Monday, December 29, 2014

Merry Christmas and turning the corner!

It has been a couple of weeks since my last blog due to being very unwell.  However ... I am turning the corner and feeling better/stronger each day!

3 weeks ago I had chemotherapy and a 5 hr blood transfusion due to being very anaemic and very low red blood cells.  Last week I became extremely weak upon any exertion including getting out of bed, chest tight and pains .... thank goodness for park benches to lie down on!  A phone call to my oncologist and an urgent Christmas eve appointment with blood test confirmed that I was very anaemic and low red blood cells - both more depleted than 3 weeks ago - so a blood transfusion followed immediately for 5 hours.  The good side of it was that I was home for Christmas!

Christmas day phone calls from my 2 daughters/grandkids while lying on the sofa outside for a few hours to regain my strength .... then off to family for a wonderful Christmas get-together lunch/present opening/good cheer and beautiful dinner with family.  I was thoroughly spoilt - and this year did not lift a finger to help - was just waited on - so thank you to family - it was very special.  Reminds me of when I was growing up and our beautiful family Christmas get-togethers that I continued when my kids were growing up.  A very special time when all family including grandparents/aunts/uncles etc come together and those who are on their own.

The previous Saturday we had driven to Bendigo - an hour north of here to my brother and SIL place for my side Xmas luncheon - very pleasant sitting under the shade of their beautiful pergola covered with grape vines.

Today is overcast and cloudy however the sun is trying to shine .... 20 degrees C expected.  Birds are singing and eating from the bird feeder - parrots/ravens/cockatoos/blue wrens/kookaburras .....
Charlie is on my lap - his double bell seems to have put a stop to his bunny collection!

Thank you to all my dear friends/mesowarriors globally - for your Christmas/New Year greetings/gifts/cards.

I know Christmas is a very hard time for some folks - my heart goes out to you and hugs coming your way.

For those doing it tough at the moment - I am sending you a rainbow of love, hope and strength.

Nice pic Paul ...

Sunday, December 14, 2014

Fighting the mesothelioma beast! ADFA (Asbestos Diseases Foundation Australia) slams Channel 9’s The Block putting home renovators at risk of asbestos exposure with reckless ads.

It has been a few weeks since my last posting.  In that time I have been in a pretty dark place with my body/immune system.  Chemotherapy 12 days ago, 5 hour blood transfusion due to being very anaemic and extremely low red blood cells.  As a result my breathing has been restricted with chest tightening upon little exertion including light walking (thank goodness for park benches lol to lie down on and rest a few minutes)!

We are enjoying a few days in beautiful warm and sunny Tasmania by the beach to regain my strength and energy to fight this mesothelioma beast once again!  I WILL NEVER GIVE UP!!  Lying on the bed listening to the gentle and rolling sound of the waves, light meditation and looking out to sea and the lighthouse in the distance across at Lowhead - very tranquil and peaceful - perfect medicine for me to regain the fight!

This year we have lost so many beautiful and brave mesothelioma warriors thanks to deadly asbestos greed.  I had become friends with these warriors and their families.  Totally senseless deaths.  We need to keep uniting on a global front to eradicate all asbestos worldwide.  In unity we are strong!

My heart goes out to many warriors who are doing it tough at the moment - treatment, scans etc.

Christmas and holidays for many are just around the corner - cherish your family and friends, without them we are empty in our hearts.
Channel 9 putting home renovators at risk of deadly asbestos exposure with reckless ads for The Block
Asbestos advocates have slammed a Channel 9 promotion for the new series of The Block, saying its dangerous disregard for safety could lead to home renovators suffering from deadly asbestos diseases due to dust exposure.
The Asbestos Diseases Foundation of Australia urged management from the network to immediately pull the advertisements from the airwaves.
The video, promoting the 2015 series of The Block which is currently in production in Melbourne, features contestants using jackhammers, angle grinders, saws, sledge hammers and drills to tear through three units — covering themselves and occupants in clouds of dust.
ADFA president Barry Robson said not one person in the video was wearing any form of breathing protection, with contestants breaking through areas of older homes likely to be riddled with asbestos.
“Any house or unit built before 1987 has a good chance of containing asbestos, whether it was built from brick, weatherboard, or fibro,” Mr Robson said.
“People falsely think asbestos is only found in fibro sheets, but it can be found under floor coverings, behind tiles, in cement floors, around hot water pipers, in walls, ceilings, insulation products and fire protection.
“In their advertisement, The Block shows contestants smashing through many of these high-risk areas, in properties of an era where asbestos is likely to be present, all without any safety precautions being in place.”
Mr Robson said he was horrified by the commercial and feared it could lead to countless home renovators exposing themselves to deadly asbestos due to unsafe work practices.
“I was left absolutely speechless, with contestants shown falling through a ceiling, bringing clouds of dust and debris onto unsuspecting home owners, as power tools are shown tearing through the units,” he said.
“This is what happens when TV producers and advertisers, with no understanding of the very real dangers of asbestos, put the promotion of their product above the safety of their viewers.
“These ads need to be taken off the air immediately, The Block needs to ensure their units are asbestos free and viewers must be warned of the very real dangers posed to home renovators.
“Every year about 1,000 Australians die from asbestos diseases, with people exposed during home renovations the fastest growing group, which is why this behaviour is so dangerous.”
Lou's comment:  Absolutely appalling and total ignorance of the deadly dangers of all asbestos!  Putting innocent lives at risk both on television and the home renovators who will look at this video and think if they can do it then so can I - What is the big deal about 'asbestos' - something has to kill me one day!  These idiots forget they are not invisible and are exposing their family and friends to deadly asbestos fibres every time they endanger their own lives by going gungho and removing asbestos from their homes.  By simply releasing invisible fibres into the air they are exposing everyone.  As these fibres can stay dormant in your body for 20 to 40 years before deadly mesothelioma presents itself many people are of the attitude that asbestos awareness is over-rated!  Let me tell these idiots it is not!  I would not wish mesothelioma cancer on anyone - it is a painful and aggressive cancer that will literally take your breath away!

