Living with Mesothelioma -My Diary- Happy Easter Sunday and the clocks have gone forward

The mornings are still very frosty but when the sun comes up it shines all day.

It is spring if only the wind would let it be but it keeps blowing from the East.

I have seen Mrs Blackbird being chased by Mr Blackbird all through my garden and the two pigeons are cooing on my TV Ariel most of the day, the frog spawn is in the pond and Daffadils are showing themselves so spring is here now.

I Took Louis out for his walk and although going was against the cold wind coming home was lovely as the sun was on my face again and the wind was hitting my back.

I went into the garden and was able to cut down and tidy up so I feel Im doing something at last.

I still had my thick coat on though.

I had a coffee and then Ray asked if he could walk with me round our park so we got our coats on and set off. He was very slow and looked 100 years but he did walk. The worse place was going up hill so we took that very slow, but he did make a small circle. Its very scary and I kept praying he wasn’t over doing it as I know that feeling when On Chemo of pushing  yourself to far.

He made it back home and felt good that he had achieved so now we have something to work on and he is getting exercise again.

I wish that appointment would come through as you have an awful feeling of just being left.

We will start to chase it after Easter as you have to know you are still in the system, that you haven’t been dropped out.

I had a chicken cooking in all sorts of spices in the slow cook so we had a lovely dinner and I mashed carrots and swede together, Ray doesn’t like swede but he ate that, I have to as crafty as a mother with a child. He will get his 5 a day.

Fresh fruit salad and yogurt he did very well and its great to see empty plates again.

Its my Scan next Saturday so, as I told a neighbour, I want another clear 3 months as then Ray will get a stent, if that is all he needs and he will feel like a new man and I can carry on with my illness and concentrate on being positive. This happening to Ray Im always thing what will happen to him and Louis if mine takes a turn for the worse.

My Positive thoughts went out the window these past 3 weeks. I have to be strong and be able to do all the jobs around the house as I must worry Ray at all.

Every  time I make a loud noise I worry in case his heart has missed a beat. No shocks and no worries are the order of the day.

We remembered to put the clocks forward and we have lost the hour. This always puts me out all week, I never recover and will be sleepy all week I wished they stopped messing it about like this as it is man made not a natural thing.

Rays Blog




Living With Mesothelioma –My Diary– Happy Easter –Its Snowing ??


A cold  day today I cant believe we have a heavy frost and snow. Its more like Christmas than Easter.

It was a sunny day in the end yesterday, but the cold wind made it seem so bitter cold and yet, if you could get in the shelter away from the wind, you could feel the heat in the sun.

The porch was so warm as the sun shone through. Open the door and your froze.

So we stayed in and ate our Hot Cross Buns and they were delicious.

I even ordered my shopping on line to be delivered today so that I didn’t have to worry about going out to do shopping as the shops will be full of people who are bored and want somewhere to go to keep warm.

If this carries on we will have to invest in thicker clothes and boots like they have in Iceland !!!

Louis did get his walk and then Ray tried again to do a small walk but Louis played up and was barking at every dog he passed as if he knew Ray didn’t have the strength to keep him in control, just like a child that knew he could play up. Very strange as he had walked past every dog on my walk with him. Crafty !!!


He seems to know he has been a naughty boy.

Watched telly and saw Tyrone was freed. The story line has been very good and very real so on Facebook we were all pleased ha ha !!


Linda Reinstein Skyped me yesterday and we had a long chat about how the conference went and how pleased she was with the reaction to my Videoed acceptance and how she has written and presented it in her book that she will send to me soon.

She looked tired as it has been such a busy time for her and she puts her heart and soul into it.

She will fight on.

Asbestos: One Word. One World. One Week.

Thanks to the U.S. Senate, ADAO now has Senate Resolution 66 designating April 1 -7, 2013 as “Asbestos Awareness Week.”   Global Asbestos Awareness Week (GAAW) begins on Monday with ADAO’s exclusive online candlelight vigil to honor for those fighting preventable asbestos-caused diseases and remember those we have lost. Our GAAW campaign will include “7 Facts for 7 Days” and a different asbestos subject each day.

Asbestos is a known carcinogen and there is no safe level of exposure.  The World Health Organization reported:

  • “About 125 million people in the world are exposed to asbestos at the workplace.
  • According to WHO estimates, more than 107,000 people die each year from asbestos-related lung cancer, mesothelioma and asbestosis resulting from occupational exposure.”

The USA must stop importing asbestos and pass legislation to ban asbestos.  We all know – asbestos kills. Tweet, post, and share #BanAsbestosNow!

Im so amazed that the USA hasnt banned Asbestos. How amazing that we in the UK have shown the way in that but there is a long way to go as Buildings have Asbestos in but Europe says that must all be removed by 2030—that wont happen though. It takes such a lot of money. It can be managed if left alone and recorded where it is and inspected to its condition.

I read a  good article yesterday

Renovators the ‘third wave’ of asbestos victims

Updated Mon Mar 11, 2013 7:55pm AEDT

The DIY ethic of home renovators who have taken to ripping out fences, walls and ceilings in a bid to renew their properties, could prove deadly.

They are the next group expected to be struck down by asbestos-related diseases.

The Cancer Council WA says it’s called the silent killer and much more needs to be done to raise awareness.

The problem, according to the council, is that people have forgotten about it.

Its education research director Terry Slevin says the number of mesothelioma cases being diagnosed is on the rise again.

The first wave of victims were those exposed as part of the asbestos mining industry, the second wave was the tradesmen who worked with asbestos products in buildings.

“The third wave is home renovators,” Mr Slevin said.

“That’s people pulling up carpet and the underlay, people pulling out bathrooms, doing some of their own under-house work and being exposed.”

