Music Monday | Anything Can Happen – Tors

The metal clasp of the lead clinks in a familiar rhythm against the name tag attached to the dog’s collar as he trots along beside me. The streetlights blink themselves on as the evening light dims and it becomes difficult to avoid the snails on the pavement in the dark. The occasional crunch underfoot induces a cringe, my shoulders shudder, and I shake off the sensation of slime on my shoe.

The dog is twelve in a few months and has slowed down over summer. His enthusiasm hasn’t waned but his energy has. He pants in the warm air as summer, which arrived late, lingers.

Days, these days, consist of the everyday; get up, go to work, walk the dog, sleep. There is pleasure in simplicity when the previous years have focused on not just the pandemic but my partner’s cancer, treatment, and recovery during it.

Last week, we had his two-year post-treatment scans and blood tests. Every three months for the last two years, the blood tests have shown no improvement in his immune system. Immunoglobulins have been undetectable much less anywhere near the normal range. But this time, there was a very small increase in two of the three. They aren’t normal, or approaching normal, but they are detectable. And the MRI showed no evidence of lymphoma.

We are celebrating; not with any grand gestures. No parties or cakes. But by simply continuing to go about the everyday.

Anything can happen.

Music Monday | Tangled Up In Blue – The Whitlams (cover) of Bob Dylan

If it is so difficult to begin, imagine what it will be to end—
Louise Glück

I am reading Geoff Dyer’s book of endings; The Last Days of Roger Federer. I have tried and failed before to read another book by Dyer that came highly recommended: Out of Sheer Rage. Perhaps, after listening to (because that’s how I read almost all books these days) The Last Days of Roger Federer, I will be able to return to it. I was attracted to this current book by its title and my adoration for Roger (as Dyer notes, it’s always just Roger despite not knowing him, only Roger), and also due to the fact that I’d failed to read his previous book. Although, it’s not his only previous book. Only the one I’d previously attempted to read. This new book starts in a fashion I particularly enjoy; short “chapters”. Though most people would probably refer to them only as paragraphs. Other authors whose work I appreciate for the same reason; Yiyun Li in Dear Friend, from My Life I Write to You in Your Life, and Lewis Hyde in A Primer for Forgetting. These short chapters are put together to form a whole picture based on seemingly small, dissimilar or unrelated snippets. They are the style of book I someday hope to write.

Dyer moves from an opening chapter on The Doors, to a second chapter about Bob Dylan and references his song Tangled Up in Blue.

I had forgotten this song. And, when duly reminded, had only the briefest inkling that it was originally written by Dylan (Dylan, not Bob—never Bob, unlike Roger). Instead, I was most familiar with a cover version by The Whitlams. The Whitlams formed in Sydney in 1992 and released their third album, Eternal Nightcap, (which really felt like their first) when I was in my early years of university. They toured university campuses with high energy but I preferred to listen to them at home, alone, in my bedroom with favoured songs on repeat. It is this album that boasts the cover of Tangled Up in Blue. It was my least favourite song on the album and I frequently skipped over it, preferring Buy Now Pay Later (Charlie No. 2), and No Aphrodisiac. But the reference Geoff Dyer made to a lyric from Tangled Up in Blue “We’ll meet again someday, on the avenue” reminded me of a different song by The Whitlams. It was on a later album, Little Cloud. And I used to play it incessantly on the piano when I lived in Queensland. It was called Keep the Light On.

I do not cope well with endings. Even when I have instigated them.

It is impossible for me to turn off my care, compassion, and curiosity for people I’ve had a connection with—who are or have been friends—regardless of whether they’ve hurt me. Or, perhaps, especially if they’ve hurt me. (There are a couple of notable exceptions to this but I won’t be revealing who they are or my former relationship to them.) I don’t know if this is healthy. But I do know that I don’t know how to operate any other way. I always just want to know that they’re well.

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.

Nostalgia

And in the distance
As barren hills are touched by black-tipped fingers
The fading light reminisces about the days it lingered
Over pots of tea with toast
Whispering sweet nothings to its only ghost.
Then the moon rolls across the inky sky
With a gut full of ache and his upside down smile
And he stops to rest in the furthest corner
Heaves in gasps as the solitary mourner
Closes his eyes just for a minute and
Imagines the days when he was thinner.

January 2013

Music Monday | Meet Me in the Middle of the Air – Paul Kelly

I cannot find a reference for the following verse, so if anyone knows who to credit for the below words, please let me know. I’d appreciate it.

“The Measure of a Man”

Not “How did he die?” But “How did he live?”
Not “What did he gain?” But “What did he give?”
Not “What was his station?” But “Had he a heart?”
And “How did he play his God-given part?”
Not “What was his shrine?” Nor “What was his creed?”
But “Had he befriended those really in need?”
Not “What did the piece in the newspaper say?”
But “How many were sorry when he passed away?”
Was he ever ready with a word of good cheer, to bring back a smile, to banish a tear?

These are the units to measure the worth,
Of a man as a man, regardless of birth.