A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos #Ketruda Results at the World Lung Conference in Vienna this week.

As one of the top mesothelioma specialists in the United States, Dr. Kindler has been a leader in developing treatment for mesothelioma patients.

About Dr. Kindler

Hedy Lee Kindler, M.D., is a cancer expert with years of experience studying and treating mesothelioma. She sees more than 100 mesothelioma cases a year and continues to bring on new patients with the hopes of helping as many people as possible. Many of her patients come from all over the world to seek her experience and guidance.

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    Medical Degree and Residency

    MD State University of New York Buffalo, 1989. Dr. Kindler completed residency at UCLA Medical Center Internal Medicine from 1989-1991.

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    Assistant Professor of Medicine University of Chicago Medical Center

Dr. Kindler’s father passed away from mesothelioma in 2001, which sparked an even stronger interest in finding ways to battle the disease. Much of her focus is on new treatments and drugs like Alimta and gemcitabine.

A champion for mesothelioma recovery, Dr. Kindler has traveled extensively, proving theories and treatments for these conditions to medical experts worldwide. She is frequently invited to speak on the latest findings and treatments available in asbestos-related diseases.

Although her emphasis is on mesothelioma recovery and treatment, Dr. Kindler also specializes in the medical treatment of pancreatic cancer and gastrointestinal stromal tumors.

Dr. Kindler’s Accomplishments

Kindler is a member of the American Association for Cancer Research, the American Society of Clinical Oncology, the International Association for the Study of Lung Cancer, the International Mesothelioma Interest Group, and the Mesothelioma Applied Research Foundation. Additionally, Dr. Kindler is a two-term (2006-2010) past president of the International Mesothelioma Interest Group and is an associate editor of the medical journal, Lung Cancer.

Dr. Kindler’s Clinical Research

As Dr. Kindler has a personal interest in the treatment of mesothelioma, much of her research is focused on novel treatments. This research holds potential to not only improve the survival times of patients but also lead to more personalized treatment options.

“The Role of Gemcitabine in the Treatment of Mesothelioma”

Dr. Kindler published this article back in 2002 to discuss the efficacy of the chemotherapy drug, gemcitabine, as a single agent or in combination with a platinum-based chemotherapy drug. What makes the article interesting is that Dr. Kindler suggests other roles the drug may play. The most notable role she suggests in the study is gemcitabine in combination “with other cytotoxic chemotherapy agents such as pemetrexed or vinorelbine, or adding novel cytostatic agents…such as bevacizumab.”

Semin Oncol. 2002 Feb;29(1):70-6.

The role of gemcitabine in the treatment of malignant mesothelioma.

Author information


Gemcitabine is broadly active in a variety of solid tumors, including malignant mesothelioma. In vitro, gemcitabine demonstrates activity against mesothelioma cell lines. The role of single-agent gemcitabine in patients with mesothelioma is unclear, since three phase II trials treated a total of 60 patients and achieved response rates of 0%, 7%, and 31%. The combination of gemcitabine and cisplatin is synergistic against mesothelioma cell lines in vitro. Gemcitabine in combination with cisplatin or carboplatin shows definite activity in phase II trials. The trial by Byrne and colleagues that demonstrated a response rate of 48% established the combination of gemcitabine plus cisplatin as a standard therapy for this disease in the United States. Subsequent multicenter trials have achieved lower response rates of 26% and 16% for this combination. Gemcitabine plus carboplatin also has activity. Future roles for gemcitabine in malignant mesothelioma patients include incorporating a gemcitabine/platinum regimen for neoadjuvant or adjuvant therapy, combining it with other cytotoxic chemotherapy agents such as pemetrexed or vinorelbine, or adding novel cytostatic agents such as the vascular endothelial growth factor (VEGF) inhibitor, bevacizumab, to the gemcitabine and platinating agent combination.

“Moving Beyond Chemotherapy”

Following her article in 2002, Dr. Kindler published an article 2 years later titled, “Moving beyond chemotherapy: novel cytostatic agents for malignant mesothelioma.” The study evaluated the efficacy of novel drugs such as bevacizumab, which work by interfering with the signaling pathways that affect mesothelioma cell growth. Years later, this research has shown to have a significant survival benefit to mesothelioma patients.


