Living With Mesothelioma-My Diary-Rays Visit to the Tonometry, Horrific Asbestos Photos from Australia, and Mesothelioma Awareness at the Soap Awards

Summer is nearly here as the sun shines.

The power has been connected so the workmen are nearly finished. The hole’s still have to be filled in but at least the power is stable again.

Ray had to have his eyes tested with the pressure tester. A routine part of every routine eye exam that measures the fluid pressure inside the eye. The test is called tonometry. Increased pressure within the eye can be a sign of glaucoma, a common and potentially very serious eye problem, if it is not detected and treated promptly.

The pressure inside the eye is measured from the outside. The pressure can be measured without anything touching the eye. The patient looks up close at an instrument that blows a small puff of air into the eye and then uses a special kind of sensor (like a tiny radar detector) to detect the amount of indentation that the air puff causes on the surface of the eye. This indentation is normal and only lasts for a fraction of a second but the downside is the drops make your eyes so sensitive to daylight and poor Ray the sun was shining so he came out squinting away until he got his sun glasses on. Still he wont have it again for another year. The Doctor said that it all looked good. Ray has already had laser treatment to put holes in to relieve any pressure so its good that the op has worked.

These picture capture just how Asbestos just wasn’t treated right from the start as a health risk by the men that worked with it. They make me feel physical sick when I look at them.

Miners playing an asbestos shovelling competition in the West Australian town of Wittenham. All of the men in the image but one have since died from exposure to the deadly mineral 

The snapshot was captured in 1962 in Wittenoom, located 1400kms northeast of Perth in Western Australia. The town was the prime source of blue asbestos in Australia before it was shut down due to rapidly escalating health concerns.

Blue asbestos was used on the roads, pavements, and school playgrounds of the small rural town, wher asbestos pits were offered for children

Robert Vojakovic, the president of the Asbestos Disease Society and a finalist for the 2011 Australian of the Year award, told Daily Mail Australia the competition was a coal mining tradition.

‘It’s a tradition from coal mining towns which started in Australia. The men would race each other to see who could fill the 40 gallon drum first.’

Blue asbestos, which is be 100 times more hazardous than white asbestos, was used on the roads, pavements, and school playgrounds of the small rural town before mining stopped.

Other disturbing images show young children playing in pits of the deadly mineral, completely smothered in the blue powder.

Janelle’s family have publish these photos and it really highlights that Mesothelioma can hit any age. It is far from being just an “Old mans Disease” as so often reported.
In ADAO Interveiw Janelle said –How has asbestos changed your life? I was a 31-year-old wife with a 4-year-old son when I was diagnosed with Pleural Mesothelioma. It started with trouble breathing, pain around my left rib and a constant cough. It was a matter of weeks and I went from being healthy to fighting for my life. I was told I would not survive Mesothelioma, that there was no cure. I decided to have an EPP and I was so thankful it was a success! Since surgery, it has been a long road to recovery. I have come a long way, but I know I will never be the same again. I had a hard time getting off the pain medications and I suffered with severe depression. Some days, I could deal with the new me and other days, it was harder. I just try to continue to improve my life every day. In 2011, I was faced with the reality that the cancer had metastasized into my abdominal cavity. I had debulking surgery with HIPEC. The surgery went well. However, I then learned I was dealing with Restricted Lung disease in my only lung. I now use a BiPAP AVAPS to sleep at night. There has been a lot of hard days, but the ones in between are really great!
We lost this brave US Mesothelioma Warrior in June 19, 2013. So sad but the family continue to raise Awareness and funds for research. They are having to learn to live without our sweet Janelle xx
So many Warriors have been lost and we that wre left have to keep fighting and raising Awareness, that is why I was so pleased that in the Soap awards last night Donna received the award for best Goodbye scene.
Emmerdale: Donna's Goodbye
I didnt agree with the way they had to have her fall of a roof when they had been so great in having her die with mesothelioma. It was a waste of a better story line and the sensationalized the death.

Emmerdale fans have been rocked after Donna Windsor revealed she has a terminal illness.

Donna, who is played by Verity Rushworth, revealed she had been diagnosed with mesothelioma, a rare form of cancer.

Her condition was exposed in the episode after she was taken to hospital by her stepfather Bob Hope (Tony Audenshaw), when she admitted she felt woozy after hitting her head.

But left alone with a doctor, she said that there was nothing that the hospital could do for her and discussed her illness.

Donna, who has returned to the village with her daughter April, said: “I know what’s wrong with me and you’re not going to be able to sort it. I did bang my head, but that’s not why I went dizzy. I’ve got mesothelioma.”

After confirming that her medication sometimes affects her balance, she added: “I have regular check-ups back home. They monitor me – there’s nothing they can do, really. It’s terminal.”

Emmerdale bosses said they chose not to release details of Donna’s illness before the episode, as they wanted the storyline to play out on screen.

