Been a busy day today getting ready for a trip to Plymouth for a party Saturday night.

Clothes all ironed and packed so they will get screwed up in the case.

We wrapped all the Christmas parcels that have to go in the post so they can go to the post office tomorrow.

Got pressies to take with us to our Sons so he can put them under the tree. We are so ahead I hope this continues.

Doctor from The Royal Marsden phoned and asked if I heard from St Georges and did I know my result of the Hormone test.

I told him I haven’t so he said he would chase it.

Report stage for the Medical Innovation Bill is set for December 12th 2014.
I wish them luck I want to see the Bill through. It is Essential for Terminal Patients and to forward innovation for rarer cancers and other illnesses.
Great Letter from my MP Julian Brazier
So pleased he answered my email
I know through my Doctors how hard everyone is working to get things moving forward all the time.
So a political day today as well.

dragon fly2

 

 

 

 

 

 

 

It was a very sleepy Mavis that got out of bed 4.30 this morning. This is getting harder as the winter goes on. Dark mornings and going to the Marsden is getting harder.

I have to tell myself that that is why Im still alive I have to make sacrifices and giving up my warm bed so early is one of them.

Ray walked Louis up a dark lane that is still a bit flooded.

We have had so much rain that everywhere is so dripping wet.

Anyway off on the motorways and in with all the other traffic we sped. M2, M20, M26 and M25 we sailed through and got there at 8am.

I was called in early but then Sister said oh sorry I forgot I have to go to a new trial meeting so she left me in the capable hands of a young nurse who weighed me blood pressure and urine test.

Bloods taken meant I could go back to the waiting room and wait for the Doctor.

A new Doc put his head round and called me. Im getting used to the rota the Doctors do so as to all be able to study each patient.

We talked about my cough and he prescribed Carbocisteine tablets

http://www.patient.co.uk/medicine/carbocisteine-mucodyne

Mucolytic medicines, such as carbocisteine, can be helpful for people with a long-term respiratory disease such as chronic obstructive pulmonary disease (COPD).

Carbocisteine works by making mucus (phlegm) less thick and sticky, and therefore easier to cough up. It may also have a knock-on effect of making it harder for bacteria to cause chest infections.

It needs to be taken regularly, and is most likely to help if you have moderate or severe COPD and have frequent or bad flare-ups.

Im so grateful for these as I have taken 2 so far and they have really drained the Mucus that not only has given me a bad time with the virus but also with the Mucus a Meso patient has due to a bad lung.

He also chatted about St Georges and that the Hormone test result wasn’t back yet.

He also discussed the last  scan and to be honest I don’t quiet understand. He said that shrinkage now that it is over 50% as long as the trend continues on its present coarse of reduction. They dont need to measure –hmm I don’t see that. I like to know the measurements. Or is it that it is now on its way to nothing. Wouldn’t that be brill.

Next scan is January 2nd.

He gave me the best physical examination of all the doctors. A very thorough young man, lots of banging of my chest and listening as I breathed in and out. My chest is clear of any virus infecting it.

Then he listened to my tummy through the stethoscope. I laughed and said “oh don’t please I have the loudest tummy.” He laughed and said the sign of a healthy gut.

So that was it we had to wait for the bloods result and then the drug is made. This is the boring part. We had coffee and a cake read the paper and a magazine.

Ray went to sleep.

I people watched and chatted to other patients.

Finally at 1.30pm I was called in to have my wonder drug.

First they had to draw of the 3 phials of blood for my DNA trial that done 30 mins of being fed my wonder drug through my PICC line and then a 5 min flush. It was over.

Im all topped up again and my Miracle drug is in my veins –I love it MK 3475 do your work.

We love it when we leave through the doors out into the fresh air.

The journey home was no problem only that we drove into rain after we had watched a sunny day through the windows.

I came home to the sad news that we had lost a lovely Mesowarrior

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Rays Blog http://mesoandme.wordpress.com/2014/11/18/tuesday-118/

 

 

 

 

 

 

 

 

I have had a better and quieter day. I haven’t coughed to much and so I feel Im coming back. I don’t want that to happen to much. I was frightened when I couldn’t breath.

