by Matt Vickers
The weekend culminated in a late lunch at a restaurant in town with her family. I sat beside Lecretia and she sat across from her parents. We talked about Christmases and nieces and nephews and the summer we’d all just enjoyed.
But there was a moment when her father, Larry, flung his hand out in front of him in a demonstrative gesture, and sent his glass of red wine flying. The wine arced out of the glass and hit Lecretia’s white dress, spreading out quickly into a blood-red stain.
Larry was horrified at what he’d done. The heavy symbolism of the red wine on the elegant white dress was too much for him. His body quaked and he burst into tears.
‘It’s all right, Dad,’ said Lecretia. ‘It’s just bad luck.’
On Monday night, Lecretia and I went to her favourite restaurant in Wellington, a bistro called Capitol. She looked glorious and I wondered if I would ever see her this way again. The sun poured into the restaurant through thin wooden blinds, bathing us in a golden light.
‘I love you, sweetheart,’ I said. ‘I’m so sorry this is happening to you.’
‘I’m scared, Matt,’ she said.
‘I’m scared too. But I know it’ll be okay. It has to be. I need you.’
She extended her hand. I held it for a long time. Her slender fingers entwined with my own. Her hands were always cool to the touch, but within a few moments they were as warm as mine.
‘I really thought we were going to have a family,’ Lecretia said.
‘We still might,’ I said. ‘When you beat this thing, we’ll get back in touch with San Diego. We can pick up where we left off. There’s no reason why we can’t.’
‘Maybe you should try with someone else.’
‘Don’t be silly. When I married you, I meant it. You’re everything to me. Children or no children. That wasn’t a condition of marrying you. There were no conditions. I wanted to be with you whatever the future held, even this. You changed my life.’
‘I ruined your life.’
‘You did not. I’m a better person because of you. If it weren’t for you I’d still be eating pizza three nights a week. You’re the best thing that ever happened to me.’
That night we made love, desperately, quietly, passionately, as though it might be the last time. Afterwards we held each other and slept that way until morning.
The next day, we went to Wellington Hospital.
Once she was settled in the neurological ward, she dug through her handbag and pulled out a greeting card in plastic wrapping. She unwrapped it, wrote a message and signed it. She handed it to me.
‘This is a birthday card for Aunty Pat. Make sure you send it, okay?’
‘Okay,’ I said.
‘Don’t forget.’
I stayed with her that night in the hospital, sitting beside her while she struggled to sleep. I held her hand in the dark and we listened to the mysterious sounds of the hospital: the ceaseless beeping of machines, the footsteps of nurses in the corridors, the snoring and moans and cries of patients.
‘It’s going to be okay,’ I said.
‘I know. And if it isn’t, I’ve had such a lovely weekend, Matt. I’m so lucky.’
We had lived the last few days as though they were Lecretia’s last: with food and friends and family. We had done everything we could, and now it was up to the neurosurgeon, and fate, to take us through the looking glass. Lecretia was ready.
In the morning, Lecretia’s family came to see her before she went into the operating theatre. She hugged and kissed everyone in turn and said a few words to each.
I walked beside Lecretia’s bed as she was wheeled through the hospital. A set of double doors loomed ahead.
‘Okay, this is as far as you can go,’ the orderly told me.
‘Matt, you have an eyelash,’ said Lecretia.
I leaned over her, and her delicate fingers brushed my cheek.
‘Got it,’ she said, and smiled.
I kissed her one last time, and stood back, and the orderly pushed the bed forward through the doors. Lecretia’s eyes met mine. And then the doors swung shut, leaving me alone.
Chapter 11
THE WAIT WAS unbearable. I spent most of it sitting in the hospital café, drinking bad coffee and answering emails.
Shortly after lunch I received a call from the neurosurgeon.
‘The surgery has been successful. We were able to de-bulk the tumour. Lecretia will be awake shortly.’
I felt a huge relief and went to find Lecretia. She was lying in bed, slightly elevated, with a bandage around her skull, but her eyes were open and clear. Dried blood bloomed purple beneath the outer layers of gauze where her skull had been pinned back together and her skin stapled up. The left side of her scalp had been shaved.
‘How are you, babe?’
I didn’t know what to expect. My poor wife had had her skull sawn open and parts of her brain removed. Would she recognise me? Know my name? Be able to speak?
‘I’m sore,’ she said, and smiled.
‘Oh, babe,’ I said.
I gingerly hugged her, careful not to move her, but grateful for the contact. It felt like she’d been on a long journey, one that had physically changed her. She was slow and measured in her movements but well aware of her surroundings. ‘Did you send that birthday card to Aunty Pat?’ she asked.
I sat with her that night and slept in the chair beside her bed while she dozed.
The next day she was moved to another room on the ward, which she shared with an older woman in her seventies.
Her friend Angela came to visit. Lecretia told her she was upset that they’d shaved only half her hair off. The hair that remained was matted with dried blood. Angela grabbed a pair of scissors and trimmed her remaining hair, then took a sponge and a bowl of water and mopped up the blood that had congealed around the staples holding her skull together.