Oh Boy there was so much wrong with the story line but we were so pleased that Mesothelioma was being discussed so we turned a blind eye to the faults. They had shown once again that it wasnt an “Old Mans disease”

Read more at http://www.whatsontv.co.uk/emmerdale/news/donna-windsor-reveals-she-has-a-terminal-illness-in-emmerdale#QkwKmBFgmAiYRCcY.99

Living With Mesothelioma-My Diary- Hole in the road, Clinical Trials Day, and Asbestos Global Consumption 2013

Another day hope you all have a good one x

Yesterday the sun shone again and I was so happy. The scan results have been so good so I must fill my days with happy thoughts.

I spent most of the day helping in a legal question to help a friend out and we were amazed at how much help we got from nurses, doctors and lawyers.We must never hesitate and should never feel intimidated. If you have a question then ask– everyone wants to help us to understand Mesothelioma and the law.

Sitting on the computer the power of emails and messages is really huge.

DSCF9730 DSCF9731

This is all by our parking space so we have had to move the car to the visitors car park with the motor home.

It has caused a lot of interest, everyone likes looking down a hole don’t they ?

Our power stayed on all day even though the men were still trying to trace the fault.

We were able to get the car out and travel to the park so Louis didn’t have to miss his run of lead. We did have a huge down pour of rain but on the whole it was a nice bright day.

We came back and I worked away at Asbestos and Mesothelioma Awareness and help anyone that contacts me for help. The Mesowarriors are such a great band of people that become firm friends.

Most people want to know how to get onto my drug and I guide them to the University Hospitals where the trials are carried out.

Yesterday was Clinical Trial Day.

Lemonsat a vegetable market i

Lemons and other citrus fruits are crucial in the eradication of scurvy, the first clinical discovery made by James Lind in 1747. Photograph: Divyakant Solanki/EPA http://www.theguardian.com/healthcare-network-nihr-clinical-research-zone/international-clinical-trials-day

International Clinical Trials Day, is held on 20 May each year to commemorate the day that James Lind began his trials into the causes of scurvy.

Lind’s experiments in 1747 were run under very different conditions to today. He was serving as a surgeon on HMS Salisbury. His trial consisted of just 12 men, grouped into pairs and given a variety of dietary supplements from cider to oranges and lemons.

The trial only lasted six days but, within that time, there was a noticeable improvement in the group eating the fruit, providing Lind with evidence of the link between citrus fruits and scurvy.

Clinical trials have developed a great deal since Lind’s discovery, but today we remember his work and the importance of research in healthcare.

Never sit back and hesitate the trials are a great way to receive treatment use this site and just put in what ever your ailment is and there will be a trial somewhere  https://clinicaltrials.gov/

RESOURCE: Latest analysis of global asbestos trade data; majority of use taking place in Asian countries! http://tinyurl.com/kmnwa4b

One in three people living in Europe are potentially exposed to asbestos at work and in the environment, according to a report released by the World Health Organisation (WHO) at the end of April 2015.

Of the one third of 900 million European citizens who are believed to be at risk of regular exposure, nearly 15,000 lives are lost every year to asbestos-related diseases, such as mesothelioma and asbestosis.

Urgent appeal

At a large meeting held by World Health Organisation (WHO) between 28-30 April to evaluate progress on environment and health, an urgent appeal was made to more than 200 delegates in attendance.

The Regional Director for Europe at WHO said, “There is very little time left…” and called upon “… all countries to fulfil their 2010 commitment and develop policies by the end of this year that will eliminate asbestos-related diseases from the face of Europe.” WHO predict that mesothelioma fatality rates worldwide are expected to rise above 10 million within the next two decades.

Plans to eliminate asbestos disease

In March 2010, at the fifth Ministerial Conference on Environment and Health held in Parma, Italy, 53 governments from across the entire European region agreed to commit to reducing the adverse health impact of environmental threats in the next decade.

One of the first goals to be undertaken by the Parma conference attendees was for the development of plans to eliminate asbestos-related diseases by the end of 2015. By this deadline, it was expected that the majority of the members would have put plans in place, and 37 of the countries already implementing relevant policies.

Unable to reduce production

However, the reality is that those nations who continue to manufacture asbestos are unable to reduce production because of their economic dependence on asbestos exports, which also provides key employment to millions of workers. Despite of overwhelming medical evidence, some asbestos producing countries also argue that white ‘chrysotile’ asbestos is ‘low risk’ and does not pose the same danger as other types.

As a result, five years on from the Parma conference, the general view is that while progress has been made it has been “uneven” between “different countries and different issues.”

Two million tonnes exported annually

Positive steps were taken in January 2012 when a resolution was passed by the Public Health Ministry of Thailand, which called for an immediate ban on the use of white asbestos. In the same year, Canada began to stop mining and exporting white asbestos to a number of developing nations, including India and Mexico. In early 2013, it was reported that Pakistan may also be considering a limited ban.

By 2013 global asbestos production had passed 2,019,000 tonnes. Currently, 55 countries around the world have banned the use of asbestos fibres as an insulating material but still two million tonnes of the deadly mineral are mined and exported annually to developing industrial economies.