It has been a very drab day anyway but I did go out with Ray and Louis and bought a lovely pair of black shoes for all the parties and dancing we are going to over Christmas.

So much planned that I said to Ray just open the diary each day and deal with one day at a time or I will panic.

I have bought a new wardrobe of clothes so that it I will pack our case tomorrow as we have a 18th birthday to go to. A very special young man. I will be meeting Debbies son at last.

It has been a very thought provoking day today as our daughter would have been 5.3 today. We have missed do many wonderful years that should have been filled with lots of fun and laughter, weddings and grandchildren have all been denied to us.Oh life is so cruel at times.

Christines Story Misadventure or Misjudged

This is my account of my 16 year old daughters tragic death at the hands of an irresponsible 15 year old boy.

My disgust at the Coroners verdict.Could more have been done to bring the culprit to justice?.

http://www.lulu.com/shop/raymond-nye/christines-story-misadventure-or-misjudged/ebook/product-17357980.html

Do you know I feel like I have been fighting for justice all our lives. Christine and then Asbestos and Mesothelioma why is life so hard.

Her 13 birthday dance with her dad –we miss you baby xxx

Rays Blog http://mesoandme.wordpress.com/2014/11/16/sunday-105/

Well I have found out what having a chesty cough is like with a damaged lung.

I have been sounding like i smoked 100 fags a day a true smokers cough.

This virus has really pulled me down but on going to bed last night for an early night the coughing really got underway. I could cough out but couldnt breath in again to do the next cough. Phelgm came up and could only go through my nose. My airway was completely blocked.

Gradually it got better for me to be able to breath again. Thia went on all night and I really thought I ought to phone the hospital. I did drop off but then awoke again but I was still here this morning. I have often wondered what it was like to have a damaged lung and a cold -well now I know. Lucky I had a good cough medicine

I try had not to cough and I have rested this morning and had a shower so I feel human again.

So I will carry on resting although I have been involved in a heavy discussion about The Saatchie Bill.

The hhttp://www.bbc.co.uk/news/uk-england-essex-30066641ead lines for hospitals isnt very good this morning

Inspectors from the Care Quality Commission have declared a major incident at Colchester Hospital

Still in trouble’

“We’ve had a year, eighteen months of problems at Colchester General Hospital, the former chief executive, chairman and numerous members of the board have all gone, there’s a new team in there and I’m hoping that they will turn it around.

“There’s no criticism here by the way of the front-line medical staff and support staff, the criticism I have is the management historically and I’m just hoping the new management team are going to sort it out, but clearly this is very worrying.”

Elderly patients and dementia sufferers have been ‘restrained unnecessarily’ and given ‘inappropriate sedation’ at a hospital where health watchdog inspectors have declared a major incident, it has emerged.

A ward at Colchester Hospital, in Essex, has now been closed to new admissions after inspectors from the Care Quality Commission (CQC) found it was struggling with “unprecedented demand”, with patients being urged to got to it’s A&E department only if they have a serious or life-threatening condition.

But it is understood that serious concerns were also raised by CQC staff about the inappropriate restraint, sedation and inappropriate resuscitation of elderly people, some of whom were suffering from dementia.http://www.telegraph.co.uk/health/healthnews/11232953/Patients-inappropriately-detained-at-crisis-hit-Colchester-Hospital.html

And a very sad case http://www.mirror.co.uk/news/uk-news/dying-husband-kept-hospital-store-4625397

A grieving widow has slammed a hospital after her husband died in a store room because of a lack of beds.

Beryl Matthews, 66, was furious when cancer sufferer Tony was moved into the cramped room, which has no windows.

She says the retired builder was forced to choose between a “glaring fluorescent light” or darkness as he lay dying of mesothelioma.

When Beryl asked nurses for an extra pillow she was told there were none available.

The grandmother-of-three said: “I was told they hadn’t got enough beds and so they had to convert store cupboards to make another bedroom.

They really have got to sort out our over crowded hospitals it cant go on this way. A&E must mean just that EMERGENCY ONLY. We have to build up walk in clinics to take the pressure.

Rays Blog

http://mesoandme.wordpress.com/2014/11/15/saturday-99/

 

We were very shattered from the 2 trips to London and then I couldnt sleep. So much going around my head at the moment.