Doctors came to visit and after twenty-four hours suggested Lecretia might like to try walking. As soon as they left, Lecretia asked me to help her out of bed so that she could try.
She stood and then rocked on her feet for a moment before taking a couple of steps. I took her arm and slowly walked with her out of the ward and up the corridor. We went thirty metres and came back again. She didn’t lose her balance once.
The old lady next to Lecretia had suffered a stroke and was in her very final days. She could say only one or two words. She had very few visitors, and was lonely. On one occasion we watched as she rang the bell for the nurses repeatedly. I went out to the nurses’ station. There was no one there. When I returned to the ward the old lady moaned and, clearly distressed, emptied her bowels into her bed, and the smell of it quickly filled the small room.
I finally found a nurse coming out of another ward and described the problem.
‘Yes, we’ll be right there.’
It took another fifteen minutes for the nurses to show up. They rolled the old lady onto her side and changed the sheets. They roughly wiped her bottom and told her how naughty she was. Every time they shifted her, the smell in the room grew stronger.
We felt so bad for that old lady. She had done nothing wrong—she was only dying. But she was at the mercy of her health, and the nurses she shared with all the other patients. She clearly prided herself on her appearance and looked after herself—her nails were manicured, her hair a tight perm—but sadly she’d found herself in the neurological ward of a public hospital, with few visitors and attended to by overworked and underpaid nurses who scurried from one minor crisis to another.
According to palliative care statistics, most of us will die in a hospital. If we’ve kept up our friendships and relationships we might have a few visitors. But at our most helpless we will likely be cared for by people who don’t know us or love us. It’s no surprise that most of us would rather not die there. A hospital is designed to save lives and to propel us back out into the world. It is not designed for living or dying.
Chapter 12
LECRETIA SPENT TWO more days in hosp
ital. The surgery was successful. The tumour had been tamed, but not excised completely. A piece of it had been sent off to the lab for biopsy. The results would tell us what type of tumour Lecretia had.
Her condition improved steadily. She walked out of the front doors of the building unassisted, her head still bandaged. When we got home I held her arm as I walked her into the house down the narrow concrete path.
I had been off work for two weeks, and I was still finding my place at Xero. I was worried too that Lecretia might need to finish work for good, and that I would be financially responsible for looking after both of us. We had a mortgage and bills to pay and I didn’t want Lecretia to feel that she had to go back to work before she was ready. So we agreed I would go back to work, and Shirley would take some time off to look after her.
Lecretia spent most of the following weeks sleeping at home, being nursed by her mother. Ferdinand would sit with her on the sofa or at the end of the bed. It was still warm and sunny in March but the sunlight hurt her eyes, so she spent a lot of time inside.
We returned to Lecretia’s oncologist, who showed us the scans and gave us the results of the histology report. The suspicions were confirmed—Lecretia had a diffuse astrocytoma, with elements of oligodendroglioma.
A more serious tumour, like a glioblastoma, is shaped like a dense marble of tissue that slowly expands. This was more formless, as though someone had blown a puff of smoke into her ear. It meant it was hard for anything to get a grip on it—whether a scalpel, or a drug, or a particle beam. The cancer was growing along two cellular pathways: the astrocytes, which form the supportive tissue of the brain, and the oligodendrocytes, which perform a similar function. The cancer was attacking the structural glue holding Lecretia’s brain together.
The tumour was still present. It stretched from the front to the back of her brain. It had crossed the central cortex and begun to take root in the right hemisphere. Lecretia’s vision had not improved, which was to be expected, since the surgery had removed part of the brain responsible for visual function. It was extremely unlikely she would ever regain the left side of her field of vision.
The oncologist informed us that radiotherapy would begin in two weeks. The therapy targets the cancer cells, but it would kill healthy brain cells too. Because Lecretia’s tumour was diffuse, this was inevitable. He also said that it was important, once we started, not to skip a day of treatment. The radiotherapy would be less effective if we missed any sessions.
The night before Lecretia started radiotherapy, we went out for dinner. She wore a skullcap and dressed up beautifully for the occasion. I held her hand across the table.
‘I’m so sorry about all this,’ I said.
‘It’s not your fault.’
‘I feel helpless—I don’t know what to do to help you.’
‘You’re doing it. You’re here for me. But I thought we’d grow old together and I thought we’d have children. I really wanted children. That was my plan.’
‘So what’s your plan now?’
‘I don’t have one any more.’
The first session of radiotherapy was on the second floor of Wellington Hospital. We entered a room where a huge machine dwarfed everything else in it. The machine looked like something out of 2001: A Space Odyssey, with huge off-white plastic panels and chunky curves.
Afterwards I asked her how it felt, and she said, ‘It’s like being inside a photocopier.’
After the first week we were informed the hospital would be closed on Good Friday and Easter Monday, so the radiotherapy would be suspended.
‘But we were told that we couldn’t skip a day of treatment—four days without treatment, isn’t that bad?’
‘It’s not worth worrying about.’
The radiotherapy left Lecretia more and more fatigued. Light hurt her eyes and she was bothered by loud noises. She sat in silent contemplation like a nun, not in search of some revelation, but because the ordinary business of thinking and seeing was a source of acute pain.
