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Published in the Sunday Telegraph | 21 July 2019 – Republished with kind permission of the Sunday Telegraph.
This may be my final furlong, but I still have hope
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 like 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 “appears to be on the meninges” began to gleam like a thin wisp of hope seeking confirmation. We forwarded the brain scan to my neuro-oncologist and, following a ten-day wait, I was approved for stereotactic radiotherapy again. This meant 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 are 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. My bladder normalised in five days.
Then I bought new shoes because they perk me up like a double-shot, oat milk flat white. Whatever my next steps turn out to be, I’m gonna take them in sparkly silver pseudo-trainers with gold-plated rims on the heels.
We are once again in deep dive research mode on both sides of the pharmaceutical and natural divide. One of the reasons I’m still alive – and have avoided standard protocols like whole brain radiotherapy, which can damage healthy tissue – is because I’ve become an expert in my own disease.
We track the trials, read the medical journals, absorb the data coming out of oncological conferences. When I had leptomeningeal disease in 2017 and two neuro-oncologists insisted that whole brain radiotherapy was my only option, I had the presence of mind to ask them to biopsy a tumour close to my skull for the T790M mutation. This mutation would qualify me for a new brain-penetrating TKI, but they didn’t know what T790M was. Fortunately, I did.
Last week I had targeted radiotherapy to my beautiful brain for the second time. I feel very tired, but otherwise OK. The following day I spoke on a cancer-awareness stage at a joyous wellness festival – and slept for two days straight after that.
I’ve been told I’m crazy for continuing to work in the midst of my own adversities, but it feeds my soul while the radiation burns my tumours. It extends my horizons way beyond personal struggles and keeps my creative engines oiled. As the poet, Donna J. Stone so eloquently put it:
The most visible creators I know are those artists
whose medium is life itself,
the ones who express the impossible –
without brush, clay or guitar.
They neither paint nor sculpt –
their medium is being;
whatever their presence touches
has increased life.
They see and don't have to draw.
They are the artists of being alive.
Just recently, I received the following comment in an email from a dear friend, who used to be my English teacher at school and who nurtured my love of words when I clung to them through the storms of adolescence: “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.
Sophie Sabbage is the author of ‘The Cancer Whisperer’ and ‘Lifeshocks - and how to love them’. Her TEDx talk about grief is available on YouTube.
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