Living With Mesothelioma-My Diary- A Drug Day at the Marsden –Info on the Saatchi Bill

Oh I hate the alarm going off at 5am and then ist all rush to get ready to go for my Drug. The car was covered in frost so its so cold as we spray the window screen.

We had a nightmare journey to the M25 as they have shut one lane by Clackets lane due to repairing the central reservation. There has been an accident there.

View image on Twitter

This was on the 19th and the road was closed. So at least it was only one lane closed each side to us today.

http://metro.co.uk/2015/01/19/m25-crash-motorists-face-severe-delays-after-lorry-smash-near-clacket-lane-5028001/

This road is lethal and so many roads lead into it.

It is the biggest car park at times.

 

We did get a move on when we passed it so it didnt hold us up to much.

Arriving at the hospital I left the car fast and dived in the Loo Ha ha !!

I had my bloods taken and my PICC line dressed. Im so pleased I had it fitted when I watch the painful needles in the other patients arms and the buckets of hot water they use to get a good vein.

My blood is drawn so fast -job done.

I then had the Doctor waiting for me straight away.  She is Spanish and today she had a colleague who was Brazilian.  She said asbestos was banned but the do see mesothelioma cases

Oh no they havent –Activists in Brazil are likely to be particularly dismayed by the court’s decision. The country is the world’s third-largest asbestos producer – at 300,000 tons per year – and a major consumer. Asbestos has been used extensively in Brazil, , mostly in the form of cement for roof tiles and roofing panels, plasterboard, and domestic and industrial water tanks.

http://www.theguardian.com/global-development/2014/nov/20/italian-supreme-court-asbestos-ruling-brazil-eternit-afeva-stephan-schmidheiny

Oh dear no wonder she is in the UK learning to treat Cancer.

Anyway it had shown in my water sample I have the water infection back so we discussed about my going on a coarse of antibiotics. She wrote a prescription and Ray handed it to the Pharmacist.

We had a coffee and a cake and went back to the waiting room.

We had different chats as we each learnt about the cancers we all had. Brain tumour was one poor man who had it operated on but the second one has appeared and its to dangerous to operate.

He was such a cheerful happy man even though he had lost the use of one side of his body. Another man had a funny sounding one that we didnt like to push but he had to go by taxi to another hospital for an eye test then come back. Taxis had been laid on so he enjoyed a journey out.

Then The Doctor came out and called me in again.

My heart went in my mouth. As Alistair had news yesterday I thought it was my turn. I woke Ray with a start and we went in.

It was to say that the Antibiotics she had ordered,  the Pharmacy phoned to say would hurt my kidney. Phewww!!! But how amazing they really do look after my kidney.

So we are going to wait for the Lab to tell her just what infection I have and she will email my GP to supply me a prescription.

But my bloods were fine and the drug was being made up.

I cannot believe that at 1.30pm I was called as my drug was ready.

I was soon receiving it through my vein. Its so amazing how 3 people can be so different. but for me its my wonder drug so I hope my scan on the 23rd of February shows more shrinkage.

The other 20 cancers are getting good results but we discussed that Mesothelioma is so hard to control.

Mesothelioma is one of the hardest types of cancers to treat. Progress has been made in treating this type of cancer. But we need to learn a lot more about this disease and how best to treat it.

Until research studies are completed and new effective treatments are found, the treatments covered here cannot be used as standard therapy for mesothelioma.

Genetics

There is some evidence that your genetic make up could affect your risk of mesothelioma. As well as asbestos, exposure to a mineral called erionite is a risk factor. Researchers in Turkey found that in some families exposed to this mineral, everyone developed mesothelioma, and in others, no one developed it. They think that the families affected must have a gene that increases their risk. This could explain why some people who are exposed to asbestos do not develop mesothelioma, while others do.

We need a lot more research to be done before we will know if there are specific gene changes that can increase your risk of mesothelioma. It will be some years after this has been completed before there will be any chance of testing for such a gene.

Understanding the changes in the genes of the mesothelioma cells helps in developing treatments. Researchers are finding out more about these changes.  The aim of this research is to understand more about how mesothelioma develops and how the changes in the genes of the cancer cells affects how well different treatments work. They hope that this will help to guide treatment in the future.

http://www.cancerresearchuk.org/about-cancer/type/mesothelioma/treatment/whats-new-in-mesothelioma-research

We were soon on our way home and was in doors by 3.30 even after shopping. Now thats how I wish it went every time it would be so much easier.

dance

 

http://medicalinnovationbill.co.uk/medical-innovation-bill-is-passed-by-lords-and-sent-to-commons-at-third-reading/?utm_source=Saatchi+Bill&utm_campaign=73690085b8-3rd_Reading_House_of_Lords1_22_2015&utm_medium=email&utm_term=0_87c59b6bfe-73690085b8-334460853

There were two amendments tabled from Lord Winston and Lord Hunt both of which were supported and signed by Lord Saatchi.

We are thrilled that Lord Hunt’s amendment on the Medical Innovation Register was accepted.