After Easter, Shirley watched as they placed Lecretia in the machine. The nurse on duty was training a new staff member.
‘You see these two red lines?’ she said, indicating two red beams of light that formed a cross where the radiotherapy sequence would begin. ‘You need to line the horizontal one up across the back of the skull here, and the vertical one up through the skull, and down the centre of the back and between the legs, so that it’s nice and centred.’
‘Okay,’ said the trainee.
‘Once you’ve got everything lined up correctly, you can begin.’
The next day, Lecretia and Shirley were surprised to see two different nurses on duty. Shirley watched as they placed her daughter in the radiotherapy machine. She could see that they had not correctly lined up the vertical red beam.
Out of earshot of Lecretia, she pulled the nurses aside and told them.
‘It’s fine,’ insisted the nurse. ‘Please leave the room now. We’re about to begin.’
Shirley left, simmering with anger. When Lecretia emerged twenty minutes later, Shirley asked her how she was.
‘I don’t know, Mum,’ she said, ‘but it felt different today, like it was in the wrong place.’
At the next session with the oncologist, Shirley complained about what had happened.
‘Why didn’t you say something?’ asked the oncologist.
‘I did! They pushed me out of the room!’ she replied.
The next day, however, when Lecretia returned to radiology, the original nurse was there and she pulled Shirley aside. ‘I’m so sorry,’ she said. ‘I was off that day. They got bureau people in who weren’t trained. It’ll be okay, I promise, but I’ll make sure someone is there who’s properly trained next time or they’ll postpone the treatments. This doesn’t normally happen.’
What we learned, in our experiences in the health system, is that ‘what normally happens’ is subject to unplanned absences, computer glitches, lost notes, failures to follow up, confusion about next steps, misunderstandings. Continuity of care was often quoted as an aspiration, but the system is run by busy people who have an appointment with someone else right after they have dealt with you. They are overworked and underpaid. The Kiwi mentality—don’t make a fuss, don’t cause trouble—can work against you, possibly even kill you. In a hospital, as in life, the squeaky wheel gets the oil.
Lecretia’s last session of radiotherapy was in May, and she took a few days to recover.
‘I have to get back to work,’ she said.
‘You’ve just had radiotherapy—you can take more time.’
‘No, I can’t,’ she said. ‘Now that the radiotherapy is done, I don’t have any more excuses.’
She returned to the Law Commission on slightly reduced hours, finishing at 3 pm. Shirley and I tried to convince her that it wasn’t necessary, but she was insistent. She felt that she should be there, putting the work in.
Her hair gradually fell out, leaving only scabs and redness. The tops of her ears and the side of her face were burnt and cracked. It was painful. I rubbed aloe vera into her scalp every night, but it offered only slight relief.
While this was going on I did a lot of reading about Lecretia’s condition. I got The Neurology Handbook out of the Philson Library at the University of Auckland, and read up on her specific condition. Aside from PCV, an intravenous treatment that had been the standard of care since the eighties, the latest wonder drug was called temozolomide. It cost close to $2000 a month.
I also found a reference to an academic paper called ‘Prognostic Factors for Survival in Adult Patients with Cerebral Low-Grade Glioma’ by F. Pignatti et al. I found the paper online and devoured its contents. Lecretia’s doctors had refused to offer any thoughts on a prognosis—saying Lecretia could have from a year to many decades of good health.
The paper talked about five factors that statistically predict mean survival times from diagnosis. They were whether the tumour was over six centimetres in diameter at a
ny point, whether it had crossed the midline, the presence of any neurological deficit such as cognitive impairment or loss of vision, whether the person was over forty, and whether the tumour was made up of one type of brain cell or several. The fact that Lecretia was still under forty and that the tumour had more than one cell type both worked in her favour. At the bottom of the fourth-to-last page was a little table you could use to calculate a patient’s likely survival time, which indicated that Lecretia had between 3.2 and 4.8 years. Statistically, around 95 per cent of patients in Lecretia’s situation would live a little more than three years but less than five. From the date of her diagnosis, that worked out to be between June 2014 and December 2015. I never told Lecretia about this prognosis. After seeing it, and storing it away in my memory, I tried to put it out of my mind.
Shirley had done some reading of her own, and had seen some promising literature on intravenous vitamin C treatment. This is where you’re hooked up to a drip which feeds you a superdose of vitamin C for a couple of hours. The treatment wasn’t sanctioned by the hospital, but we were willing to try anything that might help, so Lecretia enrolled in a Wellington clinic out in Newtown, where she ingested the vitamin for an hour or two a couple of afternoons a week.
After a couple of weeks of treatment, I got a call from the clinic.
‘I’m afraid there’s been an incident with Lecretia. She collapsed in the bathroom and fell to the floor, hitting her head. She’s been taken by an ambulance to the emergency department at Wellington Hospital.’
‘What happened?’
‘We’re not sure. We found her on the floor of the bathroom. She’d been unconscious for a while. But she’s on her way to the hospital now.’
I raced to the emergency department to be with her. On the way I called Larry and Shirley, who had both returned home to Tauranga, and told them what had happened. They booked flights at once.