Being able to talk to someone… who’s travelled the same path, makes me feel so comforted.
A mesothelioma diagnosis can be overwhelming. Whether you’re the person who has the disease or the one walking alongside – the impact can be just as devastating.
You suddenly find yourselves going down a path you never imagined and have no experience with. The focus and attention, understandably, is on the person with the disease – how to manage the symptoms, how to make them comfortable, you’re in and out of medical appointments, discussions about end-of-life planning are needing to take place… and so much more.
You want to be there for your loved one and extended family. And you may feel that you need to be strong, to keep things together.
But whose there for you?
Nola’s world was turned around in May 2022 when her husband of 49 years was diagnosed with mesothelioma.
“I met Lizz at our first ‘Meso Mates’ gathering in the city. I was way out of my comfort zone and found the meeting very daunting. I was looking at other people in the room, listening to their life situations and saw my husband and us in those conversations, our future,” says Nola.
“I struggled to keep myself together. At the end of the meeting, Lizz and I had our first girl-to-girl chat about being married to the love of our lives and dealing with something so life-changing. I had the chance to talk about my feelings and living and caring for a person with mesothelioma, an experience we share. Lizz is a very genuine and supportive person who talks from her heart. It was comforting to talk to someone outside of family yet feels like family.”
“The second time we came together, at a large public gathering of people at an End-of-Life Planning Workshop, I broke down in public and had to leave the room. Lizz came with me. Her comforting hugs felt so good.
“Being able to talk to someone about things they understand, because they’ve travelled the same path before me, makes me feel so comforted. I feel able to confide in someone and to share my innermost thoughts and feelings. Thoughts and feelings that my protecting motherly instincts won’t allow me to share with medical professionals, Ron or my family. I trust Lizz completely.
I am a very private person and don’t easily open up or share my personal and innermost feelings, but Lizz has given me the comfort, freedom and confidence to contact her at any time. Her personality, her strength of character, her honesty and her ability to communicate that shared experience has made us friends for life.
“Thank you, Lizz and the team at Reflections.”
With lived experience of supporting a loved one with mesothelioma, we are comfortable to walk alongside and help navigate the road ahead… or just be a listening ear.
If you or someone you know is affected by mesothelioma, contact us today. You’re not alone.
What motivates me? – on our 7th anniversary our Co-Founder reflects on how it all began and where we are today
I’m often asked questions like “Are you doing this for your Dad?” or told, “Your Dad would be so proud.” As much as I appreciate the sentiment and know that he would be, this is bigger than us.
As we reach our seventh anniversary, I’ve taken the time to reflect on how it all began and where Reflections is now.
Our motives were simple. Dad was driven to encourage others struggling with asbestos disease and raise funds for research into a cure, even though he realised it would come too late to save him. My motivation was around preventing others from going through what we were.
Knowing what I know now about asbestos, every time I see or hear of a natural disaster; devastating bushfires; the mishandling of or complacency around asbestos materials, my thoughts go straight to the potential impact in years to come. As a new diagnosis causes them to look back and the realisation dawns. The fact that it was avoidable. The ‘if only’s. The inevitable loss and sadness.
It was good to hear of the recent closure of Wittenoom, but I’m concerned this only reinforces the misconception that asbestos is a thing of our past. The legacy of asbestos will be with us for a long time and there is still a lot to do to ensure people understand the risk and do what they can to prevent exposure. Working with a dedicated team of people who share my vision, is invigorating.
“The past seven years have been a culmination of good times and bad. From overwhelming sadness to elation and joy. But none of it would have happened without YOU… the people who support the work we do in reducing the impact of asbestos on the community. “
The past couple of years have brought so much growth to Reflections along with the inevitable highs and lows. The development of our Strategic Plan – our Mission, Vision and Values, all reinforcing our original intent; the announcement that WA is the first state with mandatory asbestos awareness training for trainees; the privilege of walking alongside and bringing hope to people facing a seemingly hopeless situation as they come to terms with a mesothelioma diagnosis, and the honour of standing by their side as they say goodbye to their soulmate.
Together we ARE making a real difference… and that is what motivates me. Thank you!
If you would like to know more or find out how you can get involved, I would love to hear from you.
Jo Morris – Reflections’ Co-Founder and Managing Director
All donations over $2 are tax deductible and will be used to reduce the impact of asbestos and bring hope to those affected.
What a difference it makes – a year on, our Support Network Coordinator provides insight
There is no way to positively spin a terminal cancer diagnosis, especially when people haven’t heard of it and struggle to pronounce it.
Providing accurate, up-to-date information, in the context of an individual diagnosis can help people understand the reality of their mesothelioma diagnosis and avoid the often contradictory, inaccurate, and disheartening information pitfalls of the internet.
Mesothelioma rates in Western Australia are among the highest in the world. Affecting both men and women with ages ranging from 25 to 90+ years old, no one is immune from the effects of asbestos.
I walk alongside, offering support and guidance to alleviate anxiety, and the isolation felt when coming to terms with the loss of health, independence, income, intimacy, and future. It is still hard sometimes and that is okay. Being authentic is important, it gives people permission to be real and messy in tough times.
Working with the mesothelioma community honours my husband and keeps him a part of our everyday life. My role with Reflections enables me to use my nursing skills and lived-experience in a way that aligns with my values. Be kind, make a difference, do good things, laugh often and eat cake! It is a view shared by the whole team.
Our not-for-profit structure allows us to prioritise taking the time to understand individual needs and challenges. We work closely with families, health providers and agencies across Australia and the world to ensure safe, easy, and affective relationships. Our facilitated, fortnightly support groups provide opportunities to share experiences, reassurance, and community. This is especially important as colleagues, family and friends, although well intended, can understandably stumble with what to say or do.
If you, or someone you know, are impacted by an asbestos disease and would like to know more or find community with people who truly understand, do not hesitate to get in touch.
Lizz Clarke – Reflections Support Network Co-ordinator
Steeltoes & Stilettos will return to the runway on Friday 18 November at the Hyatt Regency Perth.
The moment we have all been waiting for has arrived! We are excited to announce STEELTOES & STILETTOS will be returning to the runway as we once again bring the risk of asbestos to the big stage.
Asbestos has left a devastating legacy in Western Australia with the highest rates of mesothelioma in the world and the most in-situ asbestos of all states. Asbestos can still be found in 1 in 3 Australian homes and every year in Australia there are an estimated 4,000 deaths from past exposure to the deadly material. This landmark event not only increases awareness within industry, but also spreads the message to the wider community.
Tradies register and raise funds for the opportunity to walk the catwalk with a model at the main event to be held in the heart of Perth’s CBD. There are several runway categories representing different trades including electrical, carpentry, masonry, plumbing and finishes. On the night, the red carpet will be rolled out and guests will enjoy drinks and canapés as the top ten fundraising tradies in each category strut their stuff in the hope of being named this year’s Model Tradie of the Year!
Jo and Lizz live on 98five radio during Asbestos Awareness Week
Reflections’ Co-founder and Support Coordinator chat with Mike Crichton
During National Asbestos Awareness Week 2021, Jo Morris and Lizz Clarke had a chat with Mike Crichton about the work Reflections does to reduce the ongoing impact of asbestos on the community and support those affected.
“It’s good that you’re here today,” said Mike. “I would have thought this was something for years gone by and that everything is all sorted and safe…”
Follow the link to hear the whole interview.
Reflections’ Lizz Clarke speaks with 7 News
Be safe, be asbestos aware!
Our Support Network Coordinator, Lizz Clarke, speaks with 7 News about why she is invested in reducing the impact of asbestos and mesothelioma on the community.
