have been in so many of these tall new buildings the views are always of my beloved London.

Anna Keen talks about why celebrating success is important!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Happy Holidays to the team at Acre – thank you to theWomeninHealthandSafety who joined us for a great night

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So that was a long day and we headed back to Victoria and was soon on our train home.

Then Yesterday and today we have been working on the Web Page of the Mavis Nye Foundation and Launched the Grants Applications for Research.

The Mavis Nye Foundation Research Grant Application

Mavis Nye Foundation Grant
The Mavis Nye Foundation is awarding its first research grants to mark the first anniversary of the charity. Following a year of fundraising from hundreds of generous supporters, the Mavis Nye Foundation is welcoming applications for grants.

One of the key aims of the charity is clinical research for the treatment of mesothelioma and other asbestos related diseases and grants will be awarded for applications that fit this criteria.  Research grants will be awarded for projects up to £10,000.
The opening date for the Grant applications will be 2 January 2019.
The closing date for applications is 31st March 2019. The successful applicants will be be announced in April 2019. 

A wonderful week, we are now on our way to a great 2019 the diary is out and dates are being booked for some Brilliant Venues 2019 so keep reading xx

https://www.mavisnyefoundation.com/mavis-nye-foundation-research-grants.html

 

 

Thank you all for the Donations as its all down to you all that is making my legacy come true 

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

My Blog to Launch The Mavis Nye Foundation Research Grant Application ​#Mesothelioma #Asbestos

 

 

 

 

 

 

 

 

Today is a wonderful day as all my plans have come together and I have been able to launch the foundations 1st aim

The Mavis Nye Foundation Clinical Research Grant Application

Mavis Nye Foundation Grant
The Mavis Nye Foundation is awarding its first Clinical Research grants to mark the first anniversary of the charity. Following a year of fundraising from hundreds of generous supporters, the Mavis Nye Foundation is welcoming applications for grants For Clinical Research.

One of the key aims of the charity is clinical research for the treatment of mesothelioma and other asbestos related diseases and grants will be awarded for applications that fit this criteria.  Research grants will be awarded for projects up to £10,000.
The opening date for the Grant applications will be 2 January 2019.
The closing date for applications is 31st March 2019. The successful applicants will be be announced in April 2019. 

This has raised a lot of interest on Social Media and I have been asked by Mesowarriors and Companies how they can set up Direct Debits so are the Bank details for people to make a regular payment through their banks. https://ramos72.wixsite.com/mnf-donation-info 
Registered Charity 1172765

  Mavis Nye was diagnosed with mesothelioma in 2009, and given 3 months to live.   After years of Chemo Immunotherapy and dedication in helping others.
She is now Founder and President of her own Foundation.  Its aim is to fund research in drug development for mesothelioma.    Also support for Student Nurses and Doctors in the Field of mesothelioma And offer support to mesothelioma victims.

Mavis currently Provides Round the Clock Support on Social Media Groups called mesowarriors

 

 

 

 

 

 

 

 

 

A huge thank you to all those that have followed me and have had faith in me. We have met so many wonderful people and Ray and I have enjoyed speaking to so many. We have loved giving our Presentations even though we were never used to being up on a stage before my illness, but Mesothelioma is a disease from Asbestos and I was so angry when diagnosed to find out Governments could have solved this so many years ago as they found Asbestos was killing people.

I now not only talk about Mesothelioma but about HSE and my wish is to keep young people safe from this terrible Lung disease that seems to appear just as your plans to retire and enjoy freedom from work.

I feel we should all have a mask on as everyday dust gets into our Lungs and damages. Just be aware  and keep safe.

So Have a great Christmas and a wonderful Happy Healthy New Year xx

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –The Royal Marsden and the DNA Results but no treatment this week

 

 

 

 

 

 

 

 

Last week was a bad week as I had a coughing virus bug and slept everyday. No energy to stay up all day.

But we got through and I knew I was going to the Marsden so I hung on.

the traffic was to bad yesterday and we got through easier was soon parked up.

My bloods were taken and I explained I had been ill as I lost 1 stone in weight.

There seemed a long wait and then my nurse said they want more blood from me as my sample had congealed. So I gave more blood and waited again.

The Doctor called me in and checked over all my notes but then the Consultant popped in and said they have the results of my DNA testing and they are excited.

She wanted to show me pictures but she couldn’t get into the system so said she would be back. She also said would I have a scan as they wanted to see how my trial was going as they feel the cancer has the upper hand and wasn’t letting the Pembro work??

They want to put another drug with the Pembro to get around this.

So I agreed to the scan it was going to be 2pm.

This meant I couldn’t do my Telecom to the Confirm trial I had been given permission to sit in the quiet Chapel to do it but my world and mind was going mad.

I was given a prescription for antibiotics.

We tried to get a dinner bit its the Staff Christmas dinners so we couldn’t get a dinner so had a cake instead.

So at 1.30pm I went to the scanner and that didn’t take long.

STABLE again.

So things will be worked out for me and I was asked to come back next week. They want the antibiotics to clear up the infection so I suppose the scan showed that was bad.

I gave more blood as they want to check my thyroid and that was it no treatment.

Oh yes the DNA –Well —

 

 

 

 

 

 

 

They have come up with all the answers in my DNA and I was given a wonderful show of all the pictures. It is fascinating. They now are sequencing my DNA (to be honest I dont know just what that means but my mind was in a whirl looking at such professional pictures that I have only seen in conferences ) and they are going to now write the paper up and announce in a medical journal. 

Basically the new tumour is now full of PDL 1 when I had very little in first Tumour 10 years ago and also I have plenty of white cells now I didn’t have in first one.

I have had a 14% shrinkage but on second and now yesterdays Scan it is still stable. They cant work out how I have all the soldiers but no one has given the order to the T Cells to kill.

As soon as they print up their findings I will do a blog

 They will now look at all the Patients who failed on trials and see if the combo might work on them if it works with me. I keep my fingers crossed. Its all I can do.

Now the spot light is on Ray and he has his PET Scan tomorrow. A double act arent we