A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — A Day At ASBESTOS AWARENESS TRAINING

 

 

 

 

 

We travelled the same way as if to the Royal Marsden but turned to the left not right at J8.

We came to the pretty town of Reigate and then on to Ironsbottom Sidlow.

The gates were shut so there was a queue waiting to get in.

We soon were sipping a drink and greeting people.

So the day began

 

 

 

 

 

 

 

 

 

Rebecca Crosland BESA Health and Safety Advisor spoke very professionally. She really knows her job and gave a great talk on Asbestos in South Africa  and then her work here in the UK.

She spoke about ASBESTOS AWARENESS TRAINING,

• The properties of asbestos and its effects on health, including the increased risk of developing lung cancer for asbestos workers who smoke
• The types, uses and likely occurrence of asbestos and asbestos materials in buildings and plant
• The general procedures to deal with an emergency, e.g. an uncontrolled release of asbestos dust into the workplace
• How to avoid the risk of exposure to asbestos
• Asbestos Video clip

 

 

 

 

 

 

 

 

 

• FACE FIT PRESENTATION was given by Paul Chamberlin-We Fit RPE Ltd (Fit to fit accredited)

• Why RPE must be able to provide adequate protection for individual wearers.
• Why RPE can’t protect the wearer if it leaks.
• A major cause of leaks is poor fit – Why tight-fitting face pieces need to fit the wearer’s face to be effective.
• The daily shave and employment contracts
• Why fit testing will ensure that the equipment selected is suitable for the wearer.
• Delegates will be able to try the masks and find out why face fit testing is vitally important.
• A practical face fit session Always enjoy Pauls presentations he is so dedicated to keeping peoples lungs safe.
• 

 

 

 

 

 

 

Then it was us Ray and Mavis Nye Presentation A mesothelioma Asbestos Journey

It all seemed to go down so well and we did enjoy the hospitality but a little secret — Paul put the wrong presentation on for us as we used his computer. That truly throws you so remind me to make sure that doesn’t happen again xx

Beccy was so kind as to Donate £100 to MNfoundation  and James Johnson of J&L ASBESTOS RECRUITMENT Gave a handsome Donation. It always makes me feel so humble when this happens peoples kindness amaze me.

Thank you to all those that donated we will do so much for research into Mesothelioma together.

 

https://www.thebesa.com/ 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – A Very Special Day A Foundation Event in Hertford Heath

 

 

 

 

 

 

Today has been a special day as Joanne Tatum and Maureen Cooper had arranged an event for the Mavis Nye Foundation at  The Hertford Green Hall.

We travelled early so the traffic was so good and we arrived early Maureen and Jo welcomed us.

The event was in aid of Bruce Coopers 1st anniversary of his passing.

It doesnt seem that long ago when i got this message –

 

 

 

 

 

 

 

 

 

Dear Mavis, My lovely Dad, Bruce Cooper, passed away today at home surrounded by family and friends. He never gave up hope that he would beat this awful disease and fought to the end. He is now pain free. Dad was a loving and caring husband to my Mum, Maureen, an incredible Dad to George and I and the best and most loving Grandad ever to Meg, Tom, Amelie, Liliana and Sophia. He will be forever in our hearts but missed so very much. Night God Bless Dad xxx

They immediately thought of the Foundation and raised donations at the funeral of this special man  and I got this message We can now confirm that £4218.36 was raised in my Dad’s memory for The Mavis Nye Foundation Thank you all so much!!!

 

 

 

 

 

 

 

 

 

Jo and Maureen then came to the House of Commons when I had to attend a meeting they are both always behind me spurring me on in my journey

I have enrolled them onto the Board of Trustees and so now I have 3 Mesowaariors on board. I had to make sure the Foundation went on in the right hands when Im not here to carry on and Joanne’s lovely family I just know are the right ones.

So that is the story behind today.

