Living With Mesothelioma -My Diary- I spoke at the House of Commons Today.


What a great and tiring day yesterday was I was shattered when we got home and so was Ray.

It started with the normal get up breakfast and dog walk. the we had to get all dressed up and drive to the station to get a London bound train.

Arriving in London we got the train to the Houses of Parliament as we had a date with many people that are concerned about Asbestos.

At the gates I showed my Invitation to speak in Committee room 18.

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We were let through security – I have never had a frisking down by a woman before but we laughed and joked as my handbag went through the scanner. Thank goodness  I had cleaned my bag out that morning !!

All done we got our visitors badge and headed straight for the cafe for a chelsea bun and a wonderful cup of coffee.

We were joined by Judith and Lind T and they too wanted something to eat.

Linda Thomas

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Judy Turnball

We made our way to through the visitors way in into the Great hall

Photo: our trip to the houses of parliment today . it was an honour to be asked to be there and hear our Mavis and Debbie Brewers lovely daughter get up and talk . The afternoon went very well, i meet many people that are trying so hard to spread the word on how dangerous asbestos is. we wont be happy until there is a world wide ban.. thank you Ray for also joining Mavis, Ray literally has just had heart surgery . what a fantastic couple they are. Mavis is in the middle of cemo but she still made the trip .xx

Photo: our trip to the houses of parliment today . it was an honour to be asked to be there and hear our Mavis and Debbie Brewers lovely daughter get up and talk . The afternoon went very well, i meet many people that are trying so hard to spread the word on how dangerous asbestos is. we wont be happy until there is a world wide ban.. thank you Ray for also joining Mavis, Ray literally has just had heart surgery . what a fantastic couple they are. Mavis is in the middle of cemo but she still made the trip .xx

As it nearer to 2pm we found Room 18 and there were so many I already knew but it was so great to meet Mary Hesdorffer from the USA we have been on Skype and Facebook messages but it was lovely to be able to hug hello.

http://blog.curemeso.org/mesothelioma-expert-mary-hesdorffer-advocates-british-parliament/

We settled down and I sat next to Siobham Debbies Daughter who so bravely wanted to speak in place of her mother, she wated to be her voice. They did talk about Debs and honoured her with a photo that they presented to Siobham I thought was brilliant.

The speeches begun

ALL PARTY PARLIAMENTARY GROUP ON OCCUPATIONAL SAFETY AND HEALTH

 Chair: Jim Sheridan MP Hon Secretary: Ian Lavery MP

  Objectives: featuring a mesothelioma patient, a union representative, a mesothelioma physician and a member of the Welsh Assembly. The objective of the meeting is to keep asbestos issues, including the need for increased funding for mesothelioma research high on the agenda of the Parliament of the United Kingdom

This meeting of MPs and invited guests is intended to:

  • Keep asbestos high on the UK agenda;

  • Explore and discuss topical UK issues such as asbestos contamination in schools and the timely delivery of equitable compensation to the injured;

  • Examine UK asbestos developments in light of news from abroad.

Agenda:

2:00 Welcome: Chair Jim Sheridan MP.

2:05 EU Asbestos Initiative Rolf Gehring, European Federation of Building and Woodworkers, Belgium. Rolf was sitting next to me and he spoke about what was going on in Europe.

Rolf Gehring, Secretary for Health & Safety of the European Federation of Building and Woodworkers (EFBWW), co-organisers of this event, can be reached at: +32 478 84 0660. EFBWW is running the campaign: “Europe 2023 – Asbestos Free” – see also: http://www.efbww.org 
The Rotterdam Convention is a multilateral United Nations protocol under which vulnerable populations are provided a modicum of protection from dangerous substances. When a consensus has been achieved regarding the hazardous nature of a designated chemical or pesticide, that substance is included on the prior informed consent list of the Convention. This listing is not a ban; it is however a requirement that exporting nations provide documentation on the nature of the substance so that importers can make informed decisions as to whether or not they are capable of using it safely.

2:35 Mobilizing for a Mesothelioma Cure – Mary Hesdorffer, Nurse Practitioner and Executive Director, Mesothelioma Applied Research Foundation, U.S. Mary spoke about what is going on in the USA with trials for Mesothelioma 

“The Mesothelioma Applied Research Foundation serves the international community and this trip will strengthen the collaborative nature of our relationships,” continues Ms. Hesdorffer.

