As Australia’s very first Brain Cancer Support Worker, Jonathan Muller is delivering a unique and incredibly important service to families in the Geelong region.
Employed through Peace of Mind Foundation, Jonathan meets with brain cancer patients and their loved ones in their homes and builds up the sorts of relationships that mean he can provide support that it is tailored to each person.
“The goal is to deliver support with the knowledge and experience of a health professional but with the approach of a friendly neighbour acting as an ally to patients and their families,” Jonathan says.
“Every person and household is different when engaged. Giving guidance to understand the implications of a life limiting diagnosis, mapping out areas in life which may need attention, enabling people to engage with all the moving parts that make up a life. This ranges across family and social interactions, personal identity, meaning making and values, medical, financial, legal aspects and the plain daily activities of life. I can be mowing someone’s lawn, completing an Advanced Care Plan, being present in a crisis, celebrating a sweet life moment and attending a funeral,” Jonathan says.
As a former palliative care nurse, Jonathan is also able to talk with patients who face a terminal diagnosis about their fears and preferences around dying, working in step with palliative services when required.
Families who have been supported by Jonathan speak with gratitude for his services:
- “Having a Brain Cancer Support Worker working alongside us has definitely assisted us in making our decisions, gaining a greater knowledge of the system and knowing how to navigate it. I’m sure we would be floundering in some areas of life if not for our worker.”
| “We were so lucky to have the Brain Cancer Support Worker visit us in our own home. From the first meeting it was explained to us what to expect in the coming months and any questions we asked, were answered as honestly as possible.” |
| “It most definitely does make you feel supported by having the Brain Cancer Support Worker at your beck and call when needed. Even in our darkest times, it was reassuring to know that he would be able to help us with whatever we needed.” “Reassurance from someone who knows what he is talking about and is prepared to follow up if needed.” |
Ben and Gail Dunstan share their story of getting to know and being supported by Jonathan.
“We first met Jonathan early in 2021, through Peace of Mind, after Ben had gone through surgery. Our first impression of Jonathan was instant appreciation for his knowledge, empathy and compassion he had and we felt so comfortable talking to him about every aspect of Ben’s condition and treatment. Jonathan was able to give us a rough guide of what we were to expect in the coming months. If Ben needs anything or wants to know something, he knows he will get a response from Jonathan. He has given us instant attention and was able to solve the queries immediately. Our son was even able to contact Jonathan to talk about Ben’s condition and he was able to put him at ease with everything going on. In the last couple of weeks we have had to draw on Jonathan’s invaluable resources once again and he has been able to organise aids at home, allied health visits and also helped to organise a Palliative Care respite stay for Ben at Grace McKellar. Jonathan is truly a very special person and an expert in his field of nursing and we feel very lucky to have him help us through this life changing experience.”
Jonathan has broad life experience, having travelled widely and worked in fields including construction, gardening, book-selling and engineering. He has also pursued interests and training in Buddhist studies, Spiritual care, Creative Arts Therapy and Family Constellations.
“What I am trying to teach myself and model, is that the human lived experience includes massive chunks of uncertainty, confusion and suffering, alongside certainty, clarity and joy. The willingness to welcome the experience of people I serve and also in my personal life seem to go hand in hand,” Jonathan says.
Peace of Mind Foundation is a nationwide, not-for-profit organisation, providing ‘here and now’ support to brain cancer patients and their families across Australia. Jonathan’s role of Brain Cancer Support Worker is made possible with funding from Geelong Hospice Foundation. Peace of Mind Foundation is currently fundraising to employ another Brain Cancer Support Worker, to enable support for more families affected by brain cancer. Donations are welcome.
Challenge Brain Cancer ambassador Emily Cooke and her support worker Jonathan Muller. (photos by Ivan Kemp) Story Emma Holmes.
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