Monday, December 1, 2014

Australia's 1st International Conference on Asbestos Awareness & Management 16 to 18 Nov 2014

ASEA (Asbestos Safety and Eradication Agency) hosted Australia's inaugural international landmark Conference on Asbestos Awareness & Management at Crown Convention Centre, Melbourne, Victoria, Australia 16 to 18 November 2014.  A fabulous conference bringing delegates on a global scale together in unity.  There were over 260 delegates from five countries who attended the conference.

Keith (my husband) and myself were very proud and honoured to attend this conference for the 3 days.  Sunday 16 November 6pm  to 10.30pm a welcome reception where Geoff Fary (Chairman ASEA) welcomed everyone and also with a great speech outlined how the conference would proceed on 17 and 18 November.  It was a very informal reception where guests mingled and enjoyed getting to know each other and rekindle old and new friendships.

Day 1 - Monday 17 November 2014
Matt Peacock was the facilitator for the conference and did a great job of introducing all the speakers.

Peter Tighe presented the opening address.
 (Peter is the Asbestos Safety and Eradication Agency CEO)

He introduced me as a victim of asbestos and a video was played in the background.
Lou Williams giving a very moving video address at the 1st International Conference on Asbestos Awareness & Management in Melbourne. Lou's father died from mesothelioma and Lou is fighting the disease. Peter Tighe noted that Australia's mesothelioma death rates are on par with our national road toll. We don't talk about it!
Lou Williams giving a very moving video address at the 1st International Conference on Asbestos Awareness & Management in Melbourne. Lou's father died from mesothelioma and Lou is fighting the disease. Peter Tighe notes that Australia's mesothelioma death rates are on par with our national road toll. We don't talk about it.
(the above link is to the video)

James Wunsch, Benchmark Australian Survey on Asbestos Awareness presented as a lead researcher for Colmar Brunton.

11:15am - 12:45pm International Keynote speaker Dr Richard Lemen, Assistant US Surgeon General (retired) spoke on Asbestos and Public Health: A US Perspective followed by a panel discussion.

Day 1 afternoon conference was divided up into 4 concurrent sessions.
1:45pm to 3:00pm Linda Reinstein, President/CEO and Co-founder, Asbestos Disease Awareness Organisation (ADAO) spoke of The Importance of building and sustaining stragegic global and domestic partnerships.  Followed by a panel session with Paul Bastian and Kate Lee (Union Aid Abroad - APHEDA).

(In the other sessions the topics were Litigation trends in Asbestos related diseases, Case study Mr Fluffy with Brianna Heseltine and Removal & Disposal).

3.30pm - 4.45pm Campaigning for Justice: On the Asbestos Frontline 2014 with Laurie Kazan-Allen, Co-ordinator, International Ban Asbestos Secretariat.

6.30pm to late - the Conference Gala Dinner venue: Palladium at Crown Convention Centre, Melbourne.
We were sitting on the main table with Peter Tighe, MC Max Walker, Kevin Sheedy (guest speaker) and Trevor Gillmeister - Taking an Axe to Asbestos: Walk for Awareness who lost his dad to mesothelioma and decided to do a walk to raise money for awareness.  Trevor presented a video that was great to watch and spoke about his amazing walk with Max Walker.

A wonderful night of relaxing, enjoying the varied speakers and good food/music.  A night that I wanted never to finish!  However by 10pm I was exhausted and went back to my room .... however Keith decided to stay on until about 12.30am and enjoyed the night catching up with everyone.

Day 2
International speaker Prof Ken Takahashi, Professor of Environment Epidemiology, Director of WHO Collaborating Centre, Japan presented Epidemiology and trends in asbestos related diseases.

