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Such a lovely day again as the sun rose over the horizon. I was awake again so very early but my throat was so much better and I was swallowing better with just a little pain.

Tidied up and then nodded off in the chair while watching the news.

We had an early lunch and then set off for Margate to visit a very special Mesowarrior. We called in and bought a bouquet of flowers.They had 2 ornamental cabbages in the bunch.

Winter Bouquet - Carole Gomez/Photodisc/Getty Images

Like this one but all green.

We went wrong when we got into Margate and we panicked we were at the wrong road. We have been before and thats what made it so silly. Going back and forth we couldn’t find the house. I told Ray to go to the sea front and see if we could track back from there as last time we had been for a lovely walk to the seafront. Going through the roads we came to the right one and found the house. A very senior moment there.

It was great to see our friends and lots of cuddles and kisses. I didnt want to tire her so we didnt stay long as 2 hours of laughing and talking was tiring  but we promise to go again soon it had been so good to see her and to know she is fighting Mr nasty but Chemo has done so much damage as it did me. I pray she will recover from the chemo bit by bit and get stronger before the winter to be able to fight infection.

I was given beetroot pulled fresh from the garden and I have come home and cooked them. It makes you feel so healthy eating fresh veg like this.

We called in to the Supermarket and shopped for food to take in the Motorhome as we are off to Rye for the C&CC 50th birthday party so it is lots of fun in the rugby club this week.

An email was here from the Royal Marsden changing my scan date. I sweated as I checked the dates as I had sorted my diary out for July/Aug but it is all good so everything is calm again.

My Local MP Julian Brazier has replied to my email regarding choice and free social care at the end of life.

It is a issue in which he has a great interest as he fought to save our Canterbury Pilgrims Hospice which was under threat of closure.

He gave me a link to our local Commissioning Group.

Dying matters

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Dying is an inevitability we will all face.

It is a topic most of us shy away from discussing, but talking about it can make all the difference to the person reaching the end of their life and those around them.

Next week (12-18 May) is Dying Matters Awareness Week and NHS Canterbury and Coastal Clinical Commissioning Group (CCG) is encouraging people to talk about their preferences for their end of life care.

Dr Maliha Karamat, GP at Saddleton Road Surgery, Whitstable and CCG clinical lead for End of Life Care, said: “Death is a subject that can be very difficult to broach, however, it’s important to let your family, friends and GP know what you’d like for the end of your life.

“Talking about the practical and emotional aspects of dying is important in ensuring a person’s wishes are carried out.”

The NHS provides support for people at the end of their life in a variety of ways, whether it’s from a palliative care team in the community, pain management at home, in a hospital or hospice.

NHS Canterbury and Coastal CCG has recently developed an End of Life Strategy. This includes information for GPs and practice staff and sets out commitments around:
• Supporting patients to ensure their end of life wishes are followed
• That people coming to the end of their life are able to die in the place of their choice, pain free and with dignity
• That support is provided to families and carers of those nearing the end of their life
• And that support is provided to families and carers once their loved one has passed away.

Dr Karamat added: “As a CCG we are committed to improving the quality, care and services for all our patients. Our End of Life Strategy is an important part of ensuring people nearing the end of their lives are made to feel comfortable talking about plans for when they die.

“How people die remains in the memory of those who live on so it is essential for the patient as well as their loved ones to be open about this discussion.”

Dying Matters is a national coalition which aims to change public knowledge, attitudes and behaviors towards dying, death and bereavement. It has produced a leaflet called You Only Die Once which lists five things everyone should do.

1. Live well and die well. Make your wishes known today.
2. Write your will. It is the only way you can be sure your wishes are carried out correctly – and it avoids leaving your family to make difficult legal decisions.
3. Record your funeral wishes. Have the funeral you want.
4. Plan your care and support before you get ill. Talk to your family, healthcare workers and GP. After a sudden stroke you may not be able to talk.
5. Tell your loved ones your wishes. Talking about dying often isn’t easy but you should share your plans and, if you have written them down, let your family know where they are kept.

For more information on Dying Matters see www.dyingmatters.org or call 0800 021 4466.

If anyone has any comments on the draft NHS Canterbury and Coastal CCG End of Life Strategy they are encouraged to email the CCG: c4.ccg@nhs.net

The Latest for the Saatchi Bill

‘WRITTEN ANSWER’ BY DANIEL POULTER MP ON MEDICAL INNOVATION BILL

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Daniel Poulter, The Parliamentary Under-Secretary of State for Health, has replied to a written answer from Jim Fitzpatrick MP (Poplar and Limehouse, Labour) on the Medical Innovation Bill.

Feedback on the Bill to date has already led to excellent suggestions – such as an open database of innovation, to be developed and hosted by Oxford University.

We look forward to the Government amendments.

Read the question and answer below and here in Hansard.

Jim Fitzpatrick (Poplar and Limehouse, Labour): To ask the Secretary of State for Health with reference to the written statement of 22 November 2014, Official Report, column 65WS, on the Medical Innovation (No. 2) Bill, when he plans to bring forward legislative proposals to remove barriers to medical innovation, along the lines set out in that statement.

Daniel Poulter (The Parliamentary Under-Secretary of State for Health; Central Suffolk and North Ipswich, Conservative)
My noble Friend Lord Saatchi has reintroduced the Medical Innovation Bill in the current parliamentary session as a private peer’s Bill, which had its second reading on 27 June. The Government is supportive of the principles of this Bill, but believes it is necessary to amend the Bill to ensure it does not:

put patients at risk;

deter good and responsible innovation;

place an undue bureaucratic burden on the national health service; or

expose doctors to a risk of additional liabilities.

The Bill will proceed through Parliament in the usual way.

Hansard source (Citation: HC Deb, 21 July 2014, c999W)

Another really lovely day after the clearing of low cloud by dinnertime.

I was up so early as my throat was so painful and I took painkillers to relieve it. I stayed up and worked on the computer sorting problems out. I love sharing my knowledge I have gathered together the last 5 years.

I sorted my diary out as i have planned so many trips amongst my appointments.

Off to the park in Faversham after lunch which was packed with mothers and their children enjoying the sunshine. It seemed also packed with dogs running after balls or just racing around. Louis stayed on the lead anyway as the park is surrounded by roads and that always seems so dangerous to have no control of your dogs.

We walked around and then went back to the farm shop to buy fresh vegetables and fruit. The plums are in but not my favorite victorias.