It is now known that vascular endothelial growth factor (VEGF) and platelet derived growth factor (PDGF) are autocrine growth factors in malignant mesothelioma; epidermal growth factor receptor (EGFR) is also highly overexpressed. Cytotoxic drugs that target these growth factors offer fresh potential for the treatment of mesothelioma. Clinical trials have recently been initiated to evaluate the anti-tumour activity of the VEGF inhibitors SU5416, bevacizumab and thalidomide. ZD1839 (Iressa, AstraZeneca), an inhibitor of EGFR tyrosine kinase, is also being evaluated. Two clinical trials are planned to evaluate the two PDGF inhibitors Gleevec (Imatinib mesylate, STI-571, Novartis Pharmaceuticals) and PTK787 (Novartis Pharmaceuticals).

All the links to the above news

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos In Schools Made Headlines Today


Social Media and Television has been buzzing with Asbestos in School as Lucie Stephens has fought so hard in her Mums name to have Asbestos out of schools.


The daughter of a teacher who died after being exposed to asbestos at school, is warning parents of the risk to their children.

Lucie Stephens’ mum Sue died of mesothelioma, a type of cancer caused by exposure to the deadly material, and now she is calling on the government to proactively remove it from all schools.

Ms Stephens wants parents to understand the risk of asbestos exposure their children face at school.


Asbestos claims hit £10m over English schools

These program’s will disappear but we are so pleased with the awareness they have raised and have everyone tweeting


Fielf Fisher have given a good Interveiw here Andrew Morgan is speaking here https://www.youtube.com/watch?v=fp0z6XUB9Ck&feature=youtu.be&list=PLLZ0EJTAmkfkDiwBLd8tuwPJMWBbVVVSh

Then at Dinner time it was stated that the Department of Education will remove Asbestos from Our schools by 2028 and have a yearly budget to make this happen.

Dr Jeremy Steel also gave a good interview in this to back up Asbestos should be out of Schools x

A very busy day and my phone and computer are running hot.

We did manage to get out with Louis and the park was muddy so hence we had it to ourselves


A lovely view with the sheep busy eating they didn’t even notice us


A Diary Of A Mesowarrior Living With #Mesothlioma #asbestos -Christmas Lighting Time. Rays Had His MRI At Last.


Blackpool Christmas lights

Or Life is winding down now for Christmas.

Saturday  we had to go to the doctors for our flu jab. It’s the earliest we could fit it in due to so many trips to London Meetings. November has been so busy.

Sunday was rays MRI at Kent and Canterbury. Yes on a Sunday. The poor machines work from 8am to 8pm everyday.

I took Louis with us so that I could walk him and we had a great stroll around the roads. I then went in to see how Ray was getting on

He was still sitting in the chair in the waiting room but to be fair we were early so right on appointment time he went in.

A man who was already in the other scan machine came out and grabbed a cup of water. He said he had panicked in there being shut in. I began to worry about Ray then. Out he came smiling away. He hadn’t liked it but he was ok.

In his own words of his blog —

Funny old  day. just b4 lunch we set off to the hospital. It was for my MRI Scan. Good news almost bang on time I was called in Come in my lovely the nurse said. Have you had an MRI b4. No  my first one I said .have  a shelf to refit

Pop on the bench for me .Ha I see you  have a Zip in your Trousers. ERR! was that meant to be funny. No it’s because its metal. Slip them down for me will you. Lay flat and  try to keep still. She gave me a buzzer if I needed help. It will be noisy I was warned.

Wow not   frightened but so claustrophobic. It’s only a couple of inches from you face and into the tunnel you go. I kept my eyes shut most of the time and kept  thinking of cloudy skies and bright sunshine. It was all over in 30 minutes.

Back home an early lunch and I confess I nodded for a bit, but then I had to get on with my decorating. All  that’s left is refit a shelf and hang some pictures. It’s good because my back is playing up with all the leaning and twisting.


Now he knows what scexiety is about xx Bless !!

I came home and I have been itching to put the Lights up. I havent done this on previous Christmas’s as it was always going to be my last one. I have more confidence this year and I’m really looking forward  to Christmas this year.

So I played around and fixed the lights into the front room window dsc00288

The photo doesn’t do the scene justice I’m not putting anymore in there less is more. The other half of the room is all lit up that isn’t in the photo.

As I sat back and bathed in the glow of the light as tears run down my cheeks I was full of so many emotions. My survival and seeing a Christmas I had never dreamt I would see, the lovely friends that havent made it to be here with me and those Mesowarriors that are suffering so much. it is a whole mixed bag of thoughts. I didn’t know Ray was also writing a blog saying —

Mavis is busy putting up xmas  lights. Xmas is almost here now.