I did power nap Ray just conked right out bless him.

We got some frsh air and walked Louis at Tankerton and I did catch up on the washing and wrapped some Christmas presents.

Then last night an instant sore throat and runny nose has bought a virus. I do worry as I have to us hand rails and toilets and I see germs everywhere, you know they are there dont you as you travel where thousands have traveled before you.

Lots of warriors are traveling to Australia to the first Asbestos Safety Conference.

The Mesowarriors have come a long way together around the world and people work tirelessly for Mesothelioma the disease from Asbestos exposure.

We have the Medical  field and Scientists, MP.s and so much more who are dedicating their life to the disease and how to find that cure. You can never say no money is spent (maybe not enough but thats the same in any disease)

We Mesowarriors made up of Patients, but sadly more carers who have lost loved ones. We have really fought together and built a community up as we help each other through the social media. But also some of us have built up a Soppurt group from our own homes and receive emails and telephone calls where comfort and help newly diagnosed people who have that shock we all had when first diagnosed. So many dont realise it is their right for second opinions, or where a trial can be found and we point the way.

Im so proud of the warriors and the way we run ourselves and keep in touch— together. We do have fun with Secret Santa and social meet ups as well as our very serious roll of raising awareness and raising money for research. So many people working so hard. I didnt realise until I went to the Workshops and met so many wonderful people.

Here I would like to thank you to Mesothelioma Uk for all your hard work for us mesowarriors  http://www.mesothelioma.uk.com/

But where we do need help is in the Banning of Asbestos to get it out of our lives. We need a safer future for our children in their schools and the environment.

This is where these Conferences pave the way but I do believe we need Mps and the Industry more involved and invited to come to these conferences to really see just what Asbestos has done and will still do if we dont sort the problem out.

I have a voice (we have a voice) Lets use it.

Linda Reinstein has written a blog to celebrate the Conference

NEW BLOG: ADAO is honored to be an invited guest and present at the 1st International Asbestos Safety and Eradication Agency Safety and Management Conference in Australia. I will be sitting alongside many of the world’s top ban asbestos leaders at this event including Dr. Richard A. Lemen, Dr. Ken Takahashi, and Laurie Kazan-Allen. As one of the globe’s leaders in asbestos prevention, the Australian government serves as a model for other countries and I couldn’t be more pleased to be a part of the conference. Learn more here! http://bit.ly/10yw6H5

12/11/2014 – Tyabb – Victoria – Australia
Our latest flyers to promote Asbestos Awareness Week in Fed Square Melbourne, and the Bernie Banton Day celebrations – please distribute. – Rod Smith

 

A wonderful bog giving the scientists view of the Saatchi Bill

http://medicalinnovationbill.co.uk/why-the-research-community-needs-to-rethink/

Professor Andy Hall

By Prof Andy Hall ­–   Professor of Experimental Haematology, Newcastle University

There is a deep-rooted and complacent culture across substantial sections of the medical research community that all is rosy in the garden, that we scientists know what we’re doing and we don’t need any help from outsiders.

Men and women of science should, of course, welcome challenge. It is the grist to the scientific mill – to propose a thesis, and test it, to see if it stands up or falls down. This is what science is about.

But when it comes to medical research and cancer research in particular, there is a sensitivity to challenge that tends towards destructive defensiveness and at times a pig-headed aggression.

For those who want to find new treatments for cancers, this is a problem. Progress in many areas of cancer research has been painfully slow. This is not for want of trying, or of bad intentions, there really are “no villains in this story”. It is because cancers are incredibly hard to tackle.

Many researchers have focused on developing therapies that target individual gene mutations within a tumour. But tumours are often heterogeneous with multiple mutations that will never respond to just one drug.

This focus on the individual gene mutation is in part a legacy of the phenomenal – but one-off – success scientists and doctors had in finding a cure for Chronic Myeloid Leukaemia a form of cancer which is almost unique in having one driver mutation.

Many of us have become fixated on this  success and we have become accustomed to a method of research designed to repeat it.

