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
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
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
Asbestosis – My Story
…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.