Reflections bought hope and awareness as Perth lit up blue
Think Twice About Asbestos
National Asbestos Awareness week 2021 was a huge success. And, although the week is over, we would like to remind everyone that asbestos awareness is important year-round.
This year’s campaign asked Australians to Think Twice About Asbestos, reminding home renovators and tradespeople that the danger of asbestos is far from over.
In homes built or renovated before 1990, asbestos can still be found in many places. It was only in December 2003 that asbestos was banned in Australia. Before that, Australia was one of the highest users of asbestos with it being used in over 3000 products.
During COVID-19 we have seen a burst of home improvement activity as people spend extra time in their houses during the pandemic or take the opportunity to invest in their own homes.
There is a significant health threat if fibres are released, become airborne and are then inhaled. Breathing these fibres can cause a range of life-threatening diseases, including asbestosis and terminal cancer, mesothelioma.
Reflections is pleased to be reducing the ongoing IMPACT of asbestos and bringing HOPE to those affected.
“Really enjoyed the empowering message you spoke on radio, Jo and Lizz. Thank you for standing with us all in our mesothelioma journey.”
Geoff and Tracey (Clients)
A big THANK YOU to everyone who attended events during the week, donated to support our work and got out and about in Perth sharing photos of the lights in memory of lives lost and as a reminder to remain vigilant around asbestos.
“Well done to Jo and the Reflections team. You did an awesome job in raising awareness about the dangers of asbestos.”
Michael McLean (Reflections Ambassador)
If you are interested in knowing more about the work we are doing or would like to get involved, do not hesitate to reach out and one of our team will get back to you.
Be safe! Be asbestos aware!
The effects of 9/11 lives on
Yesterday marked the 20th anniversary of 9/11. I was only a toddler at the time and I cannot believe how this devastating event lives on all these years later.
In 2015, I was lucky enough to travel to America with my Mum and Dad. Whilst there we visited the National September 11 Memorial & Museum. There is the North and South Pool of where the two buildings once stood (see image below and above) and are now twin reflecting pools with the names of those who died all the way around. The memorial is a tribute of remembrance, honouring the 2,977 people killed at the World Trade Centre site. They are nearly an acre in size and are the largest man-made waterfalls in North America.
Inside the Museum I distinctly remember watching many videos of real footage from 9/11. Watching people jumping out of the buildings to their death was one of the many videos imprinted in my mind. The frantic phone calls were playing over the speakers, along with voicemails left for loved ones to hear their final last words and goodbyes. This brought me to tears. The whole experience was so confronting and overwhelming, I couldn’t have imagined being there on the day of the attack or watching the events uncover on the news.
What’s devastating is the clean-up crew and emergency workers are now suffering significant health issues 20 years after the terrorist attacks. More than 91,000 volunteers and workers were exposed to diverse hazards. As of March 2021, 80,785 of these responders enrolled in the World Trade Centre Health Program. This program was set up to monitor their health and treat those affected since the attack. It was found that 45% of the responders in the health program have conditions that affect the upper digestive tract and airways, 16% have cancer and just under 40% of responders with health issues are aged between 45 and 64. Sadly, 3,439 responders in the health program are now dead, which is far more than the 412 first responders who tragically died on the day of the event.
The death toll is expected to rise rapidly over the coming years as a result of the toxic dust that blanketed New York City when the Twin Towers collapsed. The dust that filled the air that day was full of toxic substances including hundreds of tonnes of asbestos. The US has consumed 31 million metric tonnes of asbestos since 1900, and asbestos remains legal and lethal in the US despite the serious health effects. So, you can only imagine how much asbestos was riddled throughout the Twin Towers. Mesothelioma usually takes 20-50 years to develop and there was a number of responders exposed to asbestos on the day of the attack. Mesothelioma isn’t the only issue though, 352 responders were diagnosed with asbestosis as of 2016. This is a terrible outcome to happen to those who risked their lives and were only trying to help. My heart goes out to all those affected by the events of September 11th 2001.
We’ve got to remember asbestos is not just something of the past. It has affected so many and will continue to, so we have to continue educating and creating awareness. There is no known safe level of exposure to asbestos. With Australia’s DIY culture, young men and women are often unknowingly encountering asbestos during home renovations. Across Australia, asbestos is in 1 in 3 homes. Something as simple as drilling a hole in the wall or letting your kids build a cubby out of old waste can be risky business. Asbestos doesn’t just affect home renovators though. Disaster zones pose a serious threat after bush fires, floods, storms and other disastrous events.
Every year in Australia, an estimated 4,000 people die from the effects of asbestos. Stay safe and educate yourself about asbestos. You don’t want to end up having to pay the price like so many unwillingly have from the collapse of the Twin Towers.
Tiffany Gossage – Reflections Marketing and Communications Assistant
I have come to realise that Asbestos is everywhere… this is my story
Of all the illnesses that I imagined I might get or have with that occasional pain here or there, mesothelioma was certainly not on my radar. Even when told that was what I had, it was hard to take in. How does a country girl from Victoria, who at 21 years of age moves to Perth, contract mesothelioma?
I am 64 years of age, married with 3 adult sons and I was diagnosed with peritoneal mesothelioma on 31st December 2018. This is asbestos-related cancer that develops in the lining of the abdomen. Somewhere, sometime, I have ingested an asbestos fibre.
The only reason I had gone to see a doctor was that I had lost weight. The diagnosis was a shock! Telling my children what I had and the prognosis was one of the most difficult things I have had to deal with.
When or how I was exposed to asbestos is hard to determine. I do know when I was in Victoria the family home had a garage made out of cement sheeting, more than likely asbestos. It had pieces broken from time to time when the cricket balls or footy were accidentally hit or kicked onto the sidewall. Since moving to WA the only exposure I know of is that my husband worked on water drainage pipes, which we have since found out contained asbestos. Coming home with asbestos fibres on his clothes is the closest we can come to my exposure to asbestos.
When first diagnosed with mesothelioma I was put on a cycle of chemotherapy that lasted 24 weeks, from January 2019 until June 2019. It held my meso at bay, but my body needed a break from chemo. I was in pretty good health after this until April 2020. My mesothelioma had spread into my organs namely the liver. I was once again put onto the same chemotherapy drugs that I was on previously, but I was unable to handle them this time around. I became very sick and weak. I lost a few kilos which was disappointing as holding my weight was something I was always trying to do.
My original diagnosis was from 18 months to 3 years and of course, I was hopeful of the 3 years plus if possible. I have reached that 18 months but been told that I will probably only have a few months now. I am on another round of chemotherapy using a different drug. This has been much kinder to my body so we will see if it helps me at all in a month or so when I have another scan.
Asbestos was something that I was aware as I work with the government education department and removing asbestos from schools is ongoing as the need arrives. In saying this I never felt I was in danger at work or any other place. Probably in hindsight a bit complacent.
I have a son who is in the building trade and making sure he is aware of the dangers of asbestos is something I have spoken to him about. I most certainly do not want him going through what I am at the moment.
People need to be informed of the dangers. Since my diagnosis, I have been informed of the many places asbestos is and it has blown me away. Such a danger to people yet it is everywhere.
Carmel lost her battle with this disease on 8 September 2020.
If you, or someone you know, are suffering the effects of mesothelioma or would like to know more about the work Reflections is doing to reduce the impact of asbestos on the community, contact us today and one of our team will be in touch.
One Last Christmas, We Got Two!
When Mum received her diagnosis in 2018, she was told “make Christmas count” and so we pulled the family together and made a huge day of it thinking it would be her last.
