No evidence of active disease

Now what?

Warning: the text includes references to life expectancy figures for people with metastatic breast cancer.

(versão portuguesa)

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I left the doctor’s office happy and anxious.

Happy, because for the first time the doctor used the words ‘no evidence of active disease’, words that carry an extraordinary lightness. They carry time, which is lighter than hydrogen.

Anxious, with a tightness in the back of my throat, because those words move the abyss farther, but I don't know how many steps.

I think of my mum, as I often do since I started all this. In 1989, she was diagnosed with breast cancer and 14 years later with bone metastases; she died eight years later. I do the math; I add and subtract, and the numbers wrap themselves around each other. I compare them with my own once again. In 2016, I was diagnosed with breast cancer and 7 years later with bone metastases. Doing the math is like passing an accident and slowing down to see what's going on: it's useless and creates traffic.

I count the steps, again and again. Now what?

This question, like a threat, creates the urgency of knowing what to do with the time I have left. What are you going to do now? What am I going to do now? Stop working? Travel? Publish my manuscript?

What do you do when you're told you have an incurable disease, when it's likely that you won't reach retirement age, but it's also possible that you'll last many years with a decent quality of life?

I feel like I'm in a limbo, but I'm in good company — all of humanity lives here: nobody knows when they're going to die. But if before I was able to live without noticing the abyss, now I feel its presence at every step. The curtain is open.

Two years ago, I tried to make a bucket list, without much enthusiasm. I had made a list years before, when I took an unpaid leave — a decision prompted by the first diagnosis of breast cancer and other serious health problems that followed.

At the time, I made a list of all the things I could do during that year and let my imagination run wild: I imagined myself volunteering at a community farm on the other side of the world and living as a hermit in a cabin by a lake. In all my fantasies there was a common theme: I wanted to write my book and find a way to make writing, words, a central part of my life, of my future.

That year I didn't work on a community farm on the other side of the world, but I did volunteer for the first time at a Buddhist monastery not far from home. I didn't get to find the cabin by the lake, but I did find plenty of places to write, by rivers and by the sea. I took part in a proofreading course. I managed to finish my book. I started working as a ghostwriter. I took part in two literary festivals, including Correntes d'Escritas, in Póvoa do Varzim, where the writer Luis Sepúlveda had the first symptoms of Covid-19 that led to his death and after which I was quarantined, when it was still unclear what was happening in the world. Despite being interrupted by the pandemic, the main objective of my ‘sabbatical’ was achieved: words are now a central part of my life.

The new label, ‘no evidence of active disease’, unsettled me, and it's strange when I feel apprehensive about good news. The curtain is still open; the abyss is still there, but the space has widened. Now what?

The immediate answer is not a bucket list but something more subtle. I fantasise cautiously, not for fear of failure, but because I know that time is precious, and the distance can shorten at any moment.

What could be a sense of urgency becomes a filter where some trivialities are trapped and others pass through. I want peace, love and health. I want to find the silence and the space to feel things as if for the first time. I want to feel my body as part of me and not as a problem I need to solve. I want to hug people and laugh until I cry. I want to savour ideas and discuss them, deepen them, and be fascinated by the wisdom of others. I want to be moved by stories and the beauty of things.

I haven't made a bucket list, but I've been thinking about my legacy. What landscapes are transformed by my passage? What do I leave behind? The time spent with the people I love? The words you read, the ideas I throw out into the universe? A few photographs that managed to capture the light at the right moment?

I think about my legacy, but I don't linger on it. Sooner or later, we all will be forgotten. Landscapes don't stay the same. We're like the bird that flies close to the surface of the lake and stirs up the waters. We may not leave footprints, but we still want to fly.

We never know how far the abyss is — we're all stumbling in the dark. But when we are able to feel the ground under our feet, the universe pulls us, and we gain space to breathe, to dream.

The question remains: what now? What are you going to do with the time you have left?