Living With Mesothelioma -My Diary- Mesothelioma Action Day At The London Hazard Centre Farringdon London

A really lovely journey on a warm day to London and the tube set us in a great mood as we made our way to Farringdon Station.
I crept in and stood at the back and watched Linda Reinstein  talking to Philip Lewis waiting for her to realise Ray and I were actually there. she turned round at last and gave the broadest of smiles. We hadn’t seen each other for about 18months ago.
So lots of hugs and laughter.
We had a tea and waited to go outside to release the Doves
The dove release was so special.They came out and flew off free taking our thought of all the mesowarriors that have lost the battle. Free spirits now. After their release the doves usually circle in the sky above a couple of times, they then fly off safely to their home.  Home is very important to these amazing birds.  After their spectacular release, they will usually circle over head, then fly back to their home.
We all went back inside where Philip Lewis, Chair London Hazard Asbestos Group spoke his opening remarks.
Tony Lennon SERTEC President and
Gail Cartmail Assistant General Secretary UNITE
Rachel Thomas, Guys Hospital Mesothelioma Group
The HSE reports that approximately 3,200 people in the UK die from the disease each year, and this is set to continue until the peak of mesothelioma deaths, which is expected around 2020.
 Michael Lees has retired from the leading role as he is happy with the team and all they do. The fight goes on “More than 75 per cent of Britain’s state schools contain asbestos. Much of that is badly maintained, meaning that children and staff are exposed to this killer fibre. Over 140 school teachers have died from Mesothelioma in the past ten years. An unknown number of cleaners, admin staff and caretakers have also died.”
Linda Reinstein ADAO US Spoke about her story of her meeting up with Mesothelioma through her Husbands contact and sadly his lose of life.
Alan Reinstein died in 2006 at age 66 after a fierce battle with mesothelioma, but Linda has carried on his fight to this day. As a way of coping with her tragedy and intense grief, she co-founded the Asbestos Disease Awareness Organization (ADAO) in 2004, a nonprofit with a mission to serve as a voice for victims of mesothelioma and other asbestos-related diseases. The organization has played a major role in fighting for victims and helping to shape public policy.
Linda uses her camera constantly and she made us laugh taking a Selfie.
We stopped for lunch and all of us were able to chat away . I was surprised at people saying “We Tweet with you ” A face to the name at last.
After lunch it was the turn of Janice Allen

Mrs Allen, a 53-year-old saleswoman, who was exposed to

asbestos on the shop floor whilst working in two M&S stores between 1978 and
1987, first in its flagship store on London’s Oxford Street and at Uxbridge.
She was diagnosed with mesothelioma and Harminder Bains, applied for a court
order that M&S disclose surveys of stores. As a result, M&S admitted negligently
exposing Mrs Allen to asbestos.
Mrs Allen’s case is thought to be the first in which Judgment has been given for a M&S
employee who was exposed to asbestos by simply working on the shop floor. After the
case settled Mrs Allen said:
“I feel betrayed by M&S. I worked very hard. But to think
beneath the surface, they were, exposing people to deadly risks”.
Harminder said:
“It is possible that there may be other people who were exposed
to asbestos in the same way as Mrs Allen. I have represented clients who have
been exposed to asbestos in hospitals, offices, banks and schools.
However, there is no way of medically screening for mesothelioma so my
recommendation to anyone who may have worked at M&S or any other public
building in which there is a possibility that there has been exposure to asbestos,
is that they attend their GP and ask to make a note of it on their medical records.
Then I was called up to speak

I obtained Mesothelioma by washing my Husbands clothes when he came home from work at the Chatham Dockyard, He was a Shipwright.

