Still waiting...

Updates on the cancer diagnosis and a few thoughts on death, luck, bagpipes and affronted men.

Last year, I wrote about my cancer diagnosis and all the waiting that entails. I called it waiting to live, waiting to die and I wrote it because I can’t not write about the things that matter to me, but also because it was the easiest way to tell people about the cancer. I had told my children, my mother, my friends, the people who mattered to me and the people who would have to make changes to accommodate the changes in me. I couldn’t keep telling the same story so I wrote it once, sent it out into the world and thought, naively, that would mean I didn’t have to keep talking.

I forgot that I am important to people. I forgot how important that it is to me.

It’s been four months since the surgery that removed my tumours and several internal organs, and I’m still not fully recovered. In the weeks afterwards, menopause and chemotherapy linked arms and crash-tackled me into a new world of sick, exhausted brain fog. At the moment however, I do not have cancer. I just have a slightly worse than 50/50 chance I will have cancer again soon. Uncertainty is a killer.

The question people ask most often is “are you ok?” and I never know how to answer. I’m alive and not in pain, so, yes, I’m ok. I can’t digest food without medication, and I might be dead before Christmas, so no, I’m not. But mostly I can’t answer the question because what they’re really asking is “are you going to die soon?” and the answer is I don’t know.

Most of the time I’m very calm. The future is unknowable but I’m alive today and tomorrow looks pretty good. That, dear reader, is the best any of us can get. My cancer might come back next week, but you might get hit on the head by a falling coconut tonight. Any emergency department nurse or doctor can tell you more than you want to know about unexpected death and the wounds we never see it coming. Fear is in the confrontation, not the knowledge, of the inevitable.

The calm is not a façade. My ability to live entirely in the present has always made planning a future almost impossible, now it’s really having its time in the sun. I’m alive today. I can sort out the rest later. But I get these tiny, occasional jolts. TV has become an important means of stopping all my naps crashing into each other but the new season of The Gilded Age won’t be released until 2027. Jolt. After 25 years of a slightly weird obsession with US Survivor, will I get to see season 50? Jolt. My PhD is still trucking along and I’m now planning to do the interviews with convicted rapists next summer. Next summer. Jolt.

When I first started taking the dog for walks after the surgery I couldn’t get halfway around the park without having to sit on the ground to catch my breath on a cold spring morning. Now the dog park is dry and hot and full of Australian summer smells as I pace steadily around, until a remembered waft of winter knocked me to the ground again. Clinging to the earth as it spins, trying not to wonder if I’ll see another cold season in this park.

I can be equally knocked aside by how lucky I am. Were it not for a vigilant GP and an eagle-eyed radiologist, my cancer would not have been caught in time for any treatment to work. But here I am, buttressed on all sides as people who care about me care for me. Alive in my comfortable, safe home with the nutritious food and time for sleep I need, as the medication that makes me sick gives me a chance to survive.

And yet, death dances with me in my dreams. Not looming and awe-inspiring. Small and imp-like. A sniggering trickster stealing all my time and the memories I’ll never get to make. The reality of everything that is me just ending is too brutal but I can’t see any alternative understanding of death. A friend tried to talk to me about faith and belief in an afterlife. She meant well but it bewildered me.

What portion of me could exist after my death? There’s no iteration of me that wouldn’t be tormented by knowing my mother’s final years were spent grieving for her only child. Nothing of me could find peace knowing my children have to keep growing up without me. There’s no version of me that could know my daughter has to have a child of her own or apply for a job or get a new dog without me there to share it with her. Nothing could remain of me that would not be tortured by how much that would hurt her. I couldn’t conceive of anything worse than continuing awareness of self after death. So, I just end. Nothing left but my children’s children I will never meet and the small joys and stupid jokes and anxious moment I’ll never have.

Maybe it’s this that makes me calm. That ending is too harsh, too final to think about. So the small joys become much larger. I was immensely cheered when my local dog pack acquired a novice bagpiper. He stands solidly in the middle of the park practicing Auld Lang Syne and Scotland the Brave, sounding like he’s trying to stuff an elderly Scottish elephant into a backpack. Indifferent to jeers, shouts, applause and the occasional hounds howling back at him, he blows on relentless in the face of all that opposes him.

The healthcare system continues to confound me. The doctors and nurses determined to save my life laugh at my cancer jokes and don’t drop their gaze when I ask if I’ll die in pain. Your taxes pay for the care they give me; a billionaire’s wife pays for the clinic I go to, sometimes my daughter pays for the drugs that might save my life. I… just keep sleeping 14 hours a day. And working. Somehow, my PhD is still on track. My confirmation hearing is next week and then comes the multiple ethics applications – they’ll take a while. Interviewing incarcerated rapists comes with many ethical dilemmas.

I walk the dog most days and go to the gym most weeks. My oncologist told me I’m welcome to try the snake oils purveyed by Instagram wellness grifters, but the most effective things I can do to keep cancer at bay is sleep a lot, eat well and exercise regularly. So I go to the gym to lift my tiny weights. It helps to feel that I’m fighting, not waiting passively for death to take me. Mostly I ignore the gym bros huffing and puffing around me but one of them interrupted me once, in the middle of a endorphin-induced moment of gratitude for all my body has endured and given me - despite my frequent hatred and ill treatment. He told me I would never change my muscle mass unless I started lifting more. I told him I wasn’t trying to change my body I was trying to thank it, and he should keep his unsolicited fucking opinions to himself. He stormed off, looking as affronted as any man does when being chastised for giving a woman he doesn’t know a you’re doing it wrong lecture about her decisions for her own wellbeing. Two well-muscled women behind me laughed and muttered cheers.

Days pass. Days I can take the dog out and walk for miles. Days I can’t get out of bed. Days I could get up but instead I just clutch the mattress as the world spins without me. Days I lie on the floor and scream into the bitter injustice of it all. Days I spend in a bathroom and a cold sweat with a bucket on my knee trying to convince God to make a deal with an atheist. Days I’m grateful to be alive. Days of wasted time. Days of counting every second. Days and days and days passing. Days of being alive. Days of unanswerable questions and unendurable answers.

Am I ok? I don’t know. I’m still waiting to find out.

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