Biggest asbestos producer

Of the 16 countries who still continue to produce and export asbestos, Russia is now the world’s biggest asbestos producer, with around 1 million tonnes mined in 2012, more than twice the amount produced by the second largest producer, China. Around 90 per cent of asbestos was being imported by Asian countries 2011/13. Other high asbestos importing countries include Thailand, Ukraine and Pakistan who, between them, consume a total of 110,000 tonnes, while around 10 per cent of asbestos goes to just five countries – Ukraine, Belarus, Mexico, Cuba and Colombia.

The complete list of 16 countries that have not yet banned all forms of asbestos are: Albania, Andorra, Armenia, Azerbaijan, Belarus, Bosnia and Herzegovina, Georgia, Kazakhstan, Kyrgyzstan, Monaco, the Republic of Moldova, the Russian Federation, Tajikistan, Turkmenistan, Ukraine and Uzbekistan, according to WHO.

 http://asbestosvictimadvice.com/2015/05/asbestos-exposure-one-in-three-lives-at-risk-in-europe-say-world-health-organisation/

There are many photos of Asbestos abuse like this one from MD @ Fibre Safe Ltd (asbestos specialists)

A worker pours loose fill asbestos ‘zonolite insulating fix’ into a loft void in America. c1940
Scarey I wonder if its still in that house and what did that pour man die of ???

Mavis Nye's photo.

So all we can do is plug away at calling for a total ban and Im making in roads with the help of contacts to call for all homes to have duty of care, where a survey should be carried out to list where Asbestos is in a house to either be removed by experts or made safe. That is the thing we shouldn’t panic as we can ive alongside it if its made safe, but at least you would have the choice. Its the not knowing that is the danger to our health.

Living With Mesothelioma- My Diary- Pembrolizumab has given me MORE shrinkage Thankyou MERCK

Well good morning.

Yesterday was my Drug and scan day so it was up at 4.30 to shower and walk the dog and we set off at 5.50. The traffic was very good and we traveled straight through so we arrived at 7.30 far to early but at least we had a very welcomed cup of coffee to wake up fully.

Carol booked me in when we arrived at the ward and not long after Lorraine came to get me and take my bloods.

She phoned up and got my scan changed from 1.10pm to “come up now” Great thats just what I did. 8.30am and I was in the scanning Dept. This was going to be a good day.

The nurse came out straight away and I had my scan at 9am. She wiched me luck as it seems the whole hospital knows and was waiting for the results.

I went back to my ward and the Doctor called me in. The bloods were done and everything was great except for my creatinine levels which were high again.

The kidneys maintain the blood creatinine in a normal range. Creatinine has been found to be a fairly reliable indicator of kidney function. Elevated creatinine level signifies impaired kidney function or kidney disease.

So I have to make sure I drink more water. I know its mt failing even though Ray keeps me supplied with drinks.

I will try and drink more I promised the Doctor.

Other than that she was pleased to order the drug for me.

We went away and had a coffee and a cake. this is our usual treat at the hospital.

Back in the waiting room again we settled down for a long wait but the doctor called me in as she had the results of my scan.

MORE SHRINKAGE. WOW!!!

It can be seen even if they hadn’t measured it yet. Even more has gone back to scarring. This has never been known.

Different Doctors came and were smiling and congratulating me. It just wouldn’t sink in though.

They will do the measurements and in 2 weeks I can get the print off so I will report here as I love reading and sharing the report.

I was able to have my drug and was all finished by 2.30pm So we got off home and had dinner all before 5pm Amazing.

Except when we got home the electricity vans were in the car park and another whole had been dug. We were asked to put our car in the visitors carpark and they bought in a huge generator and parked that in our spot.

Well we didnt have enough power to run a computer last night. I thought it had blown up until Ray reminded me we are on a generator and that will only supply us with the minimum of power. Enough to run a telly and the lights kept going down. No heating –gosh you really miss it when you cant have it.

I was shattered anyway so we went to bed and I must have been asleep before 9pm.

My poor brain is exhausted with all the excitement. I will have been on the drug for a year next month. That year has flown by and Im still here. I would be dead by now but Im not so I will carry-on and report as much as I can about pembrolizumab and what happens to mesothelioma when taking it. I can keep on it the treatment all the time my body copes with it.

Lou in Australia has had good results even after 3 sessions and sh is showing what it does for Malignant peritoneal mesothelioma which type of cancer that occurs in the thin cell walls surrounding the abdominal cavity,

Lou reports — 7.30am back at hospital just saw my oncologist Significant shrinkage of dead mass and big tumour protruding into tummy!! Fantastic news looks like Mavis Nye’s wonder drug Keytruda is slowly working its magic! 3rd dose overnight today in hospital!—————— Great news !!

I hope it continues for her. It isnt on the free list in Australia so she is paying for the treatment. Well Health care is paying for 2 thirds of it.

