On Dying

Excerpt from A Delicate Touch
Developed as part of HARDCOPY Masterclass 2015 (ACT Writers Centre)

18 September 2019

One imagines that an oncologist’s office must be a repository for tears. Well, it can be but for different reasons than one might think… very few people cry at the obvious stuff…

— Ranjana Srivastava, 2015; The Guardian

A terminal diagnosis doesn’t mean dying, far from it; just as ‘terminal’ doesn’t mean death.

The oncologist and his colleague stood against the wall; and in trying to face all of us he had to his twist his body in a way that gave the impression he was slouching, although he looked like a runner or cyclist — a triathlete, maybe. So me, dad, my sister Peta-Anne and the two doctors crowded around mum’s bed. We did a lot of crowding and waiting in those last weeks. It was horrible.

The doctors would tell us when they were planning a ‘morning’ or ‘afternoon’ visit for the next day. ‘Morning’ meant any time from about 8am to 11.59am. If they hadn’t arrived by noon, it was an ‘afternoon’ visit. I guess they assumed mum wasn’t going anywhere, but Peta-Anne had to work (she was taking time off), and although dad and I could be there any time (he’s retired and I’d taken time off my PhD), waiting around made the process so drawn out. To make matters worse, every single piece of news we received, every new diagnosis, every prognosis was bad, and we didn’t want mum hearing that stuff on her own.

We were at the hospital all the time; whenever mum had a test; and if the doctors ‘scheduled’ a meeting. We tried to make those last weeks normal, but we couldn’t. In hindsight, our routine must have looked very regimented from afar, and maybe it was, but nothing made sense, so routine was the only way we could keep everything straight in our minds.

We’d arrive at about 8am; leave at about 10am, eat; and be back around 12.30 for a few hours. Then we’d go do the everyday things: pay bills, shop, clean the house, keep friends and family updated, speak with neighbours… those everyday things didn’t stop and became abnormal added extras for us. The hospital, illness, dying, they were the normal things here. Dad didn’t stop either. He hardly ate or slept. We figured that if he didn’t have the energy or focus to prepare food, we’d put it in front of him and he’d eat it out of habit, if nothing else. After work we’d pick up Peta-Anne and Kayla (my niece) and go back. Shona (my partner) and Adrian (my brother-in-law) came when they felt it was appropriate.

Shona cut her research short and flew back early from the USA. Kayla was excited to see her aunty. After quarantining Shona for couple of days she came to the hospital with us. We didn’t tell mum Shona was coming because we knew exactly what she’d say: ‘You shouldn’t have come back and wasted all your money.’ I think she was glad to see Shona, but how can anyone be truly glad when they know the reasons for being here are so sad. They hugged.

In the evenings we stayed until mum was too tired or kicked us out, whichever came first. She needed time alone as well. I have no idea what went through her mind when she was alone during those weeks. Every time I try to imagine, even now, I tear up. She liked ‘Deal or No Deal’ and ‘Doc Martin’. Dad helped her clean her teeth, then he’d massage her feet and legs, put her socks on so her feet didn’t get cold, manoeuvre her into a more comfortable position and tuck her in. Sometimes he massaged too hard, and although mum winced, not once did she complain. They’ve never been particularly demonstrative, but there was an intimacy here between them, a private intimacy on public show, that no one else could give.

At times mum annoyed me, and I’m sure, at times I annoyed her. Peta-Anne told me not to get irritated — she was right. I was in denial. Sometimes, while sitting with mum I’d go out into the corridor, saying I had to stretch my back. The real reason was so I didn’t cry in front of her. I only saw her cry once.

The oncologist looked around the room at each of us without actually looking at us. His manner was detached, almost cold. I don’t know who his colleague was or why he was present. I can’t remember if it was a morning or an afternoon meeting. It doesn’t matter.

‘How did this happen so fast?’ mum asked.

‘It probably wasn’t fast,’ he said.

‘I don’t see how that…’ Mum squeezed out a half-laugh, then stifled it.

His answer didn’t make sense to me either. Then I thought about it: mum had been ill for about six months, so that’s what I thought he meant. (At this point I didn’t know cervical cancer takes some ten years to develop.) But that’s what he was saying. Mum had been ill for some ten years, and despite regular pap tests, no one picked up on it. As an oncologist it must be maddening to see people fall through the cracks like this.