But sadly it will probably never happen. Unfortunately this means the science community is stuck in a rut. A culture of group-think has taken over and it is reinforced by an endless round of conferences where we clever laboratory kings and queens speak only to each other swapping high-minded clever research papers – all based on the same research methodology.

We need to break out, we need to be challenged and we need to accept that too little progress has been made in finding new cures for cancers.

But the problem is fundamental. My generation, who are now leaders in our research labs, hold our beliefs so dear that any challenge feels like an assault on us as people. Our work and our beliefs are bound up with our identity.

When pushed, doctors and researchers can be genuinely unpleasant to those who challenge them  – I’ve seen this at first hand. But to repel contrary thinking is a derogation of the scientific principle.

One area that must be challenged is the singular and exclusive reliance on old-school and large randomized clinical trials.

Of course, they have their place. But they are slow, cumbersome, expensive and at times wholly inappropriate to the needs of science and, more importantly, patients.

We also need smaller, faster, lighter trials with fewer participants. Trials that are easier to set up, when – as in the case of rare diseases and diseases affecting children – which can be set up quickly, and, crucially, can be adapted quickly during the trial.

We must no longer only rely on trials designed to detect small changes, which need large numbers of patients to find only marginal.benefits.

We need more, smaller, cheaper trials where we look for big effects. And we must record and share the data of success and, very importantly, of the inevitable failures.

Patients deserve this. Particularly, patients with rare diseases where there are never enough patients to fill a large and traditional randomized controlled trial

We need to challenge ourselves and we need to change.

Fortunately new ideas are emerging which are provoking debate and new ways of thinking.

One is the  Medical Innovation Bill. It will encourage doctors to try novel treatments in a clinical environment.

It is not the only answer, though it will certainly help encourage innovation. It is just one solution to a raft of problems that must be resolved. But my interest and support for the Bill is based on this – it is a start.

It is new thinking. It is challenging, it has  inspired debate – as well as anger among some conservative colleagues – that is driving scientists to question themselves and their ways of working.

This has to be good for patients.

Rays Blog http://mesoandme.wordpress.com/2014/11/12/wednesday-106/

Another day out on the train to Tooting Broadway. What a musical name.

Such a long journey on the train as it might be cheaper than the fast train but it takes hours.

We finally pulled into Victoria and then walked to the underground and had to get a train on the Victoria line changing to the Northern line.

Few we were so glad to arrive just before 11 at St Georges hospital At St George’s Hospital the  endocrinology department is part of the internal medicine, located in the Thomas Addison unit.

As we sat down all of a sudden everyone went quiet and dint move. Just like in a film. -weird then I realised it was the 11th hour on the 11th of the 11th month.

Everything had stopped.

The nurse came out and called me in and said sorry but she would have got me in and then wouldn’t have been able to talk to me.

She explained that The adrenal glands are located on top of the kidneys and secrete adrenaline, aldosterone and cortisol. These hormones maintain salt balance, blood pressure, and help maintain fluid concentrations in the body. Common adrenal disorders include Addisons Disease, Cushings Syndrome, hyperaldosteronism and adrenal tumors.

They are looking at my cortisol and that is the blood test they were doing today.

A cortisol test is done to measure the level of the hormone cortisol in the blood. The cortisol level may show problems with the adrenal glands or pituitary gland. Cortisol is made by the adrenal glands . Cortisol levels go up when the pituitary gland releases another hormone called adrenocorticotropic hormone (ACTH).

Cortisol has many functions. It helps the body use sugar (glucose) and fat for energy (metabolism), and it helps the body manage stress. Cortisol levels can be affected by many conditions, such as physical or emotional stress, strenuous activity, infection, or injury.

Normally, cortisol levels rise during the early morning hours and are highest about 7 a.m. They drop very low in the evening and during the early phase of sleep. But if you sleep during the day and are up at night, this pattern may be reversed. If you do not have this daily change (diurnal rhythm) in cortisol levels, you may have overactive adrenal glands. This condition is called Cushing’s syndrome.

The timing of the cortisol test is very important because of the way cortisol levels vary throughout a day. If your doctor thinks you might make too much cortisol, the test will probably be done late in the day. If your doctor thinks you may not be making enough, a test is usually done in the morning.