There are many more that wish to follow her in Australia so they are watching her results. Its not a trial its being used as it is a treatment for melanoma where it has had great success, so as a last result you can go private. I dont know if you can do the same here but it is something worth looking at.

A great report here —–

The next time someone tells you that cancer drug approval is always slow, arduous, and met by huge regulatory snafus, consider this: Merck ’s Keytruda was approved by the U.S. Food and Drug Administration just three-and-a-half years after the first doses of the medicine were given to patients in clinical trials.

The rapid approval, which allowed Keytruda, also known as pembrolizumab, to leapfrog a similar drug from Bristol-Myers Squibb BMY +0.4%, is a triumph for research head Roger Perlmutter, who arrived at Merck 18 months ago and has significantly improved the company’s record of getting drugs through the FDA.

Perlmutter says Keytruda caught his attention instantly. “I’d just never seen anything like it. And fairly quickly I said to people, “You know, any one of you that’s working on a project, if you want to spend a dollar on that project, you’re going to have to explain to me why I shouldn’t be spending it on pembrolizumab. Because to me, that’s the most important thing that we can do and that will have the biggest benefit for patients.”

Instead of advancing the drug to larger studies, Perlmutter expanded the drug’s existing phase I trial , which lacked a control group of patients getting other treatments, to 3,500 patients with a variety of different cancers. The approval was based on 173 patients with advanced melanoma who had been failed by all available treatments. For 41 of them, their tumors shrank, an effect that has lasted anywhere from 1.4 months to 8.5 months. For most of the patients who responded, the tumor shrinkage has persisted.

The approval was also sped, Perlmutter says, by the FDA’s new “breakthrough designation,” which allowed Merck to be in weekly contact with the reviewers who evaluated not only Keytruda’s safety and efficacy but also Merck’s manufacturing processes.

With both Keytruda and another drug, the sleeping pill Belsomra that was approved in August, Perlmutter has been able to get medicines to market faster than analysts on Wall Street expected, smoothing over issues with the FDA and moving quickly. But the question remains of how much revenue these products can actually generate.

For Keytruda, that’s because the drug is only approved for patients with melanoma that has spread who have not been helped by other available medicines. And, thanks to a burst of new drug approvals, there are a lot of them. Five other new melanoma drugs have been approved since the beginning of 2011.

Ten thousand patients in the U.S. develop metastatic melanoma every year. Half of their tumors have a mutation in a gene called BRAF, which means that they are likely to have their tumors shrunk by drugs that target it: Zelboraf, from Roche and Daiichi Sankyo , or a two-drug combination made by GlaxoSmithKline. The other half move on to Yervoy. After the BRAF drugs fail, which they eventually do, they move onto Yervoy, too.

Only after patients have taken Yervoy will they get Keytruda, which works by knocking out a protein called PD-1 cancer cells hijack to hide from the immune system. Even at Merck’s price of $12,500 per patient per month, that is at most a $140 million market opportunity, according to Seamus Fernandez at Leerink.

Bristol-Myers Squibb’s similar drug, Opdivo, is expected to be approved early next year. More importantly, Opdivo could be approved to be used before Yervoy or with Yervoy, meaning it would leapfrog Merck’s entrant.

One big controversy that has surrounded PD-1 blockers is whether some very sick patients should get them before they have been approved. Some patient advocates say that patients should be allowed to try risky but promising medicines because they have little hope. Perlmutter is a defender of the current system.

He says:

There’s no doubt that Keytruda does have adverse events, and serious adverse events, associated with its use. And so, for people who are suffering from a malignant disease, they may say – and some do say – “Hey, look: I’ll take that risk.” But if you don’t actually know what the risk is, it doesn’t seem to me that that’s a fair proposition.

Clearly the most compassionate thing that we can do for a drug like Keytruda is to get it on the market so that a learned intermediary – a prescribing physician, an oncologist – can make the decision about whether or not that drug makes sense in a given patient. And that’s exactly the American system. That’s exactly what’s going to happen.

Screen Shot 2014-09-05 at 9.42.07 AM

http://www.forbes.com/sites/matthewherper/2014/09/05/cancer-drug-approval-is-a-triumph-for-merck-whats-next/

Living With Mesothelioma-My Diary- A power cut stops my world, Russia, Kazakhstan, Kyrgyzstan and Zimbawe blocking the adding of chrysotile to a worldwide dangerous substances list, Please send your support to the The Asbestos Victims Charter for Justice

Working away this morning answering emails and messages very happily;y when the power went off.

Oh dear! err how do I make a cup of tea, no kettle as that’s electric. Oh yes a saucepan filled with water and on the gas cures that. Oh no sparker, no matches, yes a electric gas lighter in the draw. One spark and it went dead but at least the gas was alight and the water warming nicely.

Its so quiet, the radio is down in the Motor Home.

Ray walked the dog and asked the Park Manager what had happened but he didnt know so ray came home and phoned the electric company. It was 10am now and the power went off at 8am.

