2023

This is not a diary.

And also, it is.

I barely write in my actual diary; it sits on my side table untouched—because to write would require I feel. And to feel is overwhelming.

Instead, I stare at twelve screens for twelve hours at a time. That is my job.

I do more than stare. The screens are filled with trends and graphs, and pictorial representations of mechanical systems and items of plant. I monitor this plant, operate this plant—pumps, valves, mills, conveyors, a steam-driven turbine, and most importantly, the generator attached to the end of it that makes megawatts of electricity.

And I try not to think about the pandemic.

At work and across the country, people are going about their normal business. The pandemic, which once caused the complete lockdown of Melbourne for many months, has been largely forgotten. People are getting sick, yes. It’s inconvenient, yes. But it’s not stopping most of society from expanding their lives and activities to pre-pandemic levels.

There are only a few, now, for whom life has not returned to normal. And some of those, for whom, a small bubble was their previous life.

I sit at my control panel wearing two N95 masks because we’ve been told that one mask may not offer complete protection. And now that they’re no longer mandatory, I’m the only one wearing one. Two.

Although these may seem like extreme precautions and it would be easier to stay home unless absolutely necessary, I regularly say yes to overtime because I have no other life. I pretend that working so much is why I do not write. I do not write, though, because to write would require I think, and all I can think about is the pandemic.

Editors don’t want stories of the pandemic, anymore. (Did they ever?) We are over them. We do not want to be reminded of all we lost. We are post-pandemic, now, haven’t you heard? But my husband and I are not post-pandemic.

In the most recent edition of my writer’s centre magazine, the non-fiction entry that was runner-up in their competition was a pandemic story. So, I ask myself, are we really over them? Because stories of the pandemic are almost always stories of grief. The pandemic has not ended. And grief won’t end, either.

At the end of this month, it will be two years since my husband completed treatment for a rare and aggressive blood cancer. But then, it seems as if they almost all are. There are over 80 different types of lymphoma alone, one of which—primary central nervous system lymphoma—was his diagnosis. His still severely immunocompromised condition does not allow us to return to normal.

The details, though, are finally beginning to fade. The immediacy with which I can recall specific blood counts, dates of treatment, chemotherapy regimens, and the resulting complications has dissipated. Now, I must look at my calendar to remember everything except the most traumatic of events. Many of the events have blurred. Specifics have evaporated.

During his care, I emptied I don’t know how many bottles of urine in the months he couldn’t walk. I learned how to take obs, administer medication, give injections, connect and disconnect IV bags of fluid to his PICC line/port and other things I thought you needed a nursing education for. I kept meticulous records to provide to the doctors on each hospital admission.

Once, at a late-night emergency admission, after I relayed all the details of his latest treatment, the new symptoms, and the recent blood work results, the on-call haematologist asked me if I was a doctor. I shook my head. I’m not, of course. I just have a background in chemistry, and I sought safety and certainty in the data.

Before his diagnosis, cancer seemed an unlikely intruder. While it would be realistic to describe both of us as middle-aged, we were in general good health, ate a balanced diet, and exercised regularly. And although his mother had experienced breast cancer in her mid-life, she is still with us now, in her late seventies.

For months I blamed myself for giving him cancer. (It doesn’t work like that.) I had asked him to get the tooth implant. (At the beginning of his treatment, someone told me that oral health is linked to your immune system and his cancer is a cancer of the immune system.) Or, I must have given him HIV. (PCNSL is more prevalent in people with HIV—so I made my doctor give me a request for a blood test for HIV serology and was tested. Again. Found negative, again.) I was sure that something I’d done, or not done, had made him sick.

At two years, with no recurrence of the cancer, his chances of long-term survival increase a little. But with cancer, long-term survival is defined as five years. Five years. That’s the amount of time between the birth of a child and their entry into kindergarten. And while that time may seem interminable to new parents, it passes in mere moments. We are now almost halfway there. Relapse occurs in fifty percent of cases within two years. Only thirty percent of affected individuals survive more than five years post-diagnosis. As for anything longer than that? Fifteen to twenty percent of fortunate patients have no recurrence. The average survival after a diagnosis of primary central nervous system lymphoma is three years and eight months. Even my cat is eleven.

