Friday. June 2006. Queen’s birthday weekend. A day…a weekend, I will never forget….
I woke up that morning feeling some kind of sensation on my right arm like pins and needles and numbness. Thinking that I must have slept on it–I stretched my arm and shook it. But it wasn’t subsiding at all—instead, it was dissipating to the rest of my lower right limb! I thought, “Oh my God, am I having a heart attack or a stroke?” Bearing in mind that my mum died from a heart attack in 2001, I was willing it to stop. All I wanted to do that day was to finish my Uni assignment! Right on cue, I started to feel some weakness on my right leg. Still in denial that something was dreadfully wrong, I decided to have a shower. Coming out of the shower I felt out of balance. As I walked through the hallway, I was bumping on the walls. At this stage, my hubby Andy, decided to take me to the Lyell McEwen Hospital. After running a battery of tests including a mathematical calculation–the registrar said I was a bit slow. To which I replied, “Maths wasn’t exactly my forte at school.” By 12 midday, he labelled me as a conundrum. They decided to send me to have a CT scan; by 2 pm the results of the scan showed that there was an anomaly in my brain. An MRI was the next test. By 4 pm, I was told that I had a brain tumour the size of an egg. I had to digest this information on my own because Andy had to pick up our son Wade from school. Upon hearing this, a mental fog hovered over me….
A few days later, my treatment included a craniotomy—first for a biopsy and another one for a partial resection. I was diagnosed with a Grade 2/3 Oligodendroglioma tumour which was located on my left parietal lobe. Our radiation oncologist in one of his rounds, casually informed us that patients with my type of tumour can survive between 10-12 years. I cried myself to sleep that night….
Our medical team recommended for me to have radiation treatment. A typical course of radiation was administered involving a 15-20 minutes treatment 5 times per week for 6 ½ weeks. Notes: The tumour and a small margin are targeted by a powerful beam. In doing so, it gives the normal cells time to repair themselves but not enough time for the tumour cells to repair themselves between treatments.
During the last week of my 1 month stay at Wakefield Calvary Hospital, unfortunately, the symptoms that presented itself that fateful day, recurred. I worked with a neuro-physiotherapist for a few months to a point where I regained some mobility and balance.
Initially, the possibility of losing my hair during the course of radiotherapy didn’t bother me at all. But when I lost clumps of it while I was showering—I broke down. That day, I took ownership of the hair loss by getting Andy to shave it all off. When I recount this story to others, there’s always one person who comments: “but it’s only hair, it seems so trivial when you consider the alternative!” Yes, this is a valid point of view. But for many women who are dealing with cancer, losing our hair is like losing a part of our identity. But I suspect that at the heart of it though, is the loss of control….
Cancer is more than just a diagnosis. When a cancer patient gets a diagnosis it becomes a family affair. Our son Wade lost a sense of innocence in terms of having to deal with the implications of his mum living with brain cancer. Andy lost a potential financial partner in me because at that time, I was half-way through a Bachelor’s Degree in Early Childhood Education at the University of South Australia. So yes, patients are more than just a statistic—we have back stories and lived experiences.
There is no doubt that the cancer experience can be intense. Take me for instance: physically, I have prevailing issues with my mobility and balance. I still have sporadic headaches. I get fatigued easily these days. But despite all that, my cancer experience have yielded a lot of positive moments. I rediscovered how blessed I was to have the most wonderful husband & partner. The support of family and friends have been unwavering. Andy, Wade and I never take anything for granted. There’s a sense of gratitude and mindfulness in the way we deal with our lives. When I was lying down in hospital, I kept playing this movie in my mind that projected a mental checklist of milestones that I wanted to be a part of: I saw myself celebrating my 40th with family & friends; I saw myself at Wade’s high school & university graduations; I saw myself organising Wade’s 21st party; I saw myself with Andy, celebrating 25 years of wedded bliss. And you know what, I’m doing really well with that list! On Wade’s 21st birthday party, I said in my speech that this was a momentous occasion for me because I get to celebrate and tick off yet another milestone on my checklist!
Many of us who are living with cancer often coin this phrase to explain that the life we once knew has somewhat changed throughout the journey. It is by no means a deficit—it’s just different.
Two years ago, our support group was invited to contribute a piece of art for an exhibition with the theme “waves” and it had to convey what our group was all about. I created the piece in the photo (with some ideas from the group) entitled “Brain Waves”. It became a symbol of my new normal. It sums up my cancer journey far more eloquently than I ever could. The mask is actually the one that I had to wear during my radiotherapy treatment. The tags depict all the emotions/feelings that flooded through…and also the self-discoveries along the way. The scarf represents my battle with brain cancer and the mask is my battle scar. And with hope & determination, adversity can turn into achievable triumphs.
My cancer experience has given me the opportunity to do volunteer work with Cancer Council SA in their peer support program. It is important for newly diagnosed patients to realise that they are not alone and to know, that someone, have walked in their shoes. My work with Cancer Council, Cancer Voices and with our support group, Adult Brain Cancer Support Association (ABCSA) has been rewarding and cathartic. It has given me a sense of purpose and meaning. Sure, my brain cancer journey has been paved with challenges and frustrations…but as I navigate my way through this new normal… I’m learning to accept it with grace and always with hope.