It’s these people who are adding to the numbers of people being diagnosed with asbestos-related cancer.

The council says in 2010 about 272 West Australians had mesothelioma or asbestos-related lung cancer.

It says that’s in addition to the number of people who have asbestosis, a disease of the lung for which statistics are not reliably collected in WA.

“The numbers are still going up,” Mr Slevin said. “Despite a general sense that the problem’s been fixed after asbestos was banned around 1983.

“Asbestos was a very good building product, it was cheap and had a number of very useful purposes.

“It’s very common in property built, particularly in Western Australia at least, from the mid 1940s to the early 1980s so that means there’s still a lot of asbestos in those properties, domestic and public.”

Home renovators

It’s estimated that two out of three homes built in Australia between WW2 and the early 1980s still contain asbestos and it’s those houses that are now being renovated or modified to suit new owners.

And, there is now a generation of home renovators and tradespeople who were born some time after asbestos was banned so may not easily recognise it for what it is.

A Curtin University survey of tradesmen, including plumbers, electricians and carpenters, asked about their confidence to identify asbestos and to know how to handle it.

It showed a significant proportion did not know how to deal with the product safely.

Mr Slevin says his son is a first year electrical apprentice and he has asked him what he knows.

“I was pestering my young bloke to see if they were giving him any training on asbestos and he said yes, so I asked what did they told him and he said he was told that if they find some, tell somebody,” he said.

“I asked if he knew what he was looking for and he said no he didn’t.

“So, the bottom line is it’s still around, it’s gone off the radar, people are still being exposed to it and the number of cases of asbestos-related diseases is still going up.

“We’re very concerned to ensure there’s a boost in training both the people who are working in the building trades and the home renovators.”

The Master Builders Association’s training manager, Michael Fitzgerald, says Worksafe provides training for people working in the building industry who may come into contact with asbestos.

“There’s a lot more regulation for registered builders as to what they can and can’t do,” he said.

He says while tradespeople aren’t experts in identifying asbestos, they are trained to seek professional advice.

“All trade students complete an ‘identification of hazardous substances’ unit and there’s plenty of regulation standards for people doing trades,” he said.

“It’s the home renovators who don’t have the background knowledge or experience with asbestos that need better education.

As someone who has worked in the industry, Greens leader Giz Watson believes the awareness of asbestos by home renovators is very low.

In fact she said during the time she taught at a trade education centre, it wasn’t part of the training she received.

“I certainly think the younger people aren’t able to readily identify asbestos if they do find it and that’s a problem so we need a whole new awareness campaign so people are on the look out for it,” she said.

“There are so many home renovation shows on television at the moment, if each one made a point of raising awareness to their audiences, it would go a long way.”

She also suggested big hardware stores could help by raising awareness with people who are there to purchase items for home renovation jobs.

Asbestos register

The Cancer Council is calling on the government to commit to establishing a register of locations of asbestos and better education for those working with asbestos, in particular homeowners.

It is quick to point out that while much of the asbestos in buildings is considered ‘safe’, no building lasts forever.

“No building is maintenance free and we know natural disasters are potentially around the corner, so just leaving it alone isn’t good enough,” Mr Slevin said.

He says asbestos could be exposed in buildings damaged during storms, fires or floods.

“What we’re keen to see is an effort to start the process of systematically identifying where the asbestos is and what needs to be done,” he said.

Mr Slevin said more work also needs to be done to make the removal and safe disposal of the product cheaper and more accessible.

“There are an enormous number of price disincentives for dealing with asbestos; there are 14 sites legally able to take asbestos for removal and none of them are north of Gingin,” he said.

The Master Builder’s Association said there had been a recent reduction in the cost of disposing of asbestos, to stop illegal dumping.

But, Mr Slevin said it could go further.

“Cost is going to be a real consideration and that’s why governments want to let sleeping dogs lie, but unfortunately some sleeping dogs will die because there isn’t that kind of action taken,” he said.

“We’re not calling for a squillion bucks to be thrown at this first up and we’re not suggesting it’s going to be fixed overnight, it’s a long-term game.”

The Health Minister Kim Hames was contacted for comment.

Topics: diseases-and-disorderswa

First posted Thu Mar 7, 2013 4:46pm AEDT

Linda Reinstein Skyped me yesterday and we had a long chat about how the conference went and how pleased she was with the reaction to my Videod acceptance and how she has written an presented it in her book that she will send to me soon.

She looked tired as it has been such a busy time for her and she puts her heart and soul into it.


Living With Mesothelioma -My Diary- The Speech IATP delivered from UK to US ADAO and my bake day

My day yesterday was a busy one  of dog walk  in the very cold weather again. I returned to make Lunch of baked jacket potato, red cabbage  and apple chutney.

Then I started baking and didn’t stop. A scone round, Scones, Hot cross buns and a loaf. Im terrible for getting flour everywhere so I had a lot of washing up  to do.

The kitchen all cleared up and all the baking done. The house smelt lovely but when I took the hot cross buns out of the oven they  looked great– but they are for tomorrow so we will just have to drool.

Sweet_bun : hot cross buns in a basket, white background

heather and christine

Heather Von St James and Christine Winters at the ADAO  Conference where Christine spoke for IATP. Christine has let me print her speech as a personal interview here .

United Kingdom Ban Asbestos Efforts: Where Professionals and Patients Unite”

Good Afternoon Ladies and Gentlemen. My name is Christine Winter, IATP Chair Person.

IATP is delighted to be attending the 9th Annual ADAO Asbestos Awareness Conference.

At ADAO’s request our presentation this year focuses on RESPONSIBILITY and ACCOUNTABILITY … Across several areas that are impacted by asbestos products that lead to asbestos exposure.