Until recently, the fear of his illness returning was safely stored away; buried somewhere in my body while I got on with the business of caring and working. I’ve been able to ignore the thoughts. The feelings. The overwhelm of loss. But the anxiety is starting to pop out in unmanageable ways. I find myself gasping for breath in hallways through blurred vision. Formerly suppressed sobs are forcing my shoulders to shudder, even as I swallow them back down. The constant pain in my chest is not a heart attack. Nor indigestion. Because it gets worse when I think about hospitals.

And so, in 2023 (because there is no time left this year), I have to do the only thing I know that will save me.

I have to think. I have to feel. And, I have to write.

Once Upon A Time

I used to write here almost daily–until, I didn’t; for oh so many reasons.

I became aware that certain people were reading. I became more interested in writing for publication. I became conscious of and conditioned to not write for free.

And yet.

Writing here is, and always was, about more than just me. It was, in so many ways, a conversation.

Blogs are not really the same thing they were in 2010 when I first started. And yes, at some point, I will probably promote my Substack.

But until I commit myself to writing consistently enough to have a Substack, this will have to do. And anyway, it’s the conversation I miss the most. I don’t know if people will comment anymore. I don’t know if that’s the done thing. But I’m back to find out.

Today, a poem appeared in my feed.

WATCHING MY FRIEND PRETEND HER HEART ISN’T BREAKING
by Rosemerry Wahtola Trommer

On Earth, just a teaspoon of neutron star
would weigh six billion tons. Six billion tons.
The equivalent weight of how much railway
it would take to get a third of the way to the sun.
It’s the collective weight of every animal
on earth. Times three.

Six billion tons sounds impossible
until I consider how it is to swallow grief—
just a teaspoon and one might as well have consumed
a neutron star. How dense it is,
how it carries inside it the memory of collapse.
How difficult it is to move then.
How impossible to believe that anything
could lift that weight.

There are many reasons to treat each other
with great tenderness. One is
the sheer miracle that we are here together
on a planet surrounded by dying stars.
One is that we cannot see what
anyone else has swallowed.

This is the original version but it seems, edits have been made. And the below circulates in existence, too.

This is almost the version that Rosemerry reads here…

And, to whomever is reading now: Hello, and welcome.

Richell Prize for Emerging Writers 2021 Longlist

Each year–and every year since 2015–the Emerging Writers Festival has launched the Richell Prize for Emerging Writers, in partnership with Hachette Australia and the Richell family. Last year, mid-pandemic and G’s cancer treatment, I abandoned my intention to enter, and this year, between caring duties and work (and still, a global pandemic), I still almost didn’t. But with five minutes to go before the deadline, I uploaded my documents and hit submit on my entry.

The Richell Prize was established in memory of Hachette Australia’s CEO, Matt Richell, who died suddenly in 2014. The Prize is also supported by Simpson Solicitors in Matt’s memory. It is an incredible opportunity for emerging writers, with a monetary component to the prize ($10,000) and more significantly, for me, a year of mentoring with one of Hachette Australia’s publishers.

I am thrilled to be selected on the longlist this year, and even if this is as far as I go, I am hopeful that my book will one day (soon!) find a home somewhere. Perhaps, even in your home.

Congratulations to all the longlistees/writers/entrants and thank you, to the Emerging Writers Festival, Hachette Australia and the Richell family for this opportunity!

The complete longlist can be found at the link below:-

2021 Richell Prize for Emerging Writers Longlist

Music Monday | The Deepest Sighs, the Frankest Shadows – Gretta Ray (covers Gang of Youths)

Lyrics

Cause not everything means something, honey
So say the unsayable
Say the most human of things
And if everything is temporary
I will bear the unbearable
Terrible triteness of being

Songwriters: David Immanuel Menachem Sasagi Leaupepe
The Deepest Sighs, the Frankest Shadows lyrics © Universal Music Publishing Pty. Ltd.

Virgo Season

It’s Virgo season, baby! And that means, it’s birthday month. Years ago, I started with birthday week–but I’ve now learned to stretch it out, long and slow, over the course of a month instead. Three days ago, my coffee machine died. It was just a small pod machine I purchased in Queensland from the store my ex worked at. It had done well to last nine years with the amount of use it received. But without coffee, I’m not that pleasant to be around. And since I’m off work for a few days and we are in lockdown number seven, G surprised me with one of my birthday presents; a barista machine. As much for his sanity as mine, I suspect. I’m going to have to get up half an hour earlier for work to make my coffee now, but even the almond milk I’ve converted to this year frothed nicely with the steam wand. Happy birthday to me!