So blood was drawn off and then a drug put in but I had no ill affects. I then waited fir half an hour and more blood was taken. That was it I could go home. So all that traveling, which ended up as a whole day, as we didnt get in until 3pm.

I cant believe that. Surely we have endocrinology departments in nearer hospitals. I asked the nurse and she said it was because St Geroges backed the Royal Marsden and the trials there. I can see that but Train fares and the fact we had to get a trial to London then 2 tube lines really is naughty when you  are ill.

On top of all that the nurses didn’t even know about Mesothelioma. I had to sit there and educate them. That really annoys as they are working in a very old hospital that they might be surrounded by Asbestos.

Anyway they were lovely and friendly as always in the NHS and we did have a laugh.

When we got home Ray and I were exchanging our people watching skills and its so funny that we saw different people. One thing we did notice is that people are so much friendlier on the tube and train than they used to be. Its not a case of dont look at each other but there are lots of smiles and nods and winks. young people fall over themselves to let us have a seat. Is the world changing at last. Or was it always like it and we just dont take time to see.

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There was a man on the train coming home, all dressed up in a suit eating a bag of crisps then a long roll. He will be in line for heart problems in later life.

A younger woman by the side of us ate her roll so quick and then gulped lemon aid down so fast she gave an almighty burp. I laughed and she was so embarrassed. She said her throat really hurt and I said Rub your chest. Another burp helped her problem.

On the underground a young but very big coloured chap got on and I thought, Oh he looks like a drug dealer. He gave us a huge smile. You just never can really sum people up right appearances can be so deceiving.

We were shattered and just chilled out after 2 days train journeys. How do they do it everyday and work I do not know.

http://www.uchc.edu/patients/services/endocrinology/index.html

Rays Blog http://mesoandme.wordpress.com/2014/11/11/tuesday-113/ He is still happy with all this traveling. I do feel for him as he must be tired out.

 

 

 

You may have completed the original survey about your experiences of diagnosis, treatment and care of mesothelioma.

The James Lind Alliance created a list of the questions identified from the original survey of patients, carers and health professionals and wanted to know which questions we thought were the most important based on our own personal experience.  The ones chosen as priorities were then used in this workshop lto create a final shortlist.  That final shortlist will be promoted to researchers and research funders, to highlight the questions that mesothelioma research needs to answer.

The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and priorities the top 10 uncertainties, or ‘unanswered questions’, about the effects of treatments that they agree are most important.

This information will help ensure that those who fund health research are aware of what matters to both patients and clinicians.

This website contains information for those interested in finding out more about the JLA, and those who wish to become involved.

Check the Link to find out about what the JLA does, andwatch a video describing the JLA’s approach to stakeholder involvement in research priority setting.

http://www.lindalliance.org/

With this invitation Ray and I set of on the fast train to St Pancreas today in the rain.

I love the speed of the train and we arrived into London at 8.30am.

Walked past the Novatel Hotel that holds a lot of memories for me of past Mesothelioma UK Conferences and the ghosts of Mesowarriors that have passed. I must admit a was hoping to see a white feather.

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We arrive at the building for the meeting so it was easy to find thank goodness.

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So many old and new friends. Prof Dean Fennel, Jeremy Steel, Liz Dawlinson among them and warriors, carers and health professionals so it was a good mixture of people.

We met in Room 1 where it was all explained to us and then we were divided into 3 groups. Ray went off with Dean Fennel I was a little jealous but I had Jeremy Steel so that made up for it.

I met up with a wonderful man that had me laughing all day Vince (My Hooray Henry) He was so posh but he was lovely.

Leah a Carer was good and very knowledgeable as was everyone else and we soon had our list of questions in order. So we went to lunch. After lunch we had to go into other groups and sort out the questions that everyone had sorted it is a process of elimination of what trials should be funded.

By the time we went back into room 1 it was getting harder to keep going over them but we did and every one is happy with the outcome. It will all be published so I will be able to put the final report on here.

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The final decision is made.

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I have found out that if my visit to St Georges does mean my hormones are upset by the trial they will sort it out for me, I wont need to come off the trial. So I was so relieved.