 Duty to Manage

I want to focus on one area first “Duty to Manage” This law covers all non-domestic buildings, protecting people in the workplace, the common/public areas social housing, in hotels, retail premises and outlets, effectively all buildings that are for public use be it for employment or pleasure.


 On the 22nd March 1974 the Secretary of State for Employment introduced the Health and Safety at Work Act (abb HASWA 1974); this act of Parliament gained Royal Assent on the 31st July 1974

Regulation/ statutory Instrument

 On the 21st of November 2002 the UK Parliament introduced a new Regulation specifically for the management of asbestos in the built environment; referred to as Regulation 4 the Duty To Manage asbestos in non-domestic properties.

Approved Code of Practice

 It had a lead in of 18 months and as such became absolute on the 21st May 2004, this has meant duty holders in the UK have had almost a decade to identify, asses and manage ACM’s in the fabric of the buildings for which they have a legal duty to manage, it is estimated the UK has half a million non-domestic premises containing asbestos.

The question is this, given nearly ten years of the legal duty to manage asbestos in the UK. Has all the asbestos been found and under a management plan or been removed?

The answer is a resounding no!!!

To this very day there are employees (workers) exposed to asbestos dust/ fibres at work and they will not know it, neither will their employers nor their clients, even though the employers and the clients have legal duties and responsibilities where asbestos poses a health hazard.

An unfortunate consequence of workers being exposed and going home contaminated is that family members also end up being exposed to the deadly affects asbestos fibres in the lungs.

There are almost 2,500 new cases of Mesothelioma in the UK each year. This number is expected to rise by 100-120 a year until at least 2015, given current trends and forecast as to the management, abatement and education for those who present exposure risks in their employment. (source TUC) this will take the expected mortality rate to in excess of 10,000 per annum, ladies and gentlemen I put it to you that this figure even if one! Is unacceptable.

When the figure I have espoused too is transferred to a global population the future mortality rate is to be measured in the hundreds of thousands globally and this is only for the known world.

Who is the Duty Holder?

The duty-holder in this case means every person who, either by contract or tenancy, has an obligation of any kind to maintain and/or repair non-domestic premises, in other words, workplaces. It also applies to the means of access and egress of a building or workplace.

But the regulation spreads the duty even wider by saying that even if there is not a contract, a person who has control over a workplace or part of it also carries that responsibility.

That seems clear enough but things do get a little more confused when there is more than one occupier or duty-holder. The duty holder may well be the landlord, tenant or a managing agent, depending on the circumstances, and of course there may well be more than one tenant. An example may be old warehouses that have been converted to offices or workshops. The extent of responsibility will be determined by the extent of the person’s or organisation’s obligation to maintain and repair the premises.

The regulation also includes a duty to cooperate, which applies widely. This will, for example, require an employer who is a tenant to allow a landlord to gain access to a building to carry out a survey. Also a building surveyor or architect who had plans which show information on the whereabouts of asbestos would be expected to make these available to the duty holder at a reasonable cost.

Information and training

In order to do this the employer and/or duty holder will need information, instruction and training to ensure that they are carrying out their responsibilities properly. They also need to ensure that employees and others have received appropriate information, instruction and training to ensure that they can comply with the requirements of the duty holder.

This is covered by Regulation 10; one must not separate a set of Regulations as though they are separate individual Regulations, what I mean by this is there are 35 Regulations that make up CAR2012 in the UK, 3 days before travelling to the USA I listened to a Parliamentary broad cast whereby a legal person trained in law sprouted that Regulation 4 does not document training, well of course it would not as Regulation 10 specifically outlines what the legal requirement is regarding asbestos and asbestos exposure from a information, instruction and training perspective is.

In summary

The duty to manage requires those in control of premises to:

take reasonable steps to determine the location and condition of materials likely to contain asbestos;

presume materials contain asbestos unless there is strong evidence that they do not;

make and keep an up to date record of the location and condition of the ACMs or presumed ACMs in the premises;

assess the risk of the likelihood of anyone being exposed to fibres from these materials;

prepare a plan setting out how the risks from the materials are to be managed;

take the necessary steps to put the plan into action;

review and monitor the plan periodically; and

Provide information on the location and condition of the materials to anyone who is liable to work on or disturb them.!!!!

I will finish this slide with this statement. Given all the Laws, Approved Codes of Practice (which carry a legal status in the British courts) and guidance’s which are established and have been qualified by many prosecutions within the UK Are people being exposed to asbestos in the UK?

The answer is yes!

My husband is a trainer in the asbestos industry within the UK, a person with knowledge, experience of asbestos in the built environment, its management and removal is exposed to asbestos at work, this year 2013 on attending a client’s site to undertake asbestos training which precludes the use of asbestos for training in section 3 of CAR2012 the prohibition regulations, asbestos was in abundance in very poor state within the clients building fabric, the ACM was/is a pre formed section also hard set insulation on hundreds of meters of pipe insulation, all contained within the confines of a very large basement area.

Typical uncontrolled fibre release from lagging material with typical Amphibole content of 85% is in the order up to 100 f/cm³ (fibres per cubic centimeter), the average adult human lung capacity is +- 1.4 litres to 1.6 litres for a non smoker, (given there are 1000 cubic centimeters per litre) we would be looking at 104,000 to 106,000 fibres per breath, at what point does the exposure to asbestos become fatal? Unfortunately medical science cannot answer that question.

What is known if one does not breathe asbestos in then asbestos cannot pose a risk to health.

Ban it. Manage it. Remove it.


Rays Blog

Living With Mesothelioma -My Diary – Is this an Ice Age ?

The sun did come out yesterday although the bitter wind didnt leave us.

I actually put washing out on the line and it dried. Such a little thing but it it did really please me that the tumble dryer was turned on for just one day. The bad summer and the cold and snowey winter the tumble dryer has worked overtime, the electric bill has shown that.