I am grateful for the past 7 Christmases we have had since  diagnosis. We were not supposed to have had anymore.. I hope we have a few more left. I raise a glass to that to more Christmas’s

So we are settling down normal life. I have a Cancer Meeting in the diary and then the next day a personal  INVITATION TO COMMEMORATIVE BOOK LAUNCH 

You are cordially invited to the launch of:

A Statue For Mary: The Seacole Legacy

By Lord Soley and others

Wednesday 7th December 5.30 pm – 7.30 pm

Florence Nightingale Museum

St Thomas’ Hospital

2 Lambeth Palace Road

London SE1 7EW

Please RSVP to Steve Marsh, Secretary, Mary Seacole Trust, at: contact@maryseacoletrust.org.uk 

Sculptor Martin Jennings’ stunning work is the first statue of a named black woman in the UK, unveiled on June 30th 2016. This commemorative book describes the 12-year campaign to make it happen, in the words of some of the key players whose fundraising work ensures that Mary’s statue is truly owned by the community. The book outlines the sculptor’s vision for London’s latest landmark as well as the process of turning that vision into a beautiful, lasting tribute to Mary. It reveals how Mary’s work will live on through the new Mary Seacole Trust.

Signed copies of the book will be available for sale at the launch. It will also be on sale at the Florence Nightingale Museum and the Black Cultural Archives in Brixton, as well as other museums and online outlets.

Mary’s statue is just around the corner from the Florence Nightingale Museum and can therefore be viewed after the book launch illuminated so that, in the words of the sculptor Martin Jennings, the circle of the bronze disc behind her echoes the circle of the clock on Big Ben.


We had a great time visiting the statue earlier this year.

We are finishing the bedroom today so i will show you tomorrow as it is very unusual for us.


A Diary Of A Mesowarrior Living With #Mesothelioma -#asbestos Awareness Week in Australia -Trevor Gillmeister -Launch Of A New Web Site for Bernie Banton Foundation – Company House No Plans to Reduce to 6 Years

Oh dear I can’t sleep so I have a coffee and its 2.30. Turn on my computer to see  how the Australian Asbestos Week is going and came across the name Trevor Gillmeister.

Me being me I googled his name and found Trevor Gillmeister is an Australian former rugby league player who is currently employed as a Rugby League analyst at Channel 7 Brisbane. During his playing days Gillmeister played for the Eastern Suburbs Roosters, Brisbane Broncos, Penrith Panthers and the South Queensland Crushers as well as representing Queensland and Australia.

But He is Queensland’s Asbestos Ambassador and all because he lost his dear father to mesothelioma.

He has made a video of a letter he wrote to his dad.

Dear Dad,

It’s been a while mate, but I think about you all the time.

The families are well, we all still get together for the family barbeques with Mum. I’m doing a fair bit of coaching now – the year has been a bit up and down as usual.

Do you remember my first game of footy with the Gladstone West Panthers under 9s? I always wanted to play footy, that was my main goal. I must have done alright though to be asked by the great Artie Beetson to play for the Roosters. Even though you tried to talk me out of it, you always supported me. Sydney is such a big city, I remember asking how to get to Bondi and you just told me to get over the bridge and hook a left. You were pretty spot on, I made it.

You were always such a hard worker, I think that’s why you were so well recognised in the industry. It’s thanks to you that I got my foot in the door and started my apprenticeship.

I can still remember the day you got diagnosed. It wasn’t fair. You’d just retired and gotten back from the cruise with mum.

I’d never heard of mesothelioma before. I remember saying to you, mate, you’re a strong bloke, you can beat this, there might even be a cure, but you just gave me a blank look I think you knew, they gave you six months, but you didn’t give up, you proved them wrong and we got you to almost a year.

You were a tough old bugger and I’ve always tried to be like you. I’m continuing your fight.

I’m getting out there as an asbestos awareness ambassador. I want people to be more proactive and careful around the stuff. I’m starting to notice a change too. People don’t just recognise me for my football career anymore, they see the work I’m doing and how important it is for me to have people talking about asbestos.

As tough as you think you are, asbestos is always going to be tougher.

I’m not going to stop…. I’m doing this for you.

