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  • Paige’s Reflection

    April 2020

    This sort of thing wasn’t in our plan. I was completely unaware of Rod’s asbestos exposure as a teenager, working at home on projects with his Dad.

    I came across Reflections when my husband Rod was diagnosed with mesothelioma in 2017. We already knew about this disease and its origins in asbestos because Rod’s mother also had mesothelioma, passing away from it in 2005. What we didn’t know was how to cope with this sort of devastating news in our early 50’s. This sort of thing wasn’t in our plan. I was completely unaware of Rod’s asbestos exposure as a teenager working at home on projects with his Dad.

    Anyone going through this knows it’s a rollercoaster of emotions and it can be very hard to get through those early days without support. I am lucky to have wonderful friends and family that rallied around us, but there is something very different about the support that comes from others that have been through it or are going through it themselves, and that’s how I found Reflections and heard about the monthly support group meetings. I quickly became involved in the group meetings and, after some time, Rod joined in too. I think he saw the benefit that it gave me, where I could go along and talk about anything and everything to do with mesothelioma, and everyone knew exactly what I meant and how it felt.

    In those days, the morning teas were quite informal and usually held in Norma and John’s comfy living room as Norma had been the glue in the group keeping members connected. Sadly, Norma lost her fight with mesothelioma late in 2018 and she is dearly missed.

    Since then, I have helped coordinate the group, keeping everyone updated and continuing the monthly morning teas. To provide added value, in 2019 Reflections began a joint arrangement with Solaris Cancer Care to hold our meetings in their beautiful Wanslea House in Cottesloe. Through this partnership, our members have access to resources offered by Solaris. Usually held on the first Monday of each month, our morning teas are open to existing and new group members and are informal and welcoming either inside or outside depending on the weather. We also have a private Facebook group where our members can feel free to come in and post or comment about anything they wish.

    Now, in the days of COVID 19 and social distancing, we have suspended the monthly face-to-face meetings but are keeping everyone connected online. It can be a really lonely time as everyone stays at home, so we started up ‘Meso Mondays’ which is a live video call so that everyone can chat and keep in touch. Sometimes we vary this by providing a live webinar link on a relevant topic, such as looking after our mental health while isolating, provided by the Lung Foundation. Other times, we invite special guests to join our live video chat to answer questions anyone may have. This week we were joined by Professor Anna Nowak, a Medical Oncologist and Director of the National Research Centre for Asbestos Related Diseases (NCARD). It was a fantastic session with Prof Nowak sharing lots of useful information from the safety of patients going into hospital for scans or treatment to upcoming clinical trials.

    I hope more people join in, particularly anyone with mesothelioma who might be feeling stressed or alone or anyone who is supporting a family member. We are also happy to have suggestions on who to invite or topics of interest for Meso Mondays. If you would like to know more or connect in, you can contact us through the webpage or find us through the Reflections Facebook page.

    Stay safe everyone.

    Paige Standen-Burrows
    Reflections Support Network Facilitator