I made do with strawberries and cherries.

Dinner was lovely fresh veg and mince as we have had so many salads over they last week.

Photo: WISHING AND HOPING .

http://www.canterburytimes.co.uk/New-doggy-bakery-launches-Whitstable/story-21644024-detail/story.html

I have to visit this new shop for treats for Louis

WHITSTABLE is known for being a top place for food lovers – and a new bakery is hoping for success, by catering for their four-legged friends instead.

Daisy’s Dog Deli, based in the Harbour Village, is a bakery selling roast chicken dinner muffins, liver cake, carob brownies, beefy postmen and even birthday cakes, all for dogs.

Run by Lisa Gosling, the business, which is named after her Wheaten terrier Daisy, opened in its new premises on Saturday. The trained chef told the Times she was inspired to launch the business after Daisy had problems with her diet.

CROWD-PULLER:  Whitstable Oyster Festival's Mud Tug by Moonlight  Picture by Brian Baker

http://www.canterburytimes.co.uk/Packed-programme-Whitstable-Oyster-Festival/story-21643961-detail/story.html

THE Oyster Festival returns to Whitstable next week for another bumper packed nine days of fun, food and frolics.

The annual event opens on Saturday July 26 with the food fair in the harbour from 10am.

The traditional Landing of the Oysters will take place at Long Beach at 2.15pm before the parade takes to the streets from 3pm.
http://www.essentially-england.com/oyster-festival.html

In the small Kentish town of Whitstable, a large part of life revolves around oysters. So it is only to be expected that – every once in a while – the inhabitants should get together to celebrate their livelihood.

That celebration takes the shape of the annual Whitstable Oyster Festival - and you don’t have to be mad about oysters to enjoy it!

Actually, whether you’re a history buff or just love a celebration, the Whitstable Oyster Festival is a good place to be.

From the traditional Landing of the Catch to the Blessing of the Waters, from an oyster eating competition to a mud tug and a fireworks spectacular, there’s plenty to do and see for adults and children alike.

And then, of course, there are the oysters, for which Whitstable has been famous since Roman times. Back then, they were not the delicacy they are today, but subsistence food that even the poorest could afford.

Oysters © hamper | Morguefile.com

Throughout Anglo-Saxon times and the Middle Ages, oysters were widely fished, providing income and food for whole communities.

So it seemed only natural to invoke some higher protection to ensure commercial success, especially as many sailors refused to learn to swim, preferring to trust exclusively in the security of their boats.

With the spread of Christianity a saint – St James of Compostela – was assigned the task to watch over oysters and those who fished for them, and communities whose lives depended on oysters began to celebrate his feast day on July 25th.

St James’ festival traditionally began with a blessing of the sea, the sailors and their boats, in hope that their lives and livelihood survived in safe abundance.

And this year is no exception.

The 2013 Whitstable Oyster Festival begins on Saturday, July 27th, with thetraditional oyster blessing. The oysters are carried in procession to the Lord Mayor of Canterbury, while a grand parade through the streets of Whitstable follows the blessing ceremony.

Afterwards, the festival gets underway with plenty of educational and fun activities.

If you think you can suck oysters down faster than anyone else, then the Oyster eating competition might be right for you. Try eating half dozen oysters and washing them down with a half pint of Whitstable Brewery Pilsner. Do this faster than anyone else and you’re a winner.

Even though oysters are nowadays regarded as a delicacy and therefore not to be had cheaply, visiting the Whistable Oyster Festival will not leave a hole in your pocket.

Oyster Feast © Seemann | Morguefile.com

Art galore is part of the festivities with local artists, classes and displays. Much of the entertainment is free and the flea markets and craft sales cost you only what you wish to spend.

Crafts and food always go together and the Whitstable Oyster Festival is no exception. Feed your taste for delightful and unusual foods while you feed your soul at the festival.

There is even a masseuse if you’ve had too much activity.

Another tradition is Grotter Day. The grotter is a hollow mound made of mud and decorated with seashells. Often children would make them and then receive a penny or two for the best one. This free activity starts in the early evening so you have all day to collect the shells.

Seashells and Starfish © Janpietruszka | Dreamstime.com

And for those who plan to visit the festival, the following fun facts about Whitstable might come in handy:

  • Tipping the Velvet, a book and television drama by Sarah Waters, used Whitstable as one of the settings
  • The 2006 movie Venus, with actor Peter O’Toole used the Old Neptune Pub in Whitstable for filming
  • W. Somerset Maugham lived in Whitstable with his uncle from the age of 10. The setting of Blackstable, for his book Cakes and Ale bears a great deal of resemblance to Whitstable. (Not really a big reach when you consider the name.)
  • Peter Cushing, star of the classic vampire, monster, and mummy movies, lived in Whitstable after his retirement

The Whitstable Oyster Festival offers something for everyone. Most of all there is great entertainment and music to accompany delicious local food and drink.

http://mesoandme.wordpress.com/2014/07/22/tuesday-103/ Rays Blog

We have had a great weekend away in Uckfield so I think I will load photos and they will tell the story.

My voice is back completely but the small price to pay is a very painful throat  The amazing thing is I have been able to walk around so steady and my legs are strong again.

Appetite is Ok have managed to eat healthy though and thats the main thing.

sus15

 

 

 

 

 

 

 

The very hot weather bought  wonderful storms

The night sky was filled with strikes as we watched from our Heki

http://www.mirror.co.uk/news/uk-news/uk-weather-lightning-storms-return-3882209

This was at the Isle Of Wight not very far from where we were when it comes to storms as this  came over us and we were watching the show.

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There have been wonderful clouds overhead

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Blue skies in the warmth and this was the view from our M/Home

sus1

Sun sets and sun rises were all so pretty

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Sun set

 





 

 

 

 

Lots of relaxation time where you just sit and look atnature

Lots of relaxation time where you just sit and look at nature

 

 

 

 

 

 

 

 

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Mick got out his guitar and played Country and Western.

 

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Did we care if it started raining-no of coarse not it just meant the umbrellas came out.

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sus6

 

 

 

 

 

 

The sun soon came out again, our patients was rewarded.

 

 

 

 

Saturday night was another storm and we had a huge lightening strike with a huge bang as a fireball exploded just over the wooded area. Fire engines with sirens blasting and a house had been hit as was reported in the newspaper Sunday.

http://uckfieldnews.com/wp-content/uploads/2014/07/Lightning-strike-1-500×378.jpg

It really has been an eventful weekend and I have enjoyed every minute.