This unprecedented register of innovation, which has been called for by many organisations and individuals, will make it a mandatory requirement for anybody using the Bill to register the treatment and the outcome, both positive and negative.

It moves treatments that without sharing and transparency could become just an anecdote into sharable evidence that can be used to treat other patients and inform clinical trials.

Oxford University have already offered to host the Medical Innovation Register and the Medical Innovation Bill team is consulting widely on how the register will be set-up, managed and funded. We will keep our website updated with all the latest developments.

The Bill has now moved to the House of Commons and is a step closer to helping patients receive novel and innovative treatments.

Thanks so much for your support so far.


During the third reading Lord Kakkar said:

“Clearly, providing transparency and the opportunity for sharing the outcomes of such innovations rapidly and broadly across clinical communities in this country and internationally is of so much importance.

It will allow colleagues to understand what has been achieved and not achieved; it will allow those with other ideas to build on knowledge gained from experience to date; and it will ensure that through transparency we have the best opportunity to ensure the greatest patient protection.”

Lord Kakkar is professor of surgery at University College London and a member of the General Medical Council.


During the third reading Lord Giddens said:

“Science is a collective enterprise. It depends on the accumulation of evidence. It is crucial that that be recognised formally somewhere in the Bill, with this embodied as part of the advancement of scientific progress more generally”

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Living With Mesothelioma -My Diary- Bad News for my Partner on the trial MK3475

Liz Ault

Im absolutely devastated today. My partner in Crime –my buddy on the MK3475 has just found out he has the Meso growing in a new place.

He is off the trial. Liz said on FB

Not good news. Cancer has grown in a new place and therefore he is no longer eligible to stay on the trial!

Oh Bless him we had such high hopes when we sat side by side together on that very first time and I took the mickey as they got the drug into my vein before him and I thought I was the first to have the drug. In actual fact a lovely lady was there a week before us but because they cant discuss other patients we didn’t know that.

I know how he must feel so devastated and yet I wonder if he had guessed as he has had a lot of pain this week.

I don’t understand why they cant zap it or use a chemo with the drug, Ray says because the trial is about just the drug. Whether it can stop cancer. But Im thinking of the patient and he needs the treatment to stop the meso.

I hate it all, I hate my Mesowarriors suffering and just not being able to get this disease under control.

What is there in my DNA or my body to have this drug working well but mostly my confidence gets knocked as it shows it can all turn tits up anytime. I cant be complacent that I to could have this disappointment.

God ever since I have had this I seem to rant and rave at everything as Im so frustrated with it all.

We need that cure.

We need more research its all I can keep saying.

Lets find that.

My dear friend Im so shocked today. I really thought we were walking the path together and now you are where I was hoping I would never be.

I know you are staying on in London so have a good time and then come home and take it all in and regroup for what treatment will follow now. Love you guys xxxx

1967: HMS Eagle R-05 seen on trials off Devonport, England.

Alistair E Hault, RN Retired

A Stokers Story….

On a cold, wet February morning in 1964, a lone youth stood, suitcase in one hand and travel warrant in the other, waiting for the train which would take him on an adventure of a lifetime.  It seemed forever since the day he had walked into the Naval recruiting office on Green Lane in Derby to join the Royal Marines and for him to come out, an hour later, having taken the Queen’s shilling and joined the Royal Navy.  Some recruiting Chief Petty Officer had persuaded him that, having worked for 3 years, since leaving school, as an apprentice Plater/Welder, he would be better off and more useful to the country as a Stoker.

The long journey from Derby to Plymouth seemed to go very quickly; after all, it was an adventure, like the Enid Blyton’s Famous Five books he had read as a boy or even Biggles.  The train pulled into Plymouth station later that day; new friends had been made on the journey doing the same thing.  Gone were the worries of what lay ahead; we were all in it together and the team feeling had begun.

HMS Raleigh seen between 1921 and 1922.

Outside the station stood a row of dark blue Navy lorries like buses at a foreign holiday destination and we all piled on after being checked off a list by lone Leading Hand.  Over the Tor Point ferry and on to HMS Raleigh for a day of haircuts and knitting out with uniform.  Later on, the relaxation in the NAFFI Bar for the ones old enough to drink and some that were not.

Next day the early start of the beginning of training on the Parole Ground (got to knock the idea of “civvy life” out of you and instil some discipline and did they ever do that!).  This day was put aside for splitting recruits into divisions (named after Admirals) and allocating mess dormitories.  Five weeks of knocking “civvy street” out of everyone and instilling “The Navy Way” into you.  Then the hard work began with the introduction of Trade training and the first introductions to the inside of a ship, although on land.  Pipe work, Admiralty three-drum boilers, system layouts…….all had to be learnt; examinations had to be taken.

