The overhaul of the NZ health system promises a reimagining of cancer services. Dr George Laking, medical oncologist, propels himself to 2025.
Ki te kāhore he whakakitenga ka ngaro te iwi Without vision or foresight the people are lost Kīngi Pōtatau Te Wherowhero Tāwhiao
Although I work at Te Pūriri o Te Ora Auckland Regional Cancer and Blood Service, this is a personal view. The stories are true though.
Here’s how a reformed health system will look, according to Wednesday’s white paper:
our health system reinforces Te Tiriti o Waitangi principles and obligations, with rangatiratanga shaping care design for Māori, so Māori models of care flourish;
everyone can access a wider range of support to stay well in the community, with more services designed around people’s needs and which better support self-care;
emergency and specialist care is accessible and consistently outstanding, with a national network ensuring excellent care doesn’t depend on where you live;
digital services are far more accessible, with care close to home far more common;
health and care workers are valued, supported and well-trained, supported by shared values, better long-term planning, and collaboration between health organisations.
This future is within reach – but requires major changes in how our health system operates. – Health Reform White Paper Summary 21/04/2021
Tēnā koutou e te whānau, ko mātou ko te Ratonga Matepukupuku o te tau 2025 – we are the Cancer Service of 2025. We’re visiting your place – it could be your local health practice, marae clinic, or perhaps even your house. Remember how in 2021 you had to drive for an hour across town, then queue in front of the hospital, then find a carpark? I remember that time you had to borrow money to pay for petrol to drive to the ATM to get money to pay for petrol to drive to the Hospital. Now we come to see you. With a broadband connection, we can access all the health records. With closed-system devices, we can bring chemotherapy as well. Of course there’s still a hospital, but it’s no longer the focus of everything we do. We need it for things like scans, and some specialised treatments and operations of course. It’s become a lot easier to find a carpark.
It was good you contacted us on the telephone hotline when you first noticed symptoms, a couple of months back. We alerted your family doctor, who made sure you were checked out. We hoped it wouldn’t be cancer but when it turned out that was the case, the surgeon was ready. It’s possible you’re already cured from the operation, but we’re advising chemotherapy to maximise the chance of that. Treating cancer is what we do – but it’s no longer the only thing we do. We also have an eye on prevention, screening, and diagnosis. We used to see a lot of people whose cancer had gone beyond the chance of cure, because of delays in diagnosis. We said that was very sad, but nothing to do with us, as our job was only in the treatment. It felt unbearably lame to keep saying this year after year, so we decided to increase our presence at the start of the cancer journey.
Being out and about across the district has brought us more friends. The Cancer Society remains a big part of our community connection, but we’ve diversified. You can’t weave a social fabric from just one thread. So now we have links into Rūnanga, Pae Kaumātua, Whānau Ora collectives, community trusts, sports clubs, churches, and other organisations. As much as anything it’s a way of saying “we’re here, if you or someone close to you has a question about health (could it be cancer?), then contact us”.
We can see the effect of what we are doing because we have access to the data in real time. For many years the hospital kept a note of every time you visited us and everything we did. That’s how we got paid. But we seldom used the information to keep track of what we were doing, and improve it. We were failing on equity. Access into our service was uneven, especially so for Māori and Pacific people. Now we have taken our work out of the hospital, and we can see the effects as they happen. We can see the equity situation has improved – we are consistently seeing a lot more people from communities we previously under-served.
We’ve learnt a lot. That felt strange at first – we’ve always taken pride in studying and being knowledgeable. Then we realised that large parts of the education we received in Aotearoa New Zealand in the 20th Century and around the millennium were deficient. So we organised a remedial program at work, to cover topics including the history of Aotearoa, Te Tiriti o Waitangi, Te Reo Māori me ōna Tikanga, the meaning of racism, and skills in communication and cultural safety. We got to know our own culture as health professionals. We learnt to recognise the aspects of our culture at odds with our purpose of increasing the health of the people. And we changed those aspects of our culture for the better.
And finally, our jobs aren’t always what you might have expected as recently as 2021. We used to be strict about demarcation of professional roles. Much clinical decision-making was tightly held by doctors. In the end, for many of us the workload became crushing, with professional burnout. We realised that increasing our reach into the community and across the continuum of cancer required us to share the workload across professions. That’s why today you’ll likely be meeting with an experienced cancer nurse working at the top of their scope. They are skilled in communication, carry the specialist technical knowledge and briefing relevant to your condition, and can astutely recognise when the situation requires a change of approach. They can call for advice or support where needed from a larger pool of nursing, medical, and other health professional colleagues. And we made a point of employing Māori and Pacific people into expert clinical roles, so our workforce corresponds to the communities we serve.
On Wednesday April 21, 2021, there was a reform of health services. At one level, it was a re-assignment of responsibilities and financing. At a more basic level, it invited a re-imagining of how we would actually do our work. Was the reform fated to be just another reset of power structures at the top level? Or could it open a path to culturally safe, effective care, integrated into the community? In April 2021, we felt this reform would have its best chance of succeeding if it could help to get our services out of the hospital, to engage with the continuum of cancer not just its treatment, to integrate into communities, to keep track of what happens as it happens, to train for equitable and culturally safe practice, and to employ a workforce that mirrors the people it serves and works at the top of its scope. What would it take to realise the imagined future of 2025? Without vision or foresight the people are lost. In the end it was the return to a collective vision that helped us find our way.
I went into lockdown newly married, exhilarated. I emerged heartbroken, betrayed, traumatised. Polly Lang* writes.
The Sunday Essay is possible thanks to the support of Creative New Zealand
Original illustrations by Lena Lam.
Not long before the first lockdown in 2020, I got married. It was an evening wedding, a big party with some formalities attached, that look place late in the summer. We first decided to get married in 2018. I was initially suspicious of marriage – it seemed like a legal formality that wasn’t necessary these days. We could live together, share the challenges of raising our blended family, be out and proud in the world and weather the occasional instance of homophobia because we were insulated by life in the socially liberal capital city. Why get married? But my partner was a true romantic and had been on a quest for the perfect love her whole life. She told me that’s what we had and so I came round to the idea of marriage. I was excited at the prospect of both being a wife and having a wife.
We went to a movie premiere in Auckland and I realised that would be the most perfect, hilarious occasion on which to propose. The lobby was littered with celebrities and Auckland socialites, who stalked around the room making sure they were seen, their eyes directed slightly above everyone else’s so they didn’t have to make eye contact unless it was worth their while. It was the social pages of Metro in real life. We both laughed at the Auckland pretension. Wellington wasn’t like this.
It was too hard to propose at the screening so I bided my time until we got back to my sister’s house. We got into bed and lay down facing each other like we always did. I said to myself, do it, now is the time. But I was too slow and she got in before me. I was annoyed, but delightfully so, because it meant that we were perfectly aligned, that the thread we knew bound us together was humming, it was so taut. It made a great story for our celebrant to tell at the wedding.
It took a while for the wedding to happen, partly because of busy lives but also because my dad got sick and died in 2019. For a while after he went, I kept waking up in the night and one of the songs he chose for his funeral, ‘No More I Love You’s’ by