11:00 to 12:15pm 4 concurrent sessions
Case study in  best practise - Ergon Energy
The need for Quality training
Disease prevention and current treatments of ARDs
Managing the DIY and domestic environment

1:15pm Performance by Victoria Trade Union Choir

1:30pm - 2:30pm Panel discussion and open forum Creating the environment for change

The conference ended at 5pm with a panel discussion
Where to from here? What can be done domestically and internationally - developing the communique.  Followed by summary and conference close.
The first International Conference on Asbestos Awareness and Management has recognised the ACT government's decision to demolish all Mr Fluffy homes as the only viable option to eradicate the deadly risks posed by loose fill asbestos.
The conference issued a strongly-worded communique on Wednesday morning following the two-day Melbourne event, which drew government officials, international and Australian asbestos medical experts, health care professionals, community groups, victim support groups, industry bodies and unions.
The communique stated "it is the consensus of all delegates that all forms of asbestos fibres kill and the only solution is to eliminate the sources. There is no known safe level of exposure to asbestos. This conference finds no scientific evidence to support the concept of controlled use advocated by some in the asbestos producing industry."
"Controlled use" is a method argued for by international asbestos exporters in Russia, China, Canada and other countries to justify their sale of the deadly carcinogen to developing countries like India.
Having heard evidence from Mr Fluffy homeowners and ACT government representatives on the presence of amosite asbestos insulation in more than 1000 Canberra homes - with between 50 and 60 per cent having fibres detected in living areas - the ACT government was described as a world leader on safe practice for its October 28 decision to spend $1 billion demolishing these homes.
An advertisement by Dirk Jansen, aka Mr Fluffy, placed in The Canberra Times in 1968. An advertisement by Dirk Jansen, aka Mr Fluffy, placed in The Canberra Times in 1968. Photo: Canberra Times

Recognising examples in other countries where government action was forced through litigation on asbestos disease, conference delegates endorsed action by the ACT government to end the risk to the community, potentially heading off years of protracted legal arguments.
Conference delegates also lent support to a uniform national response.
"The Australian Capital Territory government's response to demolish Mr Fluffy homes is acknowledged as the only enduring solution to the ongoing risk posed by loose fill asbestos insulation and the conference commends this approach to other governments," they said.
Federal Asbestos Safety and Eradication Agency head Peter Tighe said the clear implication was the NSW government needed to identify and demolish an estimated 60 Mr Fluffy homes across the border in NSW.
"I believe they don't have any other option," Mr Tighe said.
He noted the situation in NSW was even more pressing than the ACT, as homes had never been remediated and still contained full quantities of Mr Fluffy amosite.
In 1999, the Commonwealth spent $100 million cleaning the roof cavities of more than 1000 Canberra homes. But in February the ACT government conceded ACT residents still faced the risk of remnant fibres migrating into their living spaces and it wrote to homeowners warning them of this fact.
NSW was not included in the remediation program and the NSW Government called an inquiry in August into Loose Fill Asbestos Insulation, chaired by the Reverend Fred Nile.
The committee conducted a public hearing in Queanbeyan on Monday but is not due to report to government until February.

Lou's comment - a fabulous and very informative conference bringing asbestos expertise to the forefront in Australia on a global scale.  Thank you ASEA for having the initiative to host this conference and put Australia on the worldwide map.  We are leading in so many ways the asbestos fight and with helping our Asian neighbours to ban asbestos in the future through training and workshops/consultation etc we will ensure that our knowledge is not in vain!  I look forward to the next conference!

Thursday, November 13, 2014

Remembering Anita Steiner a true social media mesothelioma warrior

Anita SteinerAnita Steiner lost her battle with deadly mesothelioma (asbestos cancer) 12 Nov 2011 at the young age of 49 years.  This picture shows Anita with her little girl Emma.

To know Anita was to love her!  A beautiful warrior who was an Australian pioneer of social media and instrumental in setting up various asbestos related groups/pages on facebook to reach out to others living with an asbestos related disease worldwide.  It is now 3 years since Anita lost her battle.  She is always with me and I will continue 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.  RIP beautiful lady- whose life was taken too soon thanks to asbestos greed.


Name: Anita
Age: 49
Location: Australia
Date of 1st Symptoms: 17-Feb-2011
Date of Diagnosis: 25-May-2007
Diagnosis: Mesothelioma
Treatment: Lining of right lung removed.  Chemo with Alimta and Cisplatin
How has Asbestos changed your life? (unedited): I had exposure to asbestos when I was about 4 or 5 and was diagnosed with mesothelioma about 40 years later.  It took 12 months to finally receive a diagnosis.  The tumours where discovered during exploratory surgery and the surgeon made the call to remove the lining of my right lung on the spot. Immediately following this I did chemotherapy with Alimta and Cisplatin. After 6 sessions of chemo PET scan declared me to be in complete remission with no traces left of any tumours.  A few months later, aged 46 I fell pregnant and Emma was born in December 2008.  October 2010 the mesothelioma returned and I’m currently having chemo again.  My last scan showed a moderate reduction in my tumours.
I believe I have a pretty positive outlook.  I have a lot of faith in medical science and the speed at which new knowledge about cancers are being discovered.  I truly believe that sooner rather than later there will be a cure for this and for most cancers.   I believe that using current treatments many of us can hopefully keep hanging in there until a true cure comes along.
In October last year my tumours returned.  I have been undergoing chemo since then and have had some good results with reductions in my tumours.  My daughter is my inspiration to keep fighting this and I continue my faith that some cure soon will be discovered.
I have been telling my story as a means of promoting awareness.  For example, 17th May 2001 on Channel 7 news in Australia, there is a feature on Women and Mesothelioma where I talk about the increase in diagnosis of women with Mesothelioma. Watch it HERE.
I have a blog that I started when I was first diagnosed with the intention of keeping friends and relatives up to date on my progress.  I now also use my blog to hopefully help others with Mesothelioma.   For example, I talk about my techniques to keep positive when things get tough.  My blog is
I am also involved with ADSVIC (Asbestos Diseases Society of Victory) and an online support network which evolved via Facebook.  We call ourselves the Mesowarriors.
I am concerned that there is still a lack of awareness of the dangers of asbestos and would like to see this changed..