We came home today and I have done the washing that can be packed back in the Motorhome for the next trip.

Rays Blog he has enjoyed it as much as I have had bless him.

http://mesoandme.wordpress.com/2014/07/21/monday-94/

 

Had a very tiring day yesterday. The heat was so stifling as the air was so humid. The heat after all last weeks rain caused the humidity to rise.

I cant believe after moaning about the rain last week Im moaning about the heat this week.

One thing we are noticing is the fact I have my voice back. I have often talked about the change in my voice. Very croaky as the tumour grows back and clears as the tumour shrinks. That is happing so it must be the tumour has shrunk off the nerves to my voice box.

My Scan in August will tell me if I’m right.

Still the pains in my shoulder and all down the right left lung from under my arms. A weight loss though so the fluid is going away. Im eating very healthy now. Low fat and more fruit as strawberries and cherries are plentiful at the moment and plums are ripe so they are the fruits I love, Still no bananas though. I love them but they make my potassium rise.

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We did have a good day yesterday and I did a really good clean through. Love changing shower curtain and toilet mats to blue from green as it changes the whole appearance.

Moped all the floors right through. So pleased we dont have carpets as it is so much fresher after a good mop.

The only thing is Ray and Louis always walk back in, why do they always choose that moment.

Windows were flung wide open to let the sun and breeze in and you feel so good.

Then I flag. We did go to B&Qs but walked Louis to the rugby field first. He had a great game off lead but he was getting to warm and was panting away so we cooled him down and ray went shopping. We couldnt wait in the car as it was like an oven.

We are going camping as the weather is going to be so lovely and our group are at Uckfield in a lovely field on the outskirts of town. It will be good to meet up with everybody again.

They do forecast bad thunderstorms but that means the M/Home will be washed down well. I will put all the foam over it and let the rain wash it all off ha ha !!

The fight for Asbestos in Schools took a new lead yesterday

The APPG Asbestos Seminar took place yesterday at TUC London

IATP was there delivering a solution to be delivered to schools via JUAC & Mr Beaumont their lead rep on this matter.

http://lucion.co.uk/news/update-asbestos-schools-need-action-party-parliamentary-group/

he need for action by the All-Party Parliamentary Group on Occupational Health and Safety has this month been released.

Lucion’s Tim Hearn comments on the update:

“First published in February 2012 the updated report has some concerning statistics:

  • Britain has the highest mesothelioma incidence in the world.
  • Mesothelioma deaths among teachers is averaging 15 deaths per year since 1980 (267 in total). These figure do not included cleaners, cooks, premises officers secretaries and other school workers.
  • Between 200 and 300 people will die each year of mesothelioma  because of their asbestos exposure as a child at school in the 1960′s and 1970′s.  This equates to 4,000 to 6,000 former pupils.
  • A nationwide survey of asbestos in schools showed that only 33% of school safety representatives who responded knew where to find the asbestos register and only 20% ensured that visiting contractors were shown the the register before they commenced work.

The report can be found here:

https://www.teachers.org.uk/files/appg-booklet-final-17-mar-14-asbestos-in-schools–2-1-.pdf

The report also highlights an alarming lack of training held by those with a duty to manage the problem in schools including building managers,

head teachers and school governors “particularly those in academies and free schools”.

Whilst the report calls for the phased eradication of all asbestos in schools the HSE

stance remains to ensure that asbestos is regularly inspected and managed in situ.

A problem with this is that tests have shown that unsealed concealed asbestos can be disturbed by normal school activity and condition inspections are often carried out without an accompanying air test.

Other countries are taking action with regard to asbestos safety in schools,

The Australian Government passed the “2013 Asbestos Safety and Eradication Bill” which will prioritise the total removal of asbestos in public buildings, whilst this year the Netherlands will be introducing an environmental safety level 3,000 times lower than the current UK level.

Until the UK government follows suite it is essential that asbestos management procedures within schools are effective and robust.

For those concerned with the issues of the updated report, a recent White Paper released by Lucion this month can found here detailing duty holders responsibilities.”

Julie Winn said on Facebook —Read my letter to British Safety Council on asbestos in schools.

https://sm.britsafe.org/hse-takes-enforcement-action-over-asbestos-one-10-schools

More than one in 10 non-local authority controlled schools faced enforcement action for failing to meet adequate

asbestos management standards during a recent HSE inspection initiative.

A further 15% of the 153 independent, voluntary aided and foundation schools, free schools and academies inspected across the country

between April 2013 and January 2014 received written advice from HSE on managing asbestos containing materials (ACMs).

Of the 20 improvement notices served on the schools, eight were for failing to have a written asbestos management plan; eight

for a failure to undertake an adequate survey of asbestos; two due to a failure to implement a suitable system to manage the risks

from asbestos; and two for inadequate training and information for employees.

But according to HSE statisticians, dutyholders’ awareness of their legal responsibilities was 9% higher than during the last inspection programme run in 2010/11. The vast majority – some 95% – of schools had a full or broad understanding

of the requirements of the Control of Asbestos Regulations 2012.

By contrast, in 2010/11 164 schools outside local authority control were inspected and 41 improvement notices were served on 28 schools. “Over the last few years there has been a lot of work by stakeholders across the school sector to raise awareness of the duty to manage asbestos, ” said Geoff Cox, the head of HSE’s public services sector. “It is really encouraging to see that awareness of the requirements has increased since our previous inspection initiative.

“That said, schools should not be under any illusion – managing asbestos requires ongoing attention. Schools now have access to a wealth of guidance setting out clear and straightforward steps to achieve and maintain compliance.

“Where duty holders fall below acceptable standards, HSE has taken, and will continue to take, enforcement action” According to HSE, the inspection initiative revealed a number of common themes in those cases where schools were falling

short of the requirements. In four key messages HSE recommends schools should:

Ensure their records are up to date: 85% of the schools HSE visited had carried out an asbestos management survey. In some schools, however, the records were not up to date or did not include all the buildings.

