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 

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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 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. 

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

 

 

 

 

 

 

 

 

 

A Diary of a Mesowarrior Living With #Mesothelioma —-A visit to Beacon International

beacon

For 26 years Beacon has been providing equipment and consumables for the asbestos removal industry. The team collectively has 150 years of experience.

Things are moving fast and furious with The Mavis Nye Foundation in a way I had never envisaged.

We travelled yesterday to our meeting with Beacon. They sent a lovely young man Luis as he lives in Maidstone and was able to come and pick us up and take us to Desborough Northants. A long journey in rush hour traffic about we got there in 4 hours.

We arrived and was met by so many friendly people it was a pleasure to have travelled so far.

Ray greeted us and told us all about his latest inventions and then took us up to meet Andy, the owner. After a cup of coffee we were shown around all the factory meeting the workers who showed us what they were working on. Andy showed us every corner and it came across how proud he is of his workers and what they were making. It was so good to know Manufacturing was still going strong in this day and age of uncertainty.

A little thing we found fascinating was when Beacon moved into the premises, that had been a shoe and handbag manufacture, the locals didn’t want to lose the handbag side so Beacon set up an area and carried on providing the handbags.

handbags

We carried on and watched as these vacuums were being produced.

A  new rang of Safe Change Vacuums allow the user to safely vacuum hazardous dust and when the job is finished the full dust collection pod and be safely removed and a new one fitted without the need for a controlled environment.

This new range of equipment is ideal for asbestos removal licensed and non-licensed work, medical, emergency services and countless other applications.

Screen Shot 2018-11-27 at 20.05.56

Andy with his eyes shut ha ha !! I noticed that there was no dust anywhere and asked if this was due to all the testing of dust extraction going on. They hadn’t thought about that but really it must be that the factory has become and enclosure almost.

There was so much to see Screen Shot 2018-11-27 at 20.05.40

These are the water tanks for the portable deacons which are fascinating. I had not thought that you couldn’t park deacons in London so portable ones are set up.

all their products are listed here http://www.beaconinternational.co.uk/

At the end of the tour Ray and I carried on and we gave our talk to the workers that had gathered and they were really appreciative as they said they work in the Industry but here were two people who have gone through the consequences of Asbestos.

I had said at the beginning and end of talk that they are helping people to stay safe, by the end of our talk they believed it and said they see their work in a different light now.

Then Ray announced how the are going to do a cycle race in May.

A relay race from site to site starting in Washington and ending up in a new premises in Essex.

That surprised me and does sound such great fun we will look forward to that.

This lovely man with his moustache are in the latest Harry Potter film, you just never know when your going to meet some one famous do you x

Screen Shot 2018-11-27 at 20.06.14

Jan will see the launch of a new product for the enclosure when I have more details I will divulge how that is cementing my Foundation to Beacon. They are at the moment working hard to get the launch underway.

We travelled home and although in rush hour Dartford Crossing was good.

What a wonderful day.

Thank you so much Beacon and thank you for the lovely flowers and wine.

 

 

 

A Diary of A Mesowarrior living with #Mesothelioma #asbestos– A crazy crazy week.

frustration

Its been one of those weeks, You know where you wish you could stop the world from spinning then realise its you that are spinning.

The traffic jams to the Marsden on Monday started the week even if the treatment went well but it is a long boring day and poor Ray is so spaced out by the time we get home but he was violently sick and went to bed early.

I know that deep down he is worried that he isn’t hear the results of the Bi-Op. We keep phoning.

Tuesday a Consultant phoned to say Ray had Lymphoma and that they will sit and wait to see what happens then a secretary phones to say can she book the appointment for Ray’s Op. ???

Please get it right.

Wednesday passes uneventful Thursday Louis has a haircut so he fell out with us and sulked all day.

Friday -yesterday Well a day of complete chaos.

We had to travel to London for a Foundation Meeting which Ray was Chairing so we were all prepared and ready for the off.

Got to the station and the train was delayed due to a disruptive passenger that had to be taken off the train a couple of stations before us.

This delayed the train so they had to put it on a loop line and we journeyed slowly to London.

At Denmark Hill the driver told us the train could go no further as a train was blocking Victoria on our line.

We all got out and had to get over to platform 1 where a Over Ground train took us to Clapham Junction where we got the Gatwick express into Victoria. All the south eastern trains were lined up going nowhere.

