Sunday, June 30, 2013

Weekend of winter weather in Macedon Ranges, Victoria, Australia

Our winter is finally here after a false start of 4 weeks of reasonably sunny and mild days!  Freezing cold outside, heaters on inside and sometimes at night the open fire lit with Charlie our siamese cat sitting in my favourite comfy chair waiting for me to finish on the computer and sit there with him and enjoy the warmth and television.

Keith is currently sitting there watching the Formula 1 Grand Prix ... with Charlie on his lap.

We had family over yesterday for lunch, it was a lovely day sitting around our dining table catching up on the latest with what the kids and their partners are doing.  As we grow older ... the next generation seems to be catching up slowly ... and we seem to be the 'oldies'! 

I found it hard to get out of bed today, very fatigued and it took until midday to come good.  My breathing was a bit shallow, swelling of fluid tightness in the diagrahm area and under the chest area though nothing major that I couldn't work through myself!  We went for a drive up to Mt Macedon and stopped to get our PO box mail there then did a short walk.  Half way up the hill I started to get chest tightening so we turned around and walked back to the car and then home.

Later in the day Keith got the chainsaw out and cut a few fallen gumtrees while I carted the branches down to a fire that he has going to burn all the tree rubbish in the middle of the paddock.  We are on nearly 5 acres of beautiful rolling countryside with lots of lovely old gumtrees that are starting to fall branches due to old age and wind/drought weather.  Tonight I feel better although my tummy area is still tight with fluid.  It will pass .... .

No word on my appointment with my oncologist as yet.  I will phone in the morning.  The radiologist, Malcolm Feigen was presenting my case last Thursday to the multi discipline medical team and then report back to my oncologist Allan Zimet.  So hopefully this did happen Thursday, if not it will take place this week and my appointment will be scheduled for then.

Wednesday, June 26, 2013

Very proud to accept the 2014 Alan Reinstein award (Asbestos Disease Awareness Organisation) America

Thank you Linda, this truly is a very great honour and to be shared with 2 beautiful warriors Janelle and Heather, who are so deserving of this wonderful award. My heart goes out to Janelle, I am so pleased that she was able to acknowledge and receive her award - such a beautiful warrior. We will continue the fight!
Thank you to Linda, Rod, Karen and Heather - I am so blessed to know you guys!  RIP beautiful warrior Janelle.  

The Asbestos Disease Awareness Organization (ADAO) is proud to announce that Janelle Bedel, Heather Von St James, and Lou Williams will be recognized with the 2014 Alan Reinstein award on April 5, 2014 in Washington, D.C. ADAO is deeply grateful to each of these women for their dedication and commitment to education, advocacy, and support to patients and families around the world.
April 4 - 6, 2014 Washington, D.C.
Today our beautiful Linda Reinstein, ADAO announced on facebook another recipient of this deserving and wonderful award - myself!  It is a great honour to be acknowledged with this award and I thank ADAO for recognising the work that I do to raise asbestos awareness, advocacy and support globally. 

The Bernie Banton Foundation is proud its' Asbestos Awareness Information and Support Officer Lou Williams has been recognised globally for her untiring efforts world wide in heightening awareness to the dangers of asbestos, and continually supporting asbestos related disease (ARD) sufferers and their families.

Lou is a truly worthy co-recipient of the ADAO 2014 Alan Reinstein Award. I know she feels honoured to be receiving this award along with fellow mesothelioma cancer survivor Heather Von St.James and the late Janelle Bedel who lost her battle with mesothelioma only a week ago.

I wrote the following about Lou on the 19th June, I wont try to improve on it as I think it really does sum Lou up:

"Lou Williams is a legend, no not in her own mind, but around the world, as an asbestos cancer survivor, supporter of many adversely affected by exposure to asbestos, and an awareness advocate.
All at the Bernie Banton Foundation are proud to call Lou, not only a fellow team member, but a friend!
Karen and I call her KS ('Kindred Spirit' - As she was also to my late, beloved Julie), but she is far more than that, she is a very special person."

Saturday, June 22, 2013

A week of heartache thanks to deadly asbestos!

More beautiful lives have been taken early thanks to deadly asbestos and pure greed of those who knew that asbestos was deadly and did absolutely nothing to warn innocent people of these dangers.  Instead they chose to mine and use asbestos in everything possible without warnings that asbestos exposure is deadly.