Where refurbishment work had been undertaken in some of the schools that had recently become academies, the asbestos register did not always reflect current information about presence, location and condition of ACMs

Have an asbestos management plan: the regulations require dutyholders to have a written plan of the actions and measures necessary to manage the risks from ACMs.  77% of the schools visited had an asbestos management plan, a 14% improvement on 2010/11

Ensure in-house employees undertaking building and maintenance work have received adequate asbestos training: among

the schools where in-house staff were engaged in such work, 63% have training in place, a 14% improvement on 2010/11

Have a system to inform anyone who may disturb ACMs of the presence of asbestos: just over half of the schools inspected

(54%) had a comprehensive system in place to ensure that anyone who may disturb ACMs would be provided with information

on any asbestos that may be present. This reflected only a slight increase on the findings for 2010/11 (50%).

Christine Blower, the general secretary of the National Union of Teachers, said the findings demonstrated the need to bring back proactive inspections of schools.

“This report demonstrates that significant numbers of schools are still not safely managing their asbestos. The fact that 13% of these schools were served

with a formal improvement notice is extremely worrying, particularly if that picture was reflected more widely across all schools.

“Of even greater concern is the finding that nearly half (46%) of the schools visited did not have a comprehensive system in place to ensure

that anyone who may disturb asbestos – this could be staff or contractors – is told of its presence. “It is clear that some schools are struggling to meet their legal requirements to manage asbestos safely. Academies, free schools and

other independent schools, which cannot rely upon local authority support, are particularly vulnerable. “Against this background the NUT calls for the re-introduction of pro-active HSE inspections of schools, which were abandoned in 2011.

Without these inspections there is no safety net to pick up instances of poor management that expose staff and pupils to risk. There is also no wider intelligence about the success or otherwise of the Government’s policy on the management of asbestos in schools. “The longer the issue remains unaddressed, the more people will be exposed. What is needed is a long-term strategy aimed at eradicating the problem once and for all.” So you can see things are in the headlines to make our schools safer for young lungs and out future generation.

I hope it all succeeds —————————————–

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Rays Blog http://mesoandme.wordpress.com/

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A lovely day today so we have summer around again.  I woke up after sleeping a very deep sleep. I was exhausted wasn’t I.

I have been checking out and my having low blood pressure is due to my drug.

Things you can do to manage hypotension:

  • If you have low blood pressure, changes in position must be performed slowly. Rest for a few minutes in between lying, sitting and standing.
  • Avoid hot environments, such as a shower or a bath, which may cause your blood pressure to be reduced.
  • Avoid alcohol and certain drugs that may cause low blood pressure. Discuss these causes of low blood pressure with your healthcare provider.
  • Drink lots of fluid. Drink 2 to 3 liters of fluid every 24 hours, unless you were told to restrict your fluid intake. This will decrease your chances of being dehydrated, and developing low blood pressure.

So Im more relaxed and Ray is monitoring it for me on his machine. It is higher slightly tonight so I will keep drinking fluids. This means more water for the diuretics, this might be hard ha ha !!!

We went shopping after lunch to Canterbury and it was lovely walking around in the sunshine.

The postman came and there was a lovely Dragon Fly with the story to go with it.

dragon fly brooch

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Gradually more and more Mesowarriors said they had received one.

I knew from the postcode who it was as it came from Brighton. It was Jan Weston. I think that was a lovely thing to do Bless her. We will all have to wear them to our meet up in August.

I also shared Michael Crills From Libby, Montana lovely but sad poem. He is very clever to capture just how it is.

london calling montana

 

 

 

 

 

 

 

 

 

 

London calling Montana

Today I’m Told
By Mike Crill

Today I’m told I have asbestosis in both my lungs
and that I am being sent home to die because there is no cure and asbestosis
is my guarantee to death…

Today I am scared to what has become of me.
I no longer can run nor walk very far.
Life’s getting harder every day…

Today I’m saddened by those who love me as they try to hide
the truth and their pain, knowing I shall soon die and that
they will witness my every moment, until I die…

Today I feel so lost because my life depends on a tube that
pumps oxygen into my lungs to keep me alive. Knowing beyond
the end of that hose lies the end of my life…

Today I am mad because I can’t feed myself and someone has to
bathe me, dress me and change my soiled pants. It’s times like
these I wish I were dead…

Today I am in the hospital. I’ve become too much for my loved ones
to endure and I am crying inside because I know when I leave here
I’ll be in Heaven…

Today is the worst, no feelings in my hands and feet, both are
turning blue and non-stop morphine is all that’s left to ease
my pain…

Today I tried my hardest for my last breath, for my last
touch of a hand in mine, as the last words I heard and the last
words I spoke, “I love you…”

Today … I’m in Heaven. No pain for ever more. It’s really
beautiful here. And I shall await for you all to join me in
eternal life and love…God bless and Amen

http://www.mymeso.org/2009/01/23/longtime-libby-resident-crill-captures-tragedy-through-poetry/

He also shared http://www.voicesnet.org/displayonepoem.aspx?poemid=228350

NO MERRY CHRISTMAS 1999

AS I anticipated spending X mas
With my family and loved ones
As I drove into my parents drive way
Such joy I would soon share all day

Opening the door to a maze on the floor
And into the front room I saw more and more
All amoungst the house, a site to see
Clear plastic hoses run every which way.

This hose run every which way
This hose went left,right and back
All tangled up and a mess on the floor
Way in the corner, a big box, I see.

All these hoses begin their for me to see
Each one of these hoses, I follow to their end
Hooked to the nostrils, of my dearest best friends
I stood in the hallway and saw what I seen.

From down in my heart I felt myself scream
Two frail people, gasping for air
Each step they take doesn’t seem fair
They both aren’t very old,60 plus years

So hard to walk, so painful to hear
Dead in my tracks, mind in a daze
What I am seeing, brings back the old days
Days of my Mom, running faster than me

Chasing me for wrong with a switch from a tree
A woman who raised six children with love
Never to stop loving till her last day
Always their for me when trouble I do

Teaching me right from wrong that I do
I stood for a moment, seemed like many a years
Life flashing before me, holding back my tears
And beside her, her love of 46 years

A hose to my Dad and I lost all my tears
This x mas shall never forget
Never before have I felt so sick
As we all stood, looking at each other

Me their Son, they my father and mother
What has happened, how could this be
What I felt as my parents looked at me
Oh such pain I saw in both their eyes

A look I felt as if they were saying good bye
Miles of tubes, constantly feeding them air
All I could think is how life is not fair
Confined to a hose, as far as the end.