I wish they would be honest and tell us we are in a Iceage as this is a long cold winter and they are saying it is going to last through to April.

And the root of the delay in the Spring weather is a jet stream, a high altitude belt of wind, which normally brings milder weather.

The jet stream has been pushed to an unusually southerly location, and is currently flowing around the north of Africa.  Thats a long way down isnt it and I wonder what its going to take to get it up again.

And the root of the delay in the Spring weather is a jet stream, a high altitude belt of wind, which normally brings milder weather.

The jet stream has been pushed to an unusually southerly location, and is currently flowing around the north of Africa.

the jet stream


So we have to just put up with this cold weather as there is nothing we can do about it. Last night there was a full moon which is always eerie. but you knew we were going to have a frost again as the stars  were twinkling so bright.

It has just made it so hard for ray to go out as it is just to cold. He did mange a walk into the garden today but I would love him to be able to go right out and really get some fresh air into his lungs.

I did enjoy the dog walk yesterday as although the wind blew so cold as I went up the road when we came back and the wind was on my back you could feel the heat in the sun.

I felt good.

We just spend each day in the warm waiting for a hospital appointment for Ray. I wish they contacted. He has had a heart attack and comes home and  then no more contact. You get left to wonder just what to do next.

We have a little booklet that he reads and reads again but you need to know you are in the system and appointment are being acknowledge. We understand that the heart has to settle back down and heal so that they can see the actual damage that has been left and what they need do.

I did send away for a pack from the National Heart Foundation but that is mainly about diet etc.

I googled to find things to read and to be honest there isnt a lot on the web, not like Mesothelioma and I realised  that No there is no money attached to Heart Attacks, no one to blame but yourself mostly as they put it all down to your way of life.

Asbestos and Mesothelioma has this “Lottery win ”  attached to it and Lawyers want to help. There is so much info you are swamped with it.

All the new ideas about how to treat it and yet they are for the future not here now.

But nothing for the Heart.

That is because the operations are all in place and treatment is all sorted with Heart. The transplants are common practice now and valve changes and stents.

I wish it was the same for Mesothelioma. I wish they had a set pattern for the disease. A world wide ban on Asbestos a set pattern in Industry a set  treatment.

But that is wishful thinking.
Oh well all we can do is carry on and keep raising awareness and pray something is around the corner as we patients cling onto the cliffes edge —but like the White Cliffes of Dover –Cliffes crumble


Rays Blog

Living With Mesothelioma –My Diary– Where is the Sun ???


Another very cold day yesterday -when will it warm up. I took Louis for a walk and then went back over the shop for a few bits. When I can back Ray was out in the garden checking the new bottle of gas, they can leak sometimes and you smell gas. It has got to expensive to waste like that. Anyway there is Ray in the garden with just a jumper on. I told him to get in the warm again and not to be so silly.

He needs that appointment for the Angiogram but he has only been home a week and a half so it is to early yet to chase it. He doesnt see the Heart Doctor for another 4 weeks so they wont rush it, but in the mean time Ray needs to take it easy until we find out just what the damage is.

This weather isnt helping as he would be able to at least go to the garden if the sun was shining, but no people have horrendous snow in parts.

They are saying its because the jet stream has really slipped right down, well will someone push it back again please.

The farmers are complaining as they are having to feed their stock on expensive feeds as there isnt any good growing grass yet.

So its Easter coming up this weekend and Rallies are being cancelled due to the weather. It is April the first as well and this is the biggest April fools joke ever, so come on please give the sun back to us.


I received my ADAO video of my talk in the US

Im very pleased with it and amazed at how all my speeches are all so different. They are all so different as I say it as it is.

Everyone has arrived home safely and IATP landed yesterday, so Im really interested in what Christine has made of it all. What she has bought back in new ideas, although she lost presents from her Luggage trolley !!!!

But she is home safe.


Christine with Louis and Karen from Australia

Photo: ADAO Co founder Doug Larkin and Linda Reinstein Co Founder and President

ADAO Co founder Doug Larkin and Linda Reinstein Co Founder and President, can relax that she has a job well done

A matter that is dear to my heart was bought to my attention last night

The government’s NHS shake-up in England comes into force on 1 April.

The changes have been dubbed the most radical in the history of the health service – and have certainly proved controversial.

At one point, the overhaul threatened to tear apart the coalition and ministers had to take the unprecedented step of halting the progression of legislation through parliament after criticism from MPs and health unions. please read the link———

 My dear friend commented on my face book:-
Peggy Pryer NHS (SRN, SCM, NDNCert., HV Cert.)It was interesting to hear from Julie Bailey, Founder of the ‘Cure the NHS Campaign’ that she had no criticism of the manner in which nursing students were caring for patients at Stafford. Requiring people considering entering the nursing profession to work initially as HCAs has both good and bad points. Yes, anyone wishing to undertake a nursing degree must first and foremost be of a caring nature but that should also be the case with doctors, physiotherapists, occupational therapists in fact anyone coming into direct contact with patients should it not? Are they too going to be required to undertake a pre-degree type of employment in order to be assessed to see if they are suitable to progress into their chosen profession? And if we take this further, what about other professions such as teaching, the police in fact anybody having direct contact with anyone? If the scheme to appoint would be nurses initially as HCAs, who is going to supervise them? There are insufficient numbers now of registered nurses to supervise those we do have let alone the influx there would be if this were to happen. Would they be paid a proper wage for working as HCAs or is this a government ploy to get healthcare even more on the cheap? If they were to be paid as HCAs would some not want then to proceed to becoming students and living on a bursary only as opposed to a wage they had got used to receiving, albeit a very limited one?
My opinion is that the grade of State Enrolled Nurse should be reintroduced. At least SENs were on a register unlike the current position of HCAs. Not everyone wants to have the additional responsibility being a registered nurse entails. There are those who want to stay at the coalface and give the day to day nursing care so sadly lacking in so many places these days
The bit that I found interesting is —The shake-up is partly designed to encourage greater involvement from the private sector and charities.
they already are involved I know and I did bring up about having a one off hospital here in East Kent. Charities already run our cancer network ie Macmillan and Hospices are all run by Charities which amazed me as I traveled the journey. I dint know they were so heavily involved.
No body within the NHS know how all this new NHS is going to pan out —We are about to find out !!!!!