Doing the trade introduction was the first time we came across “LAGGING” pipes.  They were covered in a white painted substance.  Little did we know that although it was there to protect us it was a killer waiting, in later life, to creep up and kill us.  During this training period was the time recruits were introduced to the “real Navy”.  The frigates, old WW11 destroyers converted into type 15 frigates with all the old machinery, engines and boilers, all of which were covered in lagging.  Every engine part that got hot was covered in this white covering like plaster of Paris.  Little did we know that this was asbestos and it was a killer.  No-one knew in the 1960’s what asbestos was, just that it stopped you getting burnt by the hot steam pipes throughout the ship and, believe you me, there were a lot of hot pipes, even in a small frigate.

After my trade training and an extended special course to get my rank early I was drafted to my first ship of the line HMS Eagle, a Fleet Aircraft carrier and a big ship.  Duties on board were mainly watch-keeping in the engine rooms, boiler rooms, gear rooms and fridges.  All of these areas of watch-keeping were full of pipes lagged with asbestos.

Two years on board HMS Eagle were some of the best years of my life, travelling the world from Mombasa to New Zealand and beyond; long stays in Singapore, Hong Kong, then back home to get married and go through the problems of living accommodation.  Starting firstly in a one-roomed flat in Southsea in the middle of winter with a one-ringed electric stove to keep warm.  Then the luxury of a three bed roomed flat on Portsdown Hill, Portsmouth overlooking harbour and dockyard.

During this time I was working in Portsmouth dockyard on numerous ships under the flag of Fleet maintenance.  This involved day after day stripping lagging off engine room components to get at them to be maintained and then re-lagging them by a special lagging party.  Two years of this and then a draft to HMS Triumph in Singapore dockyard for 2 years married accompanied and living in Malaya, on call to go to ships needing maintenance in Mombasa, Bahrain, New Zealand, Hong Kong doing maintenance and dealing again with asbestos.  I didn’t really stand a chance!

Did I join the wrong branch of the Navy?   I didn’t believe so at the time.  If I had been a seaman instead of a stoker would I have ended up 40 years later with mesothelioma (asbestosis), probably not.  No-one knew then, not even the Big Boys in Whitehall or did they?  I was proud to serve Queen and Country and wouldn’t change it one iota, but I would have liked to have been looked after better by those who should have known better.

In 1973 by term of service ended and I joined the Derbyshire Constabulary.  I had no further contact with asbestos during the period 1973 to 2002.  I retired from the police in 2002 and it came all too quickly.  My retirement really started then; walking was my big joy – Cotswold Way, Great Glen Way, no problems!  Snowdon, no problem and I don’t mean on the train.

Then came the day walking in the Peak District in Derbyshire.  It was a winter’s day and I came to a hill which normally would have caused no problems but this day caused big problems.  I was unable to breath and I thought that I had caught something but I put it down to a cough and the flu/pneumonia jabs that I had recently been given.

A week later, after I was starting a cruise in New Zealand, when I came to a steep hill in Auckland I had to admit that something was wrong.  Badly wrong!  I carried on with the cruise and came home.

A few days after returning I visited the Nurse Practitioner at my local surgery and was treated for an infection with antibiotics and also had an s-ray.  I was lucky that they had an x-ray department at the health centre.  The results of the x-ray showed high levels of fluid in my right lung.  I was referred to Royal Derby Hospital and I was diagnosed with mesothelioma.  I was lucky again because a thoracic surgeon was there at the time from Nottingham City Hospital.  He offered me certain options, one of which was radical surgery to remove the outer layer of my right lung to try to eradicate most of the cancer developing there.  I went for that option and 4 weeks later, at Nottingham City Hospital, I underwent surgery.  I went through a lot of pain and discomfort but it is now 3 months since the operation and I am on the mend.

I will be going on holiday to America in September; I made this my target right from the outset.  It was always my first question to all the professionals that I have seen.  “Will I be able to go to America in September?”

One person who helped me greatly to sort out what I needed to do was an employee of the Asbestos Helpline, Colin Tunstall.  One thing he told me was to get in tough with the Veteran’s Association.  I completed the claim form and they did all the work that was needed for me to get a War Pension which I was awarded some weeks later and payable for the rest of my life.  As I was a member of the Royal Navy when I contracted this disease I was unable to sue the Crown.  This is because there is immunity to prosecution for anyone exposed to asbestos by them before 1987.

One thing I told Colin was to be positive; it’s not the end of the world if at time it might seem to be.  There is a story in Norse mythology about the “Tree of Life”.  Under that tree sit 3 spinners, spinning everybody’s fate.  If your fate is that your time is up there are no surgeons in the world that can change it.  “Que sera sera!”

 

 

 

 

Living With Mesothelioma -My Diary- The Reaction and Answers to my blog yesterday –so what are the answers

Well my blog yesterday has shocked me in the reaction it got.

I had so many comments on Face Book and private messages telling me I had got it right.