We all miss you Dad.
Love you mate,

Gilly was an assistant coach at the Gold Coast Titans from 2006 to 2014. He walked over 1400kms from Townsville to Brisbane in October 2014 to ‘Take an Axe to Asbestos’ raising public awareness about asbestos, as well as much-needed funds for families affected by asbestos related diseases.

What a lovely man I will follow more of his work


Rod Smith was up late it was 5.30am when he messaged me ad he had been up all night finalising a new website for the Bernie Banton Foundation.

He was telling how proud he was that the 1 day conference that he had run was a great success and that it will be a yearly event from now on. I told him I surprised Karen read out my message to cheer them on and hoped all went well. Karen read it out along side one from Bob Carr (ex NSW Premier and Australian foreign affairs minister.So amazing to be linked in with such a great man.

Rod said –Mavis, it went exceptionally well, I mean exceptionally well. It would seem for once I got something right. Prof Bruce gave an amazing relatable talk on immunotherapy. You will love it.

There is a video being loaded in the next few days so I will blog it as it comes with in the Australian Awareness Week.

Here is the new web site I have found it fascinating. So full of information that even we win the UK will find so helpful. Very impressed.


Industrial Relations Minister Grace launched National Asbestos Awareness Week

With the words :-

“An estimated one-in-three homes contain asbestos in Australia, so it’s vital that tradies and DIYers alike understand how to work with the old building material safely,” said Ms. Grace.

“Raising awareness of asbestos safety is aimed squarely at keeping Queenslanders free from the terrible diseases this material can cause.

“Deaths from asbestos-related diseases remain a sad reality, as it can take many years for the symptoms to emerge and in many cases, people aren’t even aware that they’ve been working with asbestos materials.”

It is estimated that more than 25,000 Australians will die from asbestos-related diseases in the next 40 years.

“Although it’s safe if in good condition and left alone, asbestos can be very dangerous once you start drilling into it, or breaking it up,” said Ms. Grace.

“These are just the kind of jobs that electricians, renovators, home handymen or builders might do.”

Asbestos Safety Advocates Julie and Don Sager also joined the occasion. The couple lost their 25-year-old son Adam to mesothelioma after being exposed to asbestos during a home renovation.

Ms. Grace also praised Queensland’s Asbestos Ambassador, Trevor Gillmeister for spreading the asbestos safety message.

“Gilly works hard all year-round to get asbestos safety messages to people in communities across the state,” she said.

“For him, raising awareness is a personal commitment – a few years ago he lost his father to an asbestos-related disease, which he contracted through his work as a boilermaker.”

This month, Workplace Health and Safety Queensland met local councils and hardware stores to put on workshops and safety demonstrations across the state for tradies and DIY enthusiasts.

More information about working safely with asbestos is available on www.deir.qld.gov.au/asbestos or by calling 13 QGOV (13 7468).



I have also had the great news that the day we went to the Lords with The question was raised about Company House and the disposing of Company Records that had been proposed.

Ian Lavery MP said  they didn’t understand just what that would mean to people and information so yes he had noted this and will action as the Police have also made it known they use the records as well when investigating Fraud etc.

Well true to his word We won here it is in black and white Thank you Asbestos Victims Support Groups Forum UK, the British Lung Foundation and other relevant bodies We asked and we got – The Government has no current plans to bring forward proposals to reduce the period of time that Companies House retains records of dissolved companies. http://www.parliament.uk/…/written…/Lords/2016-10-31/HL2863/

The Government has no current plans to bring forward proposals to reduce the period of time that Companies House retains records of dissolved companies.

We will continue to keep the retention period under review. Any future proposal to change the retention period would be subject to public consultation.————-

The records are saved and will carry-on being used when Mesowarriors need to find Companies to sue for the misery Asbestos has caused.

Harminder Baines Of Leigh Day has written a great report https://www.leighday.co.uk/News/News-2016/November-2016/Lawyer-for-asbestos-victims-welcomes-Government-U

24 November 2016

Leading asbestos lawyer Harminder Bains has welcomed the announcement by the Government to scrap plans to dispose of the records of companies which are no longer in existence.

The Guardian reported in August this year that Companies House was planning to destroy the records of companies that had been dissolved for longer than six years; this would have overturned their current policy of retaining records for at least 20 years.

Responding to Parliamentary questions[1], Margot James MP, Parliamentary Under-Secretary (Department for Business, Energy and Industrial Strategy), confirmed that not only would there be no reduction in the length of time Companies House retained these records but that there would now be no destruction of any records currently held on dissolved companies until and unless there is an agreed change of policy.