I think the photos say it all except guess what The message tonight was —

Absolutely thrilled to tell you that we raised £1300.00 today in Dad’s memory . Thank you both so much for coming to join us today xxx

What an amazing sum and just in time for we have the closing date looming for the applications for our research grants.

The first one we issue I have decided will be in Bruce’s name.

The Mavis Nye Foundation Grant  Dedicated in memory of Bruce Cooper

I just know Joanne and her Mum will be at the presentation night

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos – WOW! What a week. Harry’s Birthday a Board meeting so much excitement

 

 

 

 

 

 

 

Wow what a week !!! Amazing week.

Monday saw us at the Royal Marsden for my treatment. I was talking about the new vein finder that Ray had in the K&C hospital so they were very interested and I promised to find the name.

Rex though is so proud of his machine and the Royal Marsden has had them for about 4 years.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I asked at the K&C and this is the machine that is being used a proper scanner https://www.sonosite.com/uk/products/sonosite-x-porte?fbclid=IwAR1LS6xZYu5Xtl-xj6caup5egIf2YpKkHRUeSXIlRLk4NmU5q7Gk02MuGYI

Oh how life is being made easier as all of us know what it is like to end up as a pin cushion and veins running out of blood etc.

Ray had the last of his treatment Tuesday. They knocked him out again and he slept right through his treatment. I sat next to a lovely couple. The lady has two different cancers. Ovarian and stomach. They were lovely and Im glad they were there as sleeping beauty was asleep all the time.

He woke up to come home and then came over very bad and wobbly so I said bed !!! and he slept until Wednesday morning.

He looked so much better so caught the train to London to be at my board meeting.

First we had arranged for Paul Cook who is a good friend as he is a mesowarrior and is so pleased we met up and I gave him a lot of help. I just dont realise how people see me so it was lovely to meet up and that he is doing so well after his Op.

 

 

 

 

 

So with Paul, his wife and Accountant a fund raising partnership has been born. Very exciting and we will keep reporting how we are going throughout the year. We said our goodbyes.

Then we welcomed in the Board Members.

Joanne and Maureen our new members who are Mesowarriors.

We will be attending their coffee morning in Hertfordshire Saturday week so i will have lots of photos from that event. It is the first Anniversary of Mesowarrior Bruce and this will help them get through the sad day. If you are interested please message or email me for details.

 

 

 

 

 

 

 

Happy Birthday to Harry Steinberg QC –we surprised him with a cake Mary arranged and we bought him a jumper with a shirt collar in. harry lives such a busy life he will be dressed in a minute now he he !!

Harry and 12KBW are going to have a seminar at The Barbican and raise donations for the Foundation again the year which is lovely.

 

 

 

 

 

Annual-Asbestos-2019-Programme-1

12KBW Annual Asbestos Seminar 2019

We are delighted to invite you to our Third Annual Asbestos Seminar. This year we focus on our soon to be published book: Asbestos Law & Litigation. 

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This seminar – chaired by Harry Steinberg QC – will feature talks from the authors of Asbestos Law & Litigation.

Talks will include an update on claiming for the cost of immunotherapy, a detailed consideration of knowledge of asbestos risks and a panel considering issues on breach of duty.

Click here for the full programme.

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This is a free event and places are likely to be booked up quickly – please follow the link below to reserve your place.

The seminar will start at 2.00pm, with registration from 1.30pm and drinks from 5.30pm.

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This event will be accredited with APIL CPD points.

DATE

Thursday 9th May 2019

TIME

13:30 – 17:30

VENUE

Barbican Centre, Silk St, London, EC27 8DS

https://www.12kbw.co.uk/events/12kbw-annual-asbestos-seminar-2019/

We carried on and discussed our 5 year plan I love the discussions as we worked through the Agenda. So we are all set up and we are growing at a faster rate than I could envisage.