I will list a few —

So true if only they would put more effort into finding a cure. Your are an amazing woman that I am honoured to know even though we started off talking due to tragedy I feel blessed that your there and also know there’s a lot of us that are there for you also whenever you need us.
The work you do is amazing your an inspiration xxxxxx

 

Mavis I hope first of all it helped you putting it down on paper. A really heartfelt piece of writing well done. It makes us all take stock. We are here to support you as you do for us. Much love today xxx

 

Such an excellent informative Blog Mavis —definetley worth printing & keeping inside a book I have . It painted a clearer,broader picture of the Realities of this terrible disease than many would imagine. Books I have read which were Chapters long don’t cover the food for thought like your Blogs. May 2015 find much more Funding for Research. Good to read through concerted effort of you & others the BLF have obtained Funding from Aviva Insurance Company. I am always in awe of all you achieve xx

 

My Queen Mavis, you have contemplated, no doubt discussed, and put pen to paper, you are not the acknowledged Queen of the Mesowarriors for nothing. Your words are considered and wise, well done my friend. xxxxx Mavis, I have known you now for 5 years, I love and adore you ….. but most of all I respect you, what you have written is spot on!You old wise fox, you have turned the tide!!!

 

Thank you Mavis, your expression of anger is not just words because you are taking action as well. I am inspired and by you to continue educating others because your words ring true. It feels like you are saying the things that my father felt and said. Unfortunately his battle was lost too early. He enjoyed 69 years on this earth and I learned a lot from him. Thank you for reminding me of my father;)

 

Well said Mavis. It is very easy to take offence to something posted on these sites where no offence was intended. It is very hard to write supportive messages or helpful comments without offending someone. Keep up the good work!

 

Well said. Such a frustrating thing yet you’re fighting your own illness while fighting for everyone else too. You are fab x

 

Well said Mavis, think you have more friends than enemies with your words. Keep up the good fight. xxx

 

Excellent Diary entry Mavis —Would have liked to print it out but somehow I don’t seem to be able to

 

It’s an amazing account of what you’ve done for Mesothelioma and all the time coping with the disease. I take my hat off to you. I’ve tweeted & hope some of the businesses that follow me as well as everyone else will read my first tweet of what it is like being a Meso patient. Well done. Xxx

great stuff Mavis that’s exactly what It’s like

 

 

Mavis can you post to my time line thought of mesothelioma patient you have a talent for writing i hope you know this you are a amazing woman

dragon flies for ray

 

I did have an excellent one from a dear friend in Holland. She has been with me through all my this journey on here in my Cyber world

Putting all one’s eggs into one basket is risking a complete fail. You write: “There is so much money being spent on data collection travel and hotels etc etc etc etc, that I keep sitting there thinking if only this was all going into research.” I understand your sentiment and know and appreciate where you’re coming from – you know I do. Yet it seems to me that research grants for medical laboratories to find a cure are dependent on statistics, on increasing public and politic awareness to prevent future victims, on policy to make the right choices and allocations, on motivated doctors, on media to make big noises, indeed on very many aspects to which many people of all backgrounds contribute. They all need each other in many different ways to co-operate in unity to achieve their mutual goals, that is to say to find a cure and realise prevention to future exposure and disease. Funding laboraties to the complete detriment of these other efforts would be fruitless, for then the need for funding would not be understood and funding would dry up for lack of interest, sense of urgency and understanding. If these people don’t communicate, which they may need to do in person to learn from each other – and hotel stays and conferences make that possible – then each country would be trying to rediscover the wheel all over again, to the detriment of asbestos victims worldwide. Which is a very sad thing, considering that we all share the same asbestos problems, regardless of which country we live in. We must learn to share solutions, actively and unitedly, so that we may together find the best one as quickly as possible in order to achieve our mutual goal of banning asbestos all the sooner and with it, preventing asbestos diseases. It takes many approaches, not just the one. And sadly, they all require funding to be effective and by their efforts also support the other approaches.

Im so grateful she sat and thought with me and we meet up next week in Birmingham so we can discuss this further.

Yvonne is heading for her first Conference and I hope she carries forward my thoughts and hers and makes everyone think and remember the Patient that is suffering with this dreadful disease.

I hope they think and help make this a safer world.

The first European Asbestos Forum

The European Asbestos Forum aims to improve professional networks and the exchange of knowledge regarding all matters related to asbestos.

For 2015, the main theme will be focused on labour: remediation, best practices, limit values, raising awareness in the workplace, national and European policy, enforcement of regulations, comparing regulations, asbestos drama’s and major law suits etc. The newest medical and some shocking new epidemiological insights will be shared as well. Convivial closing drinks and an optional conference dinner will round off the day in style.

http://www.europeanasbestosforum.org/

.

Global top speakers 27th May 2015

This event will provide a stimulating environment to discuss the challenges facing us in raising awareness about the dangers of asbestos in the workplace, how to manage these and how to prevent future victims. There will be some twenty internationally renowned speakers and representatives from all stakeholders, such as remediation firms, employer groups, labour unions, governments at all levels, researchers, medical experts and victims groups from all corners of Europe and beyond.

Here we have someone at the beginning of sharing,  with her country, knowledge and its this first feeling that so many of us have started with. Thats what Im asking that we all get that first feeling back and rethink

So all in all I was pleased I had sat and thought, it seems so many have joined me –Thank you so much now maybe we can move forward together and find the money to research the cure for Mesothelioma.