In France where they have been carrying out the trial people didn’t get any result for about 5 months and then it happened and the Immune system was turned on. So that’s why my results are doing even better as at the first scan I had 33% shrinkage.

It appears though that Immunotherapy doesn’t suit  everyone. I hope they improve on that.

We said our goodbyes and got back to the station to catch the fast train with a minute to spare. It was packed but we did get a seat.

It was good to get home and have dinner.

Now we have to go out again tomorrow. Being ill is a busy time.

Rays Blog http://mesoandme.wordpress.com/2014/11/10/monday-104/

dragon fly painting

 

 

 

 

 

 

 

I had been working through into the early hours and  so I thought I would lay in but of coarse I didnt. I had reset my computer and taken Chrome off to see if the computer speeded up.

I went back to Firefox and it now zips along as I work. Only thing is you have to re-enter passwords and of coarse I haven’t always written then into my note book.

Then this morning some of the Meswarriors group cover pictures had gone so I had to re load photos and pictures in.

But Im still very happy with the speed and to think we were going to go and buy another hard drive.

I did make lunch and we went out for I wanted to buy another coat as I have two trips to London and one to Plymouth as well as Going out Christmas. I love my M&S coat but I’m always in it and it is cream so I have to wash it often as it shows the dirt very quickly.

We stopped at a dog walk for Louis, great he ran off with his toy that we throw and stopped dead at the flooded road. So much water around already we dread to think what the winter will be like as the water table must be full.

Off we went to Georges at Asda, the traffic was at a stand still as people must be out Christmas shopping.

I found a lovely red coat and I carried on shopping for little bits I had run out of.

We got back home and the afternoon had gone.

Cooked Dinner, I made a chicken tikka  that was a little bit spicy. This sets Rays nose to run. he he !!!

So thats it Saturday is almost over.

The Appointment came for Tuesday at St Georges Thomas Addison Unit for a Short Synacthen Test

This test is carried out to assess the function of the adrenal gland.

The adrenal glands are tiny organs that rest on top of each kidney. Despite their small size, the adrenal glands play an important role in the body, producing numerous hormones that impact our development and growth, affect our ability to deal with stress, and help to regulate kidney function.
The cortex, the outer portion of the adrenal glands, produces several hormones that affect blood pressure and blood sugar levels, growth,

Because the hormones released from the adrenal glands are so important to the overall functioning of your body, adrenal disorders can have serious consequences on your health. Tumors of the adrenal glands can secrete excess hormones, causing an increase in blood pressure or heart rate and reducing immune function. Disorders that result in decreased adrenal gland function, such as autoimmune diseases or cancer, can lead to low blood sugar and heart failure.
I have been testing my blood sugars and the figures have neen in the norm but I did have a funny feeling just before lunch so I tested my blood and it was 3.6. Not dangerous but it had dropped from 5.5.
I pray this doesnt mean I have to come off the drug and that they can balance everything out for me.

Read more : http://www.ehow.com/about_4571567_function-adrenal-gland_.html

Synacthen injection contains the active ingredient tetracosactide. This is a man-made version of a hormone produced naturally by the body called adrenocorticotrophic hormone (ACTH).

Natural ACTH is produced by the pituitary gland in the brain. It acts on the adrenal glands, which are found on top of the kidneys, and causes these glands to produce steroid hormones. These include glucocorticoids such as cortisol and mineralocorticoids such as aldosterone.

Tetracosactide is used to test if the adrenal glands are functioning correctly.

Tetracosactide acts on the adrenal glands in the same way as natural ACTH. This means if the adrenal glands are healthy, a single injection of tetracosactide will cause the adrenal glands to produce its hormones, including cortisol, and this can be measured in the blood. If there is a problem with the adrenal glands themselves, the level of cortisol in the blood will not rise, or will only rise a little. This test is known as the short Synacthen test or Synacthen stimulation test.

If the test shows that the adrenal glands appear not to be working (this is called adrenal insufficiency), then further tests will be needed to determine if this is caused by diseased or damaged adrenal glands (primary adrenal insufficiency) or by a problem with the pituitary gland (secondary adrenal insufficiency). Synacthen depot is used for these further tests.

What is it used for?