The Mesothelioma Applied Research Foundation has independently funded over $8.2 million in peer-reviewed mesothelioma research to date.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Medical experts consider it one of the most aggressive and deadly of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in Navy shipyards.

http://www.prweb.com/releases/2013/7/prweb10896332.htm

 Malignant Pleural Mesothelioma: An American Perspective – Daniel Sterman, Associate Professor of Medicine, University of Pennsylvania Medical Center, U.S.

Informational Video

In this video, Dr. Daniel Sterman discusses current findings from experimental mesothelioma treatment research at the University of Pennsylvania. There have been recent reports about mesothelioma patients who have experienced a spontaneous regression in the disease. Dr. Sterman talks about recent advances in immunotherapy research and ways that immunotherapy can be used to harness the body’s immune system to fight mesothelioma tumor growth.

Read more: http://www.mesothelioma.com/treatment/doctors/dr-daniel-sterman.htm#ixzz2Y3Yv4QOc watch a video on thie link

3:35 Report from the UK Mesothelioma Frontline – Mavis Nye, Mesothelioma Patient and Siobhan Brewer, daughter of Debbie Brewer.

I will put a video on when we have uploaded to You tube. but a print out of mt speech is here.

Photo: Just a taster im to shattered to write  a blog I will do a good job tomorrow promise my IATP friends

 My Speech.
About 125 million people around the world have been exposed to Asbestos  107,000 people die each year from asbestos related lung cancer
The story of my Mesothelioma is so like other sufferers . We call it  Secondary as I only did my husbands washing. I have not come in contact with the substance but my husband has.
Ray has lung damage and scaring but no Mesothelioma.
 I have mesothelioma.
It is thought due to me having the cancer gene but really it is unclear why Ray hasnt and I have.
Ray worked at Chatham dockyard as an Apprentice, with a break for National Service.
In the time of being in the dockyard he worked as a shipwright and with the wonder product -Asbestos.
He was never told it was dangerous so wasnt protected he just worked in overalls —no showers before coming home.  He would strip off and change into casual —-I would wash his clothes.
I lived a very full and normal life as I saw the children grow up leave school – go to work and marry.
We retired an bought a motorhome and enjoyed life to the full.
Then at 68 my life turned around.
I had problems breathing my hands became numb and I was sent for an Xray.
 On polling day in the May I struggled to even walk to vote–I could not breath.
I got back home where I  had a phone call from the GP, who told me a bed had been arranged in the lK&C — would I get there now. I did as I was told and I had 5 litres of fluid drained from my lung which had collapsed and  I had a bent diaphragm.
 And so my journey began of Operations  Bi-Ops and Chemo.
Times of shrinkage and times of growing
A Trial that didnt work –so was I on the placebo? I still dont know— as you are not allowed to know that information. Even the Doctor isnt well not for three years I believe.
Im now on 4th line Chemo which is very rare in my area and so the Oncologist could only offer me Cisplatin and Alimata but I have become very allergic to those, so I had to go to St Barts to find out what I could have.
Gemcarbo Chemo was offered– but I came back for the treatment at my local hospital.
We need a System that is more central where Information is shared.
Why does a Doctor in the South know more about Mesothelioma than a Doctor up North.
Why does one hospital know about drugs that can be used and others do not know.
 I have had to do all my own research –I have been in charge of my disease,– I want the Doctors to be in charge. To be able to tell me what I need.That doesnt happen not always and they talk about quality of life I cant give in.
Its not easy for us we have a death sentence over us.
We need more money spent on research.
Mesothelioma is not the rare cancer that I keep being told –that excuse is very lame.
 Asbestos damage is laying in so many lungs hidden but growing into tumours– and  there will be more and more cases diagnosed.
The second wave is coming of people that have done DIY in their younger years –and children sat surrounded by Asbestos in their schools.
There is so much to look at –and I get so frustrated– that there are so many trials in the USA- Australia and Europe. When I ask about what is new here— there isnt much and they are usually for 1 or 2nd line Chemo Im now having
4th line so I will be looking at 5th line  maybe next year
 Mine is slow growing so my survival has been good. 4years instead of the 3months diagnosed at the beginning.
We are supposed to be in Europe so why cant we share the grants and share their research and trials, together, to fight this disease. I realise the country that finds a cure will be rich but not at the cost of patients lives.
 Please join together and share.
Please look at Chemo washes, and Cryo where they freeze the tumours.
Earlier detection –so I could have had a Lung out even. I cope with Meso so I could cope without a Lung.
All I ask is all treatments be explained in great detail with more options as far to many times patients are told to go home and enjoy what little time they have left with their families.– Do the bucket list in fact.
The way we have found out so much is through Facebook where we have joined together around the world and seek info from each other,
to help and cry with each other as each patient dies.
There is no other Cancer that has this personal back up.
Thank you for listening to me—we were all given months and then we gained years.
We should be grateful to our Doctors and Nurses that we stretching the boundaries.
We are the pioneers and now we are teaching the medical profession.
One day there will be a cure and we will have played a big part,
 But I have been robbed of a future and because it was before 1964 –I cant even make a claim for that fact.
———————————————————————————————————————————–
Photo: Well done you did very well your Mum would be so proud of you, it was great to meet you at last xxxx
Siobham followed me and spoke of her Mothers life and how she was diagnosed and went to Pro Vogl in Germany for treatment. She spoke of the difficulties she now faces without he Mother and how hard it will be for her brother and herself to keep the upkeep of her house.  But Im sure her Mother would have taken care of that.
It was very sad to listen to her and I was there for her with a cuddle.
3:55 The Asbestos War – Laurie Kazan-Allen, Coordinator, International Ban Asbestos Secretariat, UK.spoke about the rise in Asbestos use around the world assessed the global asbestos situation. Contrasting the decreasing use of asbestos in developed countries with increasing consumption in developing countries, she said: “The lack of adequate health and safety legislation and enforcement in newly industrializing nations will ensure that the asbestos plague which has decimated workers and the public in the UK, France, Italy and the US will spread.” Aggressive marketing by asbestos producers is succeeding in expanding markets for asbestos in countries such as India, Indonesia and Thailand. Even in countries which are signatories to the International Labor Organization (ILO) Asbestos Convention, workers are routinely experiencing hazardous exposures. Brazilian Labor Inspector Fernanda Giannasi reports:

