Living With Mesothelioma -My Diary- Horses, Scan And Jeremy Vines Show.

When Ray took Louis for a walk he meet the horses in the field that he always talks to. Louis doesnt take any notice of them

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The white one doesnt leave the taller brown on alone for a minute always nipping and licking.

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Such cheeky things Ray would love to feed them but your not really supposed to , are they really happy out in all weathers??

I had to keep busy as my scan appointment was 4.30 but Ray wanted to set off. We had to try and find somewhere to park after traveling to Margate hospital. We parked in the staff. we didnt mean to but they have been remarking the car park and putting new paying stations in. They have left old signs up so what we thought was visitors car park was actually Staff so we crossed our fingers had hoped we got away with that.

Then when we went to the CT Scan room err they have rebuilt it and expanded the size. It is very nice. I was told I should have gone to Canterbury doh!! I couldnt make out why I had done that but checking  my letter it is raised by Margate now as they make the appointments at the hospitals for all the scan in East Kent. So their address is on the letter but I was so interested in when the scan was I didnt concentrate, on where. The nurse said its been happening a lot so they are fitting me in.

So I sat and waited.

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I got the robe and dressing gown on, I wonder why Margate makes you dress up like a nerd and Canterbury does the scans in my trousers and tops??

There was a lovely couple next to us laughing and messing about they made us smile. He was a kind man. I thought the lady was his daughter but while I was in getting my scan down she was asking Ray what was the matter with me and Ray told her everything. He doesnt talk that often about it but now and again he pours his heart out. She was amazed at all the things I was doing to get Asbestos banned fully. He has passed my card to her I hope she does get in touch as she was very nice.

The scanner was brand new in a brand new room. Very impressed.  I had to go into head first, that was a change.  It seemed very small as you go up high into the doughnut and it passes over you body. The contrast went in my vein and it traveled warm and tingly around my body with a taste in my mouth also. All the Breath in -hold-breath out was done I was lowered down and I went back to have the canula taken out.  The nurse started to tell me they had a man in the morning but he had thickenings so he was ok. She said her father in law had died with Mesothelioma at 41 so she knew all about it. We had a long chat as she drew out the long canula and I held he pad as she stuck a plaster.  Isnt funny nearly everyday someone different talks to me so how is it rare.???

This link will last for 6 days but Jeremy had a discussion about Mesothelioma today

For 25 years, she dedicated herself to educating children.

A passionate teacher, Marion Potts proudly pinned her pupils’ work to her classroom walls.

She had no idea this simple gesture was exposing her to asbestos that would eventually lead to her death.

Marion Potts was head of English at The Romsey School, in Hants,but retired two years ago due to ill healthMarion Potts was head of English at The Romsey School, in Hants,but retired two years ago due to ill health 

The 63-year-old, who had worked at numerous schools across the country and abroad, died in June from mesothelioma, a cancer associated with the toxic substance.

An inquest heard the only place she could have been exposed to it was at school, where it can be released from walls in older buildings when displays are put up with drawing pins.

Mrs Potts, known to friends as Jane, is one of more than 140 UK teachers to die from mesothelioma over the past decade, leading to calls to remove asbestos from schools. At her inquest in Southampton, coroner Keith Wiseman said: ‘Mrs Potts particularly mentioned a variety of occasions – such as basic matters like putting up a display with drawing pins – where this material would come out of the walls or when they were damaged by pupils.’

Recording a verdict of death from industrial disease, Mr Wiseman added: ‘I hope all the necessary steps are taken in the future to ensure the elimination of this substance.’

Marion Potts last worked at Romsey School in Hampshire which has been declared safe by Hampshire County Council. It is not known where she was exposed to asbestosMarion Potts last worked at Romsey School in Hampshire which has been declared safe by Hampshire County Council. It is not known where she was exposed to asbestos
Marion Potts was head of English at The Romsey School and was described as 'passionate' and 'caring'Marion Potts was head of English at The Romsey School and was described as ‘passionate’ and ‘caring’ 

The inquest heard it was not known at which school the teacher was exposed to asbestos. She retired from her most recent position as the head of English at The Romsey School, in Hampshire, two years ago after falling ill. Before that she worked at the New Forest Academy in Holbury. But education bosses insist that both Hampshire schools where Mrs Potts worked are safe.

Only last year an all-party Parliamentary group warned that 75 per cent of schools nationwide expose children and staff to asbestos. Mrs Potts’ husband Michael, 63, a retired banker, called for it to be removed from schools immediately and said he was considering legal action.

