A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Scan Results not good but not bad either !!


This week is calmer after all the filming we did last week.














Not just the ITV news but Ray and I made a film for training purposes all to do with ships. That will take a long time to be finished so I will share when they have been published.









Then Saturday and Sunday I spent all day on twitter and live stream as it was ADAO’s Conference which I will Blog another day as today has been an important day for us.

I  went to the Royal Marsden to get my results of my scan form last week.

We got there early and instead of going in the usual room they put me in the day ward and gave me a bed.

This isnt unusual if there isn’t a chair because they are full up so that was ok even if my mind was running overtime. we do get worked up with scanexity its just something you can help. You know your whole life can change in one scan result.

My bloods were taken and then the doctor came round to see me.

The scan result is my Mesothelioma is growing but its still to small to take another bi-op. Their decision is to wait and let it grow larger and then have another bi-op.

The drug had worked 14% shrinkage from the start of the re-challenge so its grown 4% over 3 scans. So thats in 24 weeks it has only grown 4%. The Meso is very small that it would be impossible to get a bi-op yet.

That is great news, no really as without the trial drug Pembro it would be growing rapidly so the drug has really slowed things back.

He asked about my ankles swelling, sitting there in a chair they were very swollen I said it was from Chemo days but he said Its because I had my veins striped years ago when I had Vicarious Veins. He said that I needed my veins to drain the fluid and didn’t I get told I would have a problem when they did the op.

He is the first one that has been able to explain why I have a problem.

So I will stay on Furosemide  but I said I couldn’t take them today as you never know when you will get caught in a traffic jam and I would be in trouble. he laughed and agreed.

The next thing I know my nurse came in with a tape measure and measured me up for some lovely green socks called Fitlegs

It was great that we had others to talk to as the day was soooo long.

We arrive for 8am so that we are there for 8.30am.

There was a training today so we waited and bloods were taken by 10am.

We didnt get the drug up to the ward until 4.20pm

Then my canulla had been in so long it had bent so another one had to be fitted. Rex is the only one that can deal with my veins and valves so he popped in to do it. We got out of there 5..20pm which meant we arrived home 7.10pm thats a long day when you have got up at 5am.

But I cant moan as this is my life when on a trial and they have saved my life for 5 years now.



A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos Awareness Week and Asbestos still killing 5,000 Britons per year

After a lovely Mothers day with family visiting and an Indian meal to wade through
























We had to get up today and travel to the Royal Marsden early for my Scan day.

We had a phone call from ITV News to ask if they could interview me as figures came out today

Asbestos is killing 5,000 people a year, two decades on from the toxic material being banned, a new report has shown.

The Institution of Occupational Safety and Health (IOSH) said people were still being exposed to asbestos, 20 years after it was outlawed in Britain.

More than 130 companies or individuals have been ordered to stop work activities over the past year because of non-compliance with asbestos regulations, said an IOSH report.

Asbestos is present in at least 500,000 buildings built before 1999, said the report.

IOSH chief executive Bev Messinger, said: “It is unacceptable that 20 years on from asbestos being banned in Britain, organisations are still potentially putting at risk the lives of employees, their families and other members of the public.

“Thousands die in Britain every year from cancers like mesothelioma, while many more are diagnosed with it.

“All this is preventable through good occupational safety and health. It is time for organisations to wake up and realise how dangerous asbestos is. There are no excuses.”

Asbestos is killing 5,000 people a year, two decades on from the toxic material being banned, a new report has shown.

The Institution of Occupational Safety and Health (IOSH) said people were still being exposed to asbestos, 20 years after it was outlawed in Britain.

More than 130 companies or individuals have been ordered to stop work activities over the past year because of non-compliance with asbestos regulations, said an IOSH report.

Asbestos is present in at least 500,000 buildings built before 1999, said the report.

IOSH chief executive Bev Messinger, said: “It is unacceptable that 20 years on from asbestos being banned in Britain, organisations are still potentially putting at risk the lives of employees, their families and other members of the public.

“Thousands die in Britain every year from cancers like mesothelioma, while many more are diagnosed with it.

“All this is preventable through good occupational safety and health. It is time for organisations to wake up and realise how dangerous asbestos is. There are no excuses.”












So that is why I was sitting in the sunshine at the Marsden talking about my life and asbestos.

Ray and i went in and I signed in to have the canula fitted and then went to the scanning room ans the Marsden allowed filming of me going into the room and settling on the scanning table.

The room was crowded ha ha !!

The scan was soon completed and we were free to go home where we just got in in time to see the News at 1pm and there I was. all 5 mins after an hour of filming.

It doesnt matter just so long as the message gets across that Asbestos is still in our life and we must still protect ourselves.

This week starts the Asbestos Awareness Week I love this GIF

Global Asbestos Awareness Week April 1 – 7 — Day ONE: World Health Organization and Elimination of Asbestos-Related Disease Worldwide Each year, the Asbestos Disease Awareness Organization (ADAO) dedicates April 1-7 to increasing awareness of asbestos and preventing exposure by bringing together experts and victims from around the world to share, learn, and take action. 










I have sent a tribute from the uk and I will be opening the conference with a video I have already sent to ADAO


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.


  • 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.



built environment

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.







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

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.

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.

This event will be accredited with APIL CPD points.


Thursday 9th May 2019


13:30 – 17:30


Barbican Centre, Silk St, London, EC27 8DS


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.





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.








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.

No photo description available.





















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








Dr Mags Portman passed away on Wednesday, 6th 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.


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

Image may contain: 1 person, indoor

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



























Liz and Jill