My Journey
Let’s start from the very beginning…
It’s hard to say what came first. The love of challenges, or the challenges themselves.
Mine was a harsh, brutal, and sometimes abusive upbringing on a family dairy farm in the Adelaide Hills, within a cloistered German Lutheran community.
At 5, I started school knowing the precise workings of the farm, could play cricket with a perfectly straight bat, but couldn’t write my name. Fast forward 10 years and I was rejected by my father for not wanting to work the farm but my career as a cricketer was taking off. I decided to focus on getting the high grades required to become a PE teacher. Thankfully, I excelled.
Aged 21, I was appointed by the Australian Cricket Board to coordinate the new national Kanga Cricket program in SA. After two years the position was transferred to the South Australian Cricket Association (SACA). It was my dream job. But by 25 I’d managed to burn myself out – on and off the pitch. I lost confidence (and capacity) in every arena.
The potential for reinvention.
Whilst playing cricket in Yorkshire (Ilkley), I was exposed to some young professionals with lifestyles I admired. My interest in matters of business piqued. I returned home motivated and resolved to payback those who’d shown faith in my cricketing ability.
Slowly my cricketing performances improved. I became a leading batsman at A-grade District level, winning club batting awards (including a club record for the most runs in a season). I didn’t achieve my goal of playing for the state at first class level but, and perhaps more importantly, I showed respect for the talents I’d been given. I realised how beneficial it can be to identify your strengths.
I found a way of inserting myself into the world of business, studying business management, and at 26 I tried my hand at property development. This meant borrowing at a very prickly 21%. I managed to break even, and it was an important lesson in coping with intense financial stress.
After a falling out between my father and brother threatened the family farm, I found myself running it while still working for SACA. I joined forces with my sister and with her input (she was a vet) we turned the farm business into an efficient and profitable enterprise.
Most importantly, I fell deeply in love. And the woman I fell in love with became my wife, and still is.
Eventually I left that comfortable role at SACA to work full-time on the farm, focussing on a venture to develop an organic line of dairy products with on-farm agritourism. My father, however, backed out of a succession planning process.
It was time to pivot again. Thankfully, I’d become involved with a local Landcare group and when a job as a Landcare Officer with Primary Industries SA came up, I successfully applied.
The next 25 years gave my wife and me an unrivalled level of fulfilment and joy.
A sudden change.
Then at 47, without any symptoms, I received a diagnosis for Mantle Cell Lymphoma (a rare B-cell blood cancer). The trajectory of our lives took a dramatic and completely unexpected turn.
I underwent an Autologous Stem Cell Transplant (my own cells) at the Royal Adelaide Hospital. Five weeks after the procedure I returned to my pre-transplant life, and it was almost like nothing had happened.
Then, three years later, six months after my wife and I had established a psychological consulting practice, and only three months after completing the Cycling for Culture event to raise funds for the Kaurna language program, I relapsed.
I underwent a second transplant, this time an Allogeneic Stem Cell Transplant at the Royal Adelaide Hospital (using my sister’s cells).
The transplant, a high-risk procedure, was without incident. I was discharged 15 days later. At home, my recovery was rapid. By day 70 I was back at the gym, riding my bike and planning a return to work. I didn’t feel the term survivorship had any relevance to me, but when my post-transplant trajectory shifted so did my viewpoint.
A turning point for the worse.
The next five years were riddled with serious health concerns. Seven months after reporting the onset of serious gastrointestinal symptoms (vomiting, diarrhoea, weight loss, etc) I was admitted to the RAH and diagnosed with a Cytomegalovirus (CMV) and Graft versus Host Disease (GVHD) induced ulcerative colitis.
By the time I was hospitalised I had lost over 20 kgs in body weight. Whilst in care I suffered a serious leg infection for which amputation was an option under consideration. It took three months in hospital, and three months recovering at home, before I could return to some normal activities.
12 months later a GVHD scleroderma (skin) condition developed over most of my body. It caused loss of skin pigmentation on my face as well as widespread non-healing skin ulcers.
Then things got worse still.
Shortly after the onset of the skin condition, I began to experience intense muscle pain in my calves and neck. Over the next 12 months the pain expanded and worsened. Eventually, I would lose nearly 75% in body strength due to an undiagnosed GVHD induced muscle myositis (inflammatory) condition. I suffered severe muscle atrophy and damage and became confined to a wheelchair, requiring assistance with dressing, showering and personal care.
After demanding the RAH Haematology Consultant refer me to the Peter MacCallum Cancer Centre (PMCC) in Melbourne to receive Extracorporeal Photopheresis -ECP (a proven treatment for GVHD of the skin) the skins ulcers which had been a constant for the previous three years completely healed – in just three weeks of treatment!
Unfortunately, the onset of COVID prevented me from returning to Melbourne after the initial two-month block to gain the full benefits. Instead, I spent a month in the RAH receiving high dose steroid treatment (under the supervision of a Rheumatology Consultant) and then a month at Hampstead Centre to start rehabilitation.
After nearly six months away, I returned home barely recognisable to my family. The intensifying physical and psychological load on my wife, for much of the previous seven years, finally took its toll.
We hit rock bottom and were considering desperate measures to end the misery.
Knowledge is Power.
Then, rather than wallow, we decided to act. I knew the benefits of exercise from my sporting career and my studies. I pushed myself to get to the Centre for Physical Activity in Ageing (CPAA) at Hampstead Centre every week. Slowly but surely enough strength returned. I could mostly cease using the wheelchair and instead got around on a walker.
I also poured back over my ‘survivorship journey’ notes and learned everything I could about GVHD (via medical journals and professionals). I formed the view that the medical responses we received at the RAH were inadequate.
I contacted Connie Bonaros MLC who was chairing an SA Parliamentary Select Committee into the future of health care in South Australia. My wife and I appeared before the committee, so we could bring the issues that we’d experienced to light.
The Central Adelaide Local Health Network (CALHN) also undertook a review into the Stem Cell Transplant Service and our experience. The review identified significant shortcomings in our pre- and post-transplant care. Unfortunately, our attempts to seek accountability from SA Health have so far been futile.
In positive news, we have received outstanding support from Cancer Voices SA (CVSA) and the Leukaemia Foundation. I have undertaken survivor advocacy work for both these organisations, as well as The Hospital Research Foundation.
I’m now a passionate advocate for improved medical and psycho-social support for survivors who often emerge from intense treatments feeling incomplete and shadows of their former selves.
Still not out.
I’m a devoted husband (my wife and I have now shared three decades of eventful life together); father to one (a son whose maturity, capacity to learn, and willingness to take responsibility put me to shame); and Banjo’s biggest fan. Banjo is our dog – a small Havanese who announces your arrival with gusto but secretly enjoys the added company.
When I’m not working, I like to fill my spare time tracing family history and writing.
If I can weather the changes, so can you. Why not get in touch to find out how?
Let's have a chat