‘You probably have between three and nine months,’ he said. He was obviously speaking to mum, but he didn’t look directly at any of us.

Mum didn’t grasp his full meaning. ‘What are the options,’ she said, ‘to make me better? So I can go home without needing help.’

Her question hollowed me out.

‘I can offer you one month of chemotherapy,’ he said.

‘No,’ she said.

‘How much extra time would that give?’ Peta-Anne asked.

Dad was backed up against the window, as far from the oncologist as the small space in the room would allow. He was stooped, leaning on the sill. He was losing weight. He’d positioned himself so mum’s bed was between him and the doctors.

‘About a month,’ he said. ‘You don’t have to decide now.’ He looked around the room at each of us. ‘Think about it. I’ll check back in, in a day or two.’ He left us in the room. He may have left some paperwork explaining what chemo is.

I sat next to mum’s bed and held her hand. My touch had to be delicate. His prognosis didn’t sound confident. I think, at this point he was telling us something we already knew, but it was all so confusing. How illness plays tricks on all our minds.

People have the right to choose how and when they die, but this view is easy to hold when nothing’s at stake. We’d decided that mum’s decisions were hers and we would support them no matter what. I didn’t think about it this way at the time, but when mum refused the chemo, she’d already decided to die.

At this point, mum was receiving radiotherapy, and our best offer was that it may reduce some of her agony. The time from her collapse to her death was six weeks and four days, not a long time under normal circumstances, but under these circumstances those weeks dragged on and on. I couldn’t understand how we got here. I read somewhere ‘… Some cancers can present with back pain. See your doctor if you have strong pain, night pain, have experienced weight loss or any other symptoms you’re worried about.’

Mum had these symptoms, was worried, and consulted doctors.

Cancer isn’t one ailment, it’s more a constellation of diseases that can behave similarly, but often times the specific symptoms and outcomes have little in common.

It can be grouped according to where it starts: ‘Carcinoma: skin or tissue that line internal organs; Sarcoma: bone, cartilage, fat, muscle, blood vessels; Leukaemia: blood-forming tissue, such as bone marrow; Lymphoma and Myeloma: immune-system cells; and the Central Nervous System: brain or spinal cord tissue.’

I admit cancer is complicated, but shouldn’t that mean doctors utilise every analytic tool they can; shouldn’t that mean they appreciate the diversity of ways cancer presents; should that mean they keep in mind the intricate layers of analysis, diagnosis and treatment? By the time mum was offered chemo, the cancer was attacking her organs, bones, nervous system, brain and spinal cord. I’m reminded of Oliver Sacks’ description of migraines:

A migraine is an aggregate of innumerable components, and its structure is composite. The emphasis of the components is extremely variable within the framework of a general pattern.

So while cancer is an everyday word, and we each have an idea of some element of the illness, ‘cancer’ almost… almost… doesn’t mean anything because it is not one thing, and none of us have any idea about the whole. The language we use doesn’t cover it fully. A cancer ‘scare’. It’s so much more than that. Even if it’s not terminal, it’s an ongoing diagnosis; it never ends; it’s with us forever. So, we give these diseases one name and treat them using similar techniques, but each attacks a different part of our body with distinctive levels of vigour and aggression, and at differing speeds. We say: ‘overnight she lost her “battle” with cancer’, but honestly, if living with or through cancer is a battle, how can anyone fight something that can simultaneously attack so many different organs using so many different weapons. People rarely die from the primary cancer. How can anyone get their head around such a death?

All I knew about chemo before all this was that it made patients sick. Mum would have known this as well. I was so confused about it that I had chemotherapy and radiotherapy muddled up. I didn’t realise chemo was drugs. Chemo uses drugs to destroy actively-growing cells (cancer cells grow faster than normal cells). Some fast-growing cells, like hair or blood, are also affected. In general, chemo sessions run over six to twelve months, with rest periods for recovery. Radiotherapy uses radiation to kill or harm cancer cells so they stop growing.