So slow each step, their knees they can’t bend
It’s so hard to write down a hurt that’s inside
And finish a poam my tears I can’t hide
I turn away fast and take a deep breath

Cry in my silence yet fooling no one
They didn’t say much, not much could they say
As we looked at eachother,oh what a day
I walked towards them to give them a hug

I went to my mom first, as I always done
I reached my arms around her
Wanting to just hold her so tight
In my arms as we held each other

So many times as a son and a mother
Over whelmed with emotions going faster than light
All that in life I love as I’m holding Mom tight
I love you dear Mother, I love you so much

A special love shared, when ever we touch
A thought of this moment that I’m sharing with Mom
A day will come and I will be alone
So I held a little tighter, heart against mine

Fighting back thoughts of Mom, not in my arms
I give Mom a kiss, say I love you again
A extra hug and our arms became unhooked
I look at my Dad, to give him a hug

He seemed so distant as we became one
With my arms around Dad, his around me
Over his shoulder, it hurts what I see
Here is the man, once strong and so free

Holding me loosely over my shoulder to see
To feel what I did, Dad in my arms
My arms holding on, I don’t want to let go
I Love you Dad, I say close to his ear

Holding him tight,we could feel our own fears
As I let Dad go from the love in my arms
I felt so sad for having let go
I had to be excused,into the bathroom,I locked the door

I sank to the floor, I could not hold back no more
I cried so hard, seeking peace from within
God give me strength so I can begin
To get to my feet and hold back my tears

Go face my loved ones, not showing my fear
I did rather well yet I know they could tell
They felt my pain as I shared in their hell
Helpless I am, what’s done it’s too late

Time is a ticking, time is their fate
Saying good bye to what I last saw
Changes my life to stand and not fall
All that matters and all that I see

I Love you Dad and Mom, best friends we’ll forever be…
God Bless Dad and Mom from your loving son…Mike

Thank you for allowing me to share this special time in my life with you. Both parents are gone as are many others from living and breathing the deadly air in the town left to die…Libby Mt.

Rays Blog http://mesoandme.wordpress.com/2014/07/15/tuesday-102/

Its been a long long day at the Royal Marsden today. We got up at 4.45am and showered and Ray walked Louis so we could set off at 6.15.

The traffic was great until we got to the M25 and then it was weird. We all came to halt and then next minute we are speeding away.

I thought it was the Variable speed doing it but at the hospital Alistair (the other Warrior on the trial) explained that it is an automatic thing that happens. There are sensors in the road and when 3 lorries travel side by side it sets the sensors off and the Lower speeds kick in.

They does ring true to us as lorries do travel alongside each other. Im sure they play games to make their journeys less boring.

We arrived 8.30am I was told I had been booked into the day hospital as there was a spare bed.

I was with 3 other lovely women who were on Phase 1 trials but they had to stay over night as it was the first time the drugs had been used. The Marsden has to monitor them just incase there are reactions. I was lucky and escaped that as The MK375 has been used on other Cancers so they know the reactions already on a body. Im just teaching them what its like on Mesothelioma.

Im so pleased I dont, as they have been delivered there by family and then they go home and then they have to come back the next day to take them home. All that extra travelling.!!!

My bloods were taken and tested. They came back Ok so they made the drugs up.

The lady with Liver Cancer had to wait while her drug was flown in ??? She was still waiting when I came home.

My young (very young Doctor) visited me and we were all smile as we are getting to know one another. I asked if I could have water tablets and really hit the fluid buildup in my body but mainly my legs.

Of coarse he agreed. So we will see how that goes.

I asked why the trial wasn’t Recruiting more patients and he told me how if everything goes well, for me and the other 3 patients on the Trial, then they will recruit more. So they are waiting for my scan on Aug 11th. I said it will be showing shrinkage as I really do believe in it, he just smiled and squeezed my foot —ahhh bless.

Then the nurse took all my blood pressure etc etc and my  blood pressure was very low. 105 over 54. She made me drink Orange juice as I don’t like the taste of water.

IMG_20140714_133454

 

 

 

 

 

 

 

 

 

 

I had lunch while Ray went and sorted my prescription and he got himself something to eat. I had a hospital meal as I had a bed so I chose haddock spinach and cheese sauce but I wasnt that hungry.

We were then getting so tired and I was laying on the bed which made it worse.

At last the drug arrived and I was all set. It only takes 35 mins to go in and than a flush and I was soon on my way home again. All done for 2 weeks.

We travelled home with all the rush hour traffic.

Home to our house and garden.

DSCF9282

 

 

 

 

 

 

 

We are very tired so an early night is on the cards and I will let the drug work its magic.

Rays Blog http://mesoandme.wordpress.com/

Listening to international anti-asbestos advocate Lou Williams at the Parliamentary Group on Asbestos Related Disease.

 

 

 

 

 

 

 

 

 

 

Lou Williams at the Australian Parliamentary Group on Asbestos Related Disease.She looks so well but was suffering with her latest Chemo. Well done Lou and look forward to your report of the time you have spent in Canberra.

 

Yesterday was a wet and dull day again so I decided to turn the wardrobes out. Everything that I thought can go I bagged up and I got Ray to take us to the clothes bank in Tankerton. I pushed the bags in and that was that I cant start putting back in the wardrobe, changing my mind.

I have also sorted out a pile to hang in the wardrobe in the Motorhome for camping in.

The Tankerton Fair was on so we couldnt walk on the slopes as it was packed. It was turning warmer so we strolled amongst the stalls.

Whitstable and Herne Bay Lions Club ran  221th Anniversary of Whitstable Regatta. It is probably the oldest sea Regatta in the world.

The two day event will be packed with fun, music, displays & races for the children – Everything to suit all the family.

There was a series of seaborne events which were popular in my youth & in my grandparents’ day. The boats of yesteryear & on Sunday the Whitstable Yacht Club will be organising the sailing events. The local Lifeboat Service will also be demonstrating their skills at a seaborne rescue. There is also the return of the “Greasy Pole” for a fourth year.

A Grand Firework Display out at sea created large bangs here.

Medieval history was brought to life with the East Kent Historical Organisation Throughout the two days there are a magnificent array of stalls, sideshows and all the fun of the fair  by Traditional Fairground Amusements.

The children and parents were having a great time.

The day ended in bright Sunlight and turned very warm.