Asbestos cancer survivor in international award article

Nov 2014 (Macedon Ranges, Victoria) Australia
Great Gisborne Gazette Nov 2014 edition.
Asbestos cancer survivor in international award
Louise Williams is a long term survivor of mesothelioma (asbestos) cancer and is currently undergoing further chemotherapy.
But earlier this year she was able to travel to the US to accept an award for her advocacy work.
The Asbestos Disease Awareness Organisation presented Louise with the Alan Reinstein award at a conference in Washington in April.
Louise is social media spokesperson for Asbestos Diseases Foundation Australia and Australian Director of Global Ban Asbestos Network and works hard to raise awareness of asbestos diseases.
Asbestos is a killer. Louise says that in the early 1900s it was known that asbestos was a carcinogenic .............

 "I only know to fight - and fight hard"she says.  "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 being exposed in the future".

Tuesday, November 11, 2014

Chemotherapy day 14, ASEA International Conference Melbourne 17 to 18 Nov 2014 and goodbye to a beautiful warrior

Chemotherapy day 14 - probably the worst day of it today!  I woke up this morning feeling very weak, exhausted and in a bit of pain.  Mid morning saw me struggling to walk far without feeling out of breath and fluid building up in peritoneal and pleural areas.  Very scary and yet strangely I was at peace in my own little world when this happened.  We had to go out and pick up our mail up at the Trading Post, Mt Macedon where after sitting down in the cafe for a little while and having a glass of apple juice and half a savoury muffin, I came good so next a visit to Gisborne for petrol and the shops.  I had to go and lie down on a park bench for a while to get my shallow breathing back in order.  Sitting in the park with Keith, I found myself looking up at the beautiful blue sky with a few clouds in it and thinking this is my little world and I am cocooned here on this park bench,  I could just close my eyes and not wake up as I was at peace with myself and the world.  HOWEVER I am not one to give up and tonight I am feeling much better and even on the computer writing this blog with Charlie (my siamese cat) on my lap and the heater on as it is freezing cold here tonight.  With mesothelioma we are up and down with symptoms and when my breathing was so shallow and painful I wanted to shout to the world that mesothelioma cancer I would not wish on my worst enemy (not that I have one lol)!

On a more exciting note - the 1st International Conference on Asbestos Awareness & Management in Australia is just a few days away.  ASEA (Asbestos Safety Eradication and Awareness) are hosting this wonderful conference and I am delighted to be part of it!  By the start of the conference I will be fighting fit!

Linda Reinstein, CEO, ADAO  wrote below about the Conference.

ADAO Presenting at the 1st International ASEA Asbestos Safety and Management Conference in Australia

Australian ConferencePosted on September 08, 2014 ADAO to Participate in 1st International ASEA Asbestos Safety and Management Conference in Australia
Posted on November 10, 2014
The Australian Asbestos Safety and Eradication Agency (ASEA) will host its 1st International Conference on Asbestos Awareness and Management on November 16-18, 2014 in Melbourne. The Asbestos Disease Awareness Organization (ADAO) is honored to have been formally invited, alongside many of the world’s top ban asbestos leaders, to participate and present in this world class event.
Dr. Richard Lemen, Co-Chair of the ADAO Science Advisory Board, and Assistant US Surgeon General (retired), will give the international keynote on “Asbestos and Public Health: A US Perspective.” I am pleased to be presenting within the “Creating an Environment for Change” panel which also includes Peter Tighe, Asbestos Safety and Eradication Agency Chief Executive Officer, Prof. Ken Takahashi, Professor of Environmental Epidemiology, Director of WHO Collaborating Centre, Japan, and Laurie Kazan-Allen, Coordinator, International Ban Asbestos Secretariat.” Click here for information about the program and presenters.
My international keynote presentation, “The Importance of Building and Sustaining Strategic Global and Domestic Partnerships,” will focus on how ADAO has harnessed the digital revolution and social media to spark and sustain international collaboration and prevention efforts. After the presentation will be a panel discussion including Paul Bastian, National Secretary at Australian Manufacturing worker’s Union, and Kate Lee, from Union Aid Abroad (APHEDA). In this unique event we will showcase this international collaboration combining the efforts and knowledge of nonprofits and unions alike.
In 2002, when Australia was blacklisted as a country with “one of the highest incidence rates of mesothelioma in the world,” the government took action (Leigh & Driscoll 2002). Since then, the Australian government has taken a proactive stance in combating this deadly problem and in doing so has set the bar for other developed nations to strive for in asbestos prevention. Following their 2003 ban of asbestos, Australia has built an extensive system to protect its citizens from this carcinogen as seen in their National Strategic Plan for Asbestos Awareness and Management. This forward thinking plan serves as a model many of us would like to emulate in our countries.
The  1st International Conference on Asbestos Awareness and Management is landmark conference fully organized and funded by the ASEA – a integral part of the Australian Government. Mr. Peter Tighe, ASEA Chief Executive Officer, remarked:
“November is (Australia’s) National Asbestos Awareness Month and the [ASEA] agency has organized a conference featuring well renowned international experts in asbestos management, health, advocacy and governance to challenge delegates into thinking how Australia can drive change in our region and globally when it comes to the continued manufacturing and distribution of asbestos containing materials. This event will provide a stimulating and entertaining environment for delegates and stakeholders to discuss the big issues facing them in raising awareness about the dangers of asbestos in our work and domestic environment and how it can be managed into the future.”
ADAO sends our gratitude and support to the Asbestos Safety and Eradication Agency as they continue to raise awareness and action to protect public health and raise international standards in regards to asbestos prevention.

