CANCER makes me live a THOUSAND LIVES
When Sophie Sabbage was diagnosed with ‘incurable’ lung cancer at 48, she wrote a book about it. Now 50, she says that cancer has actually improved her life...
WHEN The Cancer Whisperer was published last year, I hadn’t anticipated the sweet spot it seemed to hit in the cancer culture. The steady flow of patients who contacted me seemed to have been waiting for a different dialogue about their illness: one that honoured the truth of their experience and encouraged them to listen to, rather than battle, their disease.
I started receiving emails and Facebook messages from complete strangers. Some shared their cancer stories with me as if I were a family member or a priest. Some reached out to me from the pit of their despair because they didn’t know where else to take it. Others simply wrote to say thank you, ‘for saying it the way I want it said’.
I neither planned nor foresaw that. I resisted pressure to reach more people because that wasn’t my agenda. I was following what was unfolding more than driving it and this strategy was important. It kept me grounded and I could serve selectively, while protecting my wellbeing. After all, I was still gravely ill, but mostly I felt well. I wasn’t just alive. I was fulfilling dreams I had given up on — especially becoming a writer, which I had wanted to be since I was ten — before my taken-for-granted tomorrows nearly gave up on me.
It might have been easy to slip into denial with all this excitement going on. But life really isn’t like that. Not when your cancer is stage four. It’s always part of the landscape, like a black lake in a prairie basin. Sometimes it spreads out for miles in front of you as you arrive, legs
burning, at the top of a steep ridge on a mountain climb. Other times, when the terrain levels out, it dips behind a ridge you haven’t reached yet, almost entirely hidden from view.
In these times, I feel so normal I can catch my breath and cool my muscles, as I used to on childhood walks in the Black Mountains of South Wales, where the acres of dense forestry rolled out like a green storm as far as the eye could see. I take in fine details of a view I would likely have overlooked in my carefree, pre-cancerous days: the way the clouds roll like a tide along the bottom of the valley or the crescent moon rises in daylight and hangs in the blue sky like an angel’s trumpet.
Then, as night falls and the distractions of daytime are slowly silenced, the lake appears again just behind your left shoulder. Cancer is a presence. A constant, relentless, unforgiving presence. It won’t be denied or forgotten for long. Nor can I forget it because I belong to a tribe now. The cancer tribe.
We are everywhere. We are sitting on trains, driving on roads, walking our dogs in the park. We meet each other in hospital waiting rooms and chemo wards. We find each other in online support groups. We connect in natural health centres and alternative clinics.
You can identify some of us by our wigs and turbans, or the grey pallor of our skin, but many of us still have full heads of hair and look as healthy as any other passer-by. We wear our illnesses like undergarments. Mostly we hope no one will notice, but sometimes we wish that they would.
We can spot each other more easily, of course. We know the signs: the thinning eyebrows; the short crop of new hair; the portacath just below the neckline of someone’s shirt, or the small scar where one used to be. ‘Where’s your primary?’ we ask, often before introducing ourselves. ‘What stage?’
There’s no ducking cancer once you’ve joined the tribe. A late-stage diagnosis seems to tip some patients into a more expeditious acceptance of their condition, and an unmentionable envy of those who caught it earlier. We are a tribe within a tribe.
We are the ones who cower a little when we hear inspiring stories of remission and recovery, truly heartened by those who have turned it around, but fearing we live on the sidelines of that playing field and believing we’re unable to claim victory in a narrative where the only ‘winners’ are survivors.
The press often drives this narrative, but it also derives from the relative lack of funding for metastasised cancer and a medical system that has long written off late-stage patients. This is slowly beginning to change, but it can feel very dispiriting to be set up as inevitable ‘losers’ even as we tap our deepest veins of courage, humour and awe.
Sometimes I feel so angry, so confounded by the way this one makes it and that one doesn’t; having a young child, I feel especially angry when we lose the mums of wee ones. Occasionally I wonder why I’m still alive when they’re not. I slip into survivor’s guilt. Then I turn my attention to the living and thriving, to the unexpected recoveries against the odds and the low murmur of the miraculous whistling through the wind.
Not that I’m officially a survivor. That term is reserved for those who have been in remission at least five years and remission is a ridge I may never reach on this particular trail, however strenuously I strive for it.
Nearly two years after my diagnosis, I am still aiming for the mountain peak I paint in my dreams: the place whereI wake up without cancer casting its shadow across my morning. The place where I find myself inexplicably cured. Instead, my brain tumours came back. A lot of brain tumours.
I found out in April 2016. My daughter Gabriella had just turned six and was in a state of wide-eyed wonder because Joy, her favourite character in the Disney Pixar film Inside Out, had come to her party in person to entertain her friends. Imagine that!
My book had just been auctioned to US publishers, a second book had been commissioned and I was preparing to celebrate my 50th birthday in style. I had, at long last, fallen completely in love with my life.
In my 49 years on earth I had fallen in love with bougainvillea, the Greek island of Lesvos, the Okavango Delta, peonies, champagne on starlit beaches, horse rides in the Andes, the bead-throwing Mardi Gras revellers of New Orleans, the Garden of England (Kent, where I now live), my husband, my daughter, truth-tellers, justice crusaders, the version of God I encounter in unexpected challenges rather than religious texts, and our wondrous planet spinning in infinite space.