She also confirmed there would be no change in this policy without a full public consultation[2].

Harminder Bains from the law firm Leigh Day had planned to take legal action against the Government, on behalf of the Asbestos Victims Support Groups’ Forum UK, had the proposal to dispose of the records taken place.

She said: “It is essential that victims of asbestos exposure are able to access historic records so that they, and their lawyers, can trace companies, former employers, and the insurance company responsible for their liabilities.

“We are pleased that the Government has taken this step so that we, on behalf of our clients, will no longer have to challenge these proposals in the High Court as these proposals would have seen thousands of victims of asbestos exposure denied justice.

“We are especially pleased that the Minister has confirmed that there would now be no destruction of any records currently held on dissolved companies. This is important to our clients as asbestos diseases can take decades to develop[3], sometimes as long as 60 years following exposure.”

Graham Dring, Chair of the Asbestos Victims Support Groups’ Forum UK said:

“This decision is good news for victims of mesothelioma and other long-tail industrial diseases who already face an uphill struggle securing justice in the courts. If these proposals had gone ahead it would have denied access to justice to many asbestos victims unable to pursue a negligent employer or their insurer.

“It is also reassuring to hear the Minister confirm that no records will now be destroyed as even the 20 year retention period is inadequate in protecting the interests of terminally ill asbestos victims who may have been exposed to asbestos 40 or 50 years before.

“There is no way of predicting which records may be needed in the future. Storage should not be an issue with the technology available to us today and we expect Companies House to maintain its commitment to those suffering from mesothelioma now and the thousands more predicted in the future by retaining records of all dissolved companies.”


[1] Martin Docherty-Hughes MP, West Dunbartonshire, 14 November 2016
[2] Ministerial reply to Martin Docherty-Hughes MP, 17 November 2016
[3] Average latency period for mesothelioma is 34 years.

The legal team from Leigh Day was led by Harminder Bains instructing Jeremy Hyam QC from One Crown Office Row and Kate Beattie from Doughty Street

A Diary Of A Messowarrior Living With #Mesothelioma. Australia #Asbestos Awareness Week, Bernie Banton Foundation and Senitor Lisa Singh Start The Ball Rolling


Woke up today to a lovely message from my friend Jonathon Simnett —

Today I had the privilege of attending the Bernie Banton Foundation’s special day. What a privilege it truly was. Your message of support of the event was received with special appreciation and thanks. My best wishes to you and Ray. Regards Jonathan

This was pleasing news that Rod Smith had not only received my Message but had read it out and I had played a part.

My Message said

The Monday of Asbestos Awareness Week is BERNIE BANTON DAY. This year the foundation is holding a Symposium on Malignant Mesothelioma [asbestos cancer], and the presentation of the inaugural Bernie Banton Foundation Awards at the Parliamentary Theatrette, NSW Parliament House, Sydney.

I would love to have taken part but I’m in Pommy Land so I would like to send my best wishes for a successful day.
I have suffered with Mesothelioma for 7 years now and in all that time Ray and I have had the friendship of Rod and Karen.
We have helped each other to get through the Pathways of this disease.
It isn’t easy and I know just how hard it is for you to come to terms with the diagnosis and the fight to find treatment.
We cry for everyone that looses the battle and hug those that are surviving
Hopefully coming together and talking with each other and sharing all that is coming in the future we will find the way to the right Treatments and maybe one day the cure.
So have a great day and a great Symposium.
I send my love and hope for the future and Merry Christmas to you all and your families.
Love Mavis a Mesothelioma Warrior.
So it all sounds it was a great success and I hope that spurs Bernie Banton Foundation on to hold this event every year as it raises so much awareness and you know I love doing that.
A sad day as well, as Lou fights hard for her life after 14 years of Mesothelioma Peritoneal.
My love goes to her, Keith and the family as she fights on.
I hate the photos of her with Oxygen, as to me these last days should be private but others don’t agree with me.
I know it is the whole story of just how nasty Asbestos is and causes so much damage but as a sufferer and a friend it hurts me to have to see her like this but also it reminds me  just what is ahead as I fight Mesothelioma.
I’m  only human and Im scared.
It reminds me what would have been if I hadn’t taken the chance and agreed to a trial.
I would have been dead 2 years ago.

