This may be my final furlong, but I still have hope
As her brain tumours return for a fourth time, ‘Cancer Whisperer’ Sophie Sabbage says she won’t let fear run the show
They’re back. Brain tumours. Round four. I’ve known for two months but needed some private time to come to terms with this development and dismantle my initial conviction that “no one comes back from brain tumours four times (at least not cognitively intact). I’m just not that blessed”. So easy to see this as my final furlong. So natural to be swept into another river of grief.
My daughter is nine now. A longed for late-life baby, she was four when I was first diagnosed with “terminal” lung cancer at the age of 48 and warned I might not see her fifth birthday. As best we can, we’ve always told her what’s happening so that she isn’t picking up tensions she doesn’t understand. Research shows that children of sick or dying parents often think it’s their fault if they are not included and informed.
“Are you going to die Mummy?” Gabriella asked when I told her I had cancer in my brain again.
“Darling, when I know I’m going to die I will tell you. I promise. Until then just continue exploding into your life.”
“OK,” she responded in a jaunty tone, accepting this truth instead of fearing the worst. I’m very skilled at pulling myself back from imagined outcomes like “Game Over”, but I’d love to just head fear off at the pass like she does.
There are fine psychological lines to walk here. “Game Over” is an assumption that kills hope, but the situation is truly perilous. In five years, I’ve had targeted radiotherapy
to my lung, spine and 27 brain tumours in one eight-hour session. I take a TKI (tyrosine kinase inhibitor) drug every day, which is akin to oral chemo and a breakthrough in cancer treatment if you happen to have certain mutations of the disease. I’ve had brain surgery; I’ve nearly died twice, and I’ve never been in remission.
Occasionally, I’ve been accused of romanticising cancer because I refuse to “battle” with it, but this is absurd. I am under no illusions about the brutality of this disease and would return it to sender in an instant if I could. However, I would not return the thousand ways this experience has awakened my spirit, emboldened my living and dazzled me with sheer gratitude for everyday wonders.
In part, it was the relentless battle metaphors about this disease that stirred me to write The Cancer Whisperer shortly after my diagnosis in 2014. I wanted another way of relating to cancer and to help other patients navigate the psychological terrain, which is my area of expertise. If we don’t take hold of our fear it takes hold of us and runs the show. Some patients literally die of shock. Little did I know how deep a need my book would meet in the cancer community or the extent to which I would help patients find some power in this terrifying situation.
For nearly 30 years, I’ve worked in the field of human development (which I continue to do) and taught people from all walks of life how to engage with “lifeshocks” – those unexpected, often unwanted, moments in time when the world as we imagine it meets the world as it really is.
I had been feeling very well for nearly two years when I learned about these new tumours in May. I had imagined I was OK when I wasn’t. The lifeshocks were sudden and loud. First, rapid onset incontinence. Second, my GP saying: “You need an emergency MRI on your spine.” Third, my oncologist’s secretary taking him through a back door to his office instead of through reception where we were sitting (as is the norm). This was when I knew something was up.
My biggest lifeshock in that meeting was seeing these words on the radiologist’s report: “The lesions appear to be on the meninges.” This would mean I had leptomeningeal disease, whereby the cancer is in the lining of the brain. It has happened to me twice before, it’s very dangerous and it rules out treatments such as stereotactic (precisely-targeted) radiotherapy.
Sometimes freedom from fear begins with acknowledging what we don’t know: it creates a clearing in the forest where sunlight can break through. Prognoses are predictions not facts. In the depths of my initial despair, I returned to a threshold I had written about in The Cancer Whisperer: “The sacred frontier of not knowing, where I can break for freedom from whatever I believed was so but isn’t. Not knowing takes me in when I have no place else to go.”
It was on this frontier that the word appear on the radiologist’s report began to gleam like a thin wisp of hope. We forwarded the brain scan to my neuro-oncologist and, following a 10-day wait, I was approved for stereotactic radiotherapy again. The cancer wasn’t on the meninges and, while the treatment won’t stop the disease progressing, it granted me a significant reprieve. Exhale.
Meantime, we were advised that we may need to switch from the TKI to intravenous chemotherapy, but since there is no disease progression from the neck down my husband John and I deduced – without absolute certainty – that the cancer was not mutating. Instead, it seemed we were not getting enough treatment past the blood brain barrier and accordingly, with the agreement of my very supportive oncologist, we raised the TKI dose, despite side effects like septic fingers.
Just recently, I received this in an email from a dear friend who used to be my English teacher at school and who nurtured my love of words: “I wish, how I wish, that humans could swap a few years with each other. I know I’d be in a queue, but I’d be pretty near the front.”
It seems that my cup of blessings still runneth over.