I had fallen in love with a hundred poems, a hundred places and a hundred lives, but I hadn’t fallen in love with my own. Cancer helped me do that.
Of course, we don’t ‘fall’ in love. We rise. We are more, not less, of ourselves in its presence. We are uplifted, not laid low.
For all the devastation I felt during those early weeks after my initial diagnosis, cancer became the unexpected hand that banished my self-forgetfulness and pulled me into legitimate self-regard. It burnt the bushels I had been hiding my light under. It made me rise in love with myself.
The news that the disease was progressing came after a routine MRI scan. First, a call from Tim, my oncologist, to say, ‘We have a real problem, Mrs Sabbage.’
Then, there were the four visible brain tumours I could see on the scan in his office and ‘several tiny spots indicating there could be more’. Then, hearing him recommend intravenous chemotherapy as ‘standard treatment that usually controls the cancer for ten months after the first infusion’.
‘No,’ I finally responded. ‘We need to find another way.’
‘I am getting used to that answer, Mrs Sabbage,’ he conceded. ‘You have taught me how important it is to treat every patient differently and you continue to push me for innovative solutions. It seems I need to get out of the box and find another solution.’
And so began the next deep-dive inquiry into what might be possible if I was aiming higher than the standard ten months.
I interrogated him for over an hour that day — about trials I might participate in, drugs that penetrate the blood-brain barrier, tests he hadn’t even heard of and experimental strategies we might try. At the end of the meeting I asked Tim if I was a very difficult patient.
‘No, Mrs Sabbage,’ he replied, beaming from ear to ear. ‘I always look forward to my meetings with you because you are so much the master of your own destiny.’
In the end, I decided I needed a brain expert more than a cancer expert and found a neurosurgeon in London who offered me Gamma Knife radiation. This involves having a metal frame screwed to your skull prior to treatment — which is intensely uncomfortable.
Unlike whole brain radiotherapy, which radiates the brain indiscriminately, this frame bolts your head into the machine and keeps it completely still while they target the lesions with minute accuracy, thus protecting the surrounding tissue. We anticipated somewhere between eight and 12 small tumours. They found 27.
Later, my neurosurgeon told me it was unlikely this treatment would have been approved if so many tumours had been detected when I first went to see him.
His eyes twinkled with delight because we had bucked the system and biffed the whole lot in one session. Apparently, I now hold the record for the number of lesions targeted in a single treatment at that hospital. And there, yet again, by the grace of something, go I.
A lot of people have asked how I handled lying still for eight hours straight, but I turned it into an opportunity to find inner stillness and reflect on what I still wanted to do with my life. Before I knew it, it was over.
However, the aftermath was brutal. It was like coming home from a day on a scorching hot beach with no sunscreen and realising that your skin is severely burnt. Except the sunburn is inside your head.
Just three weeks later, I celebrated my 50th birthday. I threw a huge party in a marquee in our garden, attended by 150 people from every decade of my life.
I suspect some came because it might be their last chance to see me, but there was nothing sombre about the evening. It was an unbridled celebration of life. After dinner we brought out 150 African drums, passed them to every guest at every table and — orchestrated by my friend Tom Morley, who was once the drummer in the 1980s band Scritti
Politti — drummed in perfect unison, as if we were drumming for every human being with cancer who has walked upon this earth.
I put the drum between my knees and, as I felt the rhythm crescendo all around me, an almighty pressure popped in my chest until I roared like a mountain waterfall.
Not with rage, grief or even relief, but with joy. Simple, unexpected, unadulterated joy. It was one of the high points of my life.
During the evening, my guests wrote messages in ‘Say It To Sophie’ books created for the occasion, which I feasted on in the days after. One of the messages that most touched me was from my brother, which simply said:
‘Sis. You have no idea how proud you have made me, I don’t cease to be stunned by what you have achieved in these last 18 months and the incredible way you are living life with such intensity that it is like you are living a thousand lives. I love you. Your Big Bro.’
Living a thousand lives. I love that. Before cancer, time was thin. I lost it regularly. Whole days would pass by without me making something of them.
Other days were packed with busyness, but no presence, no savouring the bounty of a moment.
IN A crisis, time gets fat. It opens, layer by layer, like a peony. It’s similar to that moment when you finally kiss someone you’ve been aching for and then melt into so much tenderness that time stands still and bows.
A cancer diagnosis doesn’t make you more important than the rest of our mortal race. Any one of us can be taken out at any moment — gunned down in a nightclub while we’re dancing, washed away by an ocean we were trying to cross in a bid for freedom. But it does put you on notice. It invites you to live a thousand lives in whatever time you are granted, without ever really knowing how much time that is.
This discovery of 27 tumours in my brain, and consequent treatment, has been an acutely sobering encounter with my fragility.
Less than three months later they have almost completely disintegrated, but for a few barely visible spots that my neurosurgeon assures me are on the way out as well.
Better yet, no new lesions have appeared, which means the disease is in check again, and my options for future treatment are not exhausted.
Naturally, I am awash with gratitude and relief. ÷THIS is an edited extract from The Cancer Whisperer by Sophie Sabbage. An updated paperback edition is published by Coronet, price €20.99 at easons.ie