Around 2,500 people died from asbestos related illnesses in the UK in 2008 with millions thought to be affectedAround 2,500 people died from asbestos related illnesses in the UK in 2008 with millions thought to be affected 

He added: ‘You usually associate the disease with dockers or those working in industrial jobs, not teachers. These buildings are 50 years old and asbestos will come out because kids are always running around, banging into things and people stick things into the wall. She was never made aware of these dangers.’

Former colleagues described Mrs Potts as ‘dedicated and passionate’.

Jonathan de Sausmarez, executive head at The Romsey School, said: ‘Jane was a very good teacher, very thorough and very professional. She cared very much for the students.’

Hampshire County Council leader Roy Perry said the authority had been ‘managing’ asbestos in schools since 1997. He  added: ‘We inspected all asbestos-containing materials at the New Forest Academy in August and can reassure staff, governors, parents and pupils that the school site is safe.

‘Romsey School will have been checked by the council from 2005 onwards, prior to becoming an academy, and it would have received a clean bill of health as we are not aware of any problem there.’

Asbestos was widely used in the UK as a building material up until 1985 when the use of most types was banned. It was completely banned from new buildings in 1999.

The toxic material is closely associated with Second Consortium of Local Authorities schools, which are prefab buildings developed as a temporary measure in the 1960s in response to the baby boom.

National Union of Teachers  representative Pete Sopowski said: ‘There’s a huge problem in schools. It’s a case of which schools don’t have it rather than which do.’

Read more: http://www.dailymail.co.uk/news/article-2514958/Caring-teacher-died-exposed-asbestos-hanging-pupils-work-contaminated-classroom-walls-25-years.html#ixzz2m4Seept7
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http://mesoandme.wordpress.com/2013/11/29/friday-74/ Rays Blog  for today

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Living With Mesothelioma- My Diary- Happy Thanks Giving to America

Photo: Happy Thanks Giving to all our friends over the pond :)

All our American friends are celebrating Thanksgiviing

The idea of creating a formal national holiday originated with Abraham Lincoln. In an 1863 proclamation – amid the still-raging Civil War – Lincoln designated Thanksgiving to be celebrated on the fourth Thursday of November. Decades later, Franklin D. Roosevelt moved the holiday up a week, to the third Thursday of November, in part to lengthen the amount of time for holiday shopping. Some states still insisted on celebrating Thanksgiving on the last Thursday, so eventually Congress stepped in. On Dec. 26, 1941, less than a month after the attack at Pearl Harbor, Congress passed a law declaring the fourth Thursday of November as Thanksgiving Day

http://www.usatoday.com/story/news/nation-now/2013/11/26/thanksgiving-traditions-history/3709209/

It seems so much turkey is eaten this time of year, thank yourlucky stars you wasnt born a turkey ha ha !!!

We have had a nice day just relaxing this morning over a late coffee as I overlaid. I made a lunch after we had tidied up and dusted. I have a Dyson hoover but I also have a cylinder vacuum which I use with my flowby and so as I had cut my hair yesterday it was in the home as I didnt return back to  the shed. Oh boy I love using it around the rooms, poking it under everything and at the back of everything it sucks up every bit of fluff.

I always put it away feeling I have got every bit of the enemy –Dust.

hoover

 

 

 

 

 

 

Ray wanted to go up the post office to post some more of my cards  and presents  so we went to Tescos first where he walked the dog around and I  went shopping as we had run out of milk. The shop was full of School children and they were just walking from the booze which I thought was suspicious but when you think about it children stay on longer now at school and  college so they are probably old enough to drink in school uniform.

We came back to the post office and Ray went in to post our parcels.

Home again and was glad to get the kettle on and  a piece of fruit cake, that was it a little nap and then dinner had to be cooked.

Rays Blog http://mesoandme.wordpress.com/2013/11/27/wednesday-67/

Our fight has now gone Global at last we have got through http://workinglife.org.au/2013/11/27/fight-against-asbestos-goes-global/

Rod sent me a good link today 

LAOS is a quiet, mostly rural South-East Asian country that is just starting on a path to industrialisation – but it is growing quickly.

The construction industry is booming and the economy is growing over 8% every year. The workers in Laos’ busy roof tile factories, however, have no idea they are working with a killer.

In Laos, asbestos is being used mainly in the production of roof tiles and concrete pipes. Laos is a relatively recent user of asbestos, but consumption is rising rapidly and could reach 9000 tonnes a year. It is handled, stored and transported with little concern for exposure to its deadly fibres.

