On March 30, 2019, I wrote:

The average life expectancy following a stage 4 diagnosis in New Zealand is 16 months . . . Going by US figures, median survival for my age group is 39.2 months, which statistically gives me until mid-2021.”

I did it.

I’m here.

I made it past median survival.

My first-line treatment – Tamoxifen – stopped working at the beginning of 2021, and my cancer kind of took off with a hiss and a roar in June. I’m on Palbociclib (Ibrance) and Fulvestrant now. These weren’t even options in NZ before May 2020, and I’m incredibly grateful to the women before me who fought to have them funded through Pharmac. My treatment team doesn’t have enough data yet to really judge if they are working, but there are other drugs if they’re not helping – or not helping enough. I try just to think about one week at a time. My job helps me focus on getting done what needs to get done.

I’m so lucky to have the job I do and I do not regret leaving academia for one second. I work with amazing people and the pandemic has expanded the scope of what I do enormously, in ways that give me the deep satisfaction of service.

I wish I’d looked beyond beating my head against a brick wall at universities for so many years. I got hyper-focused on what I thought I wanted, instead of looking at the daily misery I was actually going through. But this is a thing I cannot change and I will not waste time regretting it now.

I like my small town. At rush hour it’s 12 minutes from home to work: I timed it. It has an indie bookstore and wonderful cafes. Because I am not living in Auckland I am escaping the worst lockdowns, and there’s still a sense of a semi-normal life. I finally got my COVID vaccine shots in July 2021, which was right before our Delta outbreak in August.

In 2020 I released two books, and although I haven’t released one yet in 2021 I do hope to have one out in the next 6 months. The words still tick over slowly.

In 2019 I also wrote:

The five-year survival rate – i.e. till 2023 – is 36%, which isn’t negligible. There’s definitely a good chance I will make that.

I have a great chance. I’ll see you back here on 20 March 2023.

I thought once I finished active treatment the hard part was over. I was completely wrong. I have been drowning all year, and haven’t felt able to raise my hand.

Logic-brain hammers at me: you are lucky. So, so, lucky, lucky. How dare you be sad.

My tumor marker CA15-3 is 24 and has been stable there all year. I have a job! (Holy fuck, thank you, universe for finding me a job).  I should be grateful. I am grateful. But right now I don’t feel like my life has meaning for me.

Meaning #1

I am my mom’s caregiver.

My mom is basically autistic, although of course, we have no diagnosis because girls now aren’t getting diagnosed, let alone girls born in the 1950s. My mom isn’t able to navigate the world. She has meltdowns, which FYI are terrifying to grow up with. I thought it was only my mom so Holy Fuck and Praise Be the internet, meltdowns are a thing.  I’ve been looking after my mom since I was seven years old.

My mom has MS. This is such a sucky disease. It has taken away her ability to walk without care, to navigate the world thoughtlessly. She used to walk everywhere, dragging my reluctant ass along with cajoling and effervescent optimism. Now she’s fighting vertigo every step. She has to think consciously about every foot placement. If she forgets, if she lets her mind run forward to consider what she’s going to do when she gets wherever she’s going, her left and right feet conspire and tip her over. She falls a lot. When it’s on carpet the relief washes through me. When it’s on concrete outside I wonder how much time I have before my shift starts and how long the wait will be at Accident and Emergency at the hospital. And yet she’s still not broken anything. Grazes, torn clothes, bruises on the body and the ego, but no fractures.

My mom also has a brain tumor. I know, it’s crazy. To those who have little, even that shall be taken away. The tumor meant she had to stop working back in 2017 after she made some irrational decisions. Well, they weren’t her decisions. Let’s say the tumor made some irrational decisions. And it has spirited words away from her mind. We play daily guessing games to hunt for misplaced nouns.

We met with my mom’s neurologist last month. The tumor hasn’t grown. And her MS is stable, there’s no more degeneration. Possibly this is related to the greatly decreased stressed now that she’s not working. I mean, there’s still a terrifying blackness where the entire interior of her brain was. The dark that devoured the woman she used to be and has left me living with a looking glass version of herself.

So my mom will go on like this . . . forever. Or another 30 years, whichever comes first. For longer than me, almost certainly.

There’s never going to be an end to this for me. Never going to be a time I can leave the house without saying where I am going. Never a time I can spontaneously decide to have a weekend away, or decide to hell with dinner, I’m having toast in bed watching Netflix. And that makes me want to cry. I want to look after her. I just figured I’d have 20 years after she died I could have just for myself. But that won’t happen.

So my life has meaning in that my being here allows my mom to live at home, have a nice life, to be free of pain and fear. That has value.

Meaning #2

I am my daughter’s future financial stability.