But true to form, Mum defied the odds and we got to celebrate another family Christmas in 2019, on the beach in Albany, the sun shone and more precious memories were made.
Mum, or Nanny Chris as she was affectionately known by many, contracted mesothelioma years after breathing in asbestos fibres as a child when her dad built the family of nine a new house on the farm in Broomehill. Commonly, the material for building at the time was asbestos, and just as commonly, the children played in the dust and off-cuts to fill in their days. It was not until fifty-odd years later we would learn of the devastating effect those playful days had when, at age sixty-one, Mum was diagnosed with pleural mesothelioma.
Mum was exposed to the deadly material in her home and as a child, and from that moment on, never had a chance of living a long life. She sadly died eighteen months after diagnosis at the young age of sixty-two and one exact half. Even though she was young and fit, the disease was too much for her.
Not every person’s meso/cancer journey is the same and although some questions burn in your head for answers, there are often none to give. For instance, Mum was desperate to know the what and hows about her decline and eventual death, but no one would give her or us a definitive answer. I recognise now why; Mum’s journey and end of life were as individual as she was. Although she was not quite capable in the last six months as she had been in life, she was by no means slowing down. There was no slow decline with Mum, there was going okay, plateaued, then a controlled and comfortable sleep before the end of life.
I guess what I am trying to say is that, try not to get caught up in the “what could happen” and live what is happening while you can. That goes for the patient and the family.
It is important for people to hear and share stories of asbestos exposure and mesothelioma to continue to create awareness in the broader community of non-occupational exposure. I had no idea that Mum had played in asbestos as a child or that mesothelioma existed until her diagnosis. Of course, I had heard of asbestosis and the dangers of asbestos, but it was always referenced to a work/professional environment. If we had been more aware and educated, Mum may have recognised or at least questioned her symptoms earlier. Yes, the outcome would have remained the same, but the journey may have been longer.
Chris lost her battle with mesothelioma in January 2020.
If you, or someone you know, are suffering the effects of mesothelioma or would like to know more about the work Reflections is doing to reduce the impact of asbestos on the community, contact us today and one of our team will be in touch.
End of an Era for the Bernie Banton Foundation
We would like to acknowledge the tireless efforts of Karen Banton-Smith and Rod Smith over the past eleven years as they have supported sufferers and increased awareness of the ongoing risk of asbestos to the community.
“I founded the Bernie Banton Foundation in June 2009, for only one reason, to uphold what Bernie believed in; to assist people to navigate the difficult journey an asbestos-related disease diagnosis presents; to enable people to have informed choice about specialist dust litigators and medical professionals; to prevent people being exposed to asbestos dust/fibres by creating awareness of mesothelioma asbestos cancer, and other asbestos-related diseases, and to advocate for, and to be the voice of reason for Australian asbestos-related disease sufferers, their carers and loved ones, allied health and care providers, and to the wider community.”
Karen Banton-Smith, Founder of Bernie Banton Foundation
The Reflections Board acknowledges the support Rod and Karen have provided to Reflections since its founding. Since attending our official launch in Perth, Western Australia in November 2015, our organisations have shared a common desire – a future with lives untouched by asbestos.
“Karen Banton, myself and the Bernie Banton Foundation’s Board of Directors would like to thank all those who have supported the Foundation via donating, fundraising and sponsorship over the last eleven years. Without your support, the Foundation could not have provided its’ asbestos-related disease support and patient advocacy services, and asbestos awareness and education it has become widely recognised for across Australia and New Zealand. Every dollar donated, fundraised, sponsored or given in kind has helped and meant a lot – we are truly grateful.”
Rod Smith, Awareness & Support Coordinator at Bernie Banton Foundation
The Bernie Banton Foundation website, now renamed as simply the Bernie Banton website, is being independently continued and maintained by Karen and Rod as a voluntary community service. It remains an invaluable resource which we encourage you to utilise should you have questions about mesothelioma asbestos cancer, other asbestos-related diseases, supportive care options, and asbestos and its’ effect on the community.
We wish both Karen and Rod all the best as the next chapter of their lives begin.
The Reflections Team
Compensation Entitlements for Sufferers of Asbestos-Related disease
Did you know there are compensation entitlements available to sufferers of asbestos-related disease? But there are things they need to know…
Sufferers of asbestos diseases including mesothelioma, lung cancer, asbestosis and pleural disease are often unaware that they have compensation entitlements and that there are time limits restraining how long they have to commence a claim.
Different countries and indeed each State of Australia have their own specific time limits.
Some States have no time limit while others have extremely strict time limits. For the States with strict time limits, a person is barred from bringing a claim for compensation if they do not commence proceedings within the legally allotted time frame. This means if a sufferer commences proceedings after the relevant time limit expires then they are, in most circumstances, no longer entitled to compensation.
The matter of time limits is complicated particularly where a person has exposure to asbestos in more than one state and/or overseas. It is, for this reason, it is imperative that sufferers of asbestos disease seek legal advice from an expert asbestos lawyer as soon as they are diagnosed with an asbestos disease to ensure their entitlements are protected.
When it comes to people suffering from mesothelioma seeking legal advice as a matter of urgency is imperative, as court proceedings must be commenced in their lifetime to ensure the amount for general damages (also known as pain and suffering) survives for the benefit of their Estate. If proceedings are not commenced within a person’s lifetime their loved ones are under-compensated.
Should you have any questions please contact us and we can ensure you are put in touch with an experienced asbestos lawyer who can provide you with obligation-free advice.
The Reflections Team
Steeltoes & Stilettos – returning to the runway
Align your brand with this unique, building and construction industry event as STEELTOES & STILETTOS returns to the runway on Saturday 21 November 2020.
This unique building and construction industry event brings the risk of asbestos to the big stage when tradies are dobbed-in and sponsored to walk the runway with a model.
With the highest rates of mesothelioma in the world and the most in-situ asbestos of all the states, asbestos has left a devastating legacy in Western Australia. One person dies every 12 hours from mesothelioma in Australia and an estimated 4000 people every year from the effects of asbestos.
We are currently experiencing a third ‘wave’ of sufferers including DIY’ers and tradies. This landmark event not only increases awareness within the building and construction industry, but it also spreads the message to the wider community.
“Master Builders salute the active role that Reflections plays in raising awareness of the potentially fatal risk of dealing with asbestos in the building and construction industry. This event brings the asbestos message to a wider audience and help make young people aware of the terrible outcomes associated with this dangerous substance.”
Tradies, both male and female, register and raise funds for the opportunity to walk the catwalk with a model at the event. There are several runway categories each representing different trades – Carpentry, Electrical, Masonry, Finishes and Plumbing. On the night, the red carpet will be rolled out and guests will enjoy canapes and drinks as the top ten fundraising tradies in each category ‘strut their stuff’ in the hope of being this year’s Model Tradie of the Year.
There are a number of opportunities for you to be part of this exciting event, including:
Donation of products or services
Participation at the event – dob-in and sponsor a tradie, and attend on the night.
If you would like to know how you can align your brand with this unique event and, thereby, the message of asbestos safety, contact event manager, Jo Morris.
Save the date – Saturday 21 November – and follow the event on Facebook and Instagram.
Home renos – What do we know about asbestos? How much do we care?
As we live in isolation to avoid the potentially deadly COVID-19 virus, many of us are blissfully unaware that there is a more sinister silent killer residing in many of our homes.
Pondering what I could write to encourage safety around asbestos, I’m mindful there are many resources out there from reliable sources but do we want to know? Do we really care?
That sounds harsh but it’s my experience that ‘it’s not personal until it’s personal’… and by then it’s too late.
