Chemo brain and the lists I still can't function without

There is a particular flavour of silence that arrives in the middle of a sentence, when I am mid-thought at the kitchen bench, holding a wooden spoon, watching my own face try to remember what I was about to say. I have been a breast cancer survivor for nearly four years. I have survived six rounds of FEC-T, a double mastectomy, radiation that left my skin blistered and bruised, and years of hormonal therapy that turns my joints into rusted hinges. But the thing I never saw coming, the thing that still ambushes me on a Wednesday afternoon while I am standing at the laundry door trying to remember which basket is the clean one, is the cognitive fallout we survivors call chemo brain.

I used to have a memory like a steel trap. Now I have a memory like a sieve in a summer storm. Last week I drove to the supermarket in Brisbane's Fortitude Valley, parked the car, walked into the fruit aisle, and absolutely could not remember why I had come. I stood there with a mango in my hand, frozen, until my phone buzzed with the reminder I had set in the car park: olive oil. Two aisles over. I laughed at myself and walked away a little sadder than I should have been by a missing memory.

The point of writing this piece is not to wallow. I have done plenty of that, and I am sure there will be more. The point is to tell the truth about what chemo brain actually does to a mind, and to share the humble, often embarrassing, deeply necessary system of lists that gets me through an ordinary Tuesday. If you have lost your words mid-sentence, forgotten a child's name in a flash of humiliation, or walked into a room and wondered who invited you there, this is for you.

What chemo brain actually feels like from the inside

The clinical term for this constellation of symptoms is cancer-related cognitive impairment, or CRCI. Researchers in Melbourne at the Peter MacCallum Cancer Centre have been documenting it for years, and they will tell you it is real, measurable, and stubbornly persistent. But clinical language does not capture the texture of the experience, so let me try.

Chemo brain feels like a word on the tip of your tongue that has been filed down to nothing. It feels like reading the same paragraph three times and still not absorbing the gist. It feels like walking into the laundry to change the load and standing blankly in front of the dryer, watching my own hands move through the motions while my brain files for divorce. It feels like losing the title of a book you read last summer, and it feels like driving to the chemist in Adelaide's Rundle Mall and forgetting the script I have driven half an hour to collect.

Most survivors I speak to describe it as moving through a foggy version of their own house. They know where the light switches are. They know where the cutlery drawer lives. But the pathways feel newly paved, the steps are unfamiliar, and the trip takes twice as long. Some days the windows clear and I feel like my old sharp self again. Some days the fog is so thick I wonder if I will ever find my way back to the version of myself who remembered birthdays without a calendar alert.

Why the fog lingers after the last infusion

When I finished my final round of chemo at the Royal Brisbane and Women's Hospital, the nurses threw confetti and my oncologist gave me a certificate. Everyone acted as though I had crossed a finish line. And I had, in the sense that my body was no longer being actively poisoned. But the brain does not snap back the moment the IV is removed.

Chemo drugs do not just attack cancer cells. They cross the blood-brain barrier in trace doses, and they disrupt the delicate chemistry of neural communication. Studies have shown measurable shrinkage in brain volume in the months after treatment, particularly in areas tied to memory and executive function. Inflammation plays a role. Hormonal therapies play a role. Anaesthesia from surgery plays a role. Sleep disruption, pain, anxiety, grief, and the thousand small stresses of being a cancer patient all play a role. The fog is a layered mix of insults, and it does not respond to a single fix.

The hardest part of it, at least for me, was the invisibility. I looked like myself. I sounded like myself. I walked like myself, once the neuropathy settled. But I was not the same on the inside, and no one around me could see it. Friends would say, "you look great," and I would smile and say, "thanks," and then go home and cry because great-looking people with executive function failure still cannot remember their own phone number half the time.

The lists that hold my life together

I have tried everything. I have tried meditation, which I cannot stick to. I have tried crossword puzzles, which make me feel like my brain is a wet paper bag. I have tried brain-training apps, which I have forgotten to open. What I have actually stuck with is paper, and lists, and the humble art of writing things down before they escape.

My system is layered, because one list is never enough to hold a chemo-brained life. I have a list on the fridge for the week, in big black text on a whiteboard that my partner pretends to hate and secretly relies on. I have a list in my phone, in the Notes app, for the things I need to do that day. I have a list on a folded piece of paper in my handbag for the things I am likely to forget at the supermarket. I have a list on my phone for the things I have already forgotten. And I have a list of things to add to other lists, which is, when you think about it, the most depressing list of all.

The genius of a list, for a foggy brain, is that it externalises the work of remembering. The brain does not have to hold the information, it just has to know where to look for it. This is, as far as I can tell, the only working strategy I have found. Some days I find myself using crap I missed it to track the things I have forgotten and the things I need to do next, and the simple act of writing them down somewhere outside my head is half the cure.

When lists are not quite enough

Lists, even good ones, sometimes fail. The list is on the fridge but I am at work. The list is in my phone but my phone is on silent in the other room. The list is in my handbag but I have left my handbag at home in Sydney because I drove straight to the hospital without thinking, again. On those days, I need systems that are louder than my fog.

I have alarms for everything. I have alarms to remind me to take my tamoxifen. I have alarms to remind me to drink water, which I forget unless reminded. I have alarms that go off at 9.45 pm to remind me that the dishwasher is about to do its loud cycle and the kids will wake. I have alarms to remind me to read the alarms. The phone in my pocket is, for me, the second brain I never asked to need, and I would be lost without it, literally and figuratively.

Working while living with chemo brain is its own particular kind of exhausting. I wrote a piece for the blog called how-i-survived-breast-cancer-while-working-a-9-to-5-and-raising-twins, and the comments underneath that post were the kind that made me cry on the train home. So many of us are trying to hold down jobs and parent small children and remember our own names, all while pretending the fog is not as thick as it actually is.

The quiet grief of a sharper self

There is a grief I have not yet found the right words for, and the irony of not finding the right words is not lost on me. I grieve the version of me who could hold a thought from start to finish without interruption. I grieve the version of me who could read a book in a weekend. I grieve the version of me who could remember a phone number long enough to dial it. That version of me is gone, and I am not sure she is coming back.

The cruelest lie told to cancer survivors is that life goes back to normal. It does not. Life goes back to something else, and the something else involves a fog and a list and a deep kind of tired that sleep does not on its own fix. I have written elsewhere about why-no-one-tells-you-what-happens-after-chemo-ends, and the silence after the bell is the part no one warns you about.

Some days the fog is thin enough to see through. On those days I am sharper than I have ever been, because I know what it is to lose the sharpness, and I never take it for granted. On those days I read a whole page without re-reading it. I remember a phone number. I finish a sentence. I laugh at the sharpness I have been gifted, briefly, before the fog rolls back in again.

If you are reading this from inside the fog, know that the fog is not who you are. The fog is something you are living through, and one day, on a clear Wednesday afternoon in Perth or Parramatta or somewhere equally ordinary, the fog will thin and you will remember who you were. Until then, write the list. Set the alarm. Tell the people you love that your brain is tired. Buy the big whiteboard. Carry the folded paper. And when you find yourself standing frozen in the fruit aisle with a mango in your hand, laughing at yourself, know that you are not alone, and that the list you forgot to write is waiting for you at home, and that is okay.