  • Testing if the adrenal glands are working properly. This test can be used to rule out underactive adrenal glands (Addison’s disease).

How is this test given?

  • The short Synacthen test can sometimes be done by your GP, or you may need to go into the hospital endocrinology clinic for it.
  • Before the test a blood sample will be taken to measure the level of cortisol in your blood.
  • The Synacthen injection will then be given into a muscle or a vein in your arm.
  • 30 minutes after the Synacthen injection another blood sample will be taken to measure the level of cortisol in your blood.

Warning!

  • This injection can sometimes cause allergic reactions, including marked redness and pain at the injection site, hives, itching, flushing, faintness, shortness of breath and, rarely, collapse (anaphylaxis). You will need to be kept under observation for about 30 minutes after the Synacthen injection is given so that any reactions can be treated if necessary.
  • If you feel dizzy or get blurred vision after you have been given Synacthen injection, do not drive or operate machinery until these effects have worn off.
The wonderful photo for this weekend is this one
Just remembering xx

Another very rainy day and we have our fields flooded already. What will happen in the winter I do not know, where will all the water go.

I had a working day again today and then said to Ray its Thursday today. “No Its Friday” he said. I had to get my diary out to prove it to myself. How can you lose a day? its like having to turn the clocks 24 hours forward.

So silly.I have a diary filled with appointments. Conferences and Hospitals, Christmas and a Scan again 2/1/2015. Gee !! stop the world I want to get off.

I had a great debate in Lou’s  group in Australia I was saying that where the men work for a contractor there should be no ignorance of the dangers of Asbestos. There is no excuse for a man that works with and trains saying that Asbestos is not dangerous.

I was saying– that’s why  we need to invite more and more industry like the contractors and trainers to our conferences. Sit them down and show them what asbestos does. Just one fiber grrrrr

We lack Mps at our conferences.

I have made a note.

On investigation I found a list of where Asbestos is still used in the US ——

The manufacture, importation, processing and distribution in commerce of these products, as well as some others not listed, are not banned.

  • Cement corrugated sheet
  • Cement flat sheet
  • Clothing
  • Pipeline wrap
  • Roofing felt
  • Vinyl floor tile
  • Cement shingle
  • Millboard
  • Cement pipe
  • Automatic transmission components
  • Clutch facings
  • Friction materials
  • Disk brake pads
  • Drum brake linings
  • Brake blocks
  • Gaskets
  • Non-roofing coatings
  • Roof coatings

Regulatory history of asbestos bans

  • In 1973, EPA banned spray-applied surfacing asbestos-containing material for fireproofing/insulating purposes. See National Emission Standards for Hazardous Air Pollutants (NESHAP) at 40 CFR Part 61, Subpart M
  • In 1975, EPA banned installation of asbestos pipe insulation and asbestos block insulation on facility components, such as boilers and hot water tanks, if the materials are either pre-formed (molded) and friable or wet-applied and friable after drying. See National Emission Standards for Hazardous Air Pollutants (NESHAP) at 40 CFR Part 61, Subpart M
  • In 1978, EPA banned spray-applied surfacing materials for purposes not already banned. See National Emission Standards for Hazardous Air Pollutants (NESHAP) at 40 CFR Part 61, Subpart M
  • In 1977, the Consumer Product Safety Commission (CPSC) banned the use of asbestos in artificial fireplace embers and wall patching compounds. (See 16 CFR Part 1305 and 16 CFR 1304)
  • In 1989, the EPA issued a final rule under Section 6 of Toxic Substances Control Act (TSCA) banning most asbestos-containing products. However, in 1991, this rule was vacated and remanded by the Fifth Circuit Court of Appeals. As a result, most of the original ban on the manufacture, importation, processing, or distribution in commerce for the majority of the asbestos-containing products originally covered in the 1989 final rule was overturned.
    See 40 CFR 763 Subpart I.
  • http://www2.epa.gov/asbestos/us-federal-bans-asbestos#notbanned

There is a very interesting Conference coming up in Australia on the 16/17th of November,

http://asbestossafetyconference2014.org/program/

An interesting discussion will look at the challenges posed by asbestos in the residential sector and the increasing rates of non-occupational asbestos related disease. We will hear about the latest research into domestic exposure, and initiatives to raise awareness about the risks posed by DIY renovations. and  The case study will look at how to manage asbestos from a best practice perspective.