If you knew something had the potential to kill you, you would avoid it. Asbestos is a silent killer and by that, I mean many people are not aware how common it is in so many homes and how deadly it really can be.
Before my father’s diagnosis in 2010, I knew very little about asbestos and its dangers and couldn’t even pronounce the terminal, asbestos-related cancer – mesothelioma. Ten years later, I run a charity reducing the impact of asbestos in the community through:
Over the years, my level of awareness has increased considerably and so has my belief that there are too many Australians who do not know or, in many instances, care enough to protect themselves and those around them.
As a building designer, I regularly visit sites where asbestos is present and just as regularly come up against a lack of understanding or, worse than that, a blasé attitude toward it. This is one time where the ‘she’ll be right, mate’ Aussie euphemism just won’t cut it. The facts are that it might not be all right. Asbestos is deadly, end of story!
You can’t see, smell or taste asbestos and there is NO KNOWN SAFE LEVEL OF EXPOSURE.
Let me break that down for you. That means if you think you can be exposed to a small amount of asbestos and not get sick, you’re wrong. It is true that some people will only get the calling cards of asbestos exposure and not go on to develop an acute illness, but there is no way of predicting who will get sick and who won’t.
My father, a builder, was part of the 2nd ‘wave’ of sufferers – those who worked directly with asbestos-containing materials. Unfortunately, due to the large amounts of in-situ asbestos in homes and properties, we are now experiencing a 3rd wave which includes people who were exposed to asbestos through DIY projects or tradies who were called in to do the work.
Through the support network Dad started in 2014, I have had the privilege of meeting and getting to know many lovely people whose lives were cut short due to something they knew little about and had limited exposure to. In fact, the majority of our current group are women with non-occupational exposure.
In 30 years time, are we going to look back to this time as another ‘wave’ of asbestos-related disease impacts our community? I believe we can do something now to prevent that. We need to make sure we are aware, that we understand just how dangerous this seemingly innocuous substance can be and take care to avoid exposure.
As many of us are using this time to catch up on some DIY around our homes we need to be mindful that asbestos was not banned in Australia until late 2003. As a general rule, if your house was built…
before the mid-1980s it is HIGHLY LIKELY
between the mid-1980s and 1990, it is LIKELY
after 1990, it is UNLIKELY (but possible) that it has asbestos-containing materials.
If you’re not sure and would like some advice, you can send through a pic and description of your project, and we’ll ASK AN EXPERT on your behalf. You can do this through our Facebook page or via email.
The message is simple…
DON’T DRILL, SAND OR DISTURB asbestos-containing material.
Be safe! Be asbestos aware!
Jo Morris Reflections Co-founder and Operations Manager
You’re not alone – we’re there for you!
As we live through these unprecedented times of social distancing and the uncertainty COVID-19 brings to the community, we want to remind you that you’re not alone.
If you are affected by an asbestos-related disease and would like support and connections, we’re there for you.
MESO MONDAY – join our support network as we meet online each Monday for a coffee and chat.
FACEBOOK PRIVATE GROUP – for mesothelioma sufferers and their families, this is a forum for open discussion and a safe place to encourage and share with one another.
Contact our Support Network Facilitator, Paige on 0481 553 575 for more information.
SUPPORT LINE – chat with someone who understands what you’re going through and can offer practical advice and a listening ear.
Do not hesitate to get in touch if we can help in any way.
Through the generous contributions of our community, in 2018 Reflections donated funds to support a Postdoctoral Fellowship through Cancer Council WA under the supervision of Dr Jonathan Chee. We recently received an update on the progress of the study Cracking the Code to Cancer Immunotherapy and this is what we have to share with you.
When asked what the most significant achievement was, Dr Chee responded saying that he collected tumours from animals that responded well to immunotherapy and completed key experiments that generated a robust data set. With the dataset, Dr Chee is able to use new mathematical tools to interrogate how changes in the immune system can predict immunotherapy outcomes. The two research aims for the study, which have both been partially achieved, are:
Developing novel immune biomarkers of responses to immunotherapy in mesothelioma, and
Developing a personalised therapeutic vaccine targeting mutated cancer antigens.
Aim 1 has been successful in demonstrating that immunotherapy outcomes are reliant upon the dynamic changes that occur in the immune system within a tumour before and after treatment. Detecting possible predictors of immunotherapy responses have been established through the development of new mathematical methods. This study is also in the process of being extended to patient blood samples from a recently completed clinical trial.
As for aim 2, they have found that vaccine targeting cancer mutations were not able to protect from tumour growth. Therefore, they are focussing on how to improve vaccine strategies.
Dr Chee has been successful throughout the research, involving being promoted to Level B, Step 1 at the University of Western Australia (UWA) and was selected as a mentor for top-scoring undergraduate students. This was under the UWA Fogarty Scholarship Mentoring Scheme, which started in July 2019 and ends in July 2020. Dr Chee has also formed a new collaboration with two Professors from the University of Pennsylvania. They have utilised novel analytical tools they developed to study immunosequencing data derived from melanoma patients that underwent personalised vaccination.
Dr Chee and his students have presented their results to the general public through their annual community forum, and to members of the Ban Asbestos Network and the Asbestos Victims Association (South Australia).
*All information was sourced from the Cancer Council WA Fellowship Progress / Final Report
Starting a home reno project? Be ASBESTOS aware…
As the Christmas season draws near and we look forward to spending time relaxing with family and friends, many of us will be thinking ahead to what projects we can get done around the home or holiday house. Before you get started, check to make sure you will not be disturbing any asbestos-containing materials.
Simply drilling into a ceiling or wall, removing carpet or lino, demolishing a broken-down fibro fence… you could expose yourself, and those around you, to potentially deadly asbestos fibres.
Asbestos is a naturally occuring fibrous mineral used extensively from the mid-1940s to the mid-80s. Its versatility and fire resistance meant it was used in over 3000 household and building products, including cement sheeting, roofing tiles and guttering, electrical switchboards, and even things like window putty and vinyl tiles.
Despite its health hazards being well-known, it was in production until 1984 in Australia, phased out during the 80s, but not completely banned until 2003. But banned doesn’t mean banished! If you’re working on a building built before 1990, there’s a good chance it contains asbestos.
If asbestos is disturbed, thousands of tiny fibres are released becoming airborne. Inhalation is the most common, and most dangerous, route of exposure; with fibres becoming embedded in the lungs. This can cause scarring of the lung tissue, leading to asbestosis, lung cancer and mesothelioma – terminal cancer.
A ‘silent killer’, its health effects can take 15 to 40 years to appear. Thousands of Australians have died from or developed an asbestos-related disease as a result of handling the raw material or working with products containing it.
Building materials containing asbestos are ageing or being disturbed and by demolishing, working on or not properly maintaining these materials, the risk of exposure is increased.
You can’t see, smell or taste asbestos. If you’re unsure stop! There is no safe level of asbestos exposure.
This guide for householders and the general public is a handy resource. The Cancer Council also offer a course to help you kNOw asbestos.
Don’t sand it, drill it, touch, or even disturb it.
BE ASBESTOS AWARE and have a safe, happy and healthy Christmas season.
Asbestos – Beware, it’s everywhere!
When I bought my first house back in 2003, I was young, 21 and thought I was bulletproof. Being in the plumbing & construction industry I knew about asbestos but didn’t know the devastating long term effects on the body or know about the handling of the product.
I’d heard scary and horrific stories, but hey, I was 21, and truly believed that a bunch of disturbed particles in the air could not hurt this fit, strong (and clearly naive) young man!!