She was ricocheting between pain from all the cancers inside her: lower spine and hip, spinal cord, skull, shoulder, ribs, lungs, liver, pancreas, ovaries, cervix and sternum. Her immune system was shot, and her last days were punctuated with suffering, indignities and distress. Everyday things became increasingly difficult. Breathing hurt; memories leaked away, she struggled to recognise people and pronounce some words; she couldn’t roll over in bed without help; sitting for any length of time was taxing; her facial features were changing; receiving visitors of any stripe (friends, family, doctors) exhausted her.

Even the radiotherapy was stressful. Mum had to travel across town to Canberra Hospital in a ‘patient transfer vehicle’. The nurses began readying mum hours before. They were gentle and caring. It could take all morning for her to shower, clean her teeth and go to the toilet. They didn’t intend taking mum’s dignity, but the whole system is a mechanical, lengthy and cumbersome process that robbed her at each turn. Once she was organised they’d sit her in a chair, so when the orderly arrived she could be manoeuvred into the wheelchair easier than from the bed. Mum couldn’t stand, sit, walk, or lie down for any length of time without pain, and at times she could be sitting there for over an hour. We’d come in and she’d be staring out the window. She looked exhausted all the time. After the orderly put her in the wheelchair; he’d gather the drips, bags, tubes and wotnots, arrange them on hooks on the back of the chair; then he’d wheel her away. She looked child sized. On these days I was never sure she’d come back; and in a way, she never did. Even the treatment stole bits and pieces from her, and from us.

Like chemo, radiotherapy affects all the cells in an area, but normal cells recover better than cancer. It’s used to cure cancers that have not spread, or to mitigate the symptoms of advanced cancer. In mum’s case she received radiotherapy on her abdomen.

Mum was given extra pain medication prior to each transfer, and analgesia upon return. Mum rarely took pain killers before, and only weighed around 38kg by now, so the concoction of meds was hefty. Radiotherapy sapped her energy — and, I imagine, her resolve — so on these nights we didn’t go up for our evening visit unless she asked us to. We let her sleep. Tumours may start shrinking during this treatment, but it can take until some time afterwards for symptoms to abate. We didn’t have that much time, so we hoped her pain would reduce sooner rather than later. I silently hoped she’d walk again. Neither happened.

Mum was told to walk every day so she didn’t ‘lose fitness’, so every day she did a lap of the ward with the walking frame, with the Occupational Therapist (OT) and one other nurse supporting her. The OT would help her from the bed, and mum would clutch tight at the frame, scared of falling again. What she was doing could hardly be called walking and to this day I have no idea why they insisted she do this. This felt to me like a cruel and sadistic punishment, but no matter what, mum did it every single day, right up until she ended up in the hospice, where they didn’t make her do anything she didn’t want to do. She could be tenacious when needed.

Her right leg and foot bent to the side at an odd angle and her toes dragged along the carpet each time she stepped forward. She leaned so heavily on the frame that she strained all the muscles in her shoulders and upper back, which served to cause her more pain and stress. The cancer in her bones screamed hot whenever she rolled over in bed, let alone when she held herself upright to drag herself around the ward. Before, mum could easily walk around Lake Ginninderra for exercise. That’s about 7km. She’s always been an active person. This daily walk must have been demoralising, but, as with every other indignity, mum carried herself with poise.

Chemo probably would have consumed her, possibly even exacerbated her pain. And no matter what, she wasn’t going to recover. Murray, mum’s cousin, survived Leukaemia twice, and didn’t want to lose her, he was angry when he found out she’d refused the treatment — I understand why. They were as close as siblings and grew up in Young NSW. (Mum was born in 1948.) As a kid mum walked home from school based on which fruits she could pick off trees in people’s front gardens. Everyone knew her. She’s always loved fresh food, and along with her gleaned after-school booty, she ate veggies straight from her parents’ garden. She was a happy child.

Both Murray and mum moved to Canberra for work. Mum landed in ’65, when jobs were plentiful and the place was still growing. (Parliament House was 38 years old {new Parliament House was still 23 years away}; the National Gallery was 17 years away; the High Court would open in 15 years; and Lake Burley Griffin, the artificial lake at Canberra’s heart, only two years earlier had been paddocks.)

There’s something extraordinary in the everyday things mothers do. We always had breakfast and school lunches; she supported us to take up any of the opportunities that came our way; and we were free to make our own mistakes, but if we did something stupid she’s let us know.

