we can do hard things

Music Monday | Anything Can Happen – Tors

/ Tash / Leave a comment

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.

The Reader

/ Tash / Leave a comment

The tectonic layers of our lives rest so tightly one on top of the other that we always come up against earlier events in later ones, not as matter that has been fully formed and pushed aside, but absolutely present and alive. I understand this. Nonetheless, I sometimes find it hard to bear.

Bernhard Schlink, The Reader

My eldest step-daughter lives in the small two-bedroom house that is attached to, but separated from, our main house by a double garage and a small sunroom. Next week, she’s moving to Queensland to continue her university studies (a masters) in psychology and education. While we were eating dinner the other night, G asked me whether I thought that neurodiversity was increasing or if it was just becoming more widely recognised, and therefore accurately diagnosed, and whether that would offer my eldest step-daughter more extensive career opportunities.

Naturally, I looked for statistics. Data is the first thing I turn to for knowledge, understanding, and comfort. In 1997, approximately 1 child in 2,500 in the USA was diagnosed with autism. In 2000, the CDC began monitoring prevalence rates and by 2017, that number was 1 in 68 (Southwest Autism Research and Resource Centre). Although it was noticed that prevalence rates were increasing, long-term expectations and outcomes for adults were unclear. Most group living homes, which had previously and frequently been part of the care of autistic people, had closed by the end of the 1980s.

Despite the wording indicating that more people are being diagnosed today, there is no distinction made as to whether this is because there is a greater understanding of the diagnostic criteria thus more people are being identified, whether it’s because the diagnostic criteria for multiple conditions were rolled into one categorical diagnosis of Autism Spectrum Disorder in the last DSM-5 in 2013, or if the number of people who experience neurodiversity in the form of ASD is increasing within the population. The likelihood is that it’s probably both; prevalence is increasing and awareness and recognition is increasing, thus leading to higher levels of diagnosis.

But regardless of the cause, if the number of people being diagnosed is increasing, it does allow for more opportunities to review and amend an education system that is largely failing the neurotypical community, and barely managing to help (and more frequently harming) the neurodiverse community. I advised that schools such as the Steiner School do already exist and function with a very different ethos to traditional education but that there’d certainly be room for other models if that was the area that my step-daughter was interested in pursuing.

My ex-partner’s current partner’s children (read it again if you need to) attend a Steiner School and I broadly explained the difference between their style of education and the traditional school system and curriculum. I am still friends with my ex, M. He is known as “the nice one” by my step-daughters, and I have explained on more than one occasion that we separated not because anyone was abusive or toxic but because we simply wanted to go in different directions. He was very good to me–better than I deserved–at a very difficult time of my life and it pleases me greatly to see him happy with his partner.

Unfortunately, he and I also have “cancer/caring for someone with cancer” as something in common. Back in September 2019, his partner received a diagnosis of metastatic breast cancer. She was given a prognosis of 12-18 months. It’s been three and a half years and, while she is still in treatment, she is also still here. In addition to her standard medical treatment (surgery, radiation and chemotherapy), she also uses complementary therapies. She had some sort of testing done by a company called Genostics which gave her additional suggestions of other therapies that may reduce the cancer (she has multiple tumors in multiple organs) or, at the very least, keep it in a holding pattern. At the time of her diagnosis, she was told she probably wouldn’t see her son’s sixth birthday but she’s just celebrated him turning eight and the cancer is not yet advancing.

Overall, cancer survival rates are improving. Unfortunately, cancer diagnoses are also increasing. And especially in people who have no family history of cancer. In 2018, a few weeks after my colleague was killed in a workplace accident, a close relative was the first person in our family to be diagnosed with cancer. His cancer is generally viewed as having reasonably strong survival rates but various treatment complications not dissimilar to G’s put that at risk. But he, too, is still here–five years on. Ten years ago, G would not have survived either his cancer or his subsequent neutropenic sepsis but we are now at two years. Medicine and miracles happen every day. Sometimes those stories of survival can be disheartening, though. When G was first diagnosed and I started the process of caring, I joined a couple of groups on facebook for support. They were “generic” carer’s groups, though, and I felt very out of place being so young (comparatively), caring for my partner rather than children or an ageing parent, and not being in financial distress due to our health insurance and workplace sick leave policies. We were extremely fortunate and each of our respective companies looked after us.

At the time, the idea of talking to other people who were dealing with my specific situation–or even just journaling about my specific situation–was not possible. My therapist wanted me to but I all but quit writing for eight months. I could not write about hope and I absolutely could not write about death. Instead, when I had it within me, I wrote about the stars.

There are so many ways in which our stories overlap; in which the tectonic plates of our selves bump up against other people, their experiences, and our own past. It is not fair that so many people I know have to process a partner or parent experiencing a cancer diagnosis and the caring that comes along with that. It is not fair. I understand this. Nonetheless, I find it hard to bear.