“How stupid,” I think of myself now looking back. There were multiple occasions where I had cut, screwed through and handled asbestos with the care of a bull in a china shop.
A friend once told me of an occasion, while performing a building task onsite, he came across a buried asbestos fence panel. The only real precaution he took was to water it down (a small preventative measure) and then proceeded to bury it in another location out of the way. Out of sight, out of mind. I’ve seen these, and worse, measures used industry-wide.
The truth is I currently employee 7 plumbers that think similar to my old irresponsible 21-year-old self. No matter how hard we try as educators to make young and old tradies see the light, they blindly march on thinking that it won’t happen to them.
As a plumber, I have seen asbestos in many building products and in multiple locations. From piping systems and stormwater tanks to eaves lining and gas heating flues. It really is everywhere.
Two of my four fences at home are still asbestos. At least two sides are ok! Phew! I say phew mainly because the cost and time to remove this asbestos properly can be staggering.
I usually have two or three friends a year ask me if they can casually remove asbestos on their own. Are they serious?? How do they not know these dangers?? They think that handling asbestos is as harmless as, sorry, handling turds without gloves. Thankfully they asked because it could have been another tragic ending to themselves and the people exposed to the asbestos. The effects can take a very long time to eventually kill.
I have had two close friends pass away from this terrible disease called mesothelioma, and I can’t explain the pain to their friends and family as they watched them slowly deteriorate before finally passing away.
We have to continue the asbestos education for years to come. Asbestos will be around us for thousands of years and it’s everyone’s responsibility to think about it where the potential for exposure exists.
I’d like to see a better government/local council approach in years to come. We can all be part of the solution if we care!
Olly Hurst General Manager WA Assett Plumbing & Gas
STEELTOES & STILETTOS – bringing the risk of asbestos to the big stage
The building industry and community came together in the heart of Northbridge on March 9, 2019, for an evening like no other. Tradies were paired with professional models and strut- their-stuff to help bring awareness to the ongoing risk of asbestos. With the highest rates of mesothelioma in the world and significant amounts of in-situ asbestos in our built environment, asbestos has left a devastating legacy in WA. Raising awareness in the construction industry is crucial, and this landmark event also helped spread the message to the wider community.
Well done to all of the 32 tradies who were brave enough to get out on the catwalk and entertain the crowd. CONGRATULATIONS to our runway winners and runners-up and to our 2019 MODEL TRADIE – MATT ‘BUCKY’ ROGERS.
To everyone who donated to a tradie – thank you! The $28,000 raised by the tradies will be used to reduce the impact of asbestos on our community. WELL DONE TO OUR TOP FUNDRAISING TRADIE, TOM KELLEHER.
Thank you Coconut Grove Bar for allowing us to transform your venue into a runway. Kai V. Ahlefeld & the talented team from Uberraum…amazing! You turned our vision into a reality! Our fantastic MC’s Carole & Russell – your style and showmanship held everything together – thank you for volunteering your time to the cause. Dene Selby and your gorgeous models who you did an amazing job – thank you for volunteering your time and talent for the cause.
To all the amazing back-of-house team of volunteers and everyone who stepped up to help bring it all together…judges, makeup, hair, photographers, greeters and so much more. You know who you are – thank you!!
Follow the event on Facebook (@Steeltoes) and Instagram (steeltoes_stilettos) to see our ‘models’ in action. Don’t miss the lead-up to the 2020 STEELTOES & STILETTOS – you’re not going to want to miss the runway action!
A year in reflection
Thank you to our supporters!
As we look back on the past financial year, prepare audit reports and plan for the year ahead, we would like to say, “THANK YOU!” As a volunteer-run organisation, we rely on your support to carry out the work we do in and for the community.
A quick overview of our past year…
Our support group continues to be an encouragement for people affected by asbestos-related disease, both sufferers and families alike. Whether relaxing over coffee and cake at our monthly morning tea or enjoying a picnic in the park, friendships are made, and bonds formed. Sadly, we have lost some of the group to mesothelioma over the past year, but their memory lives on. We are thankful for the time we had with each of them.
We are excited to be forming a relationship with Solaris Cancer Care who have extended their warm hospitality to our group. Providing support, wellness programs, and many other fantastic resources, we look forward to growing this connection. Our monthly morning teas are held at their beautiful offices in Cottesloe on the first Monday of each month. Contact us to find out more…new members are always welcome!
Fun, fashion and fundraising combined in March with the smashing event – STEELTOES & STILETTOS. This unique event brought the risk of asbestos to the big stage as tradies were sponsored to walk the catwalk with a model on the night.
The Foundation would like to personally thank our major sponsors – ANZ Enviro, ABN Group, Steel Blue, Planet Acoustics & Architecture, Clipsal by Schneider Electric and our community sponsors along with the courageous tradies and everyone who helped make the night such a huge success. This sensational event would not have been possible nor so successful, without so much amazing support!
The $30,000 raised by the tradies will be used to create further awareness of the risks of asbestos to reduce the ongoing impact of asbestos on our community.
We are proud to support some of the world’s leading experts in mesothelioma research. Thanks to our donors, this past year we were able to donate $30,000 to a Post-Doctoral Fellowship through the Cancer Council. Jonathan Chee and his colleagues, in association with Professor Anna Nowak and her team, are researching responses to immunotherapy in mesothelioma sufferers, aspiring to better treatment outcomes.
As this financial year draws to a close, we invite you to make a donation so that we can keep doing this important work. All donations $2 and over are tax deductible and will be used to reduce the impact of asbestos on our community.
One final note from our founder, Barry Knowles…“My prayer is that a cure will be discovered for those who will suffer this horrible disease in years to come. And that young people are made aware to avoid exposure.”
Thank you again for your support.
Jo Morris speaks with 6PR’s Gareth Parker about the inaugural STEELTOES & STILETTOS
An event bringing the risk of asbestos to the big stage, tradies are dobbed in and sponsored to walk the catwalk with a model on the night. Funds raised by tradies will be used to reduce the impact of asbestos on the community.
John Gelavis talks about why he supports Reflections
“As a supporter of the inaugural Steeltoes & Stilettos event to be held in 2019, Master Builders salute the active role that Reflections Through Reality plays in raising awareness of the fatal risk of dealing with asbestos in the building and construction industry. Events such as these will bring the asbestos message to a wider audience and help make young people aware of the terrible outcomes associated with this dangerous substance.”
John Gelavis, Executive Director Master Builders
A message from our Chair
Welcome to the first edition of Reflections’ e-Newsletter, designed to keep our volunteers, supporters and donor community informed about the work Reflections is doing to reduce the impact of asbestos on the community.
Since its inception in 2015, Reflections has continued to make a mark within the Western Australian (WA) and national asbestos awareness and support network, along with supporting the important work being undertaken in medical research into a long-term treatment for the terminal cancer, mesothelioma. With the highest rates of mesothelioma in the world and significant amounts of in situ asbestos in our built environment, asbestos has left a devastating legacy in WA. In line with the current strategic initiatives of the Asbestos Safety and Eradication Agency (ASEA), Reflections is currently focusing its endeavours on increasing the ongoing risks associated with asbestos.
A major milestone for Reflections was reached in 2018, when asbestos awareness training resources began being distributed to, and utilised by, Registered Training Organisations (RTO’s). This initiative was a result of months of investigation and consultation between Joanne Morris and the Construction Training Fund (CTF). At a workshop hosted by the CTF in mid-August 2017 for RTO’s and industry stakeholders, it was unanimously agreed that there was a need to adopt a consistent and relevant approach to asbestos awareness training for pre-apprentices and apprentices entering the construction industry in Western Australia.