We were two happy bunnies as we travelled home

 

 

 

 

 

 

 

There is a message here that if you have downloaded a application form –and we know 247 have downloaded the form-please send or email in soon as the last date is drawing near 31st March 2019.

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

 

 

 

A Diary of a Mesowarrior Living With #Mesothelioma #Asbestos –Mesothelioma UK Ladies Lunch for Ladys Day

 

 

 

 

 

 

 

 

 

Mesothelioma Uk celebrated Womens Day in Manchester it is the first time and I bet it isn’t the last. What a success !!!

Many Lawyers helped to make it a wonderful day for the patients and Ray and I were invited on the Field Fisher Table by lovely Bridget Collier.

First though we travelled up the day before as I wanted to be there early Friday morning to meet everyone and have a long chat.

I couldn’t believe that as we pulled into Manchester station from London and I was looking what door to use to go out to find the hotel I walked straight into Mary Mulhal,My Chair of the Foundation. How amazing was that. She is always there when i need her !! We had a laugh and and a hug and then I asked a policeman where our hotel was. Alway ask a British Bobby.

He pointed the way and it was out the back, down two flights of the escalator and across the road.

https://www.google.co.uk/maps/uv?hl=en&pb=!1s0x487bb1966158835b:0x37cd108581dac93b!2m22!2m2!1i80!2i80!3m1!2i20!16m16!1b1!2m2!1m1!1e1!2m2!1m1!1e3!2m2!1m1!1e5!2m2!1m1!1e4!2m2!1m1!1e6!3m1!7e115!4shttps://lh5.googleusercontent.com/p/AF1QipOX3gdgoDneFrNZfQZIbjDZbWlmlPgyWZFgLgwn%3Dw265-h200-k-no!5smacdonald+hotel+manchester+-+Google+Search&imagekey=!1e10!2sAF1QipOX3gdgoDneFrNZfQZIbjDZbWlmlPgyWZFgLgwn&sa=X&sqi=2&ved=2ahUKEwjenKOkxvXgAhUEHKYKHYCPAhMQoiowCnoECAYQBg

 

 

 

 

 

 

A lovely room and bathroom all for £114.00 a night . that was wonderful

After booking in and have a rest in our rooms as Mary had to been to see a client and had to work and catch up, we went down for a coffee.

It ended up with us having a Mavis Nye Foundation meeting as we have a Board meeting next week so it was good to put together points to be raised.

A five year plan has been sketched so we can talk it to the table. So exciting we are moving forward so fast now. Thanks to Hugh James.

I had had so many phone calls from Paul Chamberline and Lee of Wefitrpe Ltd as we travelled up from London as he had been to a meeting and had sold all the Sundstrom masks and was putting the money in The Charity Account. He had plans on selling the next lot that Sandstrom have kindly donated and are so pleased we are raising funds this way. Well I just had to thank Paul in some way that I suggested he became a Ambassador for the Charity. He has become my agent anyway and has me talking at so many training sessions and Conferences. He goes above and beyond his duties ha ha !!!

He was over the moon when I suggested it so we have an Ambassador. xx

So our team is getting stronger and stronger, as we have so many supporters its exciting as my Legacy will go on and on after my passing as the Meso is growing so I never know. Mags Portmans death has shook me to the core so I must get my affairs in order.

We had a lovely meal in the restaurant and then an early night

 

 

 

 

Woke up bright and early and met Mary for Breakfast and coffee then we had to pack the cases as we were vacating the room to travel back after the event.

 

 

 

 

 

 

 

 

 

 

People started arriving and it was wonderful to meet so many as they cuddled me and we all hugged. The love in the room was wonderful.

We then went into Lunch. Ladies that Lunch.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Two Mesowarrors I met came home and wrote :-

Caroline Jamieson is with Philippa Johnson.

