Living With Mesothelioma -My Diary- A day of energy. Lous Speach and Jan Eagerton has been honoured today


I have had so much energy today. Already for two days I have washed curtains and changed them so the house already looked different. Today I changed the bed clothes and and vacuumed and polished. This is great but I do sit down and catch my breath every so often.

We took Louis out to the Rugby field at Swalecliffe so that Ray could go to B&Q as the rain is coming back in the porch through the doorstep. So he bought some filler. The rain did pour down last night though and we had a very wet front door mat in the porch so hopefully we will cure the problem.

The throat is easing off now that Im eating food like a baby.

I was given a good recipe book by Alistair’s wife at the Marsden yesterday and the meals are easy to swallow so I will be using that.

You can get a copy and any other booklet’s on diet and cancer, healthy eating, the build up diet etc etc at Macmillan Cancer support 0808 0808 00 00

Mine is Recipes for all people affected by cancer.

The Video of the Oncology Forum has been published it is a sort of Segment of the day that is very interesting but I was allowed the last word as the patent – a very proud moment I get the last word in as I am the patient -Thankyou Oncology Forum for letting me speak and you listened xx

There has been another lovely thing happen and that was the surprise of Jan Eagerton being remembered and a special way. I thought this was a lovey tribute to our Jan and she would approve so much.

http://www.mesotheliomahelp.org/scholarship-contest/

MesotheliomaHelp is pleased to announce the “Jan Egerton and Don Smitley Mesothelioma Scholarship.” We are proud to offer ten (10) scholarships in the names of these two mesothelioma warriors.

Jan Egerton battled mesothelioma for over 10 years and during that time she dedicated her life to raising awareness of the dangers of asbestos and to championing the researchers to continue to focus on finding a cure and new treatments for the cancer. Jan’s husband said, “I know Jan would be delighted to have this accolade, and I would be honoured for you to use Jan’s name. This is a legacy of which she would be proud.” Jan was one of last year’s judges.

Don Smitley spent his days enjoying time with his family, his dog, Charley, and playing in his bluegrass band, The Dunbar Boys. No one ever heard Don complain or wonder, “Why me?” while he fought mesothelioma. But everyone that knew him would say that faith and a positive attitude carried him through each day. Don’s daughter, Jennifer Gelsick, chronicled her family’s journey during mesothelioma, and now discusses life after losing a loved one to mesothelioma through her blog. “We are so honored to have Dad’s name on the scholarship. It’s such a perfect way to remember and honor him,” said Jennifer. Jennifer will be one of the essay judges this year.

mesothelioma scholarship

The scholarship is available to students in colleges and universities throughout the United States. Our goal is to help the educational efforts of students while raising awareness of mesothelioma, provide information about itsprognosis and the dangers of asbestos. Mesothelioma is a disease that affects men and women – both young and old.

See the list of past essay winners here and iPad-mini winners.

Prizes

The ten scholarship amounts are as follows, and will be distributed after the winners have been notified on November 24th, 2014.

  • $5,000 – First Prize
  • $2,500 – Second Prize
  • $1,250 – Third Prize
  • $500 – Fourth Prize
  • $250 – Fifth Prize
  • $100 – Honorable Mention (there are 5 Honorable Mention awards)

Lou also did a good report of her Speech in Australia

http://asbestosaustralia.blogspot.co.uk/2014/07/keynote-speaker-canberra-act-14-july.html?spref=fb

Monday 14 July at Parliament House, Canberra to the politicians.