They had only just found out about it and were trying to find out just where the problem was. Ray was asked if he would like text updates. So every now and again through the day (yes the whole day) we knew just what was going on.

We went shopping and walking Louis before 12 as what else could we do. Lucky that I had done the washing early but as it was pouring with rain and I could use the dryer I was stuck with it wet.

At 3pm we at last had power, the lights came on, the front bell rang, the clocks all beeped on and the computers all turned on. The world went made but we were back in the world again.

Tomorrow is my big day- Scan day when I’m either going to shock the world with more shrinkage or disappoint the world with growth.  So much depends on my body and my mesothelioma reaction to the MK3475 Trial and tomorrow is no 25 —I will take what comes and deal with it like I have done for 6 years now.

Last week I spent every effort to back the Rotterdam Convention list, according to groups attending the Geneva meeting that wrapped up Saturday.. It ended up with Russia, Kazakhstan, Kyrgyzstan and Zimbawe blocking the adding of chrysotile to a worldwide dangerous substances list https://t.co/tDCGEgzsxw So the death of so many people will be on their hands.

About 125 million people are exposed to asbestos at work, according to the WHO, mainly in mines, factories and on construction sites

The 1998 Rotterdam Convention restricts trade in chemicals by obliging exporters to ensure that destination countries have been fully informed about the risks involved and have given an explicit green light for imports.

Civil society groups and unions calling for chrysotile’s inclusion on the list voiced outrage that the fifth attempt in a decade to do so had been blocked.

“The failure to list chrysotile asbestos means millions of exposed workers will stay ignorant of its deadly dangers,” said Brian Kohler, head of health, security and sustainable development for the IndustriALL Global Union.

“Countries that support the listing must be more aggressive in preventing the Rotterdam Convention from remaining a farce,” he told AFP in an email.

The Rotterdam Convention requires full consensus by all signatory members, meaning a single country can block a bid to list a new substance.

The Geneva meeting did manage to add the insecticide methamidophos to the list, according to conference organisers, but failed to list a range of other chemicals, including the pesticide paraquat, which studies have linked to Parkinson’s disease.

The question of whether or not to list chrysotile asbestos and the other chemicals where consensus was not reached will likely be raised again at the next conference on the Rotterdam Convention in 2017.

Alexandra Caterbow, the co-coordinator of the Rotterdam Convention Alliance organisation, warned the meeting that delaying the listing of chrysotile would have dire consequences.

– ‘Death sentence’ –

“Every year you do not list, thousands and thousands of people will be exposed to this substance, which means their death sentence,” she told the conference.

According to the World Health Organization, at least 107,000 people die each year from asbestos-related cancers and lung diseases such as asbestosis and mesothelioma.

While other types of asbestos have long been acknowledged to be hazardous to health, chrysotile is still widely used, especially as an inexpensive ingredient in building materials used in developing countries.

Around two million tonnes of chrysotile asbestos is produced each year, with the industry and a number of nations that produce or use the substance maintaining it is safe.

But WHO says “cancer risks have been observed in populations exposed to very low levels” of asbestos, including chrysotile.

About 125 million people are exposed to asbestos at work, according to WHO, mainly in mines, factories and on construction sites.

Workers’ families can also be exposed through the dust on clothes, and building materials in homes can continue to be a source of exposure for decades.

Sharad Sawant, a 75-year-old former asbestos worker at a Turner and Newall asbestos factory in Mumbai, came to Geneva to lobby for listing chrysotile, after he and his wife both were diagnosed with asbestosis.

“My children know I’m suffering and that their mother is suffering,” he told reporters through a translator, voicing concern his adult children and even grandchildren may have been exposed.

“This is the fault of the asbestos company,” he said.

India has long vehemently opposed adding chrysotile to the Rotterdam Convention list, but did not in the end join the four countries officially opposing its inclusion.

The number of countries opposing listing chrysotile has been shrinking in recent years.

Past efforts to do so were long stymied by Canada, a major producer, but the government withdrew support for the industry in 2012.

And this year, activists were pleased to see that Brazil, another chrysotile producer, backed listing the substance.

3rd

Please send your support to the The Asbestos Victims Charter for Justice

In the UK in 2015 more people will die of asbestos related diseases than will be killed on
the roads. Every year the number of people affected continues to rise.
Asbestos remains the single biggest cause of work related deaths. The people affected are
suffering through no fault of their own and we believe this country owes a debt of justice to
asbestos victims and their families.
That is why we are proud to support the Charter for Justice. We believe these changes will
make a real difference and we hope you can support them too.