What I’m Reading

Lately I’ve been ‘reading’ audiobooks. I started last year, when G was in hospital–there is something deeply comforting about having someone else read to you. In the last couple of weeks I’ve finished Sarah Krasnostein’s The Believer, Nardi Simpson’s Song of the Crocodile and now I’m working my way through Paige Clark’s She is Haunted.

The Believer is a narrative non-fiction of six separate tales expertly woven together through Sarah’s curiosity, non-judgement and her own life. In it she shares how her own beliefs (or lack of) intertwine with these six vastly different people and how we have more similarities than differences even if some people believe in ghosts, UFOs, heaven, and hell. It is a work of compassion and empathy, and, as the back of the book says, The Believer looks at the stories we tell ourselves to deal with the distance between the world as it is, and the world as we’d like it to be. How they can stunt us – or save us.

Song of the Crocodile was both heartbreaking and beautifully written. Nardi’s artful description and incredible story-telling contrasted sharply with the story itself and the pain of race relations between Indigenous and settler/coloniser families in this novel. I don’t read a lot of fiction but this was a stunning debut novel.

She is Haunted is the debut collection of short stories by Paige Clark and while I am only half way in, I’m hooked. Paige’s characters have compelling voices, and the collection features themes of transnational Asian identity, mother-daughter relationships, grief and intergenerational trauma. I will finish this book tomorrow; less than 48 hours from when I started–an extremely rare occurrence for me.

Music Monday | Hero – Mariah Carey

We are still in Lockdown 5.0 in Victoria. I’m not sure how many weeks it’s been now. Two? No. Three? Like I said, I don’t know. So, I’ve reverted to spending hours consuming what I call “wholesome content” to keep me sane: Mostly YouTube–which is as close to a time machine as we have–and Mariah Carey, whose song Hero was released at the end of my sophomore year in high school.

I’ve also been reading, and have just finished The Believers by Sarah Krasnostein, and am now devouring Song of the Crocodile by Nardi Simpson. I’m still reluctant to call it reading, because I’m mostly listening on Audible; I don’t have the ability to sit still to read with so much anxiety coursing through my veins. But I’ve “read” more this year via Audible than in the last three years together, so that’s something.

And for anyone else who also needs a little lockdown pick-me-up, last year, the Phillip Island Penguin Parade was livestreamed during our 112 days of hard lockdown in Melbourne–and they are bringing it back from tomorrow night. The Speed Cubers on Netflix is a documentary about friendship and the fastest rubik’s cubers out there. And added recently to my rabbit-hole (and not on YouTube) is an Irish dancing group called Cairde. Apparently they have a TikTok, but I don’t, so I watch them on Instagram.

We are hoping some of the lockdown restrictions will be eased tomorrow. I’m hoping I’ll get the results of my 7th covid test that I had this afternoon. And, more than anything, I’m hoping they’ll be negative.

Music Monday | Grateful – Rita Ora

Anniversary season is hitting differently than I expected–in a good way. Yes, it is overwhelming to be revisiting all the dates of medical procedures and big information, but overwhelming gratitude has been the predominant feeling.

Today is the one-year anniversary of the day I took G back to hospital to begin the staging scans and assessments prior to treatment. By now, he’d had multiple CT and PET scans, an MRI, and a brain biopsy–which is as risky as it sounds. He had been diagnosed with primary CNS lymphoma, all within ten days of me taking him to the hospital, but it was this week coming that they performed further scans–lumbar punctures, ultrasounds, ocular exams and more PET scans–to confirm with certainty that the cancer was only in his brain and not anywhere else in his body (which would have made it secondary CNS lymphoma).

We are four days out from the anniversary of the commencement of his treatment, fifteen days away from the anniversary of him being placed into a coma, and sixteen days from the night they called me to say his organs were failing.