It is difficult to know how much to share, here in this forum; I am not writing a book about the year of cancer (yet) which is a different process to blogging. This is open-ended. There is no target word count, no theme to stick to, and no plot or outline to follow. Which means I ramble. Jump around topics, touching on whatever is floating around my mind at the time I sit in front of the keyboard. And yet, week after week, there are readers; you are here. Thank you.

I think about the reader. I care about the reader. Not “audience”. Not “readership”. Just the reader. That one person, alone in a room, whose time I’m asking for.

Jeffrey Eugenides, The Art of Fiction (Interview), The Paris Review

White Light

/ Tash / Leave a comment

Standing at the side of the hospital bed, eyes closed, having rubbed my hands together the way we’d often done in yin yoga, I moved my palms towards and then away from each other, allowing the pressure and heat from the friction to grow into a sticky thread between them. In my mind’s eye, I imagined shaping this thread, forming a growing, glowing ball of white light between my palms. As G lay in the ICU, machines beeping and blinking all around him, I created ball after ball of white light and stuffed them into his comatose body. Later, I worried that I hadn’t been able to ask if he minded if I shoved basketball-sized shimmering lights into his organs. What is the requirement for consent to perform magic when someone is dying?

In reality, I don’t believe what I did healed him. That was done by a team of brilliant doctors. But it made me feel better to do it, and isn’t that what matters? I wasn’t hurting anyone. I suppose that is the purpose religion or prayer can serve, too. To make people feel better? I am not religious. Not in any recognised way. I do not subscribe to any of the world religions and while I grew up Christian, neither I, nor the Christians I still know would ever call me that now; the Bible is not the inerrant word of God. There may or may not have been a real, live Jesus. There is no such thing as sin, heaven, or hell; these are all constructs of control. But once, I used to be a fundamentalist. And the problem I now see with fundamentalism is that it does hurt people.

When he came out of the coma, he was awake and alive but not here. Not himself. He was on a train. He was in an ambulance. He was a 60-year-old school teacher from a neighbouring town. He needed a cigarette. God, he needed a cigarette. Hold on, he said, hold on, hold on, hold on as he tried to grab my arm with the only one of his that sort-of worked, his movements slow, stiff and erratic.

“How long has he been teaching?” a nurse asked me.

“He doesn’t,” I said. “He’s never been a teacher. He doesn’t smoke.”

Sentences were coming out of his mouth but they were just a word in front of a word in front of a word. Unrelated. Until he said “I need to learn another language!”

“You learned another language,” I said. “Remember when we went to Paris and I taught you French? Let’s practice!”

“Un,” I said, expecting him to repeat it.

“One,” he replied.

“Deux,” I said, trying to encourage him to repeat the French.

“Two,” he said.

“Trois.”

“Three.”

“Quatre.”

“Four.”

I counted to ten in French as he repeated the English number after me.

“That’s English,” I said, “not French.” And started counting again.

“Un.”

“One.”

Half way through the second count, I realised he understood. While his sentences made no sense, he knew exactly what was going on.

“Can you understand me?” I asked.

“Yes,” he said.

“Do you know I’m having trouble understanding you?”

“Yes.”

The speech pathologist who’d seen him earlier in the day popped her head into his room and asked if she could see me for a minute.

“I’ll be back,” I told him. “Just a few minutes.”

She asked if he’d ever had any issues like this before the coma; struggles to communicate, not making sense, difficulty with speech or memory. No, I said, never. And then I asked the question I didn’t want an answer to. Is this…going to be permanent?

“I don’t know,” she said.

I shook my head. “I don’t know what he’s talking about. He’s not 60, he’s never smoked, he’s not a teacher. None of what he’s saying is true. They’re sentences. But they make no sense.”

She nodded and bit her lip. “Ok,” she said, “thanks. Could you make something for him? When people start to have communication and memory issues like this, we ask their family to make a memory book. Put in info like work, family, life, etc. Sometimes, it helps their memory.”

I left the hospital after dinner and returned to the Leukaemia Foundation where I stayed up until 2am making “The Book of G” from the template the speech pathologist had emailed me. I filled it with info and pictures for the staff to read, and read to him, emailed it to the nurse-in-charge of his ward who printed it and stapled it together. “You can come in today from 9am,” she told me, when I called to check in that morning after shift handover. Covid restrictions were still in effect and hospitals only allowed visitors in very specific circumstances. A patient not being able to communicate was one of those circumstances.

When I arrived at his bedside at 9.05am after presenting at security for screening, temperature checks and confirmation I was allowed to visit, he was no longer a 60-year-old school teacher. He was himself, as if the person he had been yesterday never existed.

For the last four years, I’ve used a beautiful planner made by Magic of I. At the start of it, there is a yearly planning and intention-setting segment covering categories such as inspiration and creativity, work, health, relationships, spiritual, mental, social and wealth. Last week, when goal-setting for this year, I wrote: practise my French on Duolingo for a minimum of 10 minutes per day.