Photo: To all my Prayer Warriors.Please say a prayer for Karen as she lost her husband Bill to Mesothelioma on Sunday March 24th -2013.Please keep  Bill's family in your prayers especially his wife Karen, his daughters Kalli, Marianna and son Sean.We know what its like to go thru this journey and they each need your prayers right now,as they are having a  hard time dealing with Bill's death.

Living With Mesothelioma -My Diary- The worse march ever for cold and its Summer on Sunday –ha ha!!

Photo: Family stranded in 10ft snow drift burns furniture to stay warm as thousands remain without power with 'White Easter' looming

I cant believe all these photos of the snow when summer officially begins on Sunday. We are being told that this is what we will be getting every year now.

Seems global warming is here with a vengeance.

So we have had a freezing day even if we haven’t had this snow in Kent. We have a bitter wind. I took Louis out and the wind felt like it was needles hitting you.

I couldnt believe ray put his coat and wrapped up and wet out as I thought to the Garden. No he went down the road. My heart was in my mouth and I watched Ry come back so very slow so I went out and helped him in but he was on the steps.

I bought him in and he undressed and flopped on the settee. I hope he has learnt a big lesson  We just have to wait for the sun and a warmer day.

Another 2 weeks and he can drive again so he will be able to get about then.

I cant believe that I was researching and came across adverts for Asbestos products. I know its in India but that doesn’t matter  we need a world wide ban

Asbestos Products

Life is cheap isnt it -well I hate that fact.

Further, our exclusive range of product also includes SS Hose Clamp, MS Hose clamp, MIxed Steel Hose Clamp, Stainless Steel Hose Clamp, Mini Clamps, Keystone Boot Clamps, Embossed Band And Liner Clamps, Asbestos Textile, Asbestos Rope, Asbestos Yarn, Drill Chucks, Sabre Saws, Mitre Saw Blades, Diamond Blades-Marble Cutting, SDS Plus Chisels,  Pocket Screw Driver Bit Set, PTFE Thread Seal Tape etc.

I wonder if they export and it is getting into other countries. I cant see we will ever eradicate Mesothelioma there will always be someone hurt by Asbestos.

We are still receiving photos and reports of the ADAO Conference as people get home to tell us.

Photo: IATP



Love this photo of 4 very strong women.

Linda Reinstein, Lou Williams Barbi McQeen and Karen Bantan Each have given great speeches this weekend.

The British Lung Foundation have given help for us in this cold weather

Very cold weather, or very hot weather, can affect your lungs in different ways. There are some things you can do to help stay well.

Cold weather and your lungs

  1. Cold weather can also make a lung condition worse. These ideas will help you to stay healthy during the winter months.
  2. Make sure you keep warm by wearing layers of clothing when it’s cold – thermal underwear can be very useful, along with woollen tights and socks and make sure you have a blanket or shawl to hand
  3. Wear warm nightclothes during very cold weather
  4. Try and stay as active as possible to generate heat – get up, move around and try to do some exercise
  5. The recommended temperature in the living room is 21°C (70°F) and 18°C (64°F) in the bedroom
  6. Keep your home well ventilated – Air quality inside the home becomes more important in winter as most of us spend more time
  7. Check the weather before going out and elderly patients are advised to stay indoors as much as possible and keep warm
  8. If you have a bronchodilator, use it half an hour before going outside
  9. Make sure you carry your medication with you at all times as cold air can tighten the airways in lung disease patients making it harder to breathe
  10. Try to breathe through your nose instead of your mouth as this will help warm the air
  11. Protect your lungs by wearing a hood or scarf that covers your nose and mouth
  12. It is wise for patients with chronic lung conditions such as COPD or severe asthma to have the seasonal flu jab

We are working towards Easter now as it is at the end of the week and we have family coming down.

I dont buy Easter Eggs as they are so dear for the amount of chocolate in them. Now everyone is on diets and Ray cant eat Chocolate so I will have to buy fluffy chicks.

Mother hen walking with three baby chicks

Rays Blog

Living With Mesothelioma–My Diary–The ADAO conference comes to a close

Well the ADAO c conference came to a close yesterday.

Rod Smith has reported :-

The final AdAO 2013 Conference session was Sunday brunch, a day for those who have been affected by the horror that is asbestos. What a beautiful morning, BBF’s Karen Banton was the Keynote Speaker and Lou Williams also spoke. So many special moments! The Australian Embassy also sent Helen Seidel to represent the Australian Government. All at BBF and ADAO very much appreciated Helen’s presence, her interest and undeniable compassion and concern for the asbestos issue was really evident. What a way to round off a fabulous conference. Rod Smith PS: Click on the photo to see the entire album.


Rod and Karen Lou –Karen did give a moving speech about Bernie, Life.

IATP Is now on their way home today so I will be able to find out what new paths they will be on now they have met the world in the Asbestos world. Christine will be all fired up with so many new ideas.


Mesothelioma News said :-

We were so fortunate to attend this weekend’s ADAO conference and look forward to sharing many photos and tons of information this coming week. These women are our super heroes! “Justice has no timeline”… Yep, that’s why we all keep fighting! — with Linda Reinstein.

