A story that will help others To have hope

A Liv On story from Ian

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After a 30 year career and ten years of university, our children were all grown up, life was settled and I was starting to feel like I had reached a reasonable level of competence. My job (and life) was challenging, diverse and interesting an involved much complex problem solving and dealing with and defusing highly emotionally charged situations.

In January 2015 my world was turned on its head, or more accurately fell flat on its face, when I suffered a major seizure and collapsed face first onto a concrete floor. After a quick ride in an ambulance to Royal Melbourne Hospital where my partner Jane joined me after rushing back from the country we began a long and fraught night of waiting and wondering, the first of many. Our contemplations were interrupted by a young intern who stuck his head through the curtain and asked “are you the man with the brain tumour”? Followed shortly by a colleague who put scans up on the screen in the booth showing what looked like a small apple in my brain. So apparently I was that person! Having done Neuroscience and psychology I thought I knew what was coming, how naive was I! Fast forward through an awake craniotomy performed by the amazing Kate Drummond, all the immediate post op horrors and the wait for pathology results, and I was introduced to the (not so) wonderful world of gliomas (brain cancers). My particular variety was (is) an Oligodendroglioma, try saying that with half your face paralysed. I also discovered that I was lucky that mine was low grade, still incurable but unlike many I at least had been blessed with the gift of time, not really sure how much though.

With my agreement my care was soon transferred to the Austin Hospital’s Olivia Newton John Cancer and Wellness Centre, which happens to be very close to home, another great stroke of fortune. I expected some of the physical and cognitive side effects which through a great deal of rehabilitation, particularly through the Royal Talbot Rehabilitation Hospital, were at least partially overcome over the course of 2015. I hadn’t expected the months of chemo and radiotherapy at the same time. Even more unexpected was the complete lack of emotional control that I experienced for much of the time, this was a major shock to me and those closest to me because this had been one of my greatest strengths beforehand, dealing with others emotionality with skill and empathy, now both had disappeared. I felt like a professional athlete who had lost a limb. Being surrounded by fellow travellers, skilled and caring staff and the wonderful facilities of the ONJ Centre meant I could start discovering who the “new me” was and even learning to like him just a little. It certainly gave me (and Jane) much needed network of support in this strange new world. You soon discover that it’s really only people who have been or are going through a similar situation that can give you the right kind of support at the right time, whether it’s a shoulder to lean or cry on or some tough love.

Through the ONJ Centre I benefitted from an array of programs such as yoga, mindfulness, singing and in my/our case the most important of all, the Brain Cancer Support Group and the Carers Support Group, which is really a group of caring and compassionate peers who know better than anyone what you’re going through. From the bone crushing fatigue to the nausea of chemo, from the inexplicable spontaneous tears to the financial and legal fears, they get it. If the ONJ centre had not brought us into the sphere of these wonderful people, programs and facilitator I hate to think what kind of state I’d be in now or where our relationship would be. While my recovery will never be complete it’s come so much further than I would have believed possible thanks to this amazing place and the superheroes that reside in it. It now feels like a second home and in my moments of despair and anxiety or physical challenges it’s my sanctuary to just sit and calm down. It’s not unusual for me to make special trip there even when I have no medical appointments, just so I can sit and listen to the water running through the garden or read a book. This place is a priceless lifeline to so many of us.

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