Wow, we really fucked over the younger generations, didn’t we. Especially here in NZ with house prices. Before I had cancer I had no debt. I owned my house outright and that is because I was lucky enough to get on the property ladder in the 90s recession, with the worst house in a good street. I worked in customer service for a fashion brand, and my salary was exactly the same as it is now. Twenty years and salaries at the bottom end didn’t move a skerrick. It took holding down three jobs at a time and plenty of weekends where there was zero money and I was down to eating that rogue jar of pickles that had been pushed way to the back of the fridge since Christmas. But I was lucky.

Because of cancer, I have a mortgage now, and I’m about to consolidate my extremely unhealthy credit card debt. The Mortgage should be paid off in 9 years 7 months, the other debt in 5 years, I need to stay alive and working in order to leave my daughter a house she can rent out (please, universe, let her choose a stable passive income over cash she could accidentally misspend).

But a big part of me  – most of me – that thinks it would be more valuable for her to have the money now. She can sell my house and buy one close to where she works in her city. She and her partner could seriously plan to have a child: something that cannot be done on two median incomes as renters. If I was gone I would make her life a lot easier, sooner. But it would only work if I was gone and my mom was also gone. While my mom is still alive my death would make things much harder for my daughter, not easier. And it’s likely my daughter will have children in the next 5 years or so. I can provide valuable child-sitting services during school holidays. That’s worth serious cash.

So, on balance, more value if I continue.

Meaning #3

I am a listening human who cares.

I am so grateful to have my job. I truly believe the benevolent universe has my back and gave me this job to get me through the rest of my life. I work in a contact center for a government department. I talk mostly with people who are upset: whose lives have been derailed. Sometimes they threaten self-harm. Once a caller threatened to hunt down the minister’s home address and meet him on his doorstep with a firearm. I wish he hadn’t said this. He seemed like a decent human knee-jerking in frustration, but of course, we had to call the police. That first bit is a lie. He seemed like a privileged white male Boomer who for once in his life hadn’t got everything he wanted the second he demanded it and I wanted to shout at him, to drag him into my headphones and make him hear the people who are actually suffering.

I can never fix what is wrong: that is not in my power. But I can listen. I can be a genuine person on the other end of the line who acknowledges their pain. I can show them the way forward if they’re ready to take that step.

I am good at my job, which is ironic because in my Ph.D. thesis introduction I literally named my worst fear: working hard for my Ph.D. and still ending up working in a call center. Which, yep, is exactly where I am. But the call center feels safe. The crew is lovely compared to the 99% of academics who are gigantic vindictive petty assholes. My crew embraces difference. We are pegs who can only dream of being a nice stable square or circle. Pegs hewn from raw branches twisted by the winds of economics and shitty growing conditions of brain chemistry. Pegs for whom no hole has been calibrated. But together we weave a stable form.

My empathy has value.

The thing I’m struggling with is where is my meaning? Where’s the thing that gives my life value? No, not value. All that above, that is value. Where’s the thing that brings me FUCKING JOY? I work six days a week for not much above minimum wage and I can only pay my bills if I do that extra sixth day of overtime.

The days are fog-painted, each one endless, yet, en masse, darting like swallows around a wharf as they circle the core of my life. Get up. Do . . . what? I have no idea where the days go. But they go. And then it’s 3pm and I’m showering and dressing so I can look like I haven’t stopped caring and then I am at work and wishing for my 8pm lunch break and then it’s midnight and I drop my co-worker off and come home and sit on my sofa and  watch YouTube until it’s 2am and I’ve stopped replaying the night’s calls and failures in my head and I’m tired enough to sleep. Or not. Sometimes it’s 5am and I’m lying awake with the covers thrown back, dabbing away Tamoxifen sweat.

And the voice in my head never shuts up counting, never shuts up bargaining, never shuts up wondering. Two years, Em, Two years left of the median survival. Was the last eighteen months worth it? Was that worth you being on the planet for? And you want fucking more? That news article about a woman with stage 4 who lived 20 years, could I dare think . . . ? No. Never ask for too much. Don’t be greedy. Ten years? No, not ten. Counting chickens, and all that. But maybe you could get five years. Maybe? That would leave you with another 3.5 years now. What are you going to do with them? What’s worth the last 42 months of your life? If you’re not going to contribute anything in the next 12 months what the hell is the point of having another 30 beyond that?

I want to find my joy in writing but I’m not writing. I want to have written. Don’t we all. When I was diagnosed with cancer all I thought about was the tiny story embryos I was carrying. I want to take them to full term, but more than that, I want them to be out in the world even if that has to be as misshapen first instars, slimed with imperfection. But the days drift by as I try to make myself get out of bed, put my fingers on the keys, prise the words from my tongue and force them, writhing, to the page, and still there are no books, there are no more stories.

Maybe I need a tattoo. On my brain.

Stop Whining. Just Write.

Stop Whining. Just Write.

Stop Whining. Just Write.