Mesothelioma research at the BLF

 

I wish the British Lung Foundation good luck in getting then Insurers to invest in Research.

Two insurance companies – Aviva and Zurich – have agreed to donate a combined £1 million over two years to our mesothelioma research programme.

On top of the money we already invest, we will be able to fund an additional £1 million worth of ground-breaking research, of the kind we hope will one day discover new treatments or even a cure for mesothelioma. use this link to send a request to your MP  http://blog.blf.org.uk/…/huge-step-forward-mesothelioma-re…/

Then we have to sort the Asbestos story out. I don’t know the answer here –its to huge and expensive a problem.

The true answer is to pull everything down and eradicate Asbestos from our lives. We cant do that of coarse but we could start to have houses surveyed so that we are aware our homes are safe and if it is around us. If Houses are rented or bed and breakfast (a business in some way) then HSE Duty to Manage comes into it.

The ‘duty to manage’ asbestos is included in the Control of Asbestos Regulations 2012. You are a ‘dutyholder’ if:
you own the building; ■■
you are responsible through a contract or tenancy agreement;■■
you have control of the building but no formal contract or agreement; or■■
in a multi-occupancy building, you are the owner and have taken responsibility ■■for maintenance and repairs for the whole building.
What buildings are affected?
All non-domestic buildings, whatever the type of business. ■■
The common areas of domestic buildings, eg halls, stairwells, lift shafts, roof spaces. ■■
All other domestic properties are not affected by the duty to manage.

They could add houses that we live in to this very easy, from little acorns and all that jazz.

http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCYQFjAA&url=http%3A%2F%2Fwww.hse.gov.uk%2Fpubns%2Findg223.pdf&ei=gMDEVOSDONKS7AalvIDQBg&usg=AFQjCNGkMtNkHhtVmag_82earGA5FnsyNg

Well its been a very educational weekend for me thank you so much for sharing with me

 

 

 

 

The Thoughts of a Mesothelioma Patient

dragon flies for ray

I want to write down some thoughts today. As I know Im making enemies with the way I feel.
We lost another Mesowarrior yesterday from this terrible disease. It is man made and we haven’t done anything to receive this death sentence.
They like to work out, with other diseases, that we eat too much, drank too much, smoke too much.
All we did was breath in dust, that was in the air for even just one moment, or had filled the working area.
Now I have this disease and have had to scream for treatment, there is still a me inside this broken body. I have taken so much chemo I have almost killed myself doing that.
4×6 4 lines of poison  that made me so sick and destroyed my nervous system, where I couldn’t walk. I have had to fight for all the treatment, as I had other people saying no more treatment but I had proved I wanted to fight as being given a death sentence of 3 months wasn’t what I was prepared to accept.
I got behind the Saatchi Bill for that reason. They want to listen to the patient. Why shouldn’t the patient have a say in how they treat this disease.
They are learning all the time from us.
The people that are doing so much for us are the people in my front line. My doctors and nurses, working to set budgets and time scales and being mastered by Hospital Trust.
 It isn’t very easy for them. They need to be free agents to be able to do their work properly. Wonderful CNS nurses who are front line to the patients have had budgets slashed. They work to 100 patients each but because off lack of money, are having to handle a far to higher figure, so they cant get to see all patients in clinic to help each person to deal with Cancer.
The Macmillan team and Mesothelioma UK are Charities. That was something that really shocked me. The NHS is running alongside so many charities. They treat and help so many patients. The Government doesn’t seem to ever mention that fact, They buy so much equipment etc etc for hospitals that we wouldn’t have a NHS without them.
Now this is the part that I cant get straight in my head.
We have people like the NHS that are directly involved. The Doctors are wonderful and they, with nurses are involved in so many activities out of their working environment.
I have met them in meetings where we discuss figures and how the hospitals are preforming, the latest trials and the latest treatment.
Then at workshops where data is collected and discuss and their meeting people who collect the data to use elsewhere and raise reports and graphs.
Conferences, where they speak and share the latest trials and data.
Now here they mix in with people that are fighting the battle of Asbestos.
Now really they are two different battles, but they learn from and use the Patient to show what Asbestos does.
It has taken a long time, and still there is ignorance of the material that was once hailed as a wonder product.
We go into another world of people in the front line like Asbestos strippers etc etc.
The use of asbestos insulation and most types of asbestos are now banned, but many thousands of tonnes of asbestos were used in buildings in the past.
Much of the asbestos is still there and you cannot easily identify it from its appearance. It is a huge huge problem and all these people are working with a killer and need expensive equipment to keep them safe.
But can you get the picture.
There is so much money being spent on data collection travel and hotels etc etc etc etc, that I keep sitting there thinking if only this was all going into research.
The ideal world is that we have a problem of a disease, the Government know it (they made so much money out of Asbbestos) so lets sort it all out.
I understand that to take all the Asbestos out of our life is so expensive but they need to work out the best way to manage. Why does it take all this money and time consuming to sort it out. Its only spreading the awareness thinly in so many areas. and allowing so many people to become cash rich, while in the mean time the medical people, the doctors and nurses are getting poorer and above all else the patients are dieing still.
That is how I feel today that the patient and carers that are on the real front line has such a huge world behind them just talking and instead of really getting behind the problem Politics and ego’s are getting in the way.
I wish everyone one of them would stop what they are doing and think. Yes even me. Stop and think why did I start all this writing and talking and time on a computer.
Well firstly I wanted to help myself. I was desperate to find out first what my disease was. Mesothelioma is such a pretty name but an ugly disease.
I then wanted to find what treatment was out there so I became involved with Facebook and the Mesowarriors. We banded together and became one voice. I started to use my voice and spoke at the Mesothelioma Uk conference. I wrote my book to raise money for their Charity, I got involved with BLF and became a patient rep. I have met some wonderful people.
But I have lived for 6 years now and seen so many Mesowarriors die. So I have a little support group and I help them with all the worries and fears and now pass on all I have learnt from my experience.
That spurs me on to stop all this sadness and to know I have helped in some small way. All the expenses are out of my own pocket so Im free from any financial gain and therefor can work freely.
Now I would like everyone who is wrapped up in this horror to sit down and go back to the basic reason they started their journey. Right from the Government, Data Collectors, Asbestos Companies, Medical staff , and all the Awareness Raisers etc etc, lets have a rethink and work out how to sort all this mess out.

