A diary of a Mesowarrior living with #Mesothelioma #Asbestos — A Day in the House of Commons

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Tuesday June 26th 2018

meeting 2 Mesowarriors in the restaurant of the House of Commons was a great part of this All Party Group on occupational Safety and Health meeting.

 

 

 

 

 

 

 

 

We had become such firm friends as her Dad suffered Mesothelioma and now I have met her and her Mum in real life makes it all such a special day.

It is why I enjoy going to the House Of Commons as you are right where you can fight and change laws with the help of MP’s.

So we made our way to Room 14 and met all the other members of the forum but also this again was special as at last I have met up with Fernanda Giannasi fro, Brazil

Fernanda Giannasi  is a symbol of the struggle to ban asbestos in Brazil. As Labour Inspector for the Ministry of Labor since 1983, Giannasi defends the public interest as regards worker safety and health. Although Brazil still uses asbestos, it has been banned in more than 40 countries, including the European Union members. Asbestos is used in the production of roofing, water tanks and brake pads, and 3000 other products. It can cause severe respiratory disease and cancer.
Giannasi is a founding member of Associação Brasileira dos Expostos ao Amianto (ABREA), the association of asbestos‐exposed workers in Brazil, and coordinator in Latin America of the Citizens’ Virtual Network Against Asbestos.

We all settled down as Martin Doherty Hughes MP and Jo Stevens MP Chaired the meeting.

Liz Darlinson had to read Our Dr Mags Portman a Mesowarrior who fights along side me with the disease.

She was on BBC 2 last night https://www.bbc.co.uk/programmes/p06bttt6 As here field is Aids and has fought the corner for so many sufferers to get the drug on the NHS.

Now she has a new battle bless her and was to unwell to come and talk herself of her story.

Sir Antony Newman Tailor Prof at the Imperial College spoke of the biology of Mesothelioma as the basis of effective treatment.

Jason Addy of the Spodden Valley Trust spoke of a subject I know well as I’m in with the residents and their fight of stopping building of many houses around the Turner Newel factory that although empty children are playing in such danger. The earth is contaminated around there. and is causing a 3rd wave of the asbestos disease Say No To Hindley is their campaign

 

 

 

 

 

https://www.28dayslater.co.uk/threads/turner-brothers-asbestos-mill-spodden-valley-rochdale-nov-2012.76074/ 

Then Fernanda spoke the fight to ban Asbestos I Brazil a fight she has so passionately fought for a long time.

She leads the struggle of 3500 workers who have filed lawsuits against the industry. Criminal charges driven by economic interests have been filed against Giannasi for slander by Eternit, the biggest asbestos producer in Brazil, and by supporters of the French multinational Saint‐Gobain. She has suffered pressure from the Canadian government, the world’s largest exporter, and has been the subject of death threats. In the USA and Europe, her work is well known and respected.
Giannasi has successfully widened the world discussion. According to Giannasi, “I defend an immediate world ban on the production, marketing and use of asbestos”.

John Mclean gave us an update on Asbestos in Schools Figures by the Joint Union Asbestos Committee (JUAC) in conjunction with the campaigner Lucie Stephens and Rachel Reeves MP, reveal the shocking disparity in asbestos management across Multi Academy Trusts (MATs) and reinforce the need for the Government to take urgent action.
The data, gathered via Freedom of Information requests, included 54 reported asbestos exposure incidents in academies, including:

Krishnendu Mukherjee told us of the film Breathless -the fight against global asbestos industry

New documentary Breathless focuses on asbestos industry in developing countries – Film comes at a crucial time for the asbestos industry, as it looks further afield in order to manufacture its deadly products

This left time for questions and the meeting was closed.

We said our goodbyes to those that had trains to catch while others walked to the pub and finished the day with a chat in the sun and noise of London.

It had been a good day and a good meeting.