Photo: We were so fortunate to attend this weekend's ADAO conference and look forward to sharing many photos and tons of information this coming week. These women are our super heroes! "Justice has no timeline"... Yep, that's why we all keep fighting!

We all thought Linda deserved the award this year so Lou presented to Linda. for all us warriors.
What we also felt was it was about time she had one due to all the support she gives others x x — in Washington, DC.

Photo: With gratitude and tears, thank you Lou, Karen, Rod, and the many Global Warriors for my gorgeous and special award.

Linda was in tears as Lou presented it to her, Christine had taken the precious item to the USA for us.

Well thats the end of the ADAo conference so life goes back to normal.

We do listen though and have learnt but it is really all for the future of which we patients dont have.

We can only contribute at the moment and hope we teach the future. Thats why we go into trials, always the hope we are cured but know it is really for the future.

One little note –a friend went to Barts Friday and I ask her to ask about  Cryoablation and her reply is —- I asked him about the Cryoablation and he said that this is not good for mesothelioma its more effective on small golf ball size tumours as you have to inject into it and as mesothelioma is all around the lungs etc it would be to difficult to inject.

So thats another treatment that wont be followed in the UK -Oneday we will get something –One day.


Well Ray had a better day yesterday although he is always so cold with his blood thinned and we have the fire up at 25 most of the day. Im sweating and he is cold. he does wrap up in a dressing gown.

He is eating well now so Im very relaxed about his strength building up bless him.

Im walking Louis we have a routine going and the dog is being very good that he isnt going to far. We do have a ball game so he can run a bit in the garden to release more energy.

The weather is just to cold for Ray to go out, even the garden is out of bounds as there is still snow hanging around and the water butts are frozen.

The daffodils are coming out though even if spring is on hold this year.

I hope there is a letter this week for Ray to go and have a check up. It has all gone quiet, They leave you in the dark and you have to just keep taking the pills.

He now takes so many pills each day.

So Its Monday -I wonder what this week will bring??

Rays blog


Living with Mesothelioma -My Diary- The ADAO Awards and conference

The dog doesn’t realise that I sat up to the early hours so that I could watch the ADAO award ceremony.

We had been watching all day through the conference

The day started with

The postman has just bought be a parcel of Flowers and chocolates from Debbie –To Ray and Louis as well I love surprises–do I have to share the Chocolates though or can I hide them in the bedroom and have them when everyone’s asleep ♥
Thanks Debbie
Debbie of  won the Award last year and was able to fly to the USA but of coarse she came back and then found her Theo to be growing again. It is a risk you take when you fly and I just would not take that risk. My Doctor has said anything can happen in a long haul flight, a lung could collapse even in a presurised cabin and also the recycled air is bad for us Mesothelioma sufferers. Then of coarse Ray went and had his heart attack so I wouldn’t want to leave him hereon his own so its great I had carried out a secret acceptance with Linda.

Photo: One of my favorite spitfires from the UK, Christine Winter.. talking on the asbestos ban in the UK...

We heard many speakers and Christine gave the best I have heard which was great as she mentioned me and my IATP award with the wonderful night we had in Derby in January.

She holds that dear to heart as it was the first one IATP had attempted and it was such a great success.

Photo: This panel is all about prevention. Experts in the field of asbestos laws and education on abatement.. all agree that the laws aren't doing what they should.

This panel is all about prevention. Experts in the field of asbestos laws and education on abatement.. all agree that the laws aren’t doing what they should.

John Thayer told the real story.  They found asbestos under the steps of the capital building evene

We learned that 20% of cancer patients are available for clinical trials but only 3% actually participate! The National Cancer Institute says more people are needed to help find a cure!.and money is needed to fund the trials – All the same problem as us when it comes to Clinical trials –US doesnt have as many trials as we thought.


We are seeing at Baron and Budd is accurate. More women are being diagnosed with mesothelioma.
This photo is Dr Lemen presenting an award to Dr Miller

Sweden banned asbestos 30 years ago and have had a “decline” in asbestos related diseases and deaths…..seems congress could learn some thing from our European friends…..I think the USA needs to feel some shame+guilt=shuilt regarding why our elected officials are not showing leadership in this country and stepping up to prevent the horrors asbestos brings.

Think Asbestos has been banned in the US ? Think again.. they still import it to the tune of 100 tons a YEAR…
It’s still widely used in brake shoes, roofing, and many commercial applications.


Heather Von St James USA with Lou Williams from Australia who will travel back and into Chemo bless her
Rod and Lou and Karen
Rod from Australia who I have written so much about through my Blog and he is married now to Karen Banton who is speaking again today at the brunch.
She is next to Lou on the left hand side
Then late at night I sat up and received my award
I can officially show it now  The Alan Reinstein award.
  • At the moment this is the best picture but it will be on You Tube where I will be able to show my Acceptance !

    I did raise a laugh when I said I was on Centerfold in the BLF Annual Revue The only time i would get centerfold ha ha !!!

    There are more talks today at the Brunch so I haven’t finished reporting back but this is just a little of a wonderful day.

    Schedule Of Streamed Events:

    Saturday, March 23

    Academic Conference

    8:30 a.m.-11:30 a.m. & 12:30 p.m.-5:00 p.m.

