Palliative care assessment and scan results tomorrow

HAPPY NEW YEAR TO ALL - May it be a great year! 
As I was feeling much better New Year's Eve we hosted a dinner and get-together with friends and family (Linda my SIL who flew to America in April 2014 with me for ADAO's Asbestos Conference) and also BIL Ken came and stayed the night.

We were able to sit outside until 8pm and enjoy the beautiful sun setting, birds feeding and good company.  A light dinner and countdown with TV Melbourne fireworks at midnight - a fabulous night.

Next morning we had a lovely visit from my daughter Jo who lives in Melbourne, her partner David and my beautiful grandkids Ruby, Henry and Oliver - so nice to see them and made my day!



On New Year's Eve I had an hour appointment with my local GP Rod Guy at my request to discuss end of life arrangements/palliative care in the home and also why he is the only doctor out of 13 in the clinic who know anything about mesothelioma.  He immediately gave me his home/mobile numbers and said to contact him anytime that I needed to.  If I had to see someone else then to ring him and he would work out a plan with that doctor if need be.

He filled out a form and put on it that I am now in my 12 year of survival ... so in other words I know a lot about mesothelioma) and took it out to the head nurse who in turn faxed it to Macedon Ranges Palliative Care team who are based in Kyneton, Victoria.

Rod asked how come I am very calm and have a calming aura - I said it is my acceptance that I live with mesothelioma.   I also when diagnosed went for 3 years to Petrea King/Quest for Life cancer retreat, Southern Highlands, NSW.  The first time to find peace to die ... 2nd time I was at peace and others would come up to me on that course and ask what my secret for peace was.  - Acceptance and the will to live.  3rd time at request of a friend who had stomach cancer and wanted me to go back with her so she could find peace to die .... she died 2 weeks later.

Rod also asked it what were my thoughts on dying .... I told him I have come close to dying 3 times with having mesothelioma and my last experience was 23 Dec lying on a park bench waiting to see a doctor - feeling so weak I looked up to the sky/beautiful trees and could have closed my eyes as my world had become the sky/trees. 

We now know that I was dangerously anaemic and very depleted of red blood cells hence the Xmas eve blood transfusion for 5 long hours!

2 weeks on and again my bloods are way down ..... and during the night I brought up tar like bile, then for rest of day breathing very very tight and weak.  Scans yesterday - results tomorrow (Weds) evening - so further blog following.

Palliative care assessment today at home with Keith, Charlie, myself and the nurse.  Such peace of mind if I am able to stay at home until end of life or close to it.  They will work in with my oncologist and doctor.   More later on this .......

I DO NOT BELIEVE I AM DYING AT THE MOMENT, however I do believe progression of the bloody cancer is happening.

I am alive and kicking!

To all meso warriors and carers doing it tough - my heart goes out to you.

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.

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.

Hi
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.

http://www.architectureanddesign.com.au/news/channel-9-s-the-block-putting-home-renovators-at-r

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!

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!

https://www.youtube.com/watch?v=k_I7ziChDC0
(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.
http://www.canberratimes.com.au/act-news/international-conference-says-nsw-must-follow-act-governments-mr-fluffy-asbestos-demolition-20141119-11pjdz.html
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. 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!

Remembering Anita Steiner a true social media mesothelioma warrior

Anita 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.

http://www.asbestosdiseaseawareness.org/archives/5656

ANITA’S STORY

Name: Anita
Age: 49
Location: Australia
Date of 1^st 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 http://blog.anitalive.com/
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".

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

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Posted 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!