 

 

 

 

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A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Our First Live Stream Presentation with Convance Chiltern and a relaxing time by the thames

 

 

 

 

 

 

I have had another great adventure as we at last went out in the Motorhome. The sun has shone all the time and the weather really warmed up.
Wednesday we packed the Motorhome and travelled to Hurley Camp site. It was a good journey so we were soon unpacking and relaxing by the River Thames.

 

 

 

 

 

 

 

 

 

 

 

 

 

Thursday we got up and packed everything away and travelled a short distance to Maidenhead to Covance Chiltern

 

 

 

 

 

 

 

 

 

 

 

 

We just didn’t know what to expect. With our presentations on a memory stick and Louis all sleepy in the Motor home into the building we went.

At reception came  some lovely members of staff who made us feel so welcome straight away.

We had lunch and talked away and it was explained that we were being joined by the head Office –In the US . Oh the wonders of Live Stream.

The photographer wanted photos outside with our Motorhome he was fascinated by our mode of transport.

Louis has got into the picture of course.

Returning back to the building and settled in with Mic’s and lightening and we were ready for go.

Only a few people in the room and we don’t know how many were listening in and watching us. Ray presented first and I followed. Then question time.

People we couldn’t see were asking so many questions and we were happy to answer. It seems everyone was thrilled with us and our presentations. The video will be published and used world wide.

When I spoke of this in our Private group in Facebook  Mary Hesdorffer said – These are companies that do the data management, lab assays and ensure adherence to clinical trials. They contract with companies that are developing and running trials to make sure compliance with clinical trial directives. the patient experience is so helpful and inspires some who do the work remotely who never have the opportunity to engage with those that they have an impact upon. Good for you Mavis and Ray!

I’m so please we did this now. and also I might need their expertise in the future.

 

 

 

 

 

 

 

 

 

 

Thank you girls for the wonderful day and memories you have given us and we look forward to the video.

We said our goodbyes and returned to the campsite and spent a restful time until returning home yesterday Sunday.

Lots of walks by the river and down country lanes. It has been a great break.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

But I did keep a check on my Mesowarriors and sorted out problems for them xxxxx

https://www.covance.com/ 

 

A Diary Of A Mesowarrior Fighting #Mesothelioma again. #Asbestos Bi-Op done, Wales for the Swansea Nurses Study Day ending with the LASAG Ball

 

 

 

 

 

 

 

 

I haven’t been able to keep up with the blog and travel its been a long week like a Punch and Judy show, Nothing seemed real.

 

 

 

 

 

 

 

 

 

 

Monday we had to put Louis into the kennel again as I had to get to the Royal Marsden for my Bi-Op.

On arriving shown to the day ward and a lovely Polish nurse booked me in and gave me the gown and red slippers they give you so you don’t slip.

Silly me had it on the wrong way and I had to turn it around so it did up at the back.

Then onto my bed taken to the operating ward where I was put on the CT table. The Doctors surrounded me and told me to keep very still while I had the procedure. https://www.ouh.nhs.uk/patient-guide/leaflets/files/5810Pct.pdf

First the arm went numb as I lay on my tummy. I tried so hard not to move. The cold of the of the fluid used to clean the area and I’m moved into the scanner It’s not like I’m used to it a special ring to make it easier.

I looked up and  a rack of special clothing was pulled into the room and the team dressed up in clothing do they were safe from the rays.

The Doc told me I will feel the first needle as they inject the numbing liquid, yes I felt it and then yes it went numb so I was happy.

You do feel pressure as the needles go deeper and deeper and you keep passing into the scanner for them to check. I heard a click as they took the first sample,

THEN OMG A PAIN FLASHED THROUGH ME. I said that hurt that really hurt, and it did.

I had a lump in my throat and I said there is something in my throat do I cough or do I swallow. The Doc said cough! Cough! and I did but blood shot all over the pillow and another Doc was giving me lots of paper towels. The blood did calm down though.

They put pressure onto my back to try to stop the bruising and then it was all over and I was put onto a bed again and taken to Wilson Ward.

I got worried about Ray as the nurse said he wasn’t answering his phone. No they were ringing home not his mobile.