    ADAO Awards & Recognition Dinne

    6:30 – 9:00 PM Performance by Jordan Zevon, Awards and Recognition Dinner
    U.S. Representative Lois Capps, Tribute of Hope Award Video Acceptance (Presenter: Dr. Richard Lemen)
    Dr. Celeste Monforton, Dr. Irving Selikoff Lifetime Achievement Award (Presenter: Dr. David Michaels)
    Karen Banton, Tribute of Inspiration Award (Presenter: Ann Samuelson)
    The International Association of Heat and Frost Insulators and Allied Workers,Tribute of Unity Award (Presenter: Dr. Arthur Frank)
    Rob Cagle, Alan Reinstein Award (Presenter: Linda Reinstein)
    Mavis Nye, Alan Reinstein Award Video Acceptance (Presenter: Linda Reinstein)
    Jordan Zevon, ADAO National Spokesperson
    Recognition Herman Hamilton, ADAO Executive Assistant
    Recognition The Raye Family, Diamond Donor
    Baron & Budd, P.C.,2013 Platinum Sponsor
    Motley Rice LLC, 2013 Platinum Sponsor
    Simmons Law Firm, LLC, 2013 Platinum Sponsor
    Early, Lucarelli, Sweeney & Strauss and The Nemeroff Law Firm, 2013 Silver Sponsors

Living With Mesothelioma –My Diary– ADAO Conference will be starting tomorrow.

I thought someone had made a mistake and these were late greeting s but no they mean them and how true they are.

It has been so cold today and friends up north of London have been reporting the snow

that is falling again.

Ray has had a good day and really eaten well today. I wish he could go out but he cant its far to cold .


Will it ever warm up again.

My friend Annette put this on


But I said this time last year in the very warm March day that we will pay for this later –and we did so now Im saying we will have a heat wave by July —will we ????


Can you believe this picture –how can this even happen in this day and age.

Truck driver dumps two tonnes of asbestos outside of two inner city childcare centres. Security footage shows the truck, which drove through the area once before returning to dump the waste, had a piece of cloth over the numberplate, in an apparent bid to avoid detection. The city is now calling on any members of the public that recognise the white Daihatsu Delta, which was fitted with a non-standard bar that had been welded across the top of the tip tray. It also had a large crack near the driver’s door when the tray is down and visible scratches on the tray and door on the driver’s side. Anyone with information on the truck is asked to phone 02 9265 9333 or email Read more:

I know it is in New South Wales but this happens everywhere. People just dump their rubbish. They need to be caught and put in jail for it.

Derrick Fernie a warrior in Canada  write a poem that is ringing true


A mineral from the gods they say,
But the public would rue this day.
A deal was cut, public safety betrayed,
University papers were put into play.

A hundred years of death and disease,
Cancer runs rampant with ease;
Corruption takes place it’s a breeze
Death like this makes a man’s soul freeze,

Mesothelioma eats you alive,
With it nothing, will thrive.
There’s no risk they do contrive
Business, we are just trying to survive.

Your family will mourn,
You will wish never to be born.
Grandchildren remember forlorn.
Family’s broken and torn

Good men will say nothing,
To stop this evil thing,
Money in their pockets it will bring
Big business registers continue to ring.

I will be sitting with my computer for the next 2 days as the ADAO conference is Live Stream

ADAO Is Pleased To Announce That We Will Be LIVE STREAMING Our Conference This Year!

To Access This Live Feed, Simply Click On The Following Ustream link:

Schedule Of Streamed Events:

Saturday, March 23 Academic Conference 8:30 a.m.-11:30 a.m. & 12:30 p.m.-5:00 p.m.

ADAO Awards & Recognition Dinner 6:30 p.m.-9:00 p.m.

Sunday, March 24 

Unity & Remembrance Brunch

9:30 a.m.-11:30 a.m.

Its here and I will officially accept my ADAO Award with pride




Rays Blog

Living With Mesothelioma–My Diary– Ray is getting stronger and eating better now.

We have had a very quiet day as Ray rests a lot and it is to cold for him to go outside. He is eating better and Im enjoying cooking lovely soups from next to nothing.

I used an onion and cabbage, green and orange peppers, carrots and vegetable stock. Cooked and Liquidized means Ray gets his fair share of vegetables.

Apples sliced up with pineapple and pomegranate seeds in a yogurt and he is getting his fruit.

Tonight his dinner was chicken and ginger strips in a lemon sauce with rice and several veggies again.

He is eating all this light food much to my amazement. Although this afternoon he was tired he now has perked right up and is listening to music on the computer with head phones on so he cant hear me talking about him

I have managed to walk Louis twice today so Im getting lots of exercise. Hence Im always ready for bed by 9.30pm.

Debbie has got an appointment to see

ADAO 2012.Debbies speech. Great memories, great conference x x Looking forward to supporting the 2013 conference. Now I have to follow this I hope I make her proud of me and see me as a worthy Mesowarrior to follow in her shoes and I to become a ADAO Warrior as I receive the Alan Reinstein Award.

This weekend the 2013 ADAO Conference begins and Warriors are travelling from all over the world. People that Im proud to know but in away wish I hadnt made friends as it means we share Mesothelioma together.

Steve McQueens wife spoke in 2012

Meetings like this are great as we share all the knowledge of the latest trials and treatment. Doctors and Oncologists talk to us and patients say how life really is as we survive together and Carers talk about what life is like to care or loose. Its very sad and yet laughter fills the rooms as well.

Much of this research is scientific and being carried out in the laboratory. The medical research described is being carried out in early clinical trials, mainly outside the UK. The results of research are shared internationally through medical publications, conferences and educational meetings.

Further information about Mesothelioma clinical trials can be found by following the link below. Please note this is the National Institutes of Health’s website in the US and includes trial information for trials being undertaken by the National Cancer Institute in the USA and other countries including the UK.

Clinical Trials.Gov – US National Institutes of Health

Proteosome Inhibitors

Proteosome eliminates old proteins in normal cells. Drugs called proteosome inhibitors interfere with how proteosome works, and cause cells to die. Cancer cells are much more sensitive to the effects of the proteosome inhibitors than normal cells, therefore cancer cells will be destroyed more readily than normal cells.

