In 2007, when I was 33 years old, my world was torn apart when I was diagnosed with a grade 4 glioblastoma multiforme. Super aggressive and super deadly.
At the time, my two sons Joe and Willie were aged 4 and 18 months.
This was a curve ball my husband Oscar and I could never have foreseen, but looking back things had not been well with me for some time.
My symptoms were so insidious they just crept up on us. It started with anxiety, not being able to sleep, loss of appetite and general confusion. Friends saw me doing strange things like putting paper plates in the dishwasher. I would get lost driving from place to place and would 'lose time'. All were dismissed as absent mindedness. My boss thought i might have post-natal depression. I remember telling my GP, I felt I was going mad.
Physically I had headaches that were getting progressively worse and was becoming unbalanced on stairs.
I was booked in for a CT scan, but in the days leading up to the appointment things went downhill rapidly. I was checked in overnight and given a CT scan which showed, in the words of the treating doctor, 'a tumour, a sizeable tumour'.
What came next was a conveyer belt of appointments with registrars, neurosurgeons, oncologists, radiation specialists and social workers. I had to make a will and make Oscar my power of attorney, just the most awful of times and what was surreal rapidly became horribly real.
It was a complete blur and as we realised what may happen to our family, Oscar and I found ourselves sitting beside an oval near the hospital sobbing for our babies and our lost dreams. I just kept saying I love my little life and I'm not ready to die.
Days after presenting at the hospital, I underwent major brain surgery.
My recovery in ICU that night was the single most traumatic event of my life. As I woke up with a massive turban of bandages on my head, what was left of my hair caked in dried blood and a bag of gunk connected by a thick tube to my head, the reality of what was happening hit me like a ton of bricks.
It left me feeling very small, vulnerable and traumatised.
Once the pathology was in we were summoned to an empty room and told it was as malignant as they get - 95% chance I would be dead within 18 months and a strong possibility I could be dead within 3. I could drop dead walking my son to pre-school.
This is an incurable cancer, we were told.
The surgeons had taken all they could safely take and there was nothing more we could do, we were told. I sobbed that day like I have never cried before, hardly able to breathe. Utter despair...
One of my doctors suggested I make some short and long term goals. My immediate goals were to see my children start school, but for my long term goal I needed something bigger, something seemingly impossible to focus my attention away from the cancer.
I decided I would trek Kokoda!
It was around this time I met Dr Charlie Teo. He said before we could move on he had to lay the facts on the table.
The stats were horrendous, presented in the form of a steeply sloping graph, down to little or no chance of surviving as the months went on. He looked at my scan and the size of my tumour and confirmed it was indeed a sizable tumour as the earlier doctor told us - around 7cm long. As I passed him in the doorway on the way out of his office the night before my 2nd surgery, he said "Sarah, we can beat this." As parting words, those were extremely powerful. He had given me the greatest gift of all – the gift of hope.
That night I discovered my inner strength.
By the time everyone got up at 5 I told them I couldn't talk and had to stay focused. I walked on the beach with Oscar, walking hand in hand in peaceful silence, with my headscarf in my hand, feeling the sun on my shaved, scarred head.
As I was wheeled to the operating theatre, I sat bolt upright on the bed, looking the world in the eye. After three hours of surgery, Charlie emerged to tell my waiting family if he hadn't operated I would probably only have had weeks, not months, left.
It was in his words 'as ugly as it gets' but he had removed everything he could see and was happy he had given me a fighting chance.
Rather than awakening from the surgery in trauma, I woke with verbal diahorea and wouldn't stop talking – to my family, to my nurses, to the receptionist – to anyone who would listen! This was a very different scenario – I had chosen this surgery and was empowered by my decision rather than being swept along by the tide.
I believe the stars aligned to bring me to Charlie and Charlie to me. The brave and brilliant surgery he performed saved my life.
So it was, one year after being diagnosed, in the middle of chemo treatment, 9 months after a depressive episode and after 5 months of training, I tackled and completed the epic journey in 8 gruelling days and it was just incredible - both the hardest and most empowering thing I have ever done. After the births of my children, it is my next greatest achievement. My heartfelt thanks to our great friend Ken Selu of Niugini Adventure Tours for making my dream a reality.
I cannot stress enough the power of words, both for the positive and the negative. Charlie's words to me the evening before my surgery are an example of their power for good, however I have experienced words that have had completely the opposite effect.
One afternoon, I was walking through the foyer of the hospital and ran into one of the neurosurgery registrars from my first surgery. He said he had heard about my 2nd surgery and they would never have recommended it – far too risky. I pointed at my son in his stroller and said I'm just doing everything I can to stay alive for my family.
Even though I was clearly doing well, he somehow felt the need to say to me "Can I just remind you that you have Grade 4 brain cancer?" The message being I was a useless case. Another doctor referred to me as an unfortunate patient. I am not an unfortunate patient, I am a patient with an unfortunate condition. There is a big difference.
Words cannot be unheard. During my journey with cancer, I have had to turn sadness, fear, anger and negativity into fight and positive thinking. I feel 'cured' by brave surgery coupled with aggressive radiation and 2 and a half years worth of chemotherapy.
My body was aided to cope with the latter through a strict healthy diet, exercise and natural supplements to boost my immunity. But just as important, and in many ways harder to achieve, I feel 'healed' through positive thinking, laughter and outlets like meditation. I have also been blessed with the most amazing group of loving family and friends. Charlie calls them my support crew and that's exactly what they are.
I hate to single people out because everyone was wonderful, but I have to thank Oscar and my mum Laura. Oscar has walked every step of this journey with me. We have laughed together, cried together and hoped together, my divine mum who defines the words love and strength and then of course there are my sons Joseph and William who bring joy to my heart and smiles to my face. They are funny, smart and caring and are the loves of my life.
I've used people's messages of love, prayer and hope as the foundation of my positive outlook. I kept all the cards I received and when I'm feeling low I pull one out from the lucky dip and re-read it.
I have been left with lasting deficits like terrible short term memory, poor concentration and inability to cope with complexity. I have permanent bald spots, but have five great wigs. Luckily for me my deficits are minor and I've developed tools to help me cope with them.
May 2011 marks the four year anniversary of my initial diagnosis, a milestone which by all accounts I should never have reached.
All I can say is that I now believe in miracles.
You can weather the storm by dancing in the rain
And the future awaits...