We met up with a friend and had a coffee and then journeyed on to our meeting.

A very lively event where Ray did a great job and so many problems got solved and so many actions for me to sort out, it was like the good old days of our Fire Alarm Company. It’s amazing how you fall back into it.

The pilot research grants are ready for people to apply for are now going to be advertised and we sorted how this would happen. At last we are moving forward. The Foundation was launched a year ago and it took a year to get to that point but at last we are moving onward and things will really happen in 2019.

We have 3 Mesowarriors on the board now which pleases me.

The meeting all done and dusted we went and had a coffee with 2 of the trustees and relaxed then made our way to the station.

Guess  who made a mistake and instead of getting a train from Charing Cross I said now the Victoria problem must be over now. Oh Dear !!

The Ramsgate train alongside other trains were delayed.

They finally said we had a train platform 1. That meant a long walk so everyone else was rushing ahead and clamouring into a 4 carriage train. We had to push our way in to getting a standing spot. A dear little 4 year old going on 40 sat on her case and got out her packed dinner. Her Mum had made sandwiches for her and cut up an apple.

She kept us amused until she got out at Bromley South. I was getting so tired of standing and a young  girl offered her seat I was so relieved as an hour of standing squeezed up was just to much. How can the get away with such a dangerous load. You feel like cattle as your herded onto 4 carriages.

Ray finally got a seat behind me at Rainham.

We were so pleased to get home and get dinner.

I found a message on the answer phone Ray has an appointment with the haematology department on Wednesday at the QE2M hospital  AT LAST !!!! It has taken since the 4th July ?

 

 

 

 

 

 

 

 

 

One good thing that happened though

https://anchor.fm/…/episod…/Demolition-News-Radio-147-e2khi9 I love it thank you Mark Im so pleased I spoke up today. I have wanted to say it for a long time but today you shared that your son was the camera man and In all my presentations is about protecting young lungs so that they stay healthy through to their old age. Just as we retired I found I couldnt breath and then I had a death sentence put on me of 3 months. Ok we all know we die but its a shock when your told when that day will be. So if I have saved one person Im happy today xx

Mark Said —Rightly Reprimanded – Why I should practice what I preach, and how a LinkedIn message might just have saved my son’s life:

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — SCANXIETY

 

 

 

 

 

 

 

Scanxiety

I was in a meeting this week and Scanxiety was bought up and a Oncologist didn’t understand what was meant by that.

It isn’t a new word as its been around ever since I have had Mesothelioma. Debbie Brewer talked of it in fact I think she named it as she used to get so paranoid about growth of the disease as we all do.

It is in every blog written by the patients.

The NHS are so short staffed and radiographers are in short supply so the results of our scans can be a long time so we patients start worrying more and more.

We would like the results the next day but that isn’t being reasonable.

Medscape Medical News wrote —

It’s a not part of the medical lexicon (at least not yet), but “scanxiety” is a word that cancer care providers would do well to know.

Giles Maskett wrote a great piece to show the view of both sides

You might not have come across the word “scanxiety” before but you will have no trouble getting its meaning. It doesn’t yet have a formal dictionary definition but it’s a word used by people treated for cancer to describe the feeling of dread associated with their follow-up imaging. Even someone who feels entirely well and knows that the chance of anything bad appearing on the scan is remote can suffer from profound apprehension around the time of the scan“scanxiety.” Some patients describe severe physical symptoms connected entirely with the process of undergoing an ultrasound, CT, or MRI scan and waiting for the results.

Radiologists are very familiar with this. A colleague who regularly performs follow-up ultrasound scans on children with cancer describes how just the process of making a measurement on the screenpart of the protocol for any normal ultrasound examinationcan induce panic in the watching family.

Rightly or wrongly, patients attach ever greater importance to the role of imaging in their management. In that context, the recent report from the Care Quality Commission into radiology reporting delays in the English NHS makes for depressing reading. The CQC found that in some areas thousands of patients were waiting weeks or longer for the results of their x-rays and scans. Not all of these are patients with cancer of course, but many of them are and a great many more will be worried that the scan might show cancer, even if that is not the specific concern.