With sadness ... we say goodbye to another beautiful Mesothelioma warrior - Jill Vaughn. We send our sincere condolences to Jill's family and friends during this difficult time. May we all remember Jill’s courage and perseverance throughout her 18-year mesothelioma battle, as she inspired countless patients and families around the world.  As Jill wrote for years "Another songbird falls silent on Earth, and in the heavens another star blinks into existence in the evening skies to help light the way for the rest of us.” Sweet Jill, you will live on in our hearts forever. Tisha Vaughn, we are sending love and prayers to all of you.  When attending the ADAO Asbestos Conference in Washington, DC in April 2013 I had the pleasure of meeting beautiful Jill and her loving husband Bud.
As I say goodnight on this blog, Charlie has started his count with the baby bunnies (wild ones) as he brought us a present last night and dropped it at our feet ....  Last summer his count was 38 bunnies!  Here they are a menace and just breed so fast.  Today he is exhausted and sleeping most of the day to regain his strength!

Tuesday, October 28, 2014

Classic cars, weekend away and chemo tomorrow!

Sunday we left early for Melbourne making sure that Charlie (our siamese cat) had plenty of food namely his free range chicken to eat, plus a cat food and lots of water to drink and a comfortable bed for the night to snuggle into a thick blanket that we leave on the lounge room chair for him to cocoon himself in.  Just as well because that night we had the worst lightening and thunderstorms across the State of Victoria.

This photo was submitted by Herald Sun reader Terry Davis. He took this photo at Bundoora
 Sunday morning we went to
Exhibition Building, Carlton gardens Melbourne, Victoria, Australia.  
The organiser of Melbourne's Motorclassica event is confident it can keep support from carmakers.

Motorclassica lays down challenge to motor shows

Organiser of successful classic car display says there is not room for three major motoring events in Melbourne.
The organiser of Melbourne's Motorclassica event is confident it can keep support from carmakers. The organiser of Melbourne's Motorclassica event is confident it can keep support from carmakers.
Melbourne's Motorclassica attracted thousands of enthusiasts across the weekend, along with attention from blue-chip brands such as Mercedes-Benz, Maserati and Jaguar.
It's the nearest Australia came to hosting a motor show in 2014 and event director Paul Mathers is happy with how the nation's premier classic car event is tracking, just as long as you don't call it a motor show.
"To be honest I'd like to distance our event from being a motor show," he says.
A classic Bentley Continental fetched more than $1 milllion during Motorclassica's auction. A classic Bentley Continental fetched more than $1 milllion during Motorclassica's auction.
"I think the name 'motor show' has a negative connotation right now. It's something that is defunct and broken.
"Motorclassica is not a motor show at all. It doesn't want to be and doesn't need to be that."
Held in Melbourne's heritage-listed royal exhibition halls each year, Motorclassica is fast-becoming a must see for automotive enthusiasts.
This classic Porsche 356 convertible was also a hit at the show.

 Next it was a short drive to Balwyn (suburb of Melbourne) to MacLeay Park for the annual (AussieFrog) French car display where we met my brother Chris and his wife, my SIL Cheryl for lunch and a walk around the cars.  They were celebrating their first wedding anniversary on this day - what better way of celebrating then looking at beautiful cars!

 Next a scenic drive to South Yarra where the 4 of us were staying the night in Amity Apartments.  A beautiful sunny and warm Sunday afternoon - a short walk to the French Fantasy cafe where we sat outside with croissants, lemon tart and good coffee/green tea and enjoyed people and poodle watching!
That evening we went to a Greek restaurant and sat outside to enjoy the sidewalk dining and cooler air!
During the night very scary thunderstorms and lightening.  Lucky for us we had a midday checkout as the traffic in Melbourne that morning was at a standstill due to the the heavy flooding and storms!  When we left the apartments hardly any traffic on our way home.