This afternoon after logging into the app for the first time in many years, I noticed a change. Ads. Ugh. And every time I completed a lesson, it launched into an ad to upgrade. I messaged a friend who is a Duolingo aficionado. He has a 1051 day streak. I’m only aiming for 30. My friend is in Brazil at the moment, practicing his Portuguese and Jiu Jitsu. I’m not sure he needs Duolingo when he’s in the thick of it. And yet, every day, he completes his lessons. I asked if the upgrade was worth it, because it said 60% off. But it didn’t say off what. After 15 minutes of the free version, though, the ads became obnoxious. That’s how they get you. So now I’m a super Duolingo user. I’m hoping the cost will compel my commitment. As I perused this new version of the app, I was astonished to discover you can now learn languages such as High Valyrian.

“Didn’t realise we could learn fake languages!” I texted.

“Why do you call it “fake”?” he replied.

“Because it’s not from a real country.”

“Not all languages are from countries…”

“Perhaps I should have said fictional language. That would have been better.”

It prompted a conversation of language. Languages. Fictional, engineered, and invented languages. Semantics. I asked if he had heard of the Pirahã tribe from Brazil, who have no words for colours, numbers, or past or future tense. Some linguists argue that it is the only language that does not subscribe to the theory of Universal Grammar as there is no recursion. Others argue it does contain recursion, albeit, tangentially. The Pirahã have also been described as the happiest people on earth because, without tense, there is no past or future. They live fully in the present. I scrolled through the Duolingo menu for the possible languages you can learn, and while you can learn Esperanto, you cannot learn Pirahã.

It is possible, perhaps likely, that I have PTSD from this time; from the time spent caring for G both while he was in active treatment, and then while he was in rehab and recovery for months afterwards. Because while my patient was (remarkably) ever-patient and compliant, and caring for him was comparatively easy, the anxiety I developed due to the uncertainty of the situation has not dissipated. At any shift of energy or fatigue, any new would-be symptom, my nervous system moves into uncomfortable overdrive. While he cruises along with a “whatever happens, happens” attitude, I remain hypervigilant to any changes in condition, absolutely not living fully in the present; trapped somewhere in the ether between the trauma of the past and anxiety for the future.

The last six months have seen me dedicate my time to pushing all the medical terminology and understanding of PCNSL out of my brain and replacing it with work again. Just before Christmas, I sat my simulator assessment for work and passed. I am now a fully qualified Unit Controller, in charge of a generating unit. When I began my traineeship, within our group was a former ICU nurse, which on the surface, seems like quite the shift. But as I explained to my mother the other week when I passed my test, it is different, but also the same.

Whenever a patient is intubated and ventilated in Australia, they are assigned a private nurse who is with them for 12 hours at a time. G was ventilated and on dialysis for almost two weeks and his nurses monitored the pumps and valves and machines and equipment, as well as all his bodily systems; blood test results, blood pressure, heart rate, and more, to determine what the next course of action would be, what steps may need to be taken. Any fluctuation of conditions requires an immediate response or their patient could die.

My new role involves me monitoring pumps, valves, equipment and systems of both a mechanical and electrical nature to ensure the unit operates efficiently and within set parameters and limits. It’s same same but different.

I think of the electricity I generate as magic. White light. Invisible to the eye and critical to almost everything we love to do on this tiny blue and green ball, spinning around a dying star. I cannot say what happens when we die. I don’t believe we go to Jesus but I don’t know where we go. I used to think we went nowhere but after the last couple of years, I’m not so sure. Cosmic connections or events appear to exist whether we are aware of them or not, whether we respond to them or not, whether we believe in them or not; we do not understand enough about the butterfly effect, quantum entanglement, or the physics of subatomic particles. And until we do, sometimes, it’s just easier to call the things that happen magic.

2023

/ Tash / 2 Comments

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.

Music Monday | The Final Countdown – Europe

/ Tash / Leave a comment

We’re leavin’ together
But still it’s farewell

Tomorrow, it will be six months since I took G to the hospital for strange stroke-like symptoms. We didn’t know, that night, that it would be months before he’d leave a hospital again. We didn’t know that we’d have to relocate our lives, in the middle of a pandemic, to the covid capital of Australia for his cancer treatment. We didn’t know it would be more than half the year–in fact, into a whole new year–before we’d be back to our home.

And maybe we’ll come back
To Earth, who can tell?
I guess there is no one to blame

And, while we are on the final countdown to going back later this week or next week, we are are still another six months from the end of rehab. Tomorrow, he has a total hip replacement; osteonecrosis, cartilage destruction, and collapse of the femoral head the result of a joint infection after his second round of chemo. And then, the real work begins.

We’re leaving ground (leaving ground)
Will things ever be the same again?
It’s the final countdown
The final countdown