The Asbestos Victims
Charter for Justice
We believe in Welfare Justice
 Industrial Injuries Disablement Benefit (IIDB) should be
retained and improved. It should also be disregarded for
the purposes of calculating a person’s entitlement to
means tested benefits such as Pension Credits and Local
Housing Allowance.
 Posthumous payments made under the Pneumoconiosis,
etc. (Workers Compensation) Act 1979 and the 2008
Diffuse Mesothelioma Scheme should be made at the
same rate as in life payments.
 Constant Attendance Allowance should be automatically
awarded at the intermediate rate where IIDB has
been awarded for mesothelioma or lung cancer.
We believe in fair a compensation system
 Payments from the Diffuse Mesothelioma Payment
Scheme should help all asbestos victims. All people who
have had payments should receive 100% of average
awards, all prescribed asbestos related diseases should
be covered by the scheme and the scheme should be put
on a sound financial footing. The levy on the Insurance
Industry should be written into law at a minimum level of
3%.
 People who are suffering from lung cancer which has
only developed because of exposure to asbestos should
be treated in the same way as mesothelioma sufferers
when making a civil claim. We believe in amending the
2006 Compensation Act.
 Compensation claims which are settled when the sufferer
is alive should be treated in the same way as those
settled after death. Currently they are treated differently
and this means that sufferers are often forced to choose
between settling for less during their lifetime or dying with
the uncertainty of an outstanding claim.
We believe in the right to decent medical treatment
 It is time to review the 2007 Mesothelioma Framework.
The Framework has led to improvements but access
to the best treatment can still be a post code lottery. That
is why the uptake from a revised framework must be made
mandatory.
 Every area of the UK should have a specialist mesothelioma
nurse to ensure the spread of best practice.
We believe in properly resourced medical research
 The UK is becoming a world leader in medical research
into asbestos related diseases. We believe in ensuring this
continues by putting in place a sustainable, ongoing
source of funding.
 Part of that funding should be provided by the monies
raised by the use of recovery of benefits legislation on
Diffuse Mesothelioma Payment Scheme payments.
We believe in preventing future tragedies
 We need a national public information campaign on
the dangers of asbestos in the workplace, home and
public environments. We need a tough regulatory
framework that ensures people who break the control of
asbestos regulations get prosecuted.
 We need to address the issue of asbestos in schools.
We need a national audit of all schools to identify the
presence and condition of asbestos and a long term policy
to eradicate asbestos from our schools.
I support the Charter for Justice:
Name: ………………………………………………………….. Position (if applicable): …………………………………
Address: ………………………………………………………………………………………………………………………………..
……………………………………………………….. Post Code: ……………………………………………………
Email: ……………………………………………………………………………………………………………………………………
Please return to the Asbestos Victims Support Groups Forum UK, 138 Digbeth, Birmingham, B5 6DR
or email asbestosforum@wmht.co.uk

lord

Rays Blog https://mesoandme.wordpress.com/2015/05/18/monday-125/

Living With Mesothelioma -My Diary- A camping Weekend in a English Country Garden Hole park in Rolvenden

Thank you all the people sending me messages wondering if I was ok. I didnt mean to worry you especial as I was away having a great time with the C&CC at Hole Park.

Ray forgot the dongle so we were cut off from the world.

We arrived to find many caravans and motorhomes already parked as the rally had started the day before and although it had rained the sun was out and it was a wonderful weekend sun wise.

We got up Saturday morning and went around the gardens of this love house. The owner spoke to us and hoped we enjoyed the visit.

Tucked away in the Weald of Kent, between the pretty village of Rolvenden and the charming town of Cranbrook, lies Hole Park Gardens which has to be one of the best gardens in Kent. An attractively laid out, privately owned 15 acre garden, Hole Park is often referred to as a hidden gem, and there are plenty of treasures to be found within its walls and hedges.

Hole Park has been owned by the Barham family for the past four generations and is set in over 200 acres of superb classic parkland. The colourful gardens enjoy far reaching views over the hills, woods and fields of the picturesque Kentish Weald. They are a skilful mix of formal design and more naturalised planting, giving colour throughout the seasons.

The house, which is a private family home and therefore not open, was largely reconstructed in 1959 and is now   little more than a quarter of its previous size. It resembles the house as it used to be before additions in the Elizabethan style were built in 1830.

The family owned Express Country Milk and found a way to refrigerate the trains to London bring in fresh milk. 30,000gallons every night. This became United dairies later on.

The gardens at Hole Park cover a total of some 15 acres and were laid out and planted by Colonel
   Barham, the great grandfather of the present owner, in the years between the two World Wars.
   Much of their beauty is owed to the great variety which they offer throughout the year from the
   first flowers in January to the last autumn colours in October, and also a contrast between classic
   form on the one hand and flowering shrubs in a woodland setting on the other.

http://www.holepark.com/gardens.htm

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A wonderful English Country Garden and the smells are divine.

The Bluebell woods were wonderful

We walked slowly back to the rally field shattered.

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But a birthday party was waiting and so it was wine and cake and then onward to a fire pit and baked beans and jacket potato. NOT!!!

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A fire was lit and it was lovely but it was far to late and despite cooking the potatoes wrapped in foil there were to many and they couldn’t get them cooked.The day was going and it was getting dark and cold as the damp air came in.

I felt guilty but I was so pleased when a friend said Im going in -we all dived up and disappeared, dreading that they might be served up for breakfast today.