An early start tomorrow for chemotherapy and an appointment with my oncologist in Melbourne.

During the week I received an email from Italy - a sister of a lady who has just been diagnosed with mesothelioma.  She had been told of a lady who lived in Australia who was a long term survivor so had looked me up online and bingo found this blog.  Thanks to social media it is possible to connect worldwide with mesothelioma so that no one is on their own ever!  There is support online and contacts to be made with others and various groups.  I was able to put this family in touch with a very good oncologist in Italy.

To all those who are doing it tough at the moment my heart goes out to you.  Sending you love and strength.

Friday, October 24, 2014

Flu gone! Life is good! Asbestos events for November 2014

Finally after 2 weeks both Keith and myself have just about shaken off our flu and coughing.  One minute we would be feeling fine, then next aches and pain all over and a feeling of being just so weak and having to lie down, have a sleep and revive again.  I hope that we have had our share of the flu for the year!  So many people have been affected by it on a global scale.

Summer is trying to peep its head around the corner with days of sunshine and warmth.  The nights are still quite cold.

In the opening plenary session of iMig 2014, Dr. Jim te Water Naudé and Dr. Steven Mutsaers welcomed close to 300 healthcare professionals to Cape Town, South Africa. It’s an impressive number of attendees for this somewhat remote but beautiful venue and given iMig’s membership of around 500 members. The assembled group comprises the finest minds in mesothelioma related research, treatment, and advocacy from around the world. It’s quickly evinced as a heavily scientific affair with a fun spirit as Dr. te Water Naudé jokingly threatens to use a vuvuzela horn on speakers who defy their time restrictions.

 On the home front there are quite a few events on for asbestos month/asbestos week in Australia.

The Asbestos Diseases Foundation of Australia Inc.
is a not
profit organisation working to
provide support to people living with asbestos
related diseases, family members, carers and
a is a community based group founded
by the union &
concerned citizens to meet the
needs of people affected by asbestos related
diseases and has a long history of being engaged in
advocacy work within the Australian community.
works to provide information to the community
as to the dangers of asbestos. Our aim is to reduce
the number of people exposed to asbestos and
future incidence of asbestos related disease in the
Australian community.
We support members living in metropolitan and
regional NSW. We are actively engaged in health
promotion initiatives in the provision of education to
the wider community.
Help us support
vital funding for asbestos
suffers and their families by purchasing a
Sponsorship Package.
Watch each race in comfort in
The Grand Pavilion
while enjoying a three course meal, fine wines, beer
and soft drink, with the added convenience of
betting facilities within the room.
Fantastic items will be available in the silent and live
auctions and raffle prizes and games.

Asbestos Diseases Foundation of Australia Inc (adfa) is hosting their annual fundraiser on 1 Nov 2014 Gala Race Day at Rosehill Gardens, Sydney in the Grand Pavilion.  Please support this very worthy fundraiser and fun day.  Further details

1st International Conference on Asbestos Awareness and Management 16-18 November 2014, Crown Melbourne.

16th - 18th November, 2014
Crown Melbourne,
Southbank, Victoria

"Working towards an asbestos free Australia"

The Asbestos Safety and Eradication Agency is holding the inaugural International Conference on Asbestos Awareness and Management 2014.
November is National Asbestos Awareness Month and the agency has organised a conference featuring well renowned international experts in asbestos management, health, advocacy and governance to challenge delegates into thinking how Australia can drive change in our region and globally when it comes to the continued manufacturing and distribution of asbestos containing materials.
The conference will start with a welcome reception on Sunday evening 16th November and will run the 2 full days Monday 17th and Tuesday 18th November 2014 with a conference dinner on the Monday evening all within the confines of the Crown hotel and conference complex on Melbourne’s Southbank.
This event will provide a stimulating and entertaining environment for delegates and stakeholders to discuss the big issues facing them in raising awareness about the dangers of asbestos in our work and domestic environment and how it can be managed into the future.
This event will also highlight the role of the agency in advocating change and the need for an independent body to deliver change on the ground, in the Australian and international community.

About the agency

The Asbestos Safety and Eradication Agency was established on 1 July 2013 to provide a national focus on asbestos issues, which go beyond workplace safety to encompass environmental and public health issues. The independent agency will ensure asbestos issues receive the attention and focus needed to drive change across all levels of government.
Asbestos Safety & Eradication Agency 
Contact: Shane McArdle
Ph: -61 2 9246 0558
Bernie Banton Foundation - Stan's van promoting awareness and the dangers of asbestos. 
The last week of November is Asbestos Awareness Week, Australian-wide. To recognise Asbestos Awareness Week the Bernie Banton Foundation's Mobile Asbestos Education and Awareness Unit - Stan's Van will be exhibiting in Melbourne's Fed Square Swanston Street Forecourt (directly opposite the Flinders Street Station) from Tuesday the 25th to Saturday the 29th of November. We will be open from about 8.30am to 8.00pm each day. So far we have supporters from Victoria, NSW and SA coming to help man Stan's Van and promote awareness of the dangers of asbestos. We will be having the official Victorian launch of the Mobile Asbestos Education and Awareness Unit during the week, and be recognising the 7th anniversary of Bernie Banton's passing on 'Bernie Banton Day', Thursday the 27th.  A big thankyou to Fed Square for coming on board as Event Partners, helping to make the Bernie Banton Foundation Asbestos Awareness Week possible.

