My name is Ben and in 2012, aged 31, I was diagnosed with a brain tumour.
I noticed late in 2011 a type of speech aphasia or absence that was occurring during meetings and presentations in my workplace. These seizures (as I now know them) became more conspicuous and I was referred to a neurologist to look into the issue. The results of my first MRI scan in January 2012 revealed a large mass that would need urgent treatment.
What followed was a whirlwind of grief, loss, change and acceptance for my partner, my family and me.
I underwent two surgeries within three weeks between late February and mid-March 2012 - my first ever visit to hospital. The second surgery was performed while I was awake to allow my neurosurgeon to ask questions as he removed tumour tissue. I still remember much of this most unusual experience! I remember my recovery following surgery as slow: a whirlwind of medication, check ups and a slow return to life as I knew it, only now with a new identity as a cancer survivor.
Many things and many wonderful kind people helped me along this journey. I remember one surprising, inspiring moment in particular when I read with new eyes Michael Leunig’s wise little poem about grief and loss:
Let it go; Let it out; Let it all unravel.
Let it free; and it can be; a path on which to travel.
As music director of a youth chorus in Melbourne, I’d taught Suzann Frisk’s moving choral setting of this text only a year before diagnosis. The night before I was first admitted to hospital, my family and I turned over our calendar to March to plan out meals and medical appointments for the following month. We were stunned to find the original Let it Go poem with Leunig’s accompanying image of a man walking along a pathway that emerges from inside his own head! I took this as a sign to truly make this cancer journey my own and to float on the river rather than fight the current. It was a lesson to live fully, however long or short my journey may be.
Leading the youth chorus and singing with an adult choir was crucial to my recovery from these first two surgeries. Since then, I have let a range of things fall away as I pursue my passions in music, education and language. I know my true calling lies in roles where I can lead choral groups and explore community leadership and empowerment through singing. I am now completing a PhD in music and wellbeing. I believe I am further along the path of my true vocation than would have been the case without a cancer diagnosis. This journey has taken me to Germany for three months to research and write about community choral singing there. When the moment feels right, I still teach Let it Go and share my story with choirs I work with. It is a powerful unifier to sing this together, and I find it personally cathartic.
My cancer diagnosis is felt most by those closest to me, and I feel it is sometimes even harder for immediate family and partners than for the patient. The experiences of surgery and recovery have brought my family and partner (the centre of my family) much closer together and deepened and strengthened our relationships with one another. It even brought our extended families together for a public commitment ceremony and party early in 2015.
My diagnosis sharpened my view of the things that matter and taught me to live life fully and with equanimity. With the help of family and close friends I had confronted and found peace in my mortality.
Through meditation and reflection I learned to accept and embrace my finite “moment” on this planet.
In October 2014, after my 18th MRI scan (and the same day as leading an open choir rehearsal for patients at the Olivia Newton-John Cancer Centre), I learned my tumour had recurred. I undertook further awake surgery in late-November and radiotherapy in February and March 2015. The signs are positive; I recovered from my surgery fully and am now allowing my body to heal from the radiotherapy, with few noticeable side effects.
This recurrence brought with it another cycle of grief as I made hard decisions to put my health first: most painfully my resignation from a wonderful choral organisation that had taught me so much. Looking back now I am grateful for the multitude of other opportunities that have opened up since.
I realise I am more fortunate than most and feel I have a responsibility to advocate publicly for greater awareness of and adequate funding and support for people living with brain tumours.
For me, a cancer diagnosis is not really a battle. I understand why other patients describe it this way and the pressure to do so. Sometimes this comes from cancer charities and research organisations that rely on a “ready for battle” footing to raise scarce funds. Yet cancer is a part of my life. It’s really more a journey with cancer rather than a battle against it. Instead of waging war, I choose to channel my finite energy into living well, into maintaining good physical, spiritual and mental health, and into my relationships, my family and my communities.
Looking back, my cancer diagnosis is like the point of a compass or protractor in my life: stories and events are plotted at various points around it and concentric circles (or ripples) reveal its impact in both positive and negative ways.
I have learned to live for every moment, to use my gifts to their fullest and in ways that improve the lives and experiences of those around me. I look back on my time after diagnosis with very few regrets. I’m grateful for every day I have in this place and believe I have many more before me.
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