The asbestos industry is promoting asbestos in developing countries as a cheap and useful building material, just as it was once promoted in Australia. Workers, their families and communities are being exposed to this deadly hazard without knowing it can kill, not only in Laos but in Vietnam as well.

Union Aid Abroad-APHEDA (APHEDA) is working to change that.

As the overseas humanitarian aid agency of the ACTU, APHEDA has been working with both the Lao trade union and relevant government ministries since 2010.

Sounding a warning

“We are sounding the warning,” said APHEDA’s Mekong Regional Representative Phillip Hazelton,  “to workers and communities to put banning asbestos on the national agenda, and also help Laos do the long-term thinking on the real costs  of continuing to use asbestos.”

In July 2013, this work took a big step forward through a national conference of key ministries which kicked off the development of a Laos national strategy and helped Laos learn lessons from experiences in Australia, Japan and Thailand.

APHEDA, with funding support from what was then AusAID as well as unions in Australia, supported the Lao Ministry of Industry and Commerce to organise the conference titled Working Towards a National Strategy on Asbestos in Laos.

Asbestos-Vietnam-500pxWorkers monitor noise and dust levels in a roof tile factory in Vietnam.

Participants included high-ranking government officials from eight related ministries; the Lao trade union; the global union Building Workers International; international academics and experts from Japan, Thailand, and the Asbestos Diseases Research Institute in Sydney; the World Health Organisation; the Australian Ambassador to Laos, Lynda Worthaisong; Union Aid Abroad-APHEDA; the Asia Ban Asbestos Network; and AusAID.

The two-day conference, the first of its kind in Laos, discussed asbestos exposure risks for workers and communities, including mesothelioma and asbestosis.

The conference heard lessons from Thailand’s work towards banning asbestos use; medical statistics from Laos; the Japanese and Australian experiences and subsequent bans; and about the hundreds of thousands of people who have died or will die of asbestos-related diseases around the world.

It was the first time many of the participants had heard of the dangers of asbestos. Even the Lao Federation of Trade Unions had only become fully aware of the dangers after the APHEDA program commenced in 2010.

Total ban on asbestos

In the opening speech to the conference, the Deputy Minister of Industry and Commerce, Khemmany Phonsena, spoke about learning from the mistakes of others and finding alternatives before the problem got worse.

By the end of the conference, many officials had embraced the idea of an eventual total ban on asbestos – despite initial concerns over costs of replacement construction materials. A report from the conference will go to the full Cabinet of the Lao government.

The future health costs of continuing asbestos use in Laos will be extensive. It often takes 20 to 40 years after asbestos exposure for health problems to emerge, and, until there is a ban on asbestos, many Lao workers, their families and members of their communities will continue to be exposed to the risk of inhaling dangerous asbestos fibres and the risk of asbestos-related diseases.

Worker training, as well as awareness programs for surrounding communities, is now planned or underway in the ten asbestos roof sheet factories identified by the project.

Policies and regulations for restricting and eventually banning asbestos are being considered. It may take years to eradicate this hazard from the Lao environment, but acting early will save many lives, save future health and clean-up costs, and build healthier, safer workplaces.

 

Living With Mesothelioma -My Diary- Meet up with an old friend but said goodbye to

Yesterday was a cold day although bright sunshine. The winter sunshine is always very bright and it loves showing up the dust. So I pull the curtains.

It is dangerous when it shines in your eyes as your driving.

I manged to tidy up and make the bed as Ray took Louis  out for a walk. Ray tells Louis lots of stories and Ray reckons the dog really knows what he is telling him.  Yeh! right.

We had to wait for a phone call from Russell to say he had finished riding the Ferries. He loves Ferries and the rougher the water the better .

Photo: Snackettes round two. Still the finest brekky afloat even though she's an old girl.

His breakfast

russell at sea

Just as I was dropping off after Lunch the phone went making us jump. Russell was on the C&CC sit at Canterbury. So we got ready -My hair is driving  me mad as this last chemo seems to have thinned it right out and has gone very straight.

We got to the Site and I could see Russell in the Reception doing what I know Russell does best, talking  he is so friendly.

I could see he didnt recognised me at first. The last time was 3 years ago when I was energetic and now Im very Chemotised.

http://www.youtube.com/watch?v=l0qh9nLpZZE

But gradually it came to him who I was and a happy welcome followed.

We went to his Motorhome and as we walked through I was amazed at how many People there were. Camping in cold weather but just a walk away from Canterbury High Street.

