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 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.
Hi, friends. I hope you and your loved ones are safe and well.
I am so goddamn happy to announce October 23 2020 is the release date of my novel, Home. You can preorder on Amazon at this link.
One week. Just one week, and Ryan will be out of his backwater hometown for good. Sell the farm his grandmother bequeathed him, clear his debts, and start fresh with his high-flying boyfriend. That’s that plan.
What’s not the plan? Brooding bar owner and high-school crush Vic Ward, community hostility, and mysterious reminders of perfect Ethan. Ethan, who had everything Ryan ever wanted. Ethan, who fled Stockyard Point to pursue his dreams. Ethan, whose memory now dogs Ryan’s every step.
The longer Ryan stays in the Point, the more demons of his past surface, and the more Ryan is haunted by the life he could have forged.
Will Ryan stick to his plan? Or will the siren song of his past draw him home?
This is a dark gothic m/m romance of 84,500 words.
In March I announced this book with a May release and then COVID happened. But despite 2020’s best efforts, my book is here!
I cannot tell you how happy I am to release this story. Two and a half years ago my greatest fear was there would be no more time to write books. But there will be time. I am doing awesome. My tumor markers are down from the beginning of the year. I have zero tumor growth since March, and no change to my lymph nodes. Fuck you, cancer: not this year. There will be time for more stories. I’m so damned lucky to have the chance to share Home with you. And thank you, everyone who took the time to comment on my blog with your kind words of encouragement. I almost always felt it would be better to quit rather than continue, and only through the support of all you amazing humans out there was I able to press on.
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.
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.
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.
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.
My blog has been basically on hiatus for over a year.
In January 2018 I found a lump in my breast. It was large enough to be pushing out against my bicep and I was a cup size larger on my right side. That lump turned out to be a big, aggressive tumor and I was diagnosed with de novo stage 4 breast cancer. De novo means when I was first diagnosed I was already stage 4.
Stage 4 cannot be cured, but it can be treated.
I have metastases (secondary tumors) in my liver and lungs. I spent 2018 doing chemotherapy and radiation therapy, and I had a double mastectomy without reconstruction.
This sounds bad but I have been incredibly lucky. I’m under 50, which gives me a slightly longer life expectancy than if I were over 50. I’m healthy, overall. My blood pressure was down to normal before my diagnosis. (I shall now disclose to you that when I was still working at the university it was 180/126. I was about to have a stroke. I’m so glad I don’t work there anymore.)
And I’m even luckier to have had people to walk with me all through the last year. I couldn’t have done it without my friends’ support. I owe them everything.
More good fortune: because I wasn’t able to work for 10 months, if I’d still been in Auckland, I wouldn’t have been able to make my mortgage payments and I would have lost my condo to foreclosure, or, best case scenario, lost a shit-ton of money from an urgent sale. Because I moved to my small town three months before diagnosis, I had no mortgage, and although to clear my debts I have now had to take a loan out against the house, I still have a house. Isn’t that the damndest timing? Thank you, universe!
In December 2018 I was well enough to start full-time work again. I am incredibly fortunate to have found a safe, secure Day Job with 15 sick days a year, four weeks’ annual leave, and if a medical appointment is under 2 hours duration I don’t even need to lodge a request for time off.
Working full time is an ongoing struggle, I won’t lie. My medication causes fatigue and joint/bone pain. Some days are tough, but the pain is a blessing because I’m still here to feel it.
Much more important than my Day Job is writing down the stories in my head before I’m gone. This is my focus right now.
Overall, I am awesome. My metastases responded well to chemo. I’m on tamoxifen, which is like weed mat for tumors, and it’s working for me. My last three blood tests show my key tumor marker – CA15-3 – is down in the totally normal range i.e. the cancer is beaten back for the present. Aside from tamoxifen, I’m done with treatment (for now). I look forward to a future of regular blood tests and CT scans, and at some point the cancer will come back, but then we’ll try a different drug, and then a different one, and then another, and by that time, with luck, I’ll have a bunch more options currently in development, like immunotherapy.
So how long have I got? There’s no way to tell.
The average life expectancy following a stage 4 diagnosis in New Zealand is 16 months. Isn’t that shocking? That figure is skewed by the lack of timely, accessible, and culturally appropriate primary health care for Maori and Pasifika women, leading to late diagnosis and therefore fewer treatment options. I have huge privilege, and I will live longer than 16 months.
Going by US figures, median survival for my age group is 39.2 months, which statistically gives me until mid-2021. 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.
Statistics never tell the whole story. Survival rates necessarily come from people who were diagnosed in the past, and cancer treatments get better every year. The 5-year survival rate doubled between 1992 and 2012, so the longer I live, the better the chance I can see the development of more effective treatments.
The 10-year survival rate is 14.9%.
I choose to live as if that’s not true. I choose to live as if I have 35 more years. 2054. C’mon, universe, let’s take that ride. I have a total solar eclipse to see.
I will blog about cancer stuff from time to time. Not all the time, but definitely sometimes. If this is triggering for you, you might want to stop following my blog. I’ll miss you. There will be blood tests. There will be CT scans. There will definitely be more chemo in the future: hopefully many, many years from now, but I have no control over that timing. And I’m going to want to talk about all this. I’m more keen on talking about notebooks, and planners, and climate change, and science, and the cat who adopted me while I was laid up on the sofa recovering from surgery (I can’t wait to tell you about him). But the cancer will always be lurking in the shadows. That’s what it does.
Fuck cancer. I have sunlight to bask in, words to carve, and a cat to pet. The world is gorgeous and I’m so glad to be in it today.