So many people are behind her in the fight to get the Drug available to many in Australia, they will keep fighting for her,  so it will happen its her Legacy, as it is mine, Keytruda has played a huge part in our Journey, all praise to Merck (MSD) and the wonderful Scientist that discovered Immunotherapy

I sent Lou the message — We have to keep fighting Lou Keytruda has bought us so much extra time to be with our loved ones and wonderful friends. We must use our voice to the end to keep raising awareness of Mesothlioma and Asbestos and also for these drugs that have turned our disease around and will replace Chemo in time.

Thankyou for being my friend in this journey.

So we work with Australia and their Asbestos awareness week I wish this was a global Week so it is up to us to make it so

#asbestos awarenessweek time to shed light on illegal asbestos imports into Oz


A Diary Of A Mesowarrior Living With #Mesothelioma- A Stormy Night #Asbestos in School’s, Bernie Banton Foundation Symposium Tomorrow For Asbestos Awareness in Australia


Its been a very stormy night with very high winds and rain lashing down.

they have named this storm Angus.

The Met Office said gusts of 84mph were recorded at Guernsey Airport, with 53mm of rain being logged in Exeter, Devon, including 10mm in one hour.Forecasters have warned of possible power cuts, damaged buildings and travel disruption.

Among the areas already known to be affected by flash flooding are Plympton, near Plymouth and the M5 near Birmingham.

So many people have had a sleepless night and I woke up early as well and then saw neighbours lights on.

Life has been quiet this week and back to normal so we have decided to decorate the bedroom. I hate having to choose colours as I just can’t make my mind up.

Off to B&Q today to find the right paint to match our ideas.

Over the last 2 days I have been really having a clear out of the bedroom as after 7 years of being so involved in my illness things have piled up and so Im hitting the wardrobes again. Lucky enough we have a clothes bank at Tescos so I was able to take my pile straight away and get rid or I know I will start saying “well I could keep this and keep that” and everything will get hung up again.

Our Fight against Asbestos in Schools has really taken off with reports coming out all over the country and the schools being listed that have asbestos in them.

We don’t really want to cause a panic but just to get the Government to move on this and start a program of removing it to make the Schools safer for young lungs. It’s not an old mans disease as we have patients from 18 upwards.

So far, 12 Kent County Council employees have a brought cases against the council and has admitted liability on eight of these claims.

A spokesman said In most cases the asbestos in the schools was insulation on parts of buildings that are out of sight and not accessible, such as boiler rooms, pipes, chimneys and roofs. But we know from the Brent Report it is in assessable places and children kick walls and pin drawings we just should not take the risk.
Read more at http://www.kentlive.news/nearly-60-schools-in-dover-and-shepway-have-asbestos/story-29904234-detail/story.html#quKMRhfbxXqSF8ZZ.99

They find the money for Buck House and House of commons they really should sort the schools.

The facts about asbestos in schools
• 86% of UK schools have asbestos in them, putting over 7 million pupils at risk. A survey in 2015 found that 44% of teachers have not been told if their school contains asbestos. This lack of awareness puts them and their pupils at risk of exposure.
• More than 224 school teachers in England have died of mesothelioma between 2003 and 2012. There is a similar pattern for school support and maintenance staff. Last year 22 teachers died, meaning the UK has the highest death rate in the world. Experts predict that the number of school related deaths in the UK will continue to rise.
• Children are particularly vulnerable to developing mesothelioma. A five-year old child that is exposed is five times more likely to contract mesothelioma than someone exposed to asbestos in their 30s. It is reported that between 200 and 300 people die each year from exposure to asbestos as school children.

Bernie Banton Foundation in Australia is having their first Symposium on Mesothelioma and Asbestos Related Support. It is being held at Parliament House in Sydney, on Monday the 21st November. so I wish Rod Smith and Karen Banton success with this. I wish I could be there but they know I support them from afar.

Karen tells her story in this video.


A Mesowarrior Diary Living With #Mesothelioma #asbestos -The MesoUK Advisory Board Meeting I Attended

Once again we travelled up to London this time to a Mesothelioma UK Advisory Board which I’m a member of alongside the Meso UK Nurses and my Mesowarrior friends.Also I met a lady I have made friends with on facebook from Tayside Support Group. It is great to meet in person even if she did have to fly down from Scotland.

HASAG were present as well and Jeremy Steel it was great to meet up again.

So we were back in the Field Fisher Offices, a place I love as the view is so great.riv2

I would never tire of this if I worked here and I find all the people working there feel the same.