An additional outcome of this initiative was the development and production of an animated asbestos awareness training video donated by Cell Media. This informative video has been made freely available as an online resource.
To cap off a year focusing on raising community awareness, Reflections, in partnership with Master Builders and the Housing Industry Association, is currently planning a major fun and fundraising event – STEELTOES & STILETTOS – to be held in March 2019. You can read more about this exciting initiative elsewhere in this newsletter.
On behalf of the Reflections board, I would like to wish each of you a safe and joyous Christmas and we look forward to sharing further developments in 2019.
Bruce Watkins Reflections Chair
NCARD Research Fellowship
Reflections is proud to support the important work being undertaken to improve diagnosis and treatment outcomes for mesothelioma and other asbestos-related diseases.
In 2016, we had the opportunity to contribute $50,000 to fund a research fellow at the National Centre for Asbestos Related Diseases (NCARD), Dr Linda Ye. Dr Le has since completed her Research Fellowship in lung cancer research and is inspired to continue onto a PhD.
Acknowledgement by Professor Anna Nowak, Director NCARD
On behalf of the National Centre for Asbestos Related Diseases (NCARD), I wish to thank you for Reflections Through Reality’s generous research support. As you will read in this report, NCARD celebrated many achievements of staff and students in 2018.
A key aspect of NCARD’s collaborative research future is recognising and developing exceptional, passionate and determined research students. Your support has seen Dr Linda Ye complete her Research Fellowship with us at NCARD in lung cancer research and inspired her to continue onto a PhD. Dr Ye represents the next generation of researchers who will build on our work and develop the breakthroughs of the future.
Thank you once again for your ongoing support and investment in our vision.
Clinical trial preparations
During her lung cancer fellowship, under the primary supervision of Professor Bruce Robinson, Linda worked with the NCARD team to develop, write, and achieve ethics approval of a clinical trial protocol looking to explore the novel therapeutic strategy of neoantigen vaccination, initially in patients with lung cancer, with expansion into mesothelioma planned in the future. This treatment is expected to help one’s own immune system fight the cancer by generating an immune response against an individual’s unique cancer mutations. Ongoing planning and development are underway and the trial will be ready to start recruiting in the near future.
Lung cancer research projects
Additionally, Linda conducted regular lung cancer clinics and undertook two research projects based on molecular testing of lung cancer. These two projects helped to assess the pattern of expression of immunological and molecular markers in the Western Australian lung cancer population, and demonstrated the efficacy and feasibility of a new molecular test to detect a specific mutation seen in lung cancer. These projects were both presented at the Australasian Lung Cancer Conference in 2018, one has been accepted for publication and the other has just been submitted for publication.
Linda enjoyed her time as the NCARD research fellow immensely and the opportunity provided her with invaluable research and clinical experience, made possible by Reflections Through Reality. She hopes to continue lung and mesothelioma related research in the future and is currently planning to pursue a PhD through the neoantigen vaccine project.
Bringing the risk of asbestos to the big stage. Reflections, in partnership with Master Builders, the Housing Industry Association and ANZ Enviro, are pleased to introduce the inaugural Steeltoes & Stilettos event to be held 9 March 2019.
Set to become an iconic annual industry event, ‘tradies’ will be matched with models on a catwalk in the heart of the Perth CBD. Steeltoes & Stilettos focuses on raising awareness of the risks of asbestos in our built environment while raising funds for essential medical research into a treatment for the terminal asbestos-related disease, mesothelioma.
With the highest rates of mesothelioma in the world and significant amounts of in-situ asbestos in our built environment, asbestos has left a devastating legacy in WA. Raising awareness in the construction industry is crucial, and this landmark event will also help spread the message to the wider community.
Perth’s building industry leaders – ambassadors to the event.
“As a supporter of the inaugural Steeltoes & Stilettos event to be held in 2019, Master Builders salute the active role that Reflections Through Reality plays in raising awareness of the fatal risk of dealing with asbestos in the building and construction industry. Events such as these will bring the asbestos message to a wider audience and help make young people aware of the terrible outcomes associated with this dangerous substance.”
John Gelavis, Executive Director Master Builders Association of WA, Reflections Ambassador
“The risk of exposure to asbestos fibres in the built environment is an issue which will need on going attention by everybody involved in the building industry for decades to come.Steeltoes & Stilettos is a great initiative for the industry to support and HIA is proud to partner with Reflections in raising awareness of the impact of asbestos in the community and the much needed funding required to underpin research into finding a cure for the dreaded mesothelioma disease.”
Cath Hart, Executive Director, Housing Industry Association
“There remains an ongoing danger to our tradies and everyone working on sites where materials containing asbestos are present. Too many people have the impression that asbestos is a thing of the past, but that couldn’t be further from the truth.There needs to be greater awareness and education as to the risks involved. Only through ongoing focus in this area will we truly reduce the impact of asbestos-related deaths in our community.”
Dale Alcock, Managing Director ABN Group, Reflections Ambassador
“Steeltoes & stilettos won’t protect you from exposure to asbestos, but this event will help us to increase awareness of the dangers.More importantly, raising funds for researchers to find a cure for asbestos-related disease will help save the lives of those who have contracted a life-threatening illness through exposure to asbestos fibres.”
Michael McLean, Reflections Ambassador
The event and how you can be involved.
Tradies (both male and female) will be ‘dobbed-in’ and sponsored to walk the runway with a model. Fundraising will take place in advance of the event, with the top fundraisers of each category being given opportunity to ‘strut-their-stuff’ on the evening. Fabulous prizes will be awarded.
If you would like to the demonstrate your proactive stance in minimising the impact of asbestos, there are a number of opportunities for you to be part of this exciting event…
Sponsorship through financial contributions – align your brand with this fun event and the important message of asbestos awareness.
Donations of products or services – if your company has a product or service to offer as prizes or gift bag inclusions, we would appreciate your support.
Participation at the event – dob-in and sponsor a tradie AND attend on the night.
Mesothelioma is an asbestos-related terminal cancer with no long-term treatment or cure. On average, one person dies every 12 hours in Australia from Mesothelioma. In Western Australia mesothelioma kills more people than road accidents.
“I am delighted and honoured to be Patron to the Reflections Through Reality Foundation. The dedicated team is supporting the world class research taking place here in Western Australia seeking a cure for mesothelioma. I also applaud their work in increasing awareness of the risks of asbestos in the community along with supporting sufferers of asbestos-related disease. I am proud to be part of the fight to make this cruel disease a thing of our past and not our future.”
“With the average age of exposure for recorded mesothelioma sufferers being 23 years-of-age, I believe we have a responsibility to ensure those entering the construction industry are informed and empowered to make potentially life-saving decisions.”
The Construction Training Fund (CTF) hosted a workshop in mid-August 2017 for Registered Training Organisations (RTOs) and industry stakeholders. Guests included Jo Morris from Reflections, Dale Alcock from the ABN Group and Dr Peter Franklin from UWA. The focus of the workshop was to;
Increase awareness of the ongoing risks of asbestos and the relevance to school students, pre-apprentices and apprentices who are entering the construction industry.
Discuss with workshop participants the idea of creating a set of standardised resources that can be used by RTOs to deliver asbestos awareness training.
The workshop was the result of months of investigation and consultation by Jo Morris, Reflections’ Operations Manager. Having a son entering a pre-apprenticeship, Jo was interested in what, if any, asbestos awareness training was being taught to the younger generations.