To name a few beautiful warriors Debbie, Helen, Noura and more recently Janelle.  Janelle (USA) lost her life at the young age of 37 yrs!  How cruel is asbestos and greed!!  We must continue to globally ban asbestos, ban the mining, production and use of asbestos and also heavily subsidise assessment, removal and disposal of this terrible and deadly product before it kills many millions of innocent lives.  There is no safe asbestos, asbestos kills - simple as that!

So many people think that as they have been exposed to asbestos in their lifetime that they are immune to getting an ARD (asbestos related disease)!  Well unfortunately for many of these innocent and niave people it may be wrong.  Usual time until diagnosis can be 10 to 40 years,  and also leading up to their diagnosis they may experience strange symptoms, mine were bad migraines and chronic fatigue to name a couple of things.

Minimal exposure is possible to getting an ARD, there is no hard and fast rule that says the exposure can be minimal or maximum.  Asbestos does not separate, it grabs whoever is in its deadly path and laughs in our faces as does the greed of some parasites who feed of it!

Wednesday, June 19, 2013

A brave and beautiful meso warrior's funeral 18 June 2013

Daniel (Noura's son), Anne (Noura's daughter in law and married to Daniel), Lou Williams, John (Noura's husband), Mary (Noura's daughter), Suzi (Noura's daughter), and her 2 gorgeous little grandkids next to their proud parents Daniel and Anne.  A beautiful photo with Noura in the front pictured.  RIP beautiful warrior, you are truly missed so much.

Bernie Banton Foundation via Asbestos In The News - A Bernie Banton Foundation Social Media Network Page
Lou Williams is a legend, no not in her own mind, but around the world, as an asbestos cancer survivor, supporter of many adversely affected by exposure to asbestos, and an awareness advocate.
All at the Bernie Banton Foundation are proud to call Lou, not only part of our team, but a friend!
Karen and I call her KS ('Kindred Spirit' - As she was also to my late, beloved Julie), but she is far more than that, she is a very special person.
(The above is what Rod Smith and Karen Banton have written about me - I am truly touched by their beautiful words.) To me all meso warriors are legends, heroes and beautiful people who through no fault of our own have this cancer and just get on with our lives, and try to help others so that they do not get this deadly cancer.

A train journey of 2 hrs to the other side of Melbourne where Rod Smith and Karen Banton (Bernie Banton Foundation) were waiting for me.  This beautiful meso warrior who lost her life to deadly asbestos on 14 June 2013 aged 57 yrs, her funeral was held at the Greek Orthodox Church, Dandenong and was well attended by family and many friends who loved her very much.  We were priviledged to be there too to help celebrate Noura's life that was cut short by deadly asbestos through no fault of her own.  Her exposure was as a small child. 

After the service and buriel there was a peace offering luncheon back at the church.  We were welcomed by Noura's beautiful family including her husband, John, children Suzi, Daniel, Mary and beautiful daughter in law Anne and grandkids to sit at their table, eat some beautiful food and to give thanks and celebrate Noura's life.

To see all the love in that room was just amazing.  Noura touched so many lives.  She was a very vibrant and beautiful lady.  Noura may you be cocooned in peace and free of pain. 