To find out more contact us on:
Freecall 1800 031 731
Facebook: Asbestos Education and Awareness - Stan's Van
Twitter: Stan's Van @AsbestosEducate
On Wednesday 26 October 2014 Asbestoswise will be holding their annual Commemoration Day - this year across the road at St Pauls Cathedral, Melbourne at 11am.
Due to the flu my chemotherapy regime has been postponed until next Weds 29 October providing that my immune system is stronger after the flu.

My newest little 6 week grandchild!  Still no name as yet!!


Sunday, October 12, 2014

PET scan results and passing of a warrior friend

It seems ages since I have written my blog.  I did have good intentions Sat morning to do so, however body aches/flu got in the way!!  Late Friday evening a visit to Melbourne for results of recent PET/CT and round table discussion of my case.  The appointment with my oncologist was a mixed bag this time - the multi disciplinary team all came to the same conclusion NO DRAINAGE as the tumours would seed.  All including my oncologist felt that further chemo is the way to go to get a bit more shrinkage of fluid only.  Where the dead mass is (and no one can actually come up with what it is) there is active tumour activity there - that is what the PET scan showed,  chemo will not shrink the tumours anymore as they appear to now be too resilient to further treatment, however as good as it gets fluid shrinkage may occur so I was due to have further chemo Weds 15 Oct, due to the flu it now will be Weds 22 Oct.  So tumour growth is on the increase however as I said to my oncologist I feel well and my breathing is good - so quality of life is there!!  Now I just have to lol shake this rotten flu bug!

On another note, we lost a very brave warrior friend yesterday to mesothelioma in Queensland.  Pat McCormick born in 1956 who was married to his beautiful childhood sweetheart Marilyn.  I have very special memories of a wonderful dinner party at Gail and Steve Cook's home in July 2013 where Keith and myself got to meet Pat, Marilyn and their beautiful daughter Nicole.  Steve was the perfect host along with Gail and cooked up a hearty meal for us.  Steve sadly lost his life in Nov 2013 to mesothelioma.  Again in July 2014 Gail, my friend Helen, Pat and Marilyn caught up once again at Burleigh Life saving club for a wonderful lunch of laughter, sadness and 3 hours of friendship.  Pat like Steve was a brave warrior who never gave up even though his pain was so unbearable for most of his 2.75 years of living with this deadly and aggressive cancer.  Pat is now resting free of pain.  Both Steve and Pat should still be here living their life with their soulmates however thanks to asbestos greed their lives were cut short.  Both Gail and Marilyn are left to pick up the pieces without their soulmates.  RIP Pat and Steve you both are dearly loved and sadly missed.  

Our recent quick trip to Queensland was wonderful, hectic and enjoyable.  I got to spend time very special time with my beautiful daughter Debbie and little grandchildren Lux, Evie and new little baby girl.  No name yet for bub - keep posted!  This picture is taken at Shingle Inn, City Hall, Brisbane.
When my children were little in the early 1980s we would on special occasions visit the original Shingle inn for birthdays and other special events.  This visit to the 'newly restored' inn brought back very special memories for both myself and Debbie.  Especially as Debbie has now returned as a mum with her daughters!
Brisbane's favourite place to dine since 1936
One of Brisbane's great icons, the Shingle Inn, has returned to the city. If you're a little puzzled as to why I refer to it as returned, it's because I'm not talking about the Shingle Inn cafes that can be found dotted around the CBD and suburbs, but the flagship restaurant that once resided on Edward Street. The original Shingle Inn has reopened in its new home on the ground floor of the recently refurbished Brisbane City Hall. Steeped in tradition and offering an exceptional dining experience, a visit to the original restored Shingle Inn is the new must-do for visitors to Brisbane as well as returning diners.

Shingle Inn Brisbane City Hall
Inside Shingle Inn Brisbane City Hall, image courtesy of Shingle Inn

The original Shingle Inn opened in 1936 as a café bakery renowned for its decadent sweet treats, exquisite surrounds and outstanding customer service. When it closed a little over 10 years ago to make way for the Queens Plaza shopping development many people thought that Brisbane would never again see a true English teahouse. Thanks to some careful storage, diligent restoration work, and the generosity of the Bellchambers family who have gifted the café to the city of Brisbane, the original Shingle Inn is once again open for business.
Many of the classic Shingle Inn heritage fixtures have been faithfully restored in the new premises. Original light fittings, the ornate chandelier that once hung in the front window display area, polished brass table footings and warm wood panelling are all on display once again. However it is the beautifully restored wood booths and iconic shingled roof awning that visitors will instantly recognise and remember. Apart from the fixtures and furniture there are more subtle traditions that have endured the test of time. The shiny silver sugar bowls that are turned to represent whether a table has been served, the mouth-watering display of decadent treats in the front window, and the friendly hospitality of the waitresses dressed in distinctive black and white outfits have all continued.

