(This is excerpted from The Cancer Whisperer, published by Blue Rider Press, an imprint of Penguin Publishing Group, a division of Penguin Random House LLC. Copyright © 2017 by Sophie Sabbage.)
I remember sitting in the radiation waiting room at my local hospital six weeks after I had been diagnosed with Stage IV incurable metastatic lung cancer. I was about to start radiotherapy to a large tumor on the C3 vertebra in my neck, which was eating through the bone into my spinal column and causing me considerable pain.
I had multiple tumors in several sites — lungs, lymph nodes, bones and brain — but this one was selected for special attention because it was endangering my mobility and threatening my “quality of life.”
According to my doctors, saving my life was not an option, so preserving its quality was now their primary aim — which pissed me off. They seemed to be consigning me to my statistical fate without giving me a chance to be one of the few inexplicable ones who beat the odds.
As soon as I believed my life was over, it started to retreat into another room.
They did their best not to use the “d-word” or put a date on it, but the subtext was ever present when they spoke to me: Whatever happens, Mrs. Sabbage, don’t get your hopes up, because you are going to die. I hadn’t even started treatment, but the water of possibility was already closing over my head.
A New Reality With Cancer
As I waited for the radiation, I was still in shock. I had agreed to do this particular treatment first because turning over at night and standing up from a seated position had become very difficult. I couldn’t pick up my 4-year-old daughter anymore. I needed some respite from the pain to think, listen, inquire, intuit and somehow, anyhow, choose what the hell I was going to do.
I had lost my balance. My hands couldn’t locate the banister that helped me find my way downstairs in the darkness. New protocols appeared slowly, like a procession of mourners behind my previous existence: scans, consultations, train rides to London to see specialists, blood tests, insurance forms, lines through pre-diagnosis appointments in my diary (like social events and business meetings), saying the news out loud to people to make it real.
Cancer gate-crashed my shipshape life in an instant. One day I felt normal; the next, a single sharp pain in my back revealed itself to be a large tumor pressing on the pleura of my lung. Over the course of three weeks, my diagnosis unfolded in sublimely merciless freeze frames, each one exquisitely brutal in its precision — until finally, on hearing I had more tumors in my brain than they were able to count, the universe popped like a party balloon and lay shriveled in my shaking hand.
Life ‘Started to Retreat’
As each scan result came in, my lifeforce faded and thinned like a waning moon. I was coughing blood, becoming breathless after walking upstairs, and losing so much vision in my left eye that I had to stop driving. I was tired and felt cold a lot. Very, very cold.
Perhaps it was the doses of radiation from all the scans that sent things spiraling downward so quickly, but fear and shock themselves are powerful forces that ricochet through the body like bullets.
It seemed as if the knowledge itself was killing me. As soon as I believed my life was over, it started to retreat into another room, erasing the windows and soft furnishings, folding up my future, putting it neatly in the bottom drawer, dimming the lights, stopping the clock on the wall.
I knew I needed to change my mental landscape if I was going to have any shot at seeing my daughter’s fifth birthday or my own 49th. I didn’t want to deny what was happening to me, nor was I willing to comply with the gloomy predictions of my inexorable ending.
Writing Her Own Story
I felt furious when people started saying their goodbyes to me, and I barked at the nurses when they treated me like I was in a hospice for the dying. I wanted to know every detail of my condition and reject everyone else’s interpretation of it. I was willing to hand over the outcome to God, but not to my doctors or to statistics. To whatever extent was possible, I wanted to write my own story and I was damned if I was going to inhabit theirs.
My husband, John, came to the hospital with me the day I went through my first radiation treatment. While sitting in the waiting room, I received a deeply tender text from a friend and might not have let my tears roll so freely if John hadn’t been sitting beside me. The nurse assigned to my care hurried over to ask if I was OK.
Her concern felt suffocating rather than comforting, as if she was trying to stop me rather than support me, as if my tears might harm me in some way, alarm the other patients or, worse, give them permission to cry, too. Yet what better time to cry than this? What better time to honor the life that was vanishing in the wake of my diagnosis, to grieve the future that was being wrenched away from me, to wail like a widow for the fading light?
No Time But Now
Now was the time not to freeze but to feel: to be fully present to my experience; to let every kind text and loving gesture break whatever shell my heart was still encased in; to be awake, aware and alive enough to prize the cherished things that needed remembering and the unrequited hopes that needed grieving.
I was conscious of the stoic silence that hung like a thick fog over the radiotherapy waiting room. The numbness. The underground river of unanswered questions. The shy terror. The private prayers. The intensity of a diverse group of patients waiting for some part of our bodies to be burned and some aspect of our mortality to be orphaned.
“Are you OK?” the nurse asked again with more urgency, her anxiety burrowing into my skin.
I touched her hand lightly to comfort her before replying, “I think I might be the only one here who is.”
She stepped back, confounded, unsure what to say or how to help if I couldn’t be talked out of my tears. She slipped away quietly and kept her distance at my subsequent visits to that hospital. I was an anomaly, an unashamedly vulnerable anomaly in a context through which censored sorrow flowed.
Following that day’s radiation to my neck, another nurse approached me and handed me a piece of paper. “This is the date of your next appointment, Mrs. Sabbage,” she said matter-of-factly, clearly assuming there was nowhere else I needed to be that morning.
I looked at the date, quickly checked my diary and told her I wasn’t free that day. And there it was again: visible alarm on the face of a nurse because I had given the wrong answer.
“But it’s your radiation appointment,” she responded.
“I see that, but I’m not available,” I persisted.
Maybe I could have rescheduled whatever else I had planned. Maybe I was being selfish by not fitting in with the system. But something rose up my diseased spine that made me stand firm. I wasn’t having it. I wasn’t going to be told to show up on command without being respectfully asked if I was available.
And if there was a time for being selfish, this was it. Desperately ill as I was, I knew it was vital for me to make my own choices on every step of this journey — to schedule my treatments around my life, not my life around my treatments, to be the author and the protagonist of my story.
Although I have frequently been advised to prioritize my appointments over everything else (subtext: or else you’ll die), something more life-affirming and potentially more lifesaving comes stubbornly into play: my fierce, feisty and indomitable sense of self.
‘Trusting Your Own Wisdom’
I received many more appointment letters telling me where to be and when before my oncologist got the message. It wasn’t his fault. It was the system he works in, a system it’s all too easy to get swept away by when you’re diagnosed with cancer. It moves like fast traffic on a motorway.
Before you know it, you’re caught in the headlights, with no clear view of what’s coming your way. Your diary is filled with appointments, prescriptions are handed out with minimal explanation, and decisions are made on your behalf— all while you’re still trying to come to terms with your diagnosis.
When your life is on the line and every decision seems potentially perilous, a lot of cancer patients want the doctors to make their decisions for them. I understand that. And if that’s how you want to navigate your journey, fine.
But if you have some sense that directing your own treatment, trusting your own wisdom and taking charge of your own care is treatment in its own right — psychological medicine for your cells, medicine that may matter as much as the drugs you are taking and the food you are eating — then I am writing this for you.
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