Well our Lou Williams  Kat Wake Burge of AVA  and Rod Smith (Our Rodders) of Bernie Banton are off to Canberra to a meeting at Canberra Parliamentary Group On Asbestos Diseases. To hear about The Australian Safety and Eradication Agency

The formation of the Asbestos Safety and Eradication Agency (the Agency) announced on March 20 by Minister Shorten was the product of a three-year consultation exercise commissioned by the Labor Government. A sum exceeding twelve million dollars has been allocated to set up the Agency which is expected to commence operations on July 1, 2013. Working in conjunction with local, municipal, regional and federal governments and other stakeholders, the independent Agency will be responsible for the coordination and oversight of the National Strategic [Asbestos] Plan, the ultimate aim of which is “to minimise exposure to asbestos fibres, in order to eliminate asbestos-related disease in Australia. One of the most important objectives of this plan is the removal of all asbestos from Government and commercial buildings by 2030. By embracing this goal, Australia has confirmed its place as one of the global leaders in the fight against asbestos.

Contemporaneously with the announcement by Minister Shorten of the ground-breaking Australian initiative, in Committee Room 154 of Parliament House a seminar was taking place under the auspices of the Parliamentary Group on Asbestos Related Diseases (PGARD). Guest speaker Laurie Kazan-Allen, Coordinator of the International Ban Asbestos Secretariat, addressed the subject of: Australia’s Response to an Asbestos Pandemic: National, Regional and GlobalSenators, Members of Parliament and civil servants in attendance included PGARD co-chairs Senator Lisa Singh and Russell Broadbent MP.http://www.ibasecretariat.org/lka-asbestos-life-and-death-in-australia-2013.php

Lou is Speaking as a Mesothelioma sufferer and international advocate for mesothelioma and and asbestos related diseases.

We all wish her luck and know she will do a great job but she is in the middle of Chemo and isnt feeling 100% so we wish her well and hope she can keep her strength up.

lou p

 

 

 

 

 

 

 

 

 

 

Rays Blog http://mesoandme.wordpress.com/2014/07/12/saturday-90/

We are having such bad weather but only here in East Kent by the looks of the lovely sunshine everywhere else. Then On the news the reason came to light.

The Kent County Show Is on. It always rains  when the show is  on.Ok last year was lovely but that was so rare

http://www.kentonline.co.uk/maidstone/news/kent-county-show-opens-its-19871/

 

The Kent County Show is a showcase event for farming, countryside and rural life.  The three day event brings together the very best of Kent with animals and food, fun and excitement and above all a sense of what ‘The Garden of England’ has to offer.

The Kent County Show 2014 will be on Friday 11, Saturday 12 and Sunday 13 July has something for the whole family.  Open from 8am to 6pm every day, the Show is a wonderful day out with plenty of displays, entertainment and local food.  With over 400 exhibitors and trade stands and over 300 competitions, activities and displays.

The Agricultural area of the Show boasts large displays of cattle, sheep and goats as well as a large Poultry and Egg show. Livestock competitions, sheep shearing demonstrations and modern machinery displays take place throughout the day. A visit to the Wool Tent will educate visitors on the different types of wool, allowing them to feel each of the fleeces on display. The impressive display from Kent Young Farmers Clubs can also be found in this area, showcasing all the animals from their farms. These dedicated students take part in animal judging classes and fun classes such as fancy dress and It’s a Knockout.

I have to admit that as it is only down the M2 from here I have never been. Mainly I have always been away at a Rally somewhere but since my illness the thought of strolling around in all the mud does put me off a bit.

The queue to get into the show is another no no!!

So We will stay home in the dry and I will turn out my wardrobes. I want to garden but its so wet. No wonder they say “make hay while the sun is shinning”

We had a slow day yesterday because of the weather and I repolished and re wiped everywhere. We really should go away and enjoy a few days. I do hope the weather is Ok in August as we have a lot planned.

I do work in the den though answering emails and working on Face book.

The storyline on Emmerdale is hotting  up and Donna is getting worse. On the F/B site though the question is coming up time and time again that Donna is to well. I have intervened and explained how people keep saying to me how well I look. I always answer -Its what is going on inside. It truly is one of the several illness’s that because people cant see it then it isn’t happening.

You shouldnt have to keep justifying why that is as it just is. We should always have sympathy for those people. The times someone has got out of the car when parked in a disabled bay and people have looked perplexed because they seem so mobile. They have to put a blue badge up before people believe they are parked in the right area. I do feel guilty but I do need to be near to the door of a supermarket as pushing the trolley around these vast stores and loading onto the conveyor belt, then pack my bags and walk to the car, is so tiring and Im exhausted.

Im proud of the walks I do do. Like yesterday we went to Tankerton and walked to the dogs shop to treat Louis to chews and Chocolates.

It wasn’t raining so it was great to be out in the fresh air.

We seem to be getting more and more earthquakes -

A noteworthy 4.5M (some agencies 4.0M) earthquake occurred near the shores of France in the English Channel.

Surely this was felt by residents along both coasts of England, and France.  Possibly also felt in Belgium, Spain, Netherlands, Germany, and Luxembourg.

A noteworthy 4.5M (some agencies 4.0M) earthquake occurred near the shores of France in the English Channel.

Surely this was felt by residents along both coasts of England, and France.  Possibly also felt in Belgium, Spain, Netherlands, Germany, and Luxembourg.

3.9-m-earthquake-north-sea-july-11-2014a-4.5

 

 

 

 

 

http://dutchsinse.tatoott1009.com/7112014-4-5m-earthquake-strikes-the-english-channel-france/

BBC Radio Jersey presenter Sara Palmer had just loaded up the Status Quo song when quake struck at a depth of seven miles (12km) around 12 miles (20km) west of St Helier at 12.54pm.

The DJ said afterwards: “I could see the monitors in front of me shake. It was really odd, we all looked wide-eyed at each other.”

There were no reported injuries but the tremor shook homes, frightened residents and registered on monitoring equipment as far away as Exeter, Devon – some 150 miles away.

It was the largest to hit the Channel Islands since a 5.6 magnitude quake struck right to the east of Guernsey in 1926 but its effects were much more violent.

http://www.telegraph.co.uk/earth/earthnews/10963031/Jersey-Earthquake-disturbs-Status-Quo.html

I dont think we should have Fracking as this will make us unstable even more.