As a part of the workshop, Ergon Energy will outline the challenges in developing an asbestos management system, including training for staff to ensure that all work that may involve contact with asbestos is managed to limit any possible exposure.

All what I was saying we should have at our  conferences where the patient can then  talk to the Industry.

One of the real attractions will be Stan’s Van. The great invention of Bernie Banton  Foundation.

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Rod Smith has produced this on a filth wheeler.

This is a wonderful idea as the message is taken to the people right into the heart of the community.

Turning it into a very social place must have better impact on people’s mind. We cant have to much gloom and doom as people will turn away. Here they gather and watch and listen

A write up on their Face Book
2nd & 3rd October 2014 – Wagga Wagga – NSW – Australia
An amazing two days of creating awareness of the dangers of asbestos at the 150th Wagga Wagga Agricultural Show.
The Bernie Banton Foundation’s Mobile Asbestos Education and Awareness Unit in full flight.
It was great to have the Bernie Banton Foundation’s Wagga Wagga Mesothelioma and Asbestos Related Support (MARS) Team Leader, Leanne Billingham, with Karen Banton and myself, for the two days.
It was amazing how many people know Leanne and her husband Neil …….. Leanne knew literally 100s of people by the sound of their voices!!!!!!!
What a wonderful two days, we spoke directly to over 100 people about the danger asbestos represents, add their partners and families, and this figures multiplies into many more hundreds. With between 15,000 to 20,000 people attending the show, our stand was well exposed.
I know we have made a positive impact on many people lives – hopefully we have saved someones life!
Rod Smith
Rod Smith

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

I had a call yesterday from St Georges Hospital. Could I come tomorrow for a blood test. I couldnt believe it as I had no idea I was even in for going to London.

We were exhausted after the long day at The Marsden on Monday and the great news we had really takes it out of you. I said Oh please can a blood test not be done at my local hospital. This is a special hormone test though as we want to find why you have dizzy spells.

I said it only happened twice.

She said that the drug could be causing a hormonal problem.

She said she will talk to the nurses and try and get another appointment for me.

I phoned my Greek God Doctor and he was amazed as the letter for an appointment was still sitting on his desk. He kept saying the NHS doesn’t work that quick.

So he said he will ask Maidstone if they can do the blood test.

Now today I get a phone call from St Georges and it has been arranged for Tuesday as it is  with a specialist in hormone disorders, known as an endocrinologist,

 

Looking this all up it could be my thyroid playing up. Well I have had a bi-op on my thyroid as there is a nodule there.

So we are going to London on Monday and now Tuesday.as Monday is in a conference in St Pancrus and St Georges is in Tooting.

I had already got my kitchen in bits as I wanted to clean the cooker. I hate that job but I took my temper out on it and it is now gleaming at me.

A Mesowarrior used her voice yesterday

A Leicestershire woman is backing a new campaign to cut the number of deaths from occupational cancer. Linda Lakin from Birstall was diagnosed with mesothelioma earlier this year. It was caused by being exposed to asbestos when she was in her twenties, and working in a dry cleaners. But for Linda it’s too late, as she’s been telling BBC Radio Leicester’s Bridget Blair Well done Linda

After a break in so many deaths this year A mesowarrior contacted me to say Ann her Mother In law had passed.

Hi Mavis, just wanted to say,I’ve been following your story since learning more about this horrible disease after my mother in law was diagnosed in June,her mesothelioma started they think in the lining if the abdomen and was a complete shock to us all,unfortunately she passed away last weekend,I would just like to say I am so pleased about your results of the shrinkage and may you keep fighting this horrible disease, you are a true inspiration ,lots of love xx

So quick from diagnosis to death Its so very sad and my heart goes to Kelly Webster and her family.

So We say goodnight to another very Brave Mesowarrior  Ann  you will be missed by your loving family as you gain your  angel wings  -Night Night Ann RIP

 

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Raymond Nye

Rays Blog http://mesoandme.wordpress.com/2014/11/05/wednesday-105/

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