 

 

 

 

 

Living With Mesothelioma -My Diary- We have lost another Mesowarrior today – The Saatchi Bill has passed from the House of Lords To The House of Commons

I woke at 2.30am today and couldn’t sleep anymore. I got up and made a cup of tea then made another, then another, A message came through that a Meswarrior had lost his fight.

Stephen and I met on Facebook when I made friends with him and added him to all of our groups. Then I met him when he and his wife came to the Hotel on the Sunday morning just before I was traveling home from the  IATP Dinner Dance at Derby 2010.

We sat by the fire and talked about our illness’s.

We have met again in October  2014 at Mesothelioma UK he was so well and strong.

When God saw you getting tired
And a cure was not to be
He put his arms around you
And whispered come to me
Goodnight to our brave Mesowarrior Goodnight

When God saw you getting tired
And a cure was not to be
He put his arms around you
And whispered come to me
Goodnight to our brave Mesowarrior Goodnight

Animated-burning-candle-click-on-to-see-it-flicker-candles-4092508-320-290

 

 

 

 

 

 

 

 

Well I went back to bed and slept to 9am and house work and dressed to wait for the reading of the Saatchi Bill as it was back in the House of Lords.

I have sat all day watching and listening to some boring debate’s and guess what I must have missed it when I made lunch as it got through to the House  Commons.

I really pleased for Lord Saatchi and the team.

http://www.telegraph.co.uk/news/health/saatchi-bill/11363932/How-Lord-Saatchi-won-over-the-critics.html

Since first announcing the Medical Innovation Bill in December 2012, Lord Saatchi and a three-man team of aides have been working tirelessly behind-the-scenes to convince the sceptics.

More than fifty meetings with politicians, vested interests, charities and civil servants have been held in an attempt to build a groundswell of support.

A number of alterations and agreements were made to get the legislation to the point where it is expected to pass the Lords today.

All medical research should be published

One key sticking point for a number of peers was over concerns about what would happen to the research once untested drugs are tried on patients.

There were fears that learnings from the innovative use of medicines – the whole point of the bill – could go unnoticed or, more worryingly, negative side-effects may not be shared.

The bill will now specifically say that for doctors to be covered by law they must publish their research on a shareable database available to all medical professionals.

Get a second opinion before using untested drugs

Allowing doctors to use innovative medicines on the terminally ill raised concerns about whether there was sufficient protection of patients.

Lord Winston, a Labour peer and pre-eminent scientist, was one of the most outspoken critics when the proposals were discussed in Parliament.

Lord Saatchi’s team held two meetings with him after Christmas to hammer out concerns and find common ground.

Doctors will now have to seek approval from another medical professional before any experimental drug use if they wish to be protected under the bill – a procedure known as the Bolam test.

Get the Government on side

Keeping the Department of Health and Number 10 on side has been crucial in ensuring Lords and vested interests saw the merits of the legislation.

Professor Sir Bruce Keogh, NHS England’s National Medical Director, was tasked with amending the bill so it worked with the health service while Professor Dame Sally Davies, the Government’s Chief Medical Officer, was also consulted.

It is understand the Prime Minister is watching the Bill’s progress an getting feedback from the Health Department. It is hoped parliamentary time can be found for MPs to back the bill before the election.

The Medical Innovation Bill has been drawn up by Tory peer Lord Saatchi and heavily backed by the Government

Another photo that shocked today was

This is like so many old mines all around the world when they are abandoned but this one is still being mined

http://www.commffest.com/media-gallery/detail/20/43

Plundering Tibet 24m Director Michael Buckley Canada A personal take on mining in Tibet How much can an ecosystem take before it collapses?