Verastem

On the Mesothelioma side Bernie Banton Rod announced after talking to Verastem—-12/07/2014 – Australia
The Verastem COMMAND phase two mesothelioma trial for sufferers of pleural mesothelioma is now open and recruiting sufferers in Sydney and Perth, Australia and Auckland, New Zealand.
It will also be opening and recruiting sufferers at the Peninsula Oncology Centre, Frankston (Melbourne) with in weeks.
This trial is a ‘placebo trial’ that is open to sufferers who have only had cisplatin and/or carboplatin with pemetrexed (Alimta) as chemotherapy treatment.
To find out if you, or someone you know may be interested, is eligible and exactly where the the trials are being conducted, click on the link below, or contact me by messaging me on Facebook:
www.facebook.com/RodSmith.MrAntiAsbestos
or emailing me: angels@berniebanton.co.au

Im so pleased they will have this trial available as it is doing very well. Although 2 friends that have been on it have had it cancelled but maybe they were on the placebo. I hate that as it does waste our valuable time that we havent a lot of.

Verastem, Inc. (NASDAQ: VSTM) is a clinical-stage biopharmaceutical company focused on discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells. Cancer stem cells are an underlying cause of tumor recurrence and metastasis. Verastem is developing small molecule inhibitors of signaling pathways that are critical to cancer stem cell survival and proliferation: FAK, PI3K/mTOR and Wnt.

They are a very dedicated Company and they held their annual Research and Development Day

CAMBRIDGE, Mass.–(BUSINESS WIRE)–Jul. 10, 2014– Verastem, Inc. (NASDAQ:VSTM), focused on discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells, today hosted its annual Research and Development Day at the Hudson Theatre in the Millennium Broadway Hotel in New York City.

“We continue to see promising clinical signals from the VS-6063 program,” said Dr. Joanna Horobin, Verastem Chief Medical Officer. “An additional partial response has been reported since our interim report at ASCO on the combination of VS-6063 and weekly paclitaxel in twenty-two patients with ovarian cancer. To date, best clinical response of at least stable disease has been observed in 14 of the 22 patients (64%). This comprises two complete responses, three partial responses and nine patients with stable disease, including four patients whose disease has been stable for 6 months or longer. Eight patients continue on study drug. Based on this encouraging activity, we are planning a controlled Phase 2 study in patients with platinum resistant ovarian cancer.”

Members of the Verastem leadership team provided in-depth reviews of the Company’s development programs targeting cancer stem cells with a focus on lead inhibitor VS-6063. VS-6063 targets cancer stem cells through the inhibition of focal adhesion kinase (FAK). The review of Verastem’s clinical programs included a presentation of clinical and preclinical data obtained to date, updated development plans, guidance for key upcoming milestones and commentary by guest speakers.

“It is well known that in patients undergoing cancer treatment, tumors often become resistant to standard therapies resulting in disease progression. We believe that cancer stem cells are an underlying cause of this failure,” saidRobert Forrester, Verastem President and Chief Executive Officer. “By targeting cancer stem cells, we want to change the way that cancer is treated. We have made significant progress in the past 12 months and have continued to further scientific understanding with all of our product candidates. Encouraged by these initial signs of clinical activity, we are adding additional studies to further test our hypothesis that the targeting of cancer stem cells may enable a more durable clinical response.” http://phx.corporate-ir.net/phoenix.zhtml?c=250749&p=irol-newsArticle&ID=1946624&highlight=

About COMMAND

COMMAND is a registration-directed, double-blind, placebo-controlled trial of VS-6063 with PFS and OS as the primary endpoints. VS-6063 targets cancer stem cells. Cancer stem cells are an underlying cause of tumor progression and recurrence. The design of COMMAND allows the opportunity to enrich for patients with tumors low in the biomarker, merlin. Preclinical and early clinical research has demonstrated that low merlin levels may be predictive of increased effectiveness of FAK inhibitors such as VS-6063. The COMMAND study stratifies patients to evaluate the effect of VS-6063 in both the overall patient population and the subgroup of patients whose tumors are low in merlin.

COMMAND is expected to enroll approximately 350-400 patients at clinical sites in 12 countries, including the US,UK, Japan, Australia, Canada, South Africa, New Zealand and countries in mainland Europe. Eligible patients who had a partial response or stable disease following standard first-line therapy with platinum/pemetrexed will be stratified to merlin low or high and then randomized to receive either placebo or 400 mg of defactinib. For more information visitwww.COMMANDmeso.com

Rays Blog http://mesoandme.wordpress.com/2014/07/11/friday-97/

http://onestopmesothelioma.co.uk/

Yesterday was one of those so boring days. We couldn’t believe that we were so cold and grey here in the South and the NE was saying it was the hottest day of the year. We are such a small island -its so crazy.

Trial wise it was a good day even though I had the shivers up my back and I had to keep taking the tablets but after what all the other Warriors on Chemo and suffering with sickness and loss of appetite and that metallic taste in their mouths this really is a walk in the park.

I slept in the afternoon woke up and took the dog for a walk came home and dropped off again.

Still at least I was snacking.

Today we have woken up to even more rain.

Rays Blog http://mesoandme.wordpress.com/2014/07/10/thursday-94/

After a very boring cold wet day my Facebook world got exciting when Richard Clarke messaged me to read Sarina van Ruth’s Blog for  Asbestos Justice article on Armley and the History of Asbestos.

 http://www.asbestosjustice.co.uk/armley-uks-deadliest-town/

June

I was able to find June Hancocks Video of Dust. I put the blog on Mesowarriors Article Page and  Sheila Andrews said  we saw a play about this in Leeds several years ago, people dying from this mystery disease, ironic really, when they diagnosed mike, he knew exactly what meso was because of the play.  mike remembers that it wasn’t actors playing the parts it was relatives of those who had died, strange i cant remember this play and i usually have a brilliant memory, he never remembers anything but can distinctly recall the whole of the play even though he ad absolutely no idea he was going to be struck down with this dreadful disease-strange isnt it?

Sarina has put the video into  the blog

June Hancock, born in 1936, was a little girl when she was first exposed to the deadly dust. She had lived only a mere 250 yards away from the J. W. Roberts factory.

Her mother, who too past away from Mesothelioma in 1982, used to run a small corner shop at the bottom of the road. June’s memory of the dust was like any other child in Armley:

I have played a tiny piece thanks to Richard in a really great write up that will go down in Asbestos history.

armley

 

 

 

 

 

In 1874, a small town in Leeds saw the opening of its first large three-story factory on Canal Road, Armley. Hopes were high and employment was up. Yet the residents of Armley were none the wiser about the danger that loomed at the top of their roads.