Peter Williams Of Field Fisher meet me to shake my hand and is so happy to see how much I have improved.

It tickles me just how many people know me and my story. I can’t help to be so proud to be able to talk about all the care I have had. I’m so proud of the NHS and MSD.

So we ran through the minutes of the last meeting and then discussed so many things in more detail They are wanting 28 nurses and so the funding has to be stepped up.

It was bought up about legacy’s

I said have just a little write up as a permanent spot in the News Letter but they are worried about how other Patients would feel about it. I did say don’t worry about upsetting us as we are positive people and we have to discuss so many things when we have been diagnosed. I have been though so many things in my 7 years I seem to be able to discuss anything now.

I don’t think it is wrong as Macmillian do it.


Gifts in wills

Gifts in wills are an amazing way of continuing your support long into the future.

In the future, doctors and nurses are going to get better at diagnosing cancer earlier, and treating it. But the fact is almost half of us will get cancer at some point, and have to go through some tough times before we hopefully get better. And that includes the people we love.

So I don’t see why mesothelioma Uk cant do this as well. We all know how hard it is to get funding.

Most Mesowarriors ask for no flowers at their funeral and have the Donations to MesoUK.

In fact it was discussed to link up more with Macmillan as they have a great deal of helpful information so why rewrite everything. I will Blog more using the links and put more links on my Groups in Facebook.

On The MesotheliomaUK Web Site they do give info on the subject


What is a Legacy?

A legacy is ‘a gift to someone in a Will’

In order to bequeath a legacy to any charity like ‘Mesothelioma UK Charitable Trust’, you must make sure it is included in your will.

The three main types of legacy that you could leave to a charity are:

Residuary Legacy:

Once all other gifts have been made i.e to your family, friends or others from your estate, a residuary legacy is a gift of the remainder or part of your estate,  it is a fraction of your estate rather than a cash sum and will retain the value over time.

Pecuniary Legacy:

Is a monetary gift of a specified amount.

Specific Legacy:

Is a gift of personal possessions, this may be land, buildings, furniture, antiques or jewellery.

How do I Leave a Legacy?

To include Mesothelioma UK Charitable Trust in your will is an easy, straight forward and cost effective way to support us. You would need to add a short statement (clause) to your will and we would always advise you to use your solicitor to assist you.

“I Don’t Have Much to Leave”

A common misconception is that legacies can only be large amounts of money and this is just not the case. You could leave as little as £1.00 in your will. Any gift or legacy no matter how large or small, is important to the charities you support and without your donations, we cannot survive.

What is a Pledge?

Gifts that are left in wills are really important to charities. However, even if you haven’t made a will, making a pledge to leave a gift in your will in the future is an ideal way that really helps your chosen charity find out about your future intentions which will then enable them to plan for the future. Pledges are not legally binding so by filling out a form you will not be committing yourself! You are simply allowing your chosen charity to confidently estimate future support for their causes.

What About Tax?

Charities are generally exempt from inheritance tax so gifts to Mesothelioma UK Charitable Trust are tax efficient. Many people use gifts to charities to stay within the inheritance tax threshold, thereby avoiding the tax altogether.

What is Inheritance Tax?

We advise you to seek professional advice in respect of Inheritance Tax as the rules can be quite complicated and there could be quite a few exemptions/reliefs that may apply, also inheritance tax can be open to government changes.

What if My Circumstances Change?

If you include a properly worded legacy in your will, it will allow you to take account of any changes that may occur in your personal life. You can be safe in the knowledge that if your circumstances change your will automatically takes care of these changes so that you are able to look after yourself and family first, whilst still being able to take account of your chosen charity, but only if there is money left over from your estate after you depart.

A Guide to Will Making

Making or updating a will is a lot easier than most people think. We have put together and answered a few questions that you may have and why everyone should have a professionally written will and the best way to go about it.

Why Do I Need A Will?

It is important that everyone over the age of 18 years has an up to date professionally written will, and while we cannot predict the future, we can make sure that after our death our wishes throughout our lifetime are carried out, and thereby help to relieve our families of added stress at a time of bereavement.

Although parts of your estate may go to your family, if you have not made a will it maybe that your spouse will have to share their inheritance with persons/relatives you would not want or wish to inherit from your estate. Your family may also have to pay Inheritance Tax, which is currently charged at 40%. If there were no relatives, your estate would then go to the Crown.
Having a will gives you and your loved ones peace of mind; it also means you can save your beneficiaries from paying unnecessary taxes. You may want to leave gifts for other family members or your friends or a charity, and it gives you the opportunity to decide about any wishes you may have about your funeral.