Christmas shopping being done having a good time.

His motor home was lovely and warm.

russels van

Such a big one to drive round our roads.

Ray went and bought fish and chips and it smelt lovely  mmmm!!!

fish

It tickled Ray that Russell put his between 2 slices of bread.

mavis

We carried on laughing and joking and the time just went. So time to say goodbye and walk back to the car and said we will meet again 2014 so I will look forward to that and it has been a good day xx

candle 2

Lauren Mellor has lost her lovely grandad Arthur Whitt after he was diagnosed with meso in May of 2013 and sadly lost his battle on Tuesday 15th October.2013. RIP Arthur and love and hugs to Lauren and her family . Such a small length of time from Diagnosis to his passing so it really must have been aggressive.so sad

Lauren made the papers and had a  lovely write up.

THE granddaughter of a man who died from a rare form of cancer is trying to raise awareness of the disease.

Lauren Mellor’s grandfather, Arthur Whitt, died in October after being diagnosed with mesothelioma – a form of cancer caused by exposure to asbestos.

There is no cure and it can lie dormant in the lungs for up to 40 years before presenting itself.

Mr Whitt, a painter and decorator, was a fit and healthy 76-year-old who still enjoyed playing walking football when he was diagnosed. He lived only five more months.

Now, Mr Whitt’s family are raising money for Mesothelioma UK and the British Lung Foundation – as well as setting up the Arthur Whitt Foundation to raise awareness of the disease.

“We hadn’t heard about it before May of this year and not many other people know about it either,” Lauren said.

“It is very rare and there are not many cases of it.

“Sadly, there will be more people diagnosed and there is expected to be a boom in the number of people diagnosed over the next few years.”

She added: “We are a close family and we are grieving for a great loss. He has left such a legacy behind and a strong family unit. As a family we are now aiming to raise awareness of Mesothelioma.

“I am in the process of setting up the Arthur Whitt Foundation with the support of the family to offer support to other families that will be affected.

“I want to be at the end of the phone or e-mail to help other victims and families.

“I’ll be able to offer support from experiencing it at first hand.”

Lauren and her family donated money given at Mr Whitt’s funeral to Mesothelioma UK and Lauren will be running in the London Marathon next April to raise money for the British Lung Foundation.

Jill Lemon, fundraising and marketing manager for Mesothelioma UK, said: “We are very grateful to Lauren and her family for choosing the charitable trust to support, and the donation they kindly made will go a long way in helping us to continue to do the vital work we do for mesothelioma sufferers and their families.

“It is also commendable that Lauren, supported by her family, wants to raise awareness and help to support others with this disease.”

Professor David Baldwin is clinical lead on mesothelioma at Nottingham’s hospitals.

He said: “It’s one of those diseases that is very distressing. There is treatment but there isn’t a cure.

“It’s due always to asbestos exposure of some sorts. The funding for research has been quite poor because it’s a less common cancer.

“There are just over 2,000 cases per year in the UK and in Nottingham we see around 40 cases a year. It’s a real problem because it causes a lot of suffering in people.”

He added: “If we want to make a difference, we need to do research and to do that we need more funding. More money would be very important.”

To donate to the family’s charity efforts go to

http://www.nottinghampost.com/Lauren-s-marathon-aim-fight-disease-killed/story-20089286-detail/story.html#ixzz2lq9ZahLN

candle 2

And then we had to light a candle for John Wisdom we do seem to get a few together like this –and they still say its rare for goodness sake.

John was walking around in the hospital just a couple of days ago that always amazes me that Warriors are so with it right up to the end and then they are snuffed out just like a candle,

Jennifer I send all the family a hug xxx

 

Ray hasnt done a blog but he has done a big one he said so look forward to reading that.

Living With Mesothelioma -My Diary- More Christmas presents wrapped -Another Mesowarrior has lost the battle XX

A very cold day out today even though the sun was beaming down. I thought I was staying in to tidy around and cook lunch but Ray suggested going to Sturry for me to buy my Christmas Cards as we are going to a C&CC  Christmas dance and we have so many friends going that I need quiet a few.

We walked Louis round when we pulled up in the Car park to The Range. He loves a little round walk that we do there , so we had a happy dog.

I found their Christmas Cards and another Present. The shop was all decorated for Christmas I love that.

We came home and wrapped more presents that have to go by post. So  another job out of the way.

I had a message from a friend who is travelling on lots of Ferries in a few days just to see how many he can ride. So he is at Dover and we will meet up tomorrow. It has been a long time since I did the can  can with him at the Canterbury golf club now I dont think I could walk there from C&CC site. We will see. xx

Photo: Lol :D

Love this on my Facebook he he !!!