“The controls specified by ILO Convention 162 are frequently absent, especially in smaller companies. Even when these firms are aware of the risks, they continue to treat asbestos as just another raw material; no safety measures or protective equipment are used. Employers prefer to pay fines which are cheaper than adequate controls. The highest fine ever imposed for infringement of safety and health regulations is US$3,000. It is very cheap to kill and injure Brazilian workers. Another serious problem in Brazil is asbestos waste; as it is expensive to dispose of this waste appropriately, many companies dump it in secluded spots such as abandoned warehouses and derelict buildings.”

http://ibasecretariat.org/index.htm

4:15 Questions and Answers:

4:30 Conclusion: Chair Jim Sheridan.

So that was it all over and a very interesting time. I said my goodbyes to all the people especially Micheal Lees of AIS as you know Schools and Asbestos is my passion. It just should not be and something must be done about it. There are inroads happening.Protecting our young ones from this disease is a must.

Then it all went wrong we got in the wrong train on the underground but it was going to Waterloo so OK we will catch a train from there. Loads of walking to Waterloo East Jumped on a train to Ramsgate and it set off. Errr next station was SevenOaks so we had to stay on. But the train was going to call at so many stations we had to call a halt to this.

We spoke to the Guard who advised us to get off the train and catch the next one to Ramsgate as that would get there before the train we were on as it didnt go all round the coast.

We did this and the next train although went to Ramsgate I saw it went to Canterbury so I said to Ray we could salvage the day by getting a taxi to Whitstable Station and collect the car.

We did this and the fare was £15.00 so we was so pleased to pay that as we so relived to see the car.

Got home exhausted and so was the dog as he greet us and was at last able to go out for a wee.

That was the day a very exhausting day to be really honest with all the walking to and in stations wrong trains my breathing got really bad and I now know how hard my lung is trying to work. But Im on Chemo which I keep having to remind myself and I did the breathing exercises I have been taught so I got through it all x

I will report with all the photos and my video latter as I get them.

 


 

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