I’ve met a few famous people in my life and I’ve never been star struck, I don’t really get it, musicians, actors they just do a job.Today I was in total awe of someone, a lady who has done so much for the fight against Mesothelioma whilst fighting the disease herself. Her fb pages were our lifeline whilst dad was ill, and still now they help and our experience will help others. She has her own foundation, she is on nearly every meso medical board, she is a true fighter along with her husband Ray.So lovely to meet you today Mavis Nye, you are amazing and we love you ❤

That is so lovely as you just dont realise what effect you have on people do you xx

But this young woman had me in tears as Liz Darlinson played her video. Her funeral was the day before in Leeds

https://www.youtube.com/watch?v=i_6SGJzh2x4

How cruel Mesothelioma took away a young woman who had given so much to medical history

 

 

 

 

 

 

 

Dr Mags Portman passed away on Wednesday, 6^th February, 2019. Each of us at Saving Lives is truly saddened by her passing: we looked up to Mags as an example of everything an engaged clinician and advocate can and should be. One of a kind, she will be completely irreplaceable.

Mags was in many ways the embodiment of what we aim for Saving Lives to be: intelligent and compassionate, accessible and exuberant, she had an unerring commitment to making the lives of her patients better. She made the lives of her friends better, too, merely through her company.

We are so much more than grateful for the years we spent working alongside Mags, and particularly proud that she chose to associate herself so closely with Saving Lives. We could not have asked for a patron more committed to the causes we shared – or a friend more likely to keep us smiling.

Thank you, Mags. We miss you.

***

Mags completed medical training (MBChB) in Glasgow, 1998. Initially, she trained as a GP and qualified in 2003. During GP training, she kept up with a love of Genitourinary Medicine (Sexual Health) through continued work for the Steve Retson Project, a specialist sexual health service for gay and bisexual men or men who have sex with men based at the Sandyford Initiative, Glasgow. This was her first encounter with a specialist service set up for, and by, gay men, her first experience of working with “the community” – and she loved it. Little did she know, however, that this would prove to be a cornerstone of her future work.

Mags worked briefly in Leeds as a GP 2003-4, but the calling was always back to a career in Sexual Health/HIV. She made a decision to leave General Practice in 2004, and despite incredulity from her GP colleagues, never regretted her decision. She worked as a Staff Grade at the Leeds GUM Clinic (Sunnybank Wing, Leeds General Infirmary) for nine months before deciding to go back and retrain in General Medicine. This would enable her to enter Speciality Training in Genitourinary Medicine. “The calling was strong!!” she often said.

During her time as a registrar, she helped put National HIV Testing Week on the map in Leeds: Leeds GUM’s working alongside Yorkshire MESMAC and Leeds Skyline continues to be an example of the great things that can be achieved when a sexual health clinic works alongside the community sector. Also working closely with Yorkshire MESMAC, she was instrumental in the set-up of Armley Men’s Sexual Health Clinic, Leeds’ first sexual health clinic in a sauna for men who have sex with men. She also appeared on the BBC3 documentary “Unsafe Sex and the City”. It was during this time that she began to develop a particular interest in HIV prevention and collaborative working with the community.

Mags gained her CCT in 2014 and worked as a Locum Consultant in East London, both at the Royal London and Homerton Hospitals. During her time at the Royal London, she worked on the PROUD study, and her life as a PrEP advocate began. At Homerton, she was responsible for the HIV Antenatal clinic – again, this work was very close to her heart.

In September 2015, Mags took up a substantive Consultant post at Mortimer Market Centre, Central & North West London NHS Foundation Trust, where she was lead for GUM. Frustrated by the lack of PrEP implementation in the NHS, and observing that community activists such as Greg Owen and Will Nutland were supporting people to access PrEP online, she gained agreement from her Trust, and support from clinic staff, to provide HIV and STI testing, plus renal monitoring, for those accessing PrEP in this way. She also inputted to, and pushed for the provision of, the national PrEP Guide, produced by iBase.