I have this as well a great song for this time of year xx http://www.youtube.com/watch?v=EvDxSW8mzvU

Oh sad as Im writing this we have had a message that we have lost another Warrior — Ron Bonfield on Saturday evening who many of you know was diagnosed with meso approx Dec 2008 and given approx 12-15 months. He was treated by Prof Vogel with great results and until funding was ceased he had greatly benifitted both in extension to his life and quality of life. His family wish to say thank you for all the support they received over the last few years and to remember the key role Debbie Muvmuv Brewer played in supporting him. He was an honest, decent , family man who never was self pitying and remained positive. He will be sorely missed by all those who were lucky enough to know him xxx RIP much love to his family at this time Dawn

My Candle is lit tonight

candle 2

Rays blog  http://mesoandme.wordpress.com/2013/11/25/monday-65/

Living With Mesothelioma -My Dairy- Lazy days – Talks and warning of Asbestos in foreign toys !!

Weather is defo getting colder but I did manage a good walk yesterday with ray Dog and walking stick. I dont need it until I have walked past the shop and then I can feel the legs going on a wobble. by the time I got to the back door I was walking on jelly. ha ha !!  I stand in then and I had done the washing and collected from the dryer. I love the smell of newly dried sheets so they have gone under the bed waiting for me to use again soon.

I love getting into the bed with clean sheets wrapped around me . Ray had helped me to change them I couldnt wait to climb in and sink into the cosy bed but I finally did that after watching come dancing and X Factor .

On the whole and as long as I stay  in doors Im doing well. Tablets keep the pain at bay and I try and shut it all out -thats not easy though as i care what is happening to the other warriors.

Tess is doing so well on 3rd line and the drain out so she is really happy and enjoying little mini breaks.

Steve Wride is also doing so well and is coming up to another scan soon so hope he has a great result. In the mean time he lives a crazy life, so busy I get tired just reading Lindas  blogs.

http://doingsomethingpositive.blogspot.co.uk/2013/11/alls-well-that-ends-well.html

We have been having hits on our pages from Lawyers -the Ambulance chasers. We have to be very quick to stop them. There is to much Money attached to Mesothelioma. Everyone wanting to make money out of us. We have top lawyers that work for us and do a no win no fee type  investigation.

I dont know if this will change when the New Bill comes in but it is before the House of Commons again  The date of the Meso Bill has been scheduled for 2 December.  That will be its Second Reading (first stage of debate).  The Committee (where it goes through each clause) will follow shortly after.

We shall see what happens then.

A battle we seem to be winning is the one we backed  Lord Saatchi  when his wife died and he wanted these changes after his wife died.

Good news is always welcome http://www.telegraph.co.uk/health/healthnews/10469356/Law-may-change-so-doctors-can-test-new-drugs-on-patients.html

Allowing doctors to test innovative drugs on patients without the fear of being sued would be a “huge stride forward” in the quest to find cures for cancer, Lord Saatchi said yesterday.

Jeremy Hunt, the Health Secretary, is considering changing negligence laws to make it easier for doctors to make medical breakthroughs.

Lord Saatchi called for the changes after his wife, the novelist Josephine Hart, died, aged 69, of rare ovarian cancer in 2011.

http://www.skynews.com.au/national/article.aspx?id=927395

I have to pass on this warning as it comes to Christmas that toys from China must be looked at careful

My dear friend in Australia did say —Rod Smith Good Morning (here) Mavis, this toy may not be available in the UK, but as it was/is? being sold online who would know. Asbestos in toys is a never ending problem. The Chinese love the stuff, mufflers in kid’s motorbikes, brakes in remote controlled cars etc are just some of the worries!

So yes we have Relations in Aussie who might send the toy or we buy on ebay or Amazon –we have to always keep an eye out .

—-A magic toy sold at the Royal Melbourne Show and online could expose consumers to potentially deadly asbestos fibres, authorities are warning.

The Australian Competition and Consumer Commission (ACCC) says so-called fire wallets, which look like regular leather wallets but produce a large flame when opened, have been sold as novelty or magic props.

The ACCC tested a small number of fire wallets after receiving a complaint from a member of the public, and discovered some contained asbestos.

‘The wallets were sold by an eBay trader and at a stall at this year’s Royal Melbourne Show,’ the ACCC said on its website.

‘Consumers are warned that these fire wallets may contain asbestos and therefore may be hazardous.’