Mum believed education’s a right, and that people should be treated fairly. Her modest and understated manner hid her in plane sight, which allowed her to have a manifest impact on the lives she touched. She followed the rules, unless the rules were silly, in which case she’d ignore them, and the morals and values she passed to us are an enduring legacy.

She loved music and dancing. To be clear, we have immeasurably different tastes. My childhood soundtrack consisted of Dolly Parton, Kenny Rogers, John Denver, Kris Kristofferson, Waylon Jennings, Willie Nelson (se liked his voice, not his appearance — he was too scruffy), Foster and Allen, Bing Crosby, Elvis, Dean Martin and ABBA. I’m not sure how ABBA made that list. To this day I can’t stand Country and Western music or disco.

But from mum and dad’s first dance, they were in sync. The first on the dance floor, the last to leave. This made mum’s paralysis so much more intolerable. I’m sure she was frustrated with her body’s limitations, but she didn’t let on. Aside from seeing her in pain, watching her struggle with commonplace actions like walking broke our hearts.

Like Murray, we all wanted her to fight, but there was no fight to have. She’d lost before we knew what was happening. How could we reconcile that? Swapping one month’s chemo for one month’s extra life didn’t seem like a good deal to any of us. I can’t believe we spoke in such abstractions.

During all this Peta-Anne asked astute questions and made the doctors clarify things. She’s always exhibited strength and smarts.

I don’t blame the oncologist for being remote. He was telling another person she was dying, and there was nothing to be done. He had to go back to work after speaking with us, and who knows, maybe he had to tell other people they were dying today. Then tonight he’d go home, cook dinner, put the garbage out. Maybe he has kids. I’d be aloof too if telling people they were about to die was part of my job.

I hated the hospital, mum’s room, the smell. I hated the way mum had to move her mouth to swallow to try and get some relief from the thrush in her throat (from her medication). I hated seeing her in pain. This was my cancer fear made real. I’ve been scared of dying of cancer since my early teens. The thing that gets me, is that we do this to ourselves: our own cells eat away at us without our knowing. It’s decay at its most insidious. It’s a total loss of control. I kept this fear to myself for decades. While part of me may have been thankful that I wasn’t in that bed, as I’d imagined over the years, I certainly wasn’t happy about it. I was angry. Had the doctors just listened to mum and dad when mum’s symptoms were setting in, had they shown compassion and empathy, these last weeks would have been far less painful for mum — all of us, really.

The only instance I saw mum cry was when the palliative care specialist explained her prognosis to us. Just like speaking with the oncologist, me, dad, Peta-Anne and the doctor crowded around mum’s bed. Dad was backed up against the window again, but this time he was leaning in to hear the doctor speak. Peta-Anne and I were sitting on either side of mum, each holding a hand. Time wasn’t logical, so I can’t say how long after our meeting with the oncologist this took place. The struggles I had keeping everything in my head, maintaining perspective, preserving some sort of order. Time ceased to be linear, or have meaning. Things slipped away.

Her last six months — even before she landed in hospital — were tough, and she did not catch one lucky break, one bad test result followed another, but neither did she flinch. She met every piece of bad news with strength, and her strength belied her size.

The doctors talked about ‘active dying’; ‘non-active dying’; ‘range of life’; ‘treatment options’. We spoke in months then weeks then days. Chemo for a month will make you very ill, but you may live another month. Three to nine, is what we were told, but because mum wasn’t actively dying she couldn’t go to the hospice. Because she wasn’t going to recover she couldn’t stay in the hospital. I’m still unsure what actively dying is. I thought: ‘If I can’t have forever, I’ll take nine months’. I began steeling myself for my worst: three months. He said mum could return home with community health support. He left, and dad followed him out to ask more questions about accessing that support.

Mum cried and cried and cried. ‘Why can’t people die when they want?’

It’s like I hadn’t been here for days and weeks. My mum was a tiny bundle held together by a hospital gown. Breathing was so painful that they’d put her on constant oxygen. I hadn’t noticed the thin tube under her nose until now. Here she was bracing herself for her worst: nine months. The cancer was stealing so much. My sister and I held her hands. No one spoke.

Not quick enough to be sudden; too sudden to come to terms with. This is the precise moment I learned just how much a terminal diagnosis does not mean dying. Three more months would have been far too long.