He did eventual come to me in the ward and stayed until Bedtime then went to his room he had paid for.

 

 

 

 

 

 

 

In the morning I was told I could go home so I got dressed and we then travelled to Paddington and onto Wales where we checked into the hotel the Nurses Study way was going to be held. We just collapsed into bed and I watch telly to rest.

Next day we spent in Swansea where they have a great market.

 

 

 

 

 

 

 

We came back and had a rest before walking on the beach

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Nurses, Richard Green of Hugh James and Sarah Morgan Nurse Specialist met up with us and we went for a meal in a very high building you see above.

 

 

 

 

 

 

 

The views were just great 

 

 

 

 

 

 

Then it was early to bed to get up for the next day

 

 

 

 

 

 

 

Look who was there Our beloved Doctor Peter

 

 

 

 

 

 

 

Ray and I gave our talk with everyone in tears and yet lots of laughing. We are not all serious.

Agenda
9.00 – 9.30am
Registration
9.30 – 9.40am
Introduction – Richard Green, Hugh James and Sarah Morgan – All Wales Mesothelioma UK Nurse Specialist
9.40 – 10.20am
Lung cancer and mesothelioma – Diagnostic pathway – Dr Gareth Collier, Consultant Respiratory Physician
10.20 – 11.00am
Mesothelioma: the current picture in Wales – Dr Jason Lester, Consultant Clinical Oncologist
11.00 – 11.15am
Tea/Coffee
11.15 – 12.00pm
The role of immunotherapy and arginine deprivation therapy in mesothelioma – Dr Peter Szlosarek, Consultant Medical Oncologist
12.00 – 12.30pm
My Story – Mavis Nye, Mesowarrior and founder of the Mavis Nye Foundation
12.30 – 1.15pm
Lunch
1.15 – 1.45pm
Our Story: Gwent and Monmouthshire Lung Cancer and Mesothelioma Support Group – Samantha Williams, Lung Cancer CNS
1.45 – 2.15pm
Role of the specialist MDT – Dr Anna Bibby, NIHR Doctoral Research Fellow & Honorary Respiratory Physician
2.15 – 2.30pm
Coffee
2.30 – 3.00pm
Latest legal developments in mesothelioma compensation claims – Harry Steinberg QC, 12 Kings Bench Walk
3.00 – 3.30pm
Where might I find asbestos? – Greg Byrne, Managing Director of RB Asbestos
3.30 – 3.40pm
Close – Richard Green, Hugh James and Sarah Morgan, All Wales Mesothelioma UK Nurse Specialist

It was great to meet up with our friends Greg Harry and Peter.

Sarah Tweeted Thank you to all who attended the #mesothelioma study day today in #swansea @Mesouk @HughJamesLegal @SarahMesoWales wonderful to have such excellent speakers

 

 

 

 

 

 

 

 

 

 

 

 

Taken by Jill Lemon

 

 

 

 

 

When all finished and everyone rushed home We went for a drink and a laugh in the bar the youngsters went off to Karaoke in Swansea but I had to be sensible and go to bed I had to realise that I had to let the bi-op area settle down as we had a long day Saturday So they went off and we went to bed –sad !!

Saturday we sped in a fast train to London and found our hotel in Fleet street.

Where we had to get ready and go to the Middle Temple Hall for the LASAG Ball.

The meal was the trendy idea of bowls so we ate a varied amount, apparently this is what the Duchess and Duke of Sussex had so I expect it will be seen more and more.

We are now back home with the dog out of the kennels and the washing done and all the cases are empty—- for a while !!!

What a wonderful building. 

 

A Diary Of A Messowarrior Living With #Mesothelioma #Asbestos My Visit to the Royal Marsden and the Oncology Convention Excel


 

 

 

 

 

 

 

 

 

 

It is a while since I have written the blog but my head and life has been all over the place.

I realise I had thought I had beaten this disease and it wouldn’t come back. I filled my diary up and thought nothing could touch me again. Then along came the day they said it was growing new growth and I’m back on the drug.