The eBay trader, All Media Collectables, has told the ACCC it has recalled the fire wallets and plans to contact all affected customers.

Anyone who has purchased one of the wallets has been warned to double-bag it in durable plastic bags, store it well out of reach of children, and contact the ACCC for advice about safe disposal.

iatp speech

Christine Winter made a very stirring speech at the DAST meeting on friday Christine is trying to get the Awareness to . Mr and Mrs  Public. I think this is the way to go Pye charts and figures dont sink in to the ordinary public. We dont want to scaremonger either but they need to know that asbestos is around today and it seems to by more dangerous as ever as we are hearing of children as young as 8 so it doesnt even have time to sit the festering like It did with me-It was 30/40 years but something is hap penning and people are dieing  sooner.

Christine’s speech ————-

I share it here IATP Speech at DAST Conference yesterday Good Morning Ladies & Gentlemen. My name is Christine Winter and I am here today representing the Independent Asbestos Training Providers – IATP.
IATP is an umbrella organisation for companies that deliver asbestos training; presently IATP represents 90 individual training companies.
Since inception in April 2009 IATP has recognised that we as an organisation have a responsibility within the sector to raise asbestos awareness and demonstrate that we as part of the asbestos industry sector have a social conscience and contribute to organisations who work with, support and care for those impacted by exposure to asbestos.
You are all aware of the devastating effects of asbestos exposure and I am not going to go through well known facts, figures and statistics, the focus has to be on a global effort to Ban Asbestos, ,mining, export and use of in products, Education / Training is vital for the prevention of exposure. We are very lucky in the UK, our legislation and regulations dictate the standards required for asbestos training. This protects our work forces, however there is no legislation covering Mr & Mrs Public, homeowners. Properties built before 2000 in the UK have the potential to host asbestos containing materials (ACM’s) there is no official estimation of the number of properties ..

As training providers how can we educate the public, it is very difficult as there is no requirement or legislation covering home owners or DIY. So this year IATP Partnered with the British Lung Foundation for phase 2 of the Take 5 & Stay Alive Campaign, which is directed at the trades and the public.

To date our Members have distributed 30.000 pocket books and to their credit the meso warrior community UK and AU have been distributing in Gp Surgeries, Hospitals, Hospices, Post Offices, everywhere that members of the public use. Pocket books have been taken to the Senate USA by our partner ADAO and presented to the authorities in the Netherlands.

For the last 2 years IATP has supported DAST by hosting fund raising events, our 1st Annual Dinner, Awards and Auction took place in 2013, Casino Royale, where we mixed fun and fundraising with a serious twist.

It is important that industries are aware of the other side of asbestos, the fall out. We have a very special annual award called the Meso Warrior Award, this year it went to Mavis Nye, Mavis is 73 and has mesothelioma, she campaigns relentlessly and has released a video via the BLF called Prevention. Mavis came into contact with asbestos by washing her husband’s clothes. Our other special award is Global Impact which this year went to USA Based ADAO, Linda Reinstein. The other categories are, Industry Innovation. Lifetime Achievement. Making a Difference and Outstanding Contribution. All the awards are sponsored.

Mavis delivered a powerful speech at Casino Royale, never have I seen a room full of business men and women so moved, she stole their hearts, and importantly she changed perceptions. She is somewhat, our National Treasure.

To mark mesothelioma UK day IATP organised a sponsored balloon release to raise funds, the event was sponsored by UNITE and Thompsons Solicitors, the venue was sourced and arranged by the GMB. Our members, individuals and organisations from as far away as the USA sponsored balloons in batches of 10. A small team of volunteers from IATP and our Events Team blew up and transported the cargo from Redditch to Derby. It was a great success, well covered by the media, however all of us who participated have made a solemn vow that we will never do balloons again, it took weeks for our fingers to recover!

Our next event is the Great Gatsby in March 2014, these events pay entirely for themselves and raise funds for DAST. Importantly they bring the business community face to face with Charities, sufferers, widows and widowers. Yes we all know about asbestos, we train it every day or work in one sector or another, rarely does our sector have the opportunity to meet the reality face to face. We hope some of you will join us.

We have partnered with many organisations; our positive relationship with the UK Unions is invaluable, Charitable organisations and campaigning groups in the UK, US, AU, Netherlands. The message is the same, educate to manage it safely, work on it safely and deliver the best training to ensure safe work practises. Presently prevention is the only option available to stop asbestos exposure, IATP promotes education and training, by working together it’s an opportunity to make a bigger difference.