An International Research Trial to investigate this is now open in the Republic of Ireland, Netherlands and Belgium and is due to open in the UK this year. This trial explores the activity of a Proteosome Inhibitor called Velcade (also known as bortezomib), currently used to treat myeloma (cancer of the bone marrow). Velcade holds back the proteosome. A second European Research Trial is now enrolling patients and exploring the combination of Velcade and Cisplatin chemotherapy.

New Blood Vessel Growth

In order to grow, malignant tumours (including Mesothelioma), need to grow new blood vessels. The growth of new blood vessels is called angiogenesis.

A new family of drugs called angiogenesis inhibitors target the development of new blood vessels to slow down their development and, therefore, the growth of malignant tumours. These drugs have been shown to be effective in treating other cancers, such as lung cancer.

New blood vessel growth (angiogenesis) is promoted by specialised “growth factors”, one of which is called Vascular Endothelial Growth Factor or VEGF. Research is underway to investigate the activity of drugs that inhibit the action of VEGF in Mesothelioma including PTK787, AZD2171 and Bevacizumab.

Growth Factors

Drugs to Inhibit Growth Factors

Cancer cells require growth factors for survival. Recently it has been discovered that blocking such factors may slow down the growth of malignant tumours. Research has found that Mesothelioma cells respond to EGF and VEGF. Blocking the response to both EGF and VEGF may halt or reverse Mesothelioma growth and this is being explored in an early clinical trial in the USA.

Drugs to Activate Cell Suicide Proteins

Cancer cells contain a family of proteins on their surface called death receptors that when activated, kill the cancer cell. Very early clinical research will be undertaken to see if Mesothelioma cancer cells will respond to the activation of the death receptors.

Enabling Genes to Work Again

When a person has cancer some genes are prevented from working. When this happens it may result in uncontrolled cell growth and, thus, tumour growth. Histone Deacetylase Inhibition (HDACi) is a new way of enabling these genes to work again. In mesothelioma, research is both ongoing and planned in an effort to identify whether the use of HDACi is effective in preventing tumour growth and whether the use of an HDACi will also increase the effectiveness of other chemotherapy drug treatments on mesothelioma tumours. For example, the drug SAHA (suberoylanilide hydroxamic acid) is a Histone Deacetylase Inhibitor (HDACi) and is currently being used in mesothelioma research.

A great article was published today about Decorating your house.  This is the 2nd wave to come and the new figures now come from the Mesothelioma that DIY  is causing.

QUESTION: Our house was built in the early 1970s and has popcorn textured ceilings. The ceilings have been painted. I know the ceilings might contain asbestos, but how do I clean the cobwebs that have collected on them? I am afraid of disturbing the asbestos. — J. Tracy

ANSWER: You are correct that the ceilings might contain asbestos. Popcorn textured ceilings with asbestos were sprayed on the ceilings of countless homes and apartment buildings in the 1960s and 1970s. Asbestos was banned in 1978, but any ceiling installed prior to about 1980 should be suspect.

Your first step should be to test one of the ceilings to make sure you do have an asbestos problem. It is best to have testing done by a certified professional, but you can also buy an asbestos test kit at some home centers or on the Internet; instructions for taking a sample and sending it to the laboratory are included.

If the popcorn tests positive for asbestos, you have a bigger problem than cobwebs, but more about that later.

It must be stressed that there is no way to guarantee absolute safety in tampering in any way with asbestos; you must be the judge of whether your ceilings are firm and stable enough to attempt cleaning. The paint might add some stability.

If these were my ceilings and I felt the popcorn was firm and stable enough, I’d get a stepladder, a spray bottle that produces a fine mist of water, and a paint brush about three inches wide with very soft bristles. I’d mist the area around a cobweb (damp popcorn is less likely to flake) and very gently and carefully try to remove the cobweb with the brush, touching the cobweb only and not the ceiling.

I would also wear a good dust mask, preferably a respirator-type mask, eye protection, a head covering, and immediately wash the clothes I wore after removing the cobwebs. If the popcorn showed any signs of crumbling or flaking, I’d stop at once.

You might get suggestions from some sources to use a brush attachment on a wet-dry vacuum cleaner, but I don’t recommend this; these vacuums suck in dirt, but spew some particles into the air while doing it.

But the bottom line isn’t just removing cobwebs. If you plan to sell the house at some point, the popcorn ceilings will be a major drawback. Removal by accredited experts would be very expensive and is not recommended except as a last resort if the popcorn is damaged (the Environmental Protection Agency says the best way to treat asbestos-containing materials in good condition is to leave them alone).

Some asbestos materials can be encapsulated or covered up, but this is difficult with popcorn ceilings because almost any treatment, such as covering with a layer of drywall, is likely to be a health hazard by causing the popcorn to break up and put particles in the air.

One possibility is suspended ceilings, which consist of large removable tiles in a metal grid below the existing ceiling. But the popcorn would still be there and you would need to disclose its presence at sale, although it should solve your cleaning problems and make the rooms more attractive.

Painting is not considered a good option, but some people paint anyway. If paint is used, it should be oil-based and applied with a low-pressure (HVLP) sprayer. Latex paint applied with a roller can cause popcorn to loosen and fall off.

QUESTION: There are some fairly large cracks in my concrete driveway. I think I know how to repair them, but I’d like to make the patches blend into the rest of the driveway. Is there some way to give the patching cement a darker color so it looks old? — M. Silver

ANSWER: Quikrete, a maker of concrete products sold at many home centers, has a line of liquid dyes that can be used to color concrete.

The dyes are sold in 10-ounce bottles, and one of the colors is charcoal. With some experimenting, you should be able to use this to approximate the appearance of your driveway.

You might be able to buy the dye at a home center near you, or you can search the Internet with the words Quikrete Concrete Colors to find a source. The dye is mixed with the water used to prepare the patching material.

 Rays Blog