Mags sat on the BASHH/BHIVA PrEP guidelines-writing committee and she was Secretary of the BASHH Media Group. Right up to her passing, she continued to work closely with iwantprepnow.co.uk and PrEPster.info.

https://www.savinglivesuk.com/about-us/patrons/dr-mags-portman/

Liz gave a speech about Meso UK and the Launch of a

The event also mark the launch of the GEM study (Gendered Experiences of Mesothelioma) which will look at the specific experiences of women diagnosed with mesothelioma. It is believed that women have a different experience to men in terms of awareness of the disease, diagnosis, and access to treatment and legal processes. The study will explore the different experiences to identify the implications for health, social care and legal practices. Email us if you would like to know more about the study, or might be interested in taking part.

I followed Lorraine and Liz and screwed the words I was going to say as I realized it was all about my passion in life Research.

So i told were I was at and if it want for trials and research i wouldn’t be there. It is a very important subject.

I always come and sit down and say to ray was I alright and he always says yes brill.

I so love that man xx

For more information, please contact us.  

After the raffles and speeches we had to grab our cases and run for the train.It was a wet evening.

Arriving in London we partied company with Mary and got the tube to Victoria. Such a long ques so busy ekk!!

at Victoria our train was cancelled due to a suicide at Whitstable so we caught the train to Gillingham where the fast train rolled in and the line was now open to Whistable. So pleased to get the taxi to home and have a cup of coffee and talk over all that had happened.

 

 

 

 

 

 

 

 

A foot note from Ray he wrote on F/B Raymond Nye I attended this lunch. What an inspiring day. I have so much respect for all these women. There was so much love in the room, I felt quite humbled in such amazing company. We shouldn’t need a special day to celebrate women. For me they should be celebrated every day. God bless them all. It was an honour to be amongst them all.

 

 

A Diary Of a #Mesowarrior living with #Mesothelioma #Asbestos — Friday is Womens Day So a huge thank you to all my Women Friends

 

 

 

 

 

 

 

It is Womens Day on Friday and Ray and I are travelling to Manchester to celebrate with a group of women we so admire.

Mesothelioma UK Nurses do so much to help us Mesothelioma Warriors and have always been around for the whole of my 10 year journey with Mesothelioma.

I became an Advocate for MesoUk and have now built my own Charity up to help the cause. I wanted to have my own Grants for research and we have now achieved  that with the first ones being presented in May.

The next passion is for me to finance a Mesothelioma UK nurse in the name of the Foundation and our own Mesowarriors. These plans are going to be discussed at our next board meeting and more fund raising to carry this wish out.

I do admire Liz Darlinson for all her dedication I know how hard she works as we have been very close friends. She gets a Mummy hug when we meet up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Then Mary Mulhall from Hugh James Who has agreed to be the Chairperson of the foundation we now look forward to taking the MNFoundation to higher limits. We work together so well and I now know I leave a legacy in the hands of a great board headed by Mary.

So many nurses at the Royal Marsden

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

There have been so many women that I have met it gets hard to pick just one or two.

People like UKATA

 

 

 

 

I think just to celebrate I will just do a picture gallery and just say a huge Thank you to all the women in my life and hope they do a mens day as I know so many lovely men as well x

 

 

 

 

 

 

 

 

Dr Mags I miss you so much x

Yvonne and Jasper

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

UKATA Gill

Liz and Jill

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

https://www.hughjames.com/person/mary-mulhall/

https://www.mavisnyefoundation.com/ 

A diary of a Mesowarrior Living with #Mesothelioma #asbestos — A week that starts with my treatment and ends with Rays but we did get a visit to London in to see our New Offices

A quiet start to the week as I wanted Ray to rest I laid my new mats down that I had bought for the passage and kitchen and the new carpet for the lounge.

We did go to the Marsden for my treatment which went smoothly. A new doctor that is a shy man so the joking want there like my lovely Spanish Doctor. So it was a more serous face that I wore and so I was out and down to the restaurant quickly.