I have had so many good luck wishes I know so many people are behind me. Doctors saying if I need help just knock on the door. I have found the strength to go on and pull all the stops out again.

So I wont wallow in self-pity I will fight again. Promise !!

So the plan is a Bi-Op and then a scan then the drug every 2 weeks.

I have had to replan some talks but not a lot I’m working around the diary.

This meant putting poor Louis in the kennels and travel to Kensington booking into a swanky Hotel and we celebrated our 58 years of marriage June 4th with a very nice meal and wine.

 

 

 

 

 

 

I have always wanted to know what it was like behind those doors.

We walked to the Marsden the next day, Tuesday, as I had to have my bloods done. We walked around so the hospital wouldn’t seem so strange to us as I’m going to stay in overnight on the 12th June.

I had the bloods taken and then we booked Ray into a room so he will be near by me.

I then found the Royal Marsden Charity Office where we met the young women I have emailed but never met.

My little booklets for the Foundation were welcomed and will be given to the Doctors and patients.

I came away and this lovely shop was opposite.

 

 

 

 

 

 

The scent was just wonderful.

We then got lost and walked to far by the time we got back to the hotel we were shattered so just relaxed as we knew we had a busy next two days.

 

 

 

 

 

 

 

 

 

On the Wednesday signed out of the hotel and caught the underground to Tower Hill then the DRL to The Oncology Convention Excel as we had an exhibition space and Nicky had set everything up the day before but we had a case full of goodies to put out.

 

 

 

 

 

 

 

 

 

It was great  so many people came by and showed an interest. Doctors, Nurses, people from all walks of the Medical profession.

They all have taken our Booklet to give to patients and doctors. Sometimes people didnt know what Mesothelioma was or even some, Asbestos I enjoyed explaining.

I did a speech and would you believe I had a weird ear like it was blocked and everything sounded funny. The room is very noisy and Ray kept making signs to talk into the mike, but everyone said they enjoyed listening to my story and that it was good to hear a patients point of view.

When the show closed on the Wednesday we had to find the Ibis Hotel which was so near although there are two and of course we went to the wrong one. Harry helped us carry cases and we just dumped everything in and then went by Cab to Field Fisher for Summer Drinks party on their terrace. I never refuse an invite to this lovely spot.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We said goodnight and travelled back  to our hotel. So many people so much traffic London never sleeps.

Then back to the Ibis and bed.

There was a crowded breakfast room young people from around the world as there was an exam in the Excel. But I will say they were all so lovely and well-behaved.

We got all packed up and booked out as another day was in front of us.

Back to our stall but it was so busy the second day always seems to be at these events.

We talked all day that a lovely GP messaged me such a lovely message today.

Hi Mrs Nye,
I came across your stand at the Oncology Convention. There were quite a few people around the table ,you were busy so I didn’t stay. I picked up a booklet and will be promoting your charity to all my patients with Mesothelioma. It’s wonderful that support is out there for them. Thank you

Now that little message has made the last two days so worth while. It sums up what I was trying to achieve. Awareness.

The cherry on the cake was being asked to do a filmed interview which I enjoyed and was word-perfect.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Meeting the President of the Association of Personal Injury Lawyers and the lovely Marlene Lord of APIL

Brett Dixon is a senior fellow of APIL. He is a consultant personal injury solicitor based in Lancashire with Smith Jones (Solicitors) Limited. He also runs Brett Dixon Training Limited delivering specialist legal training throughout the UK for APIL and in-house for firms.

 

 

 

 

 

 

 

 

 

We have come home tired but so happy.

http://www.oncologyconvention.com/speakers/ 

For clinicians and researchers working in the oncology profession.
Specialising in head and neck, gastrointestinal and lung cancer, the European Oncology Convention will bring the world’s leading professionals in the oncology industry together for a unmissable two-days at ExCeL, London. Complete with an unrivalled line-up of 85 CPD accredited seminars, interactive workshops and state-of-the-art showcases from exclusively selected exhibitors, this event promises to show the revolutionary ways of studying and treating cancer.