During the workshop, it was highlighted that three in four tradies find it difficult to identify asbestos and new apprentices were not receiving a consistent, relevant education about the risks of asbestos in the workplace. Although asbestos materials were banned in Australia in 2003, with the large amounts of in-situ asbestos, our tradies and DIY’ers are now at most risk of contracting an asbestos-related disease.
A Curtin University survey of 240 carpenters, painters, plumbers and electricians indicated only small numbers had received training related to asbestos. For example, only 17 per cent of electricians had received any training and 38 per cent reported that they would find it difficult to identify asbestos. Electricians and plumbers are most at risk of exposure to asbestos.
Builder Dale Alcock, whose father died from mesothelioma, said a ban on asbestos products in Australia had created a false comfort that the building industry lacks asbestos. “But that couldn’t be further from the truth,” he said. “We’d like to see a contemporary training module that talks about assessment, identification and correct handling of asbestos.”
Dr Peter Franklin, a senior research fellow in Population and Public Health at the University of WA said asbestos remained abundant in WA. “Asbestos is not going to go away in our lifetime at least, because there is just so much of it,” said Dr Franklin, who spoke at the workshop.
“With the average age of exposure for recorded mesothelioma sufferers being 23 years-of-age, I believe we have a responsibility to ensure those entering the construction industry are informed and empowered to make potentially life-saving decisions,” says Ms Morris.
“With WA’s history of asbestos and the fact that we have the highest rates of asbestos-related disease in the world, there is an opportunity for WA to lead by example. Unlike in the past, we are now in the privileged position of knowing about the dangers of asbestos and have the opportunity to potentially reduce the risk of exposure for our future tradies.
The workshop highlighted the industry’s keenness to adopt a consistent approach to training in asbestos awareness in Western Australia (WA).
In the longer term, the industry would like to see training embedded into the White Card which would ensure all workers would receive the basic asbestos awareness training prior to entering a worksite.
Since the workshop, Jo Morris has worked with the Construction Training Fund and other industry stakeholders to assist CELL media in producing an animated asbestos awareness training video which they donated free of charge after hearing about the workshop.
The CTF was provided with a set of asbestos awareness training resources from the Asbestos Free Tasmania Foundation. The CTF tailored the resources to meet WA’s needs and has offered them to RTOs who deliver construction qualifications to school students, pre-apprentices and apprentices.
Let’s continue to work together in providing education in the most effective way.
Meso Warriors run for a reason through the streets of Perth…
Running or walking to honour loved ones affected by mesothelioma & raise much needed funds for medical research…
This year’s HBF Run for a Reason attracted over 35,000 participants, all running or walking for a reason. The Reflections team – Meso Warriors – was well represented with over 50 members and supporters. Many of us had very personal reasons to take part as we did so to honour loved ones affected by asbestos-related disease, specifically mesothelioma. We were very conspicuous in our blue bling – tiaras, tutus, wigs, special effect makeup and other over-the-top blue bling ensured that the Meso Warriors stood out amongst the masses.
Assembling early morning in the streets of Perth City, the sky was an ominous grey. Fortunately, the rain held off for the most part, as we traversed our way to Gloucester Park. It was an amazing and very entertaining walk, jog or run. It is not often that pedestrians have access to major roads such as Riverside Drive, the Freeway or the “Polly Pipe”. Complimenting this surreal experience were the views of our beautiful city and the Swan River. Many participants were happy to provide on-the-road entertainment with their costumes and antics. The Star Wars Stormtroopers were especially entertaining – not what you normally see on the streets of Perth. There was plenty of entertainment on the side of the road too. Bands, dancers, jugglers and superheroes all created a fun atmosphere.
Most us did the shorter, 4 km, scenic stroll while a few of our more intrepid members chose to do the longer 12 km run via the freeway and the new stadium. We even had one brave and eager soul complete the half marathon. A fabulous effort by all!
Last year we sadly lost a member of our team, Peter Rafferty, to his battle with mesothelioma. We previously participated in HBF Run for a Reason to try and raise funds to help others battling the illness and it was important to us to continue to support Peter’s family as well. He was a much loved member of our team and is still sorely missed.
Professionals Stirling Clark
After losing my beautiful Aunty to mesothelioma last year, another beautiful Aunty has recently been diagnosed with the disease. I fear that we may be only just starting to see the top of a very big, terrible iceberg…who knows how many of us may be grateful for the benefits of this research one day.
My dad was the founder of Reflections and I am honoured to carry on his legacy. He would have been humbled and proud of the Meso Warriors today.
Everyone had a great morning while, at the same time, raising of over $6,000 to contribute to the work being undertaken by Reflections. Many of us are already looking forward to the 2019 Run for a Reason and we would love to have you join us.
Asbestosis…the thought of not getting enough breath was possibly the most terrifying thing I could think of.
Asbestosis is the more commonly known name for asbestos-related disease and yet, as it is not a terminal cancer like mesothelioma, it doesn’t get the same focus. We would like to introduce you to Geoff, a valued member of our support community.
A few years ago, I found myself inexplicably short of breath. I couldn’t walk more than 100 metres without struggling for breath and I had no energy or strength.
Although now retired, my work life had included a five-year apprenticeship at the Midland Railway Workshops back in the 50’s. The locomotives that we worked on had asbestos lagging (refer image). Having had friends succumb to asbestos-related disease through similar exposure, I had been having X-rays and annual checks with for the past 8 years or so. Although these had revealed spots on my lungs, the spots were not moving or growing so I had no cause for concern. I got on with life as through it were a non-event. At that time, I knew very little about asbestos disease not realising that there were two main types one more serious than the other. *(refer note below)
In 2015 I went back for a check-up and was told the spots in mu lungs were moving. This led to a diagnosis of asbestosis. My immediate reaction was sheer bloody terror and to think the worst. I wasn’t comprehending information as, I suppose like many others in similar situations, the thought of not getting enough breath was possibly the most terrifying thing I could think of. At the time, I belonged to a self-help group that had not only helped me through a past crisis but was a major influence on how I live my life. But I felt I needed connection with people that might know more about my current situation and who could help me get clarity. This search led me to the Reflections Through Reality support group. Their friendship and concern has been fantastic and, although my condition is not nearly as serious as others in the group, I find their courage, optimism and positive outlook an inspiration. Some of the things I have gained through this group is gratitude, friendship and admiration for those who are vastly more effected than me. Without the group’s support I imagine I would feel confused and alone. I am truly thankfully I contacted them.
By Geoff Becker
* 1. Asbestosis, inflammation and scarring of the lungs 2. Mesothelioma, a terminal cancer – both resulting from asbestos exposure.
My world came crashing down. Travel plans were shattered, and a 5-month chemo regimen commenced immediately.
For the last 4 years we had been planning a 12-month tour around the world. By October 2017, we had made most of our plans and bookings. It was around that time I noticed a small, hard bump on my chest.
Thinking it was a sport injury from playing hockey on the weekend, I went down to my GP to get it checked out. My GP referred me for a ultrasound. The radiologist did the ultrasound, and said “uh oh” and immediately suggested an x-ray. After the x-ray, he said “I think you had better have a biopsy done”. This was done immediately, followed with a PET scan the next day. After a long wait over the weekend, I finally saw my GP to review the results. “Have you been exposed to asbestos?”, he said.
Indeed I had. So had my mother, who died from mesothelioma in 2005. My world came crashing down. Travel plans were shattered to pieces and a 5-month chemotherapy regimen commenced immediately. My GP got me on to a clinical trial as well. It has now been 6 months since I was diagnosed. I was 56 years old. Although my pleural mesothelioma was relatively advanced, I tolerated chemo very well and achieved moderate shrinkage. I continue on the clinical trial and hope that it keeps the meso at bay for a while.