Can I Draw Up My Own Will?

When making a will there are issues that need to be considered, you may wish to create your own or get over the counter templates but unfortunately, they can lead to various problems without professional advice, and they may not easily be rectified after your death. There maybe important details left out or it could lead to the will being made invalid or an unexpected tax bill. When dealing with these issues it is always advisable for you to get professional advice from your solicitor.

Is It Expensive?

It will depend upon how complex your affairs and your wishes are, but making a will is easier and more affordable than you may think. We recommend you contact your solicitor in the first instance and be sure that you and the solicitor are clear about your wishes. You can request an estimate at no commitment before you decide.
You may already have a will and may want it to incorporate a legacy; your solicitor will attach a written instruction called a Codicil (a Codicil is a document used to change a will that has already been made). Do not change the will yourself as it may invalidate it.

Contact the Law Society for details of law firms near you.
England and Wales http://www.lawsociety.org.uk, or call 020 7242 1222.
Scotland http://www.lawscot.org.uk, or call 0131 226 7411.

The author accepts no responsibility for actions taken as a result of the above article. When considering your will, a legacy or a pledge legal advice should always be sought for the most up-to-date information and advice tailored to meet your personal circumstances. 

If you would like to discuss leaving a legacy to the Mesothelioma UK Charitable Trust in the future please contact Jill Lemon, Fundraising & Marketing Manager on Freephone 0800 169 2409.


There will be more funding in Scotland at Glasgow  for A procedure called a Percutaneous Spinal Cordotomy may help relieve pain that has not responded to conventional pain medicines. The procedure involves heating some of the pain nerves in the spinal cord that send pain information to the brain. It involves placing an electrode (about the size of a blood test needle) into these pain carrying pathways, using special x-ray guidance. It is done under a local anesthetic; the patient is awake so that they can communicate any sensations felt during the procedure. Patients who have been treated with this procedure can gain long-term pain relief (months to years). Sometimes the procedure can be unsuccessful because the pain nerves cannot be identified safely. Any risk should be discussed with the doctor. There are currently four centres offering a Percutaneous Cordotomy service to patients – these cover the South, North, North-West and Midlands. They have all agreed to have their details circulated.

Drs Mike Williams or Nick Campkin, The Pain Clinic, Level D, Queen Alexandra Hospital, Cosham, Portsmouth  PO6 3LY
Tel: 02392 283271 Fax: 02392 286888  Email:  michael.williams1@porthosp.nhs.uk  nick.campkin@porthosp.nhs.uk

Dr Paul Cook (Consultant in Palliative Care & Anaesthesia), Room 21, Central Offices, Pennine Square, Royal Oldham Hospital, Rochdale Road, Oldham, OL1 2JH
Tel: 0161 656 1912 Fax: 0161 656 1929 E-mail: paul.cook@pat.nhs.uk

Dr Mahohar Sharman (Consultant in Pain Management), The Walton Centre for Neurology and Neurosurgery NHS Trust, Lower Lane, Liverpool, L9 7LJ.
Tel. 0151 529 8294 (Pain Clinic) or 0151 529 2098 (Aintree Palliative Care Service)


I have to admit I really must keep an eye on information as I hadn’t realised this had been update and things are changing fast nowadays.


Peritoneal is the cinderella of Mesothelioma But there are 2 trials that are including this rarer Disease with the new drugs coming through they are including so if you have Peritoneal please contact St Barts or Leicester and ask. We don’t get anywhere unless we chase.

It was soon dark and London Lit up before us so we all made our way to the Tube Station and went our separate ways. It had been a great meeting.


Our train was packed and we stood with 3 men that were Carpenters and were putting in Kitchens in Pent House suits that were costing 3 million. A door handle costing £300 ?

Then one man started talking about his son of 6 months weighing 2 stone ???

He showed a photo and I asked to see it. He was just a normal little boy but he looked about 2 years old. goodness knows how big this baby will grow to.

We walked through the train to number 4 carriage as it splits at Faversham and I was laughing as all the men were asking “Do you want my seat” bless them all I love the kindness shown but we were walking through and finally found a seat in the right carriage.

We were soon home and dog walked and diner cooked.

It has been a good day.