Shingle Inn Brisbane City Hall

Tuesday, September 30, 2014

PET Scan

PET scan today at 1.30pm Austin hospital in Melbourne.  Fasting from 7am this morning.  I decided to go by public transport on my own rather than by car with Keith as he needed to do a few things here and I enjoy travelling usually via train/coach/tram.   A coach pulled up at the train station this morning at 10.15am as due to school holidays the trains are standing room only by the time they get to our station.  The comfortable coach with 7 passengers on it went direct to Southern Cross station (the terminal station) within an hour.  A train to Heidelberg and the hospital.   Coming home in peak hour was okay to the city from Heidelberg where I got a seat, however from Melbourne to home no such luck - as was standing room only.  Arrived home at 5.15pm exhausted but relieved that the scan was finished.   Results of scan will be on 10 Oct when I see the oncologist after the multi disciplinary round table discussion of Thursday 2 Oct to view my case.

The PET Centre at the Austin Hospital was opened in 1992 and performed the first ever PET scan in Australia. The Centre boasts modern equipment equal to that of any centre in the world and provides PET scanning for clinical applications and approved research projects, including pre-clinical drug trialing.
In clinical applications, a very small amount of labelled compound (called radiopharmaceutical or radiotracer) is introduced into the patient usually by intravenous injection and after an appropriate uptake period, the concentration of tracer in tissue is measured by the scanner.
A PET scan usually takes one hour to perform and requires the patient to lie completely still. If a brain scan is being performed the patients head is placed in a special head rest and immobilised.
The following is a general breakdown of the whole PET process:

  1. Typically the Cyclotron is run for about one hour to produce enough radionuclide required for the preparation of the tracer.
  2. The automated synthesis module is loaded with the chemicals required for the radiolabelling of the tracer.
  3. The radiosynthesis is monitored and controlled by computer.
  4. The radiopharmaceutical produced undergoes quality control tests including chemical and radiochemical purity.
  5. After passing quality control, the radiopharmaceutical is loaded into a syringe and calibrated for the required radioactivity dose.
  6. The patient is injected with the radiopharmaceutical and left for the relevant uptake time.
  7. The patient is placed on the scanner and positioned as comfortably as possible. Scanning is performed for an appropriate time interval to collect sufficient data for an image reconstruction.
  8. The PET Scan results are displayed on the computer and interpreted by the physician.
Altogether my scan took 2 hours and tonight I am pretty exhausted!

I am flying to Queensland tomorrow for a week - looking forward to seeing my newest little grand-daughter who is 3 week's old today, and my little grandkids Lux and Evie as well.  A good chance to have a rest and enjoy some sunshine and warmth before results on 10 Oct of both scans and decision making!

To all meso warriors who are doing it tough, my heart goes out to you.  Sending you my strength, hope and love.

Friday, September 26, 2014

CT scan results and catching up with friends. Mesothelioma National Day

After a funny night of scanxiety - mostly sleep although some disturbed sleep mainly thanks to Charlie running/jumping over my head/body in bed as he had a restless sleep and every bit of light that would come through the window he would think it was morning and want to get up ... so he would disturb me in the process!  I think he just knew that it was an anxious night for me ... !

This morning a catch up in Woodend with friends who are in the process of moving into their newly built home.  This evening prior to my oncology visit we also called in to see a dear elderly friend who is 93 years of age for a catch up and cuppa.

Then on to the hospital for my appointment at 5.15pm.  When we were called into see Dr Zimet, he had the comparison CT scans up on his screen (previous one in July 2014) .... pretty stable since that scan ... there is a large dead mass left hand side of chest wall that appears to be a dead mass/tumour thanks to the chemotherapy .... .  Dr Zimet has ordered a PET scan for Tuesday to see what is happening, if no tumour active then he may decide to drain the dead mass and litre of fluid, however if active then will leave alone and decide on further options.  A round the table discussion at the hospital with Multidisciplinary team will follow next Thursday.

As the Melbourne traffic was in peak hour we decided to head over to Essendon and have dinner at the Windy Hill clubhouse.  Always good to keep supporting the bombers!!!

I think tomorrow we will have a day at home and catch up on jobs around the house!  Mainly outside while the weather is going to be a beautiful warm and sunny 26 degrees.

(Sept 26th) is National Mesothelioma Awareness Day. We take time to humbly remember those we lost and to continue the fight against this horrible disease in UK and USA! Australia does not have a National Mesothelioma Awareness Day - we need to be part of this global day! This is our chance to create awareness, advocacy and educate innocent people on the dangers of deadly asbestos fibres. The more knowledge and awareness we have, the less likely your children and their children of the future will die from deadly mesothelioma asbestos cancer. Please continue to sign the link below.

Both UK and USA have such wonderful events planned on their Mesothelioma Day 26 September - we need to share this day on a global scale to get the message out to all - there is no safe asbestos/asbestos kills!