Apparently they were all fed by 11pm but I was tucked up in a warm bed by then.

Coffee morning and we said our goodbyes but I cooked dinner first and one last walk through the fields with Louis we climbed into the M?H and had a good journey home. The washing is on and a very tired dog is laying at my feet. He loves his camping days.

Rays Blog

A lovely weekend at Hole Park. A walk round the gardens was awsome. Such colour. We dithered about should we go or not, glad we did. Saturday was a bit of a laugh, &.30 make your way to the bonfire,its jacket potatoes and beans they said. At 9.30 we were cold and fed up waiting as they pulled black and burnt uncooked potatoes from the fire. https://mesoandme.wordpress.com/2015/05/17/sunday-120/?fb_action_ids=924957960858355&fb_action_types=news.publishes&fb_ref=pub-standard

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Living With Mesothelioma -My Diary- An Evening with the Local Lions Club

Yesterday was a lovely warm day that made you think summer really is here.

We had a busy day getting the spring cleaning out of the way. Ray didn’t have such a great time with the man that came to sort the tap out in the M/Home but hopefully that will be resolved today.

So we got ready and went to All Saints Church in Whitstable.

I had been invited along to a meeting of the Local Lions Club and do a small speech on the money they gave me for Mesothelioma Uk back in November.

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I just didn’t know what to expect when we pulled up in the car park.

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Lions are all over the world but we have a great club here in  Whitstable and Herne Bay helping the local community.

We were early as usual and I opened the door to lovely smiles and friendly welcomes.

The hall filled up and at 7.30pm the meeting started. well Im amazed at the wonderful work these people do.

I have been to fetes and seen them with their buckets out side the Supermarkets also I went to the fashion show where they presented me with a cheque for £1,000 for Mesothelioma UK. I never realised they raised funds all the time and supported any crisis abroad or at home. They have been supporting the Nepal earthquake I was really impressed.

Whitstable & Herne Bay Lions Club was chartered in 1971. It is one of the 941 Lions Clubs in the British Isles and Ireland and is part of the worldwide family of Lions Clubs International. Club members raise money in the Whitstable and Herne Bay area to support those in need and to play their part in the worldwide activities of the organisation.

We raise between £25,000 and £28,000 every year and then spend it through the Whitstable Lions Club Charitable Trust.

Members come from all walks of life and all ages.

Non profit making I might add.

http://www.whitstablelionsclub.org.uk/

The evening was full of people getting up and thanking the members for the money received and telling us what they achieved. From a nursery needing grass for the children to play on to The Blood Runners http://www.servssl.org.uk/kent-surrey-sussex-air-ambulance-pre-hospital-blood-transfusion-update/

KSSAA began carrying “Golden Hour” blood up to the end of June 2014 they have carried out 107 blood transfusions at the scene or prior to the casualty reaching hospital, 43 of those being this year.

In June the Redhill and Marden aircraft crews each carried out 5 transfusions meaning that as well as the regular daily restock runs, volunteers would have carried out 10 ad-hoc re-supply runs.

In April 1981 in Surrey, Service by Emergency Rider Volunteers was set up to supply a quick and reliable means of transporting emergency blood products to the hospitals and medical facilities at night.

Prior to SERV the only means available to hospitals, doctors and other medical establishments for the transport of emergency blood supplies at night were the following:

  • Taxi
  • Ambulance
  • Police
  • Courier
  • Transfusion service vehicle

Each of these options had good and bad points:

  • Taxis: The advantage of these was that there were plenty of them. The disadvantage was reliability and cost. The cost to hospitals would range from £30 – £60 or more depending on location. The hospital also had to wait for one to be available and it was not guaranteed how long it would take to deliver.
  • Ambulance: Fast and able to respond quickly. The disadvantage was it removed a much-needed emergency vehicle from service during the transport time.
  • Police: Fast and able to respond quickly. The disadvantage was it removed a much-needed emergency vehicle from service during the transport time.
  • Courier: Limited availability during the night. High cost for service
  • Transfusion Service: Provide regular day-time scheduled hospital deliveries, and Ad-Hoc deliveries to hospitals on special request.

SERV supplies this service free of any charge thus freeing up much-needed funds for improved patient care and other needed facilities within the hospital.

There was a the lip reading club for the deaf which Ray has now joined. It only runs in the winter so he has that to look forward to. Its surprising that just because he has hearing aides there are times when back ground noise makes hearing difficult and he already can lip read but not that good.

There was the St Johns Ambulance who spent their gift on essential equipment, the list is endless.

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I did my little speech and started by thanking them for the £1,000 which Mesothelioma UK received.

The Secretary Yvonne Medlan had introduced me by saying how her son in law was diagnosed with Mesothelioma and she saw me on Telly and was surprised I came from Seasalter. Sadly her son in law died and she nominated me to the Lions. I said I know mine was a National Charity but from the publicity I was contacted by local people and I have helped them to find trials.