After his apprenticeship and then National service he returned to the Dockyard.
This is when he worked with Asbestos, the laggers lagged everywhere in the ships as they were being refitted.
I lived a wonderful healthy life and then I retired in 2000 sold our house and moved to the Coast bought a Motorhome and settled into retirement.
The story of Mesothelioma began.
It is the same story so many Mesowarriors describe,the fact you can’t breath and struggle to walk, so I contacted the GP had a Xray and ended up having 7 Litrs of fluid drained.
The Bi-op then confirmed Mesothelioma and then the 6 months death sentence.
All this leaves you numb and alone.
I went through 1 Session of 6 chemos had shrinkage then 15 months later regrowth so I was put on a trail NGR-hTNF at Maidstone
which Im afraid did not work for me or I had a Placebo.
They don’t leave you 4 more chemo’s slight shrinkage.
When it grew back I had 2x 6 sessions of Chemo. But I became very allergic and the chemo was mutating and fighting my body.
I was told no more treatment.
I couldn’t take that and I asked to be referred to the Royal Marsden.
Prof Bono offered me the trial of Imunotherapy the MK3475-28 Merck trial that we are all hearing about. From Day 1 I called it my Miracle drug and I pat each bag and say “ Go do your best” much to the amusement of the nurses although they are saying it now.
There were 3 Mesothelioma cases when I started but sadly it didn’t work for 2. They take three little test tubes of blood every 2 weeks that they send to have my DNA looked at as they are trying to find the Gene that is causing this miracle.
Each scan brings wonderful news and the shrinkage is fascinating, after 27 drug infusions.
Two marker tumours have disappeared another 1 has almost gone and all the other areas have had great shrinkage. The hope is that after allowing me to go on that the shrinkage will carry on to headline news as I’m the first one in the world to have so much shrinkage.
Over 80% now.
So I say to the professionals working in the asbestos sector —–
I got my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure, since the use and importation has been prohibited in Europe the exposure people are now suffering and continue to be exposed to is a result of asbestos still in our built environment, so for the sake of the future generations asbestos must be removed from the world we live and work in
To do that it requires professional companies operating at the highest standards to continue to remove this category I carcinogen safely and make our world a safer place. We must never forget those who have died as a result of asbestos- all were preventable deaths.
We must make sure that future generations are kept safe from this cruel and deadly mineral.
And that current generations can get justice and access to medical treatment that they deserve. Their work contributed so much to our economy yet they have paid the ultimate price with their health.
 Harminder Bains, a partner at Leigh Day the law firm who were hosting the London event with London Hazards campaign, said:

“As the recent report into the state of Parliament showed, no one is immune from the threat of asbestos.
“Politicians need to be aware of the dangers, not just to others but to themselves as they remain potentially exposed to the danger within their workplace.
“We are only now seeing the deadly legacy from exposure to asbestos decades ago. We must continue to act to ensure that the eradication of asbestos is made a priority for all agencies.”

The best news was that Harminder said she had been late because she had the news that the Government have done a U Turn and No one putting a claim in for Compensation will have to pay the £10,000.00 up front. Many didn’t know that had been passed as it was passed on the day they broke up for the General Election.
She has given us a copy of the email from the Lord Chancellor so believe me its true as I know some Mesowarrior  have been so worried if they paid this and then lost their case they would loose £10,000.00.
Dave Fisher from Thompson’s Solicitors Gave a great talk and i have to say that we in the UK are lucky to have such Solicitors. They really do care about us Mesowarriors. They are not Ambulance Chaser’s and they are always willing to give advice when I need help with Infomation.
Asbestos remains the single biggest cause of work related deaths. The people affected are
suffering through no fault of their own and we believe this country owes a debt of justice to
asbestos victims and their families.
That is why we are proud to support the Charter for Justice. We believe these changes will
make a real difference and we hope you can support them too Please sign the Charter at this link
Peter Farrell Chair London Hazard Trust Board Closed the meeting.
It was so successful and I haven’t been able to tall you every interesting word spoken. It would be great if we saw more people at these meetings so we raised more awareness.
Janice and I did a little filmed Interview for Hazard to use for publicity in the future.
So it was all over and we were starving so up the pub we went going out into the bright sunshine and noisy London.
Linda ate fish and chips.
More Selfies
And that was it we had to say goodbye and travel home. Tired but really happy day has been had.

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