Asbestos isnt an appealing subject, however I would like us to take a look at how the way we communicate is changing via visuals and art.
In addition to training and raising awareness other countries are looking at innovative ways of not only involving communities, educating communities. In AU this month 4 live shows will be performed, DUST!

With powerful visuals, music, dance, participation from sufferers. You can access the trailer via You Tube. This has been driven by the legacy from Hardies Industries, much like we have a fall out from Turner and Newall and Cape, to name a few.

Another young artist has produced a powerful asbestos print called “The Female Face of Britain’s Asbestos Catastrophe” we are lucky enough to have one of the limited editions donated by Laurie Kazan Allen (IBAS) for the Annual Dinner Fundraising auction. We also have a unique piece of art work donated by ADAO. Justice has no Timeline.

Another powerful visual is “The Female Face of Meso. Dying to be heard”. From right to left. Lou Williams-AU. Heather Von St James-USA. Debbie Brewer-UK. Janelle Bedal- USA mesothelioma warriors who tirelessly campaign to raise asbestos awareness via social media and organisations, and strikingly it shows that asbestos-mesothelioma does not discriminate between young or old. Sadly Debbie in her 50’s and Janelle in her 30’s lost their fight with mesothelioma this year.

The Last Mile by Barbie Minty McQueen, another artistic visual journey of her last mile with husband Steve McQueen, who died of mesothelioma. We are lucky to be in possession of a signed copy for the 2014 auction.
Asbestos isn’t an appealing topic, engaging the arts, performers is an innovative way of engaging the public and getting the message out there.

& That is what it’s all about, getting the message out to the majority.
Together Change is Possible
Thank you for listening and Thanks to DAST for inviting IATP to attend.

Rays Blog http://mesoandme.wordpress.com/2013/11/23/saturday-70/

Living With Mesothelioma -My Diary- My Meeting was very informative today so just a peak at what I do

It was a case off get my act together and go to My Cancer Kent and Medway Network Transition Team  East Kent Partnership Locality Group. What a mouth full.

We tidied up and Ray walked Louis as I showered and dressed. We set off but what a cold wet day. Park and Ride to the hospital and we made it.

One of the ladies had made the most pretty of cup cakes. They were carrot cake with little chocolate orange carrots  on top of the cream icing.

We sat down and got on reading through the last meetings minutes , we agreed them.

Because I was having Chemo I had missed a Libary  tour it covered all of Kents medical history  and went way back.

We have a new mobile chemotherapy unit that can treat 12 patients a day. It has everything even a lift from the pavement to the door for wheelchairs -everything except staff to run it, they have got to take the nurses’s from the chemo ward. They have been training lots of staff up and I thought it was overstaffed when I went to chemo.  How wrong can you be and I know why. The unit will go to Rural places where it is hard to get transport  to hospital but they will have to go to the hospital to give bloods so I can see there are problems to iron out yet. One guy bought up the problem of chemos that have to be made just as a patient needs them -I met up with that if you remember when I was on the trial. I had to phone ahead when I was on the motorway so they would them make the trial drug up.

Then they talked about a new thing Healthwatch Kent http://www.healthwatchkent.co.uk/ and there is a UK http://www.healthwatch.co.uk/

It was explained  this will be run by volunteers . I have used Macmillan through all my journey I dont see me changing. Time will tell if they are good for the   Patient.

They have a lot of events planned so I will watch their web sites.

The Head of Equality in East Kent spoke to us about and it was bought up about A&E are swamped with the problem of drinking. We do know this but they have got to find a way to relieve A&E as it is being used for minor things that could be seen by a GP. I said about the experience when I had my fall as it never entered my head to go to A&E. I used Estuary View where a nurse was quiet capable to wash my wounds and take glass and grit out and glue me up.

He agreed but that is a special walk in hospital. I said  there are many group practices with  GP’s and treatment rooms so it could be done. —note was made !!

You can see that through these meetings with the new NHS we  cover a even wider range of NHS. Our Lung Dog meetings are taking place but they have cancelled twice this month. They are trying to find free places to hold them as they always had that option but the new NHS is saying we have to pay for meeting rooms. We are a voluntary Group and as such we have no funds.

It has amazed me how the NHS runs on charity money, like Macmillan, cancer research, and all the other funds for all the illness’s.

But they do think highly of the work we do  within our group.

