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Tag: diagnosis

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

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.

Natika

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.

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

NCARD Research Fellowship

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.

Future plans

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.

Download the full report here

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.

Donations can be made via this link and all donations over $2 are tax deductible.
Thank you for being part of this exciting project.

Rafferty Family Project – Bec and her boys (centre), Peter with their youngest son (bottom right)