Yvonne Medlen

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Yvonne presented a cup in her husbands name for young people who achieve and this went to a lovely young girl who at 14 is the carer of her mother who is suffering with MS

Multiple sclerosis (MS) is a neurological condition which affects around 100,000 people in the UK.

Most people are diagnosed between the ages of 20-40, but it can affect younger and older people too.

Roughly three times as many women have MS as men.

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We clapped the Lion as for all the work they have achieved for the year and The evening was soon over and we said our goodbyes, so pleased we had been invited.

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Rays Blog https://mesoandme.wordpress.com/2015/05/12/tuesday-142/?fb_action_ids=923057027715115&fb_action_types=news.publishes&fb_ref=pub-standard

Living With Mesothelioma _My Diary_ Remembering VE day

It was a lovely day yesterday even if it was overcast. So I got out my Motor home extending brush and decided to try and push myself to clean the guttering that has got so black through the winter.

I have boxed clever and used a patio cleaner that you can then put on and leave and it will work on the black.

That was a great idea except I kept loosing my balance as I looked up to do this. I think I got more soaked than the guttering. But I kept going and managed to get some water on.

I then did the window frames and I now have white and gleaming PVC window frames.

Ray didn’t even know I was out there and wondered why the dog was barking as I hosed down afterwards.

I only managed half the home though so I will finish today. I weeded the garden as I went round. Very busy day but I couldn’t move last night. My muscles seized up. Trying to sit down hurt!!  My hands have seized up and fingers are throbbing –Oh goodness getting old is no fun.

I showered ad wished we hadn’t giving up the bath but then I cant get in and out of a bath anymore thanks to all the Chemo damage.

But Im alive and that’s what counts.

The VE day concert on BBC1 was brilliant last night. We do celebrations so well don’t we

I was a war baby but I really don’t remember the wartime.

My brother remembers me being born as he was 9 years older than me so he had to go and live with my Gran and aunts and would you believe that was in Streatham. As children were being evacuated he was being sent to London. Mum was evacuated so that’s why I was born at West Byfleet in Surrey. she spent three months there.

I was given a  gas mask. Look at that no wonder i screamed every time I was put in it for practice.This looks like a deep-sea diving helmet but is in fact a gas mask for babies, dating from World War II. In 1938, the British Government gave everyone, including babies, gas masks to protect them in case the Germans dropped poison gas bombs on Britain.

This gas mask was for children up to two years old. The parents placed their baby inside the mask so that the head was inside the steel helmet and the baby could see through the visor. Then they wrapped the canvas part around the baby’s body with the straps fastened under its bottom like a nappy, and its legs dangling free below. The canvas had a rubber coating to stop gas seeping through the material, and the straps were tied securely so that the mask was airtight.
There is an asbestos filter on the side of the mask, and this absorbed poisonous gases. Attached to this is a rubber tube shaped like a concertina with a handle. This was pushed back and forth to pump air into the mask. With the baby inside the mask, an adult could start to use the hand pump.
Health Visitors and Child Welfare Centres gave lessons on how to use the mask. Despite instruction courses, few parents were totally happy with encasing their child in an airtight chamber. In fact there was some question over its safety. During demonstrations there were reports that babies fell asleep and became unnaturally still inside the masks! It is likely that the pump didn’t push enough air into the mask and the babies came close to suffocating. Luckily, they were never put to the test in a real situation.
As well as the infant gas mask, there was a gas-proof pram that could be used to protect babies from poisonous gas attacks.
As asbestos ages it breaks down. It is now known that there is a link between asbestos and lung disease. It is very important that all asbestos is professionally removed from old gas masks. Was this where I got my contamination from, way before I was washing Rays clothes.????
Mum has told me how happy every one was when the war was declared over and the Celebrations began.

Royal Family on Buckingham Palace on VE Day

Many Beacons were lit last night even our one at Tankerton Slopes

https://i0.wp.com/ichef.bbci.co.uk/news/624/media/images/82877000/jpg/_82877166_027117136-1.jpg

Katherine Jenkins with performers from Strictly Come Dancing

A 1940s-themed concert has been held at Horse Guards Parade, as part of 70th anniversary commemorations of VE Day, the end of World War Two in Europe.

Thousands of spectators, including WW2 veterans, gathered at an aircraft hangar-style stage to see musical and dance acts influenced by the era.

Earlier, churches and cathedrals across the country rang their bells on the second day of celebrations.

And on Friday the Queen led a ceremony to light beacons across the UK.

Dancing couples

Saturday’s concert, entitled A Party to Remember, was hosted by Chris Evans and included performances from Katherine Jenkins, Status Quo, Pixie Lott, and couples from Strictly Come Dancing.

Actors John Simm, Julia Sawalha and Laurence Fox also gave readings.

A concert was held in London’s Horse Guards Parade, on the second day of VE Day celebration

check the link out if you missed all the wonderful entertainment.

http://www.bbc.co.uk/news/uk-32670639

rays welcome2

Rays Blog https://mesoandme.wordpress.com