My wife, Paige, has been my rock throughout this ordeal. Sometimes I think of just packing it all in, but Paige has kept me strong, focused and positive. I know being positive is the key to coping with this disease. It is difficult and I struggle at times, but Paige is always there to prod me in the right direction. We have started to pick up the travel pieces we had planned and are looking forward to filling our lives with family, adventure and each other.
You can read more about my meso journey in my blog.
Reflections’ donation used to fund Research Fellow
Message from Professor Dawn Freshwater, Vice Chancellor, The University of Western Australia…
“Thank you for your continuing support of The University of Western Australia and the National Centre for Asbestos Related Diseases (NCARD).
As you are aware, research is the key to finding the answers to our questions about mesothelioma and asbestos related diseases. Your support of this research and the team at NCARD is instrumental in bringing us one step closer to finding the answers to those questions, and hopefully, one day a cure.
We are proud of our association with Reflections through Reality; your work in the community in supporting patients through treatment, and raising awareness about mesothelioma and asbestos related diseases is truly commendable.
Once again, thank you for your support, encouragement and belief in our students, researchers and our institution – you truly are making a difference.”
Support for the Rafferty family in their desperate time of need
Helena Valley resident, Peter Rafferty, was given just nine months to live when he was diagnosed with the terminal disease mesothelioma in December 2015.
At 45 years of age, Peter was carrying on a happy, busy life with his wife Bec, their three sons (17, 16, 10) and foster child (3) blissfully unaware of the journey that lay ahead. Life had been full of promise as Peter and Bec planned for the future. Passionate about caring for children whose family lives are not ideal, they had fostered seven children to this point and would often find themselves with up to eight people living in their small, 3 bedroom, 1 bathroom home in Helena Valley. Having done life tough as a youngster, Peter was determined to provide a stable, happy environment.
With this in mind, Peter and Bec began an owner- builder project in 2015 to increase their living area and the number of bedrooms. As a real estate agent, Peter had flexibility to work around his family and life commitments as he undertook this major project. However, life took a tragic turn when the couple received the devastating news that Peter had mesothelioma – a terminal asbestos-related cancer.
The couple were in shock as they weren’t aware at the time, of the dangers of asbestos.
Since his diagnosis, Peter has got progressively unwell and things are now looking grim. Constantly in pain, Peter has been unable to work to earn an income and his ability to continue work on their dream home has been limited.
Despite the hardships, by October 2015 the renovations were well underway with the concrete slab laid, the framework and roof up and the walls ready to be clad. Approaching the bank for finance to purchase the required materials, they were advised that, due to Peter’s lack of income and the slump in the housing market, they would be unable to re-finance until the addition was at “lock-up”.
But Peter and Bec were not entirely alone in their journey.
During 2016 the couple became connected with a support group for mesothelioma sufferers and their families through the Reflections Through Reality Foundation. The foundation’s Operations Manager, Jo Morris, approached Michael Mclean, Executive Director of Master Builders and Ambassador to the Foundation, and explained the Rafferty family’s situation.
Without hesitation Master Builders, along with its President Rob Spadaccini from Spadaccini Homes, offered their support. Suppliers and trades are coming forward to provide what they can toward the project but WE URGENTLY NEED CASH to help cover unavoidable overheads. Some of the materials and trades will require funding and we urge you to help if you are in a position to do so.
Reflections Through Reality founder Barry Knowles – A Living Legacy
Barry Knowles, founder and inspiration behind Reflections Through Reality passed away on 23rd December 2016 after a nearly seven year battle with mesothelioma. His family were with him in his finally hours and will greatly mourn his loss.
Barry’s legacy lives on, not only in the hearts and memories of those who knew and loved him, but through this Foundation. Barry was passionate about finding a cure for the insidious disease that plagued him and supporting fellow sufferers.
It was Barry’s wish that, in lieu of flowers, donations be made to the cause in memory of him. If you would like to honor Barry in this way, please click here. Donations are tax deductible and 100% will be given to medical research.
We would like to thank you for your support.
Miracle man is racing time – The Weekend West October 2016
Barry Knowles is in a race against time, hoping researchers can unlock the secret behind his amazing battle against mesothelioma.
The 72-year-old has been dubbed a miracle man for the past six years, incredibly surviving the deadly asbestos disease without medical intervention.
Researchers have been trying to work out how his immune system has kept the disease at bay, in the hope they can replicate its effect in a vaccine that stimulates an attack on the cancer… Read full article
Mesothelioma ‘miracle man’ Barry Knowles determined to help find a cure
The first step towards finding a vaccine began today when Mr Knowles handed lead researcher Professor Bruce Robinson a cheque for $50,000 from the Reflections Through Reality Foundation.
Until recently, the retired builder who lives in Helena Valley stunned the medical world by surviving the disease without medical intervention…. Read full article
Family and friends were present to support Barry at the Rotary Perth luncheon.
Rotary Club of Perth donates to Reflections in memory of Tony Gardner
Thank you to Rotary Club of Perth for your generous donation in memory of Tony Gardner, friend and fellow Rotarian, who succumbed to mesothelioma last month.
Rotary Club of Esperance dinner aids fight against cancer
The Rotary Club of Esperance recently hosted the Reflections Through Reality Foundation.
They met with locals and Rotarians, sharing their journey while increasing awareness of the dangers of asbestos in our communities and the need to find a cure for the diseases it causes. The week culminated in a magical evening function at Stonehenge at which 190 people attended.
Professor Lyn Beazley Patron of the Reflections Through Reality Foundation
“I am honoured to be Patron of the Reflections Through Reality Foundation. The dedicated team is supporting the world class research taking place here in Western Australia to find a cure for mesothelioma. I am proud to be part of the fight to make this cruel disease a thing of our past and not our future.”
We are proud to announce Professor Lyn Beazley as Patron of the Reflections Through Reality Foundation.
After graduating from Oxford and Edinburgh Universities, Lyn built an internationally renowned research team in Neuroscience that focused on recovery from brain damage. Currently, she is the Sir Walter Murdoch Professor of Science at Murdoch University.
As Chief Scientist of Western Australia from 2006 to 2013, Lyn advised the WA Government on science, innovation and technology as well as fulfilling the role of science ambassador, locally and worldwide.
In 2009, Lyn was awarded Officer of the Order of Australia and was elected a Fellow of the Australian Academy of Technological Sciences and Engineering.
More recently, Lyn was inducted into the inaugural Western Australian Women’s Hall of Fame and, in 2012, became the second recipient of the Governor’s Award for Giving, in recognition of her enthusiastic philanthropy through her outreach activities promoting Science, Technology, Engineering and Mathematics in the WA community. Lyn is an Ambassador for the West Australian Museum and serves on the Foundation Council of the Art Gallery of Western Australia.
In 2013, Lyn was honoured to be inducted into the WA Science Hall of Fame and was amazed and delighted to be named the WA Australian of the Year for 2015.
It is a privilege to have Professor Beazley’s support and endorsement as we work together to raise awareness and funds in the fight against mesothelioma.
Mesothelioma survivor Barry Knowles, raising funds for a cure
Barry Knowles had planned his own funeral and paid for his burial plot… but has survived and is determined to make a difference.
Barry Knowles is a medical phenomenon that even doctors can’t explain
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The retired builder has set up the Reflections Through Reality Foundation, to raise funds for the Harry Perkins Institute of Medical Research.
The foundation is being launched today by WA Governor Kerry Sanderson at a lunch hosted by the Rotary Club of Perth, which is a partner on the project.