A danger that sprinkled its way onto the streets of Armley, the homes of families and into the lungs of the innocent.

The People of Armley

Home to some 1500 residential houses and the population of 6,734 in the 1870s, Armley’s residents found themselves living next to what would be the biggest killer of Mesothelioma in the UK.

The nearest school located to the factory was the Armley Board School (later to become Armley Council School, and referred to by the locals as “The Clock School”. The school was built in 1878 at a cost of £13,108 and its clock tower became a “local land mark”

If you only read one blog on Asbestos in your life– read this as it is brilliant and so informative.

 http://www.asbestosjustice.co.uk/armley-uks-deadliest-town/

Sarina writes on facebook

Finished my very first huge research article for work! Very proud of it, so if you have time, have a read.

It’s shocking and saddening, researching more and more about Asbestos and Mesothelioma has opened my eyes to this huge hidden killer. Something that is STILL LEGAL in the USA.

PS I have found Dust

Yesterday was a day of booking things up. Planning August. Its easy now I know every other Monday is a no no because of traveling to Marsden. I now work around that.

We Meso Warriors have a meet up arranged in the Holiday Inn at Cheltenham and although I said I would go I increasingly didnt want to put Louis into kennels again. Those that know my very nervous dog no he is spaced out by other dogs and just loves his own company.

Talking to my Son yesterday he said don’t be silly we will have him, all the dates are on my calender , all sorted.

So we booked the hotel for the night and its all sorted.

It will be great to meet up again and have a mad time, lots of photos will be taken thats for sure.

Modern Hotel Ideally situated in Cheltenham Town Centre

They don’t know what is going to hit them as there is one thing we warriors do well and thats to party.

Yesterday was a weird day weather wise. It has gone cold and windy so we worked in doors. I did do a bit of weed pulling in the garden but it wasnt very nice out there.

I got the ironing board out and ironed Rays trousers. I normally dont do much ironing as I dry cloths in a dryer and hang straight up and store in the airing cupboard where all the creases fall out but rays thicker trousers do look better for a good ironing.

We did go shopping as I keep running out of something.  Ray took Louis for a walk as I went in to the Supermarket and I had a Chemo moment and couldnt remember my pin number. I walked round the shop and it came to me again. Thank goodness that could have been embarrassing.

Came home and I zonked out again. not to long though. They are getting like a power nap as I wake up and can do something around the house. Mainly cooking a meal Its on thing I have not lost my appetite. That is a great really as so many Warriors do loose theirs and have to have special drinks etc etc .

On face book I shared  —-The research has found that often: kids who eat family meals together are more likely to do well in school, make healthier choices, feel more connected with their families, sense that their parents are proud of them, and have a more positive outlook on life.

In their book The Hour that Matters Most, Les and Leslie Parrot state:

Study after study shows that the more often families eat together, the less likely the kids are to smoke, drink, do drugs, get depressed, develop eating disorders, become overweight, and consider suicide.

Read more at http://kirkcameron.com/eating-together-family-important/#r4CDIq1VBAIh6dub.99

I was only thinking that on Coronation Street last night David was draped over a settee eating a piece of bread i a really horrible way and I thought then thats what is wrong with children today. They have lost the sense of manners learnt at the table. We always sit to the table and always have done. We chat as a family about what day we had. Table manners are so important all through your life as you entertain or eat out. Then Misty put that on her wall -I just had to share.

There is a strike going on today that will cause chaos.

GMB members across the country will be taking part in a one day strike to protest about a derisory pay offer of 1%.

After 450,000 job loses in local government and a pay freeze which has reduced wages by 18% in real terms, council staff are now being told that they are unlikely to see their pay match inflation before 2018.

We will have to see what happens.

A motorhome forum I belong to had a great question about Asbestos exposure

My son-in-law was telling me yesterday that last year he received a letter telling him he had been exposed to asbestos on a previous job he was on.

Apparently the job had been surveyed and passed as being clear of asbestos and it was only found out later that this was wrong. Now he says he’s been told he can’t sue unless he contracts asbestosis, which seems wrong to me, anybody know if this is correct?

It appears many people are now getting a similar letter.

Im amazed that after all the work we do to raise awareness that the facts are not right.

No one can sue for Asbestosis only Mesothelioma. Many answers were saying how it isnt dangerous. I added as much as I could to the conversation but I didn’t want to sound like I was preaching. It is hard when you know the facts and others don’t.

I have given so many links, I bet people wont read, but hopefully when the problems crop up through the years  someone will remember what I wrote.

I was amazed at some replies that said they have lost fathers to the disease. So many do know what its like to have Mesothelioma in the family.

New figures from the HSE show the number of people killed at work in the construction industry fell last year but deaths from mesothelioma, a cancer caused by exposure to asbestos, continue to rise.

Last year there were 42 fatal injuries to workers in construction, lower than the average figure of 46. The latest rate of fatal injury is 1.98 per 100,000 workers, compared to a five-year average of 2.07.

However, the HSE statistics showed the number of deaths from mesothelioma has increased – 2,535 people died of the disease in 2012, up from 2,291 in 2011.

http://www.link2portal.com/fatal-injuries-construction-decrease-asbestos-exposure-claiming-more-lives

Lou Has written in her blog in Australia –

14 July 2014 PGARD (Parliamentary Group on Asbestos Related Diseases) have organised a luncheon at Parliament House, Canberra for various party politicians to be present.   Also ASEA (Asbestos Safety and Eradication Agency) are also supporting this important event to raising awareness about the dangers of asbestos.  I have been invited to be a keynote/guest speaker.  It is an honour to have been asked and I am looking forward to this event.

We know she will do a great talk and they will listen to her.

http://asbestosaustralia.blogspot.co.uk/2014/07/i-am-off-to-canberra-as-keynoteguest.html?spref=fb

I love the way we all work so hard for Awareness around the world. We have found our voice and we use it I hope they listen to us we can really make a change.

Mind you she has delayed her Chamo to  be flying up on Sunday afternoon and staying with good friends for the night rather than an early flight on the Monday morning that could leave me feeling exhausted and a bit short of breath.

I hope she stays safe and thinks of her own health first.

Well breakfast is calling, the skies are a very weird colour that green tinge where you know the heavens are going to open.

rain 2

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