Drug was up later and soon in my veins and I was topped up.

I have found out the new drug that matches my DNA is called HYPER !! sounds right for my DNA!!

Matched with Prembro we have to see if it will kick Meso as its used for Myeloma. One more scan in April and we might find out. trouble is I will loose my hair. I have a wig which Im not happy with so I will have to sort another one or wear a turbine which I dont really like but no way will I go bald. Sorry I just wont. My hair has always meant a symbol of how I feel. If it is untidy or long I feel rough. I like a short cut and still use hairspray.

When you think of all the back combing I have done and hairspray used over the years to look good.

So that is a plan.

 

 

 

 

 

 

 

 

We visited London on Thursday to visit our new Head Office in Gresham Street.

We have had a revised board of trustees for the Mavis Nye Foundation who can now Welcome Officially our new Chairperson is Mary Mulhall of Hugh James.

We sat with Richard Green and have bought together new plans for the future. All very exciting. We now have 3 Mesowarriors on the board so I feel that it is all set up if things dont work out with my illness, The Foundation will carry on in the hands of people that care about Mesothelioma and the Mesowarriors.

 

 

 

 

 

 

 

It was raining well by the time we got home so that lovely sun we have seen for so long has gone –shame.

The car was covered in red rain as over night it rained heavy and the sand from the Sahara had blown our way.

Up early this morning Rays turn today.

 

 

 

 

 

 

 

 

 

He was soon plugged in and the drug going through his veins. I get bored. I bought the Sun –Yes I know not one to buy but I like their crossword as it is easy

But I could even get one. That,s the state of my mind. Numb!! can you blame it. ha ha !!

Ray only has one more though but we have had to change both our dates as Friday we go to Mesothelioma UK Ladies Lunch where I’m going to give a talk to bring everyone up to date.

 

 

 

 

 

 

 

 

 

 

 

It was early escape today has they had put the drug in faster as ray has really tolerated it well. Im so pleased he has been so positive I have trained him well and he feels like

he has a problem but cant comprehend he has Cancer. A sort of denial which is how I have been. You have to live along side Cancer and fight it.

So now we are at the weekend again and Mar 1st how quickly the months are going.

I have to mention the Episode of Warren BBC1.

This is only available for 25days so please watch and send me your view. From 5.49

https://www.bbc.co.uk/iplayer/episode/m0002v37/warren-series-1-1-the-pond?fbclid=IwAR1qjMeAX0dB_CUO26UwyLCU_vSRHrxknDZKB8iR7qn9HafVVnuDWKR1z4U

I have made a complaint to the BBC —
I kept getting complaints about Warren a Mesowarrior said — Just wondering if you saw the new sit com, Warren on BBC 1, Monday? Couldnt believe how irresponsible the BBC were when they showed Martin Clunes character Warren going out in his car with his stepson to fly tip some mud and asbestos from the roof! When the son asked wasn’t it dangerous to be in the car with it Warren said well you’ve been breathing it in from the roof for the last 3 years. When asked again if it was dangerous, he replied yes, it is, that’s why I’m chucking it away. Can you believe that, Mavis! So irresponsible.

I complained and the answer is not satisfactory !!!

The answer to my complaint, so they really do not see the point that they shouldnt have made light of it in the first place Making light of Asbestos that they had lived with it for years so its not dangerous was wrong !!!! answer received :-

Dear Mrs Nye BCAh

Thank you for contacting us about this episode of Warren. We are sorry to hear that you feel the fly-tipping element of the story was inappropriate.

Warren was clearly in the wrong and we see more than one character pointing this out to him. At the end of the programme we see the police taking steps to question him about the incident. With this in mind, we don’t believe that viewers will be minded to imitate any of the behaviour they have seen in the show.

We have however shared your views with the producers of the programme for their information.

We hope this allays your concerns, thanks once again for contacting us.

Kind Regards

BBC Complaints Team

hmmm!!!!

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