The next report was about Chronic pain which we are very interested in. One point was raised and I want to pass on to you all It was raised by my colleague. When you go into hospital in an emergency have all your medication written out . A list even if you put it on your computer then if you go in at a weekend  they will know what you are allowed otherwise they can only give you paracetamol.  I think this is because pharmacy wont be open. I will pursue this further I promise.

I raised the problem of the Gold Standard Framework not being used by all GP’s under the new NHS as a GP has mentioned to a friend  there is to much Paperwork involved.

http://www.goldstandardsframework.org.uk/

It was said that they will carry this to next time as it highlights  the question who will be making sure this  is carried out.

We were also given other links http://www.mycancertreatment.nhs.uk/

http://www.drfosterhealth.co.uk/

I also bought up about Centralising information and make available to all Doctors . All the treatment they can use, and I explained what happened to me where I had to find my own Chemo,

All the trials going , as they seem to keep it to themselves and we have a hard job to find what is going on outside of our area.

That was it we all said goodbye and chatted as we walked to the front main door.

We called in at the shopping estate and Ray still cant get what he wants it is hard our way to get computer bits so he is going on line to buy them, where he should have gone in the first place.

So I popped in and topped up the freezer for the weekend.

We were so pleased to get home, have dinner and relax.

 

 

Liiving with Mesothelioma -My Diary- The weather is colder and getting colder.

A very cold day Yesterday. The rain was so heavy most of the day and the wind was raw. No way can I go out. I have been in chemo and missed all the summer and now the winter is upon us when Im free for going out –boring.

Today has been just as cold and its getting colder.

We did go out to post Christmas parcels but goodness the shock on Rays face when he came out. It doesnt go only by weight but by size. goodness knows  what 1st class will be.

I walked the dog while Ray was in the post office but I have lost confidence and worse of all so has Louis. He is so nervous as we walk.

On Tv they showed a lady with Peripheral Neuropathy  and she was in a wheel chair and had a dog to bring everything to her, I suddenly realised how I was pushing my body to be normal. I have to stop being so brave and face Chemo really has damage my nerves .

Electron micrograph of a section through nerve tissue, showing peripheral neuropathy or nerve damage. A dying nerve axon is at the centre.

If the peripheral nerves become damaged it can cause the following symptoms:

The date of the Meso Bill has been scheduled for 2 December.  That will be its Second Reading (first stage of debate).  The Committee (where it goes through each clause) will follow shortly after. So we will be in front of the Television watching the outcome.

Welsh assembly member have announced the passing of a great Bill that now we need to see passed in UK.

A bill to recover the costs of treating Welsh asbestos patients from businesses or insurers has been passed by assembly members.

It is estimated the new law could raise up to £1m a year for the Welsh NHS.

The bill’s sponsor, Labour AM Mick Antoniw, said it would help people whose lives had been blighted by “this terrible disease”.

The insurance industry has raised concerns, questioning whether the move is within the assembly’s powers.

Before becoming an assembly member, Mr Antoniw was a solicitor at the legal firm which has acted for many asbestos victims and their families.

Speaking before the bill was passed, he said: “It is only right that medical costs incurred by the NHS should be recovered from those who caused the disease and used to give more support to asbestos victims and their families – for example, a cancer nurse costs £50,000 per annum.

“We could employ an additional 20 cancer nurses or a mixture of cancer nurses and counsellors or additional research into the cause and treatment of asbestos disease.

“It is my belief this new Welsh law can make a significant improvement to the quality of life of those whose life is blighted by this terrible disease.”

Last December assembly Presiding Officer Rosemary Butler certified that the bill was within the institution’s powers, but admitted it was a “finely balanced” decision on some aspects of the legislation.

The Association of British Insurers (ABI) wrote to her and the secretary of state for Wales with a number of what it called “serious concerns” about the bill’s lawfulness.

https://rayandmave.wordpress.com/wp-admin/post-new.php?post_type=post

Another snippet
http://www.kentonline.co.uk/kent_messenger/news/the-lights-go-out-over-9071/

On December 2, KCC will begin the first phase that will eventually see 72,000 street lights turned off at midnight – and a further 2,500 streets lights turned off altogether.

The county hopes the measure will save £1m a year. The bill for street lighting is currently £5.8m per annum, but without the new policy that would rocket next year to nearly £7m with a 10% cost hike from electricity suppliers and the imposition of a Government carbon tax.

They will turn the telly off at midnight soon so we turn off our house light early.

We know they have to save money but the cost of policing the streets will rise, and accidents.

Ray s blog Please read his Medway Queen write up http://mesoandme.wordpress.com/2013/11/20/wednesday-66/