Senator Lisa Singh spoke, as did Peter Tighe then it was my turn.   Russell Broadbent MP also did the closing speech after mine.
(My speech below)
I’d like to begin by thanking the Parliamentary Group on Asbestos Related Diseases for organising this event and for raising awareness about this very important issue.   I’d also like to thank the Asbestos Safety and Eradication Agency for supporting this event and helping PGARD raise awareness about the dangers of asbestos.  I lost my father to pleural mesothelioma in 1985 – he was only 54 years old.   Like many people in our community, I was diagnosed with peritoneal mesothelioma, an asbestos-caused cancer in 2003. I never knew my fate would follow my father’s footsteps.  As I began to heal from surgeries and chemotherapy, mesothelioma spread to the pleura of my lungs in 2009.  I only know to fight – and fight hard – I am currently having further chemotherapy treatment.   Asbestos has had a hugely destructive impact on my family and me.
My story is only one of thousands of stories out there where families have suffered and have been torn apart by this insidious substance.  My pain and knowledge, has spurred me on to advocate for the sufferers of asbestos related diseases and their families and for greater awareness of the dangers of asbestos and prevent people from being exposed in the future.   I attended the initial Asbestos Summit in Sydney in November 2012 where Bill Shorten announced that an independent Agency would be established to target this issue.

In my mind this was the ultimate and very important step in asbestos safety and eradication for Australia and also leading the way worldwide.     I was so overjoyed that this had finally come into fruition through the work of support groups, unions and government.   I felt at peace, that if I died tomorrow I would be happy in the knowledge that this is in place.  As my mesothelioma battle continues, so do my advocacy efforts.  In April 2014, I was fortunate to attend the Asbestos Disease Awareness Organisation (ADAO) 10th International Asbestos Awareness Conference in Washington where I was honoured to receive an award for advocacy and support to other sufferers and their families. As a guest speaker, I shared my story.   Asbestos Safety and Eradication Council Chairman Geoff Fary was invited to also speak at the ADAO conference in 2013. He spoke about Asbestos Management Review, the new agency and the way forward, and people listened.  It was clear to me, that America and other countries see us as leaders in our country and abroad in campaigns to ban asbestos.  We have come a long way since the full ban on Asbestos in 2003, and most importantly, with the establishment of the independent Agency.  Mesothelioma is a death sentence for the person diagnosed and their family.  Asbestos tumours are likened to barb wire and eventually join up into like a mass of hard concrete in the linings and suffocate the organs making breathing painful.  It literally takes your breath away.

Australians need this Agency to ensure there is a national approach to identifying asbestos and developing ways to remove it from our community.  I have a great fear that without the Agency, the issue of eradicating asbestos will be put on the backburner and will fizzle out.  Please hear my voice. I would not wish this painful and aggressive cancer on anyone.  Those nearly invisible fibres have devastated my family, my friends, my community, and me.   My father paid a high price for his work – his life. Now I fight this painful, but preventable cancer.  Do we want asbestos to continue to plague us and the next generation?   For me, for us, please keep the Asbestos Safety and Eradication Agency viable – prevention is the only cure.   I thank you again for inviting me here today.

Standing on the steps of to the entrance of Parliament House prior to the PGARDS luncheon.

Photo
At PGARDS luncheon with team members of ADFA (Asbestos Diseases Foundation of Australia), Kat Burge South Australia and Senator Lisa Singh.

We Mesowarriors do voice our stories and our opinions on Asbestos and Mesothelioma in so many ways and yet we were once just ordinary people doing ordinary living until we were diagnosed with this disease.

So proud of those that can talk and get our case across for all the Mesowarriors.

ray and linda

 

 

 

 

 

 

 

 

 

 

Rays blog http://mesoandme.wordpress.com/2014/07/29/tuesday-104/

 

 

 

 

2 thoughts on “Living With Mesothelioma -My Diary- A day of energy. Lous Speach and Jan Eagerton has been honoured today

  1. Hi Mave glad you’re feeling full of energy . You put me to shame lol!!! I’ve just done a sponsored slim, I’ve lost a stone and raised £ 150 for mesothelioma in memory of my Dad Gary Walker. I just wanted to help a little. I’m always reading about your travels in your motorhome and have been thinking I would like to get one. I am constantly looking for a used one, near me, not too pricey, hopefully under 10,000 but haven’t had any luck as yet. I wondered if there was anywhere I could join to see about buying one. Have you any ideas? I would be really grateful. Thanks Mavis Take Care x Susan Davies x

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