Plundering Tibet is a short documentary about the dire consequences of China’s ruthless mining in Tibet. As a Canadian filmmaker, the narrator has a personal take on this because of the involvement of Canadian companies in mining in Tibet—and the railway to Lhasa. Following the arrival of the train in Tibet in 2006, large-scale mining of lithium, gold, copper, lead, crude oil, natural gas and other resources is under way to feed China’s voracious industrial sector. Tibetans have vigorously protested the defilement of their sacred mountains by Chinese mining operations.

None of the mining operations benefit Tibetans. In fact, mining pollutes drinking water, kills the livestock, and degrades the grasslands on which Tibetan nomads depend. A disaster of Biblical proportions is unfolding in Tibet—so big you can see it happening on Google Earth—the mines, the pollution, the environmental damage.

This is Asbestos at its worse. It has to stop.

 

Living With Mesothelioma -My Diary- Dr Peake is Honoured -and Karen Banton in Australia congraulations -So well deserved xx

We have had such cold weather and have to wrap up well to take the dog out. Im doing as the Doctors have been telling me to build my walking muscles up so a walk round the park just as the sun is setting and the evening veil of night moves over I take him. No one sees me walking then so if I did fall over I can do it without embarrassment. No I joke as Im getting stronger and the chemo damage muscles are getting stronger. I work up an appetite and come  back and enjoy my dinner.

So many warming stews and cottage pies this weather.

horsey

 

 

 

 

 

WASHINGTON, Jan. 21, 2015 /PRNewswire/ — The Mesothelioma Victims Center is urging baby boomers who were building trades workers, manufacturing workers, or industrial workers exposed to asbestos at a workplace in the 1950s, 1960s, 1970s, or 1980s to get annual medical screenings for asbestos related illnesses such as mesothelioma and asbestosis. “We are seeing a very large spike in the number of newly diagnosed mesothelioma victims because many of these individuals were exposed to asbestos at a workplace in the late 1950s, 1960s, 1970s, or early 1980s. One thing to understand about this rare disease is that it often takes many decades to manifest itself. What differentiates us from any other group or organization in the nation is our passion in making certain that all diagnosed victims of this rare form of cancer get the nation’s best lawyers to advance a mesothelioma compensation claim.

http://www.prnewswire.com/news-releases/mesothelioma-victims-center-unveils-list-of-baby-boomers-potentially-exposed-to-asbestos-at-work-300023076.html

Mick Peake (2)

A great surprise today was to see Dr Peake looking at me from a newspaper. I love this man and his Conference talks. We have been on so many together and he is the such a kind and interesting man. I just had to send my Congratulations today xxxxx

Dr Peake is a Consultant and Senior Lecturer in Respiratory Medicine for the University Hospitals of Leicester, based at the Glenfield Hospital, Leicester, UK.

He has published widely and been involved in the development of national policy for lung cancer and cancer intelligence in various roles. He is Clinical Lead for the National Cancer Intelligence Network (NCIN) and for the National Lung Cancer Audit Programme (NLCA), run jointly between the Information Centre and the Royal College of Physicians, where he is Associate Director of the Clinical Effectiveness and Evaluation Unit.

He is National Lead Clinician for Lung Cancer in NHS Improvement where he is also the secondary care lead for the National Awareness and Early Diagnosis Initiative (NAEDI). He chairs the Clinical Reference Group of the NLCA, is co-chair of the Department of Health’s Lung Cancer and Mesothelioma Advisory Group. He is also a member of the steering group of the British Thoracic Oncology Group, vice-chair of Mesothelioma UK, a member of the National Clinical Audit Advisory Group (NCAAG) and chairs the clinical section of the UK Lung Cancer Coalition (UKLCC).

His major interests are in early diagnosis and improving outcomes for lung cancer patients by proper service configuration, supported by good clinical outcome data.

Cancer treatment doctor recognised

By Merc_Reporter  |  Posted: January 21, 2015

By Cathy Buss

Mick Peake (2)

 The work of a city doctor in improving lung cancer treatment has been recognised with a prestigious national award.

Dr Mick Peake, a respiratory consultant at Leicester’s hospitals has received the Judges’ special award at the third annual Quality in Care oncology awards.

Dr Peake is also clinical lead for the National Cancer Intelligence Network (NCIN) and for the National Lung Cancer Audit Programme.

The awards were established to recognise quality in key treatment areas and good practice to benefit patients.

In making the award to Dr Peake the judges said: “Mick’s achievements with the NCIN have had a huge impact on the area of lung cancer.

“He has completely transformed the landscape and got us to think about what we do and he’s still so passionate about what he does and believes in quality of care.”

The National Cancer Intelligence Network is a country-wide initiative.

Its aim is to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.

Dr Peake said: “This is an award I never dreamed would come my way, since the quality of cancer care and innovation in the NHS and academic institutions is so high.

“I do believe that many of the things I have been involved in over a long period have had an impact, particularly on improving the quality of services and outcomes for patients with lung cancer and mesothelioma.”

He added: “This is an award based on peer recognition and I guess in the end that is the most satisfying element for me in receiving it.”