Sunday, June 16, 2013

Voice for asbestos victims - my story, Tasmanian Examiner newspaper

Voice for asbestos victims

Tumours are growing like cauliflower in her lungs, and they will eventually solidify and crush her organs.
After 10 years of chemotherapy and surgery, doctors have told Mrs Williams that she should focus on her quality of life, not quantity.
The 58-year old, who divides her time between Greens Beach and central Victoria, has been to at least 60 funerals for people who have died from asbestos-related diseases.
She can't explain why her own case of mesothelioma hasn't killed her yet. But she says she will raise awareness for asbestos and its dangers until her last breath.
Mrs Williams's advocacy role with the Bernie Banton Foundation has taken her across the globe, her campaign giving a voice to thousands of victims and families.
In March, she was a guest speaker at the international Asbestos Disease Awareness Organisation forum, travelling to the US, despite finding it difficult to walk up a set of stairs.
Mrs Williams is also lobbying the federal government to remove asbestos from houses and public buildings.
She said her goal was to see the removal, storage and transport of the hazardous material heavily subsidised for homeowners and renovators.
``Medically, we are well aware of what asbestos can do, but the general public is still so blaise,'' she said. ``Things like home renovations - no one wants pay a big fee for someone to come and inspect and remove asbestos.
``People say it's all hype and hysteria - but the reality is, you only need minimal exposure to be affected.''
Mrs Williams said her first contact with asbestos was as a small child in the 1950s, when her father built her a cubbyhouse from leftover fibro sheeting.
In the 1970s, she unknowingly worked at a Melbourne office that was riddled with the toxic material.
For three years she breathed in invisible asbestos particles dislodged from the suspended ceilings and insulator cables.
``Back then no one gave asbestos a second thought,'' she said. ``We just didn't know. But already it has been too late for thousands and thousands of people, who were all exposed without being aware.''
High-profile court cases throughout the 1980s set a precedent for civil damages to be awarded to sufferers of asbestos-related diseases by their former employers.
Mrs Williams's father succumbed to mesothelioma in 1985, aged 54, after years in the plastering trade.
``He went down fast, and it was a very painful death,'' she said.
Throughout the 1990s, Mrs Williams herself suffered unexplained fatigue and headaches, as well as unusual swelling in the abdominal area.
But it wasn't until 2003 when advanced scans revealed tumours in her stomach and diaphragm.
``Even then, mesothelioma was relatively unknown -  my doctor could not even pronounce it,'' she said. Mrs Williams was told she had two to three months to live if her treatment was not successful.
A marathon 18 sessions of chemotherapy put the disease temporarily at bay, but in 2009, it returned to her right lung.
She endured three more surgeries and 12 more sessions of chemotherapy.
In September last year she learned that her left lung and diaphragm were affected.
``I've been told there is nothing more that can be done - no doctor will touch me,'' she said. ``I'm not sure how much time I've got left.''
This week, Mrs Williams will travel to Melbourne to explore a radical radiotherapy option - one that would be painful and cause irreparable damage to her organs.
But she said she was determined to keep fighting.
``There are so many people who have not been as lucky as I am.
``There is still a lot to do. I want to be a voice for people.''

Olivia Newton-John Cancer & Wellness Centre radiation appt and catch up with Amanda, Diane and Briony

This morning at the Olivia Newton-John Cancer & Wellness Centre for my appt with the radiation specialist I was lucky to catch up with Diane (a beautiful meso warrior) who was also there for her followup appt with her 2 daughters Amanda and Briony. A good opportunity to grab a photo. Amanda Lee, Diane, Lou and Briony Duff-Tytler.

I had my appt this morning with the radical radiologist, and basically because my tumours are starting to form up/pleural/heart and peritoneal and close to liver/around heart ... he is thinking twice about giving me any radiation. A CT scan/round table talk with my oncologist and medical team to discuss if he can do anything .... . There is also a slight possibility of a phase 1 clinical trial ... .

Friday, June 14, 2013

Saying goodbye to a beautiful lady who lost her life to mesothelioma in Melbourne, Australia on 14 June 2013

It is with sadness and sorrow that I write this blog today and say goodbye to a beautiful lady who lost her battle with this insidious cancer last night surrounded by her family who loved her so much.

She was a very special lady who touched the lives of everyone that she came into contact with and will be missed so much especially by her family and close friends.  Her life was cut short thanks to the greed of asbestos.  All it took was minimal exposure many years ago for her to be diagnosed not so many months ago with the deadly and aggressive mesothelioma.

A true mesothelioma warrior in every sense.

Her daughter, Suzi and daughter in law, Anne have been her wonderful angels on the internet seeking out support, information and guidance then passing on to their beautiful mum all of this information so that she has been kept in the knowledge she was always surrounded by love, hope, strength and peace.

RIP our beautiful brave warrior.  We love and miss you very much.  xxx

Monday, June 10, 2013

A beautiful warrior now an angel watching over us - Debbie Brewer

In the UK on Sunday a beautiful meso warrior Debbie Brewer lost her life to this deadly and aggressive cancer Mesothelioma caused by asbestos exposure.  Our Debbie was loved by so many and will be missed deeply.  Please when you need to find an inner strength to cope with this sad news, look up to the sky and Debbie will be smiling down at you.  We can then smile back at her knowing that Deb is now free from pain. It does not mean that we will ever forget and forgive why she lost her life through no fault of her own!  Our Debs lost her life thanks to the greed of asbestos!  Debs may you honey be at peace and we will continue the fight to ban asbestos globally and make the world asbestos free! 

We love you Ms Brewer xxx