Radiologists have our own form of “scanxiety”the experience of being faced with hundreds of studies waiting for a report, knowing that each one represents an individual whose life is on hold while waiting for the result. Knowing too that amongst themneedles in the digital haystackwill be some for whom an urgent report would make a real difference and others for whom a delay could be disastrous.

One anticipated contribution of artificial intelligence to radiology is the possibility of smart prioritizationindicating which studies contain significant abnormalities and prompting the radiologist to report them first. If I am a little cautious about the potential for reliable automated sifting of normal studies from abnormal, it is because I remember that one of the catchphrases of the whole body CT screening industry in the USA was: “We haven’t found a normal yet.”

The thrust of almost every current initiative in cancer management, whether it is targeted screening, faster diagnosis or personalized medicine is that more people will require more imaging more often. The UK is woefully under-prepared for this predictable surge in demand. If you haven’t come across it before, get used to the idea of scanxietywe are all going to be feeling more of it in the future.

Giles Maskell is a radiologist in Truro. He is past president of the Royal College of Radiologists.

https://blogs.bmj.com/bmj/2018/08/23/giles-maskell-scanxiety/

Heather Von St James wrote

Mesothelioma Checkup

Heather at Baylor 2016No matter how good I feel on a day-to-day basis, every six months, the reality of being a long-term cancer survivor comes crashing back. Even though I’m going to be celebrating 11 years since my diagnosis on November 21, I still get uneasy when the time comes around for me to get on a plane, head to Houston for my scans and to see Dr. Sugarbaker.

My “scanxiety” is nothing like it used to be. I used to get so nervous in the days and week leading up to my appointments, I found it difficult to not have anxiety attacks. As the years have gone by, then nervousness has subsided, and my thought process is different. I have been around the meso community long enough and know that at any time the cancer could come creeping back, but that is why I continue to see my specialist every six months, to stay on top of things.

So you see its something we Mesowarriors always have coped with and we help each other through the scary times talking about it is a great help.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — @BOHSworld #FAAM Conference

 

 

 

 

 

 

 

I had the honour of opening the FAAM Conference at the Park Inn Manchester on Friday 8th November

A different sort of presentation as I didn’t just want to be talk about the disease but wanted to cover Where asbestos is found today.

By the time I had finished it was pleasing to feel that I had covered it well. Including all my videos that played as we have bought a newer version of power point so was nervous that all would be well.

 

 

 

 

 

Martin and I have been firm friends since last year when FAAM Launched in London it was great to still be around to be able to speak at the 1st conference they have held.

I love the video of that night

www.youtube.com/watch?v=dLIgwq5sEL8

 

 

 

 

 

 

 

 

 

Jonathon Hughes of No Time to Lose campaign spoke of working together to tackle asbestos related cancer.

Then my recommendation of Sean Fitzgerald and David De Vreede as I was enthralled with their work as they found the Asbestos in Clares makeup and I had helped them with finding the UKs supplies.

My fingers get in every pie

 

 

 

 

 

 

 

 

Sean from the USA

 

 

 

 

 

 

 

 

David from Holland

Then it was the turn of Asbestos Forum from Holland as well

 

 

 

 

 

 

 

Yvonne Waterman and Jasper Kosters

They gave a great talk about Asbestos in products when banning isn’t enough

 

 

 

 

 

 

 

John Addison Amphiboles and other fibrous mineral

Jean Prentice stood in for Garry Burdett heated fibre and when it is or isn’t asbestos

End of Day 1

We had a drink reception and then a meal before it was time for bed.

Day 2

Sara Mason Phase contrast light microscope viability

Ashley Hawkins  who I had met at Brunel University Talked of the work they do which had enthralled me when i visited them.

Then Jean Prentice stood in for Gary Burdett again she did so well what an interesting lady.

John Moore Gillon spoke  of Asbestos related diseases and their treatment. Bless him he kept mentioning Ray and I and when he finished. We did a standing ovation and he rushed of the stage hugging us and tears flowed.

 

 

 

 

 

 

 

 

Martin Gibson spoke of new developments and technologies and then Beacon Andy Lewis Thompson handed the floor to Bruce to tell us all about a new idea for enclosures. Its not in production but I have been invited to help them showcase it so watch this space xx

 

 

 

 

 

 

 

 

So we came to the end of the Conference and I was closing it so I gave them this for all the Mesowarriors past and future