This award is the only national clinical award given to an individual in the field of oncology annually.

Dr Peake also chairs the clinical reference group for the National Lung Cancer Audit and is co-chairman of the Department of Health’s Lung Cancer and Mesothelioma Advisory Group.

He is also vice-chairman of Mesothelioma UK.

The award ceremony took place at Central Hall, Westminster, following the Britain Against Cancer conference.

For full results of the Quality in Care oncology awards 2014 go to http://www.qualityincare.org

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Proud of her and our Rodders  they do such great support work in Australia

BERNIE Banton Foundation founder Karen Banton has been named this year’s Fairfield Council Australia Day ambassador.

Mrs Banton is a strong advocate on behalf of asbestos disease sufferers and their families.

She is also continuing the legacy left by her late husband Bernie Banton.

Mr Banton was widely recognised as the public face of the legal and political campaign fought in Australia from the early 2000s until 2007.

His aim was to achieve a binding agreement with James Hardie Industries for a long-term compensation fund for the sufferers of asbestos-related diseases after they were exposed to products made by the company that contained asbestos

A Fairfield Council spokeswoman said Mrs Banton cared for Mr Banton as he suffered pleural plaques, asbestos-related pleural disease and asbestosis, as well as nursing him after he was diagnosed with mesothelioma in August 2007.

“Bernie lost his battle, dying at home on November 27, 2007,” she said.

“In 2009 Karen, together with a number of supporters, founded the Bernie Banton Foundation.

“Its primary aims are to raise awareness about the dangers of asbestos and advocate for the rights of asbestos-related disease sufferers and the general community.”

Fairfield Council’s Australia Day Community Awards Ceremony will be held tomorrow, Thursday.

The council will announce the 2015 Fairfield Citizen of the Year, Young Citizen of the Year, Sports Achiever, and Volunteer of the Year, as well as the recipients of the Australia Day medallions.

It will also hold a small citizenship ceremony.

Last year’s Fairfield Council Australia Day ambassador was Shane Heal, a former captain of the Australian Boomers basketball team.

Rays Diary for yesterday

Living With Mesothelioma -My Diary- The signs I missed that I had cancer – The third reading for the Medical Innovation Bill will be this Friday 23rd January and a New Trial for Mesothelioma is on its way.

Its been a busy day with two articles needed. It wasn’t hard to do as Ray’s story of life in the Dockyard has really caused interest so I have used his writings as it covers how I got to be ill with mesothelioma. We were looking back on photos and came across ones that at the time I was so proud of. When I retired and moved here to the coast  I joined Weight Watchers. Going regular each week I lost weight so fast. Reaching Goal and getting my gold badge was an achievement. The thing was I carried on loosing weight. the lady that run the classes said I must be under eating and write my food diary.

masvl2

 

 

 

 

 

 

 

 

 

 

Finding the photo last night I was so thrilled 10.5 stone at 5ft 9 in. I now can see that Mesothelioma was growing and cancer was taking over my body to show itself 2009.

slimjim

 

 

 

 

 

 

 

 

 

This one looks even worse —the signs were there if it wasnt for my pride of wanting to be slim.

Since then I have bloated up and the doctors keep saying they love my weight as it give mw a fighting chance and it means the cancer hasn’t got a grip on my body.

Lord Saatchi is back in the House of Lords for The third reading for the Medical Innovation Bill will be this Friday 23rd January.

The BBC talks to Lord Saatchi and MP and doctor Dan Poulter about the Medical Innovation Bill.

From 2013 but a good piece on the Bill.

http://www.bbc.co.uk/news/uk-politics-21046287

Lord Saatchi

I dont know how many more times this has to be thrashed out but it has caused a lot of discussion.

Trials are coming through for Mesothelioma and a interesting one fro Verastem —-The Verastem Trial combination trial using the two drugs vs6063 and vs5584′ is going to start 2015 please push if you need a trial and see if you meet the criteria It will be for 60 people US and UK

Please talk to your Oncologist if you are interested as I almost missed out on my trial so we have a chance to get in first with this one.

http://www.businesswire.com/news/home/20141121005083/en/Verastem-Presents-Data-2014-EORTC-NCI-AACR-Symposium-Molecular#.VL62Cy4m_eF

The study results presented here demonstrated that VS‐5584 inhibits proliferation and induces apoptosis in SCLC cell lines in vitro and exhibited antitumor activity in SCLC xenograft models in vivo. In addition, VS‐5584 also exhibited synergistic activity with standard‐of‐care agents, cisplatin and etoposide, in SCLC models. VS‐5584 is currently being evaluated in a Phase 1 clinical trial in patients with solid tumors, and the preferential targeting of CSCs by VS‐5584 in these preclinical models of SCLC provides the rationale for clinical development of VS‐5584 either as a single agent or in combination with chemotherapeutic agents to potentially extend time to relapse and improve outcome for patients with small cell lung cancer.

Rays Blog https://mesoandme.wordpress.com/2015/01/20/tuesday-126/

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