And yet, here we are. One year later. He is outside, pacing, as he speaks to someone from work on the phone. This is typical; he always preferred to stand and move when having conversations in the before times, and nothing has changed. He is working. Not a lot, just a few hours per week, but working nonetheless. This time last year, we assumed treatment would be a linear process. He would go to hospital, have chemo, it would work (or it wouldn’t) and he’d come home. We did not expect nor account for any of the complications he experienced. By the middle of September last year, we weren’t sure he’d ever work–or walk–again.

And yet, here we are. Grateful is an understatement.

Music Monday | Brand New Sun – Jason Lytle

On Wednesday, it will be the twelve-month anniversary of when I took G to the hospital for strange, stroke-like symptoms that turned out to be brain cancer. The next two months will be filled with dates like these; that time he had brain surgery, the time he came home from chemo but developed a severe septic infection and had to be placed in a coma and his organs started to fail, that time after he woke up from the coma but couldn’t walk or talk or move…

I am not sure how I will process the next few months. I didn’t process any of these events or emotions last year; instead, I woke up every day and simply did the things that needed to be done without thinking about anything else.

Eleven months ago, I took myself to the emergency department for heart issues and chest pain while G was in hospital. The triage nurse took my blood pressure, looked at me and said, “Oh, sorry, it hasn’t worked–let me take it again.”

I asked what it was and she said “It’s 158/123”, which put me in the hypertensive crisis category.

“No, that’s right,” I said, “based on what I’m feeling.”

My ECG was normal, even if my heart rate was elevated. They diagnosed me with stress and suggested a follow up a few months later. That ECG in January was normal, too. But now, even though the stress has dissipated, my heart is still palpitating and thudding a couple of times a day. I still have chest pain, multiple times a day. So I’m typing this with a holter monitor hooked up to my heart. I’ve pressed the button several times for mild pain but I haven’t had a bad episode yet. And I don’t think 24 hours is long enough to register one. A month ago, I’d have had three-four episodes by now. A few weeks ago, the palpitations were so intense I had to pull the car over on the side of the road and wait until they had passed. But now, they’re only happening every few days so I’m sure we won’t record the problem–tests are often ridiculous that way. Unless there is more happening that I don’t actually feel?

So, as we approach what I’m calling “anniversary season”, I am going to focus on sorting out my own health and being grateful that G is still here–currently cancer-free, progressing in rehab, and making just as many terrible jokes as ever. Maybe we’ll get our 40 years together, after all.

You should hold my hand

While everything blows away

And we’ll run

To a brand new sun

Music Monday | It’s OK – Nightbirde

If you haven’t seen Nightbirde’s golden buzzer performance of this song on America’s Got Talent, are you even on social media??

A couple of weeks ago (yes, it’s taken me this long to make time to post) I overheard G listening to something on his phone in another room. I wasn’t able to make out the words, just a soft melodic voice floating into the kitchen from the lounge room, and as I walked in to where he was sitting to find out who it was, all I could hear was “it’s ok, it’s ok, it’s ok, it’s ok if you’re lost, we’re all a little lost and it’s alright…”

Later that night, I googled it for myself and sat in bed listening to the voice of someone still battling cancer telling me that it was alright.

When G was first diagnosed with a rare and aggressive lymphoma last year, I spent hours telling other people that bad things happen to good people and that there is no rhyme or reason as to why some people develop cancer; one in two men will develop some type of cancer in their lifetime, as will one in three women. All the while, I was running through a list in my head of all the possible ways I was responsible for his cancer–everything from physical (I must have weakened his immune system by giving him HIV even though I don’t have HIV), to spiritual (God is punishing me for not believing in God anymore), to psychological (if I don’t perform certain rituals and compulsions then bad things happen to people I care about).

Being responsible for it meant that it was possible that I could resolve it, fix it–maybe–or at the very least, I was to blame–and that life wasn’t as uncertain as it felt when the outcome of this disease was entirely out of my hands. It’s not that I’m a doctor. I just feel like I should be able to fix everything for those I love. Because although G was the one with cancer, he wasn’t the only one impacted.

In Nightbirde’s AGT introduction, when she explains she still has cancer in her lungs, liver and spine, one of the judges says “oh, so you’re not ok?” and she replies “not in every way, no.” And then she says the thing I’ve spent the last year trying to teach and learn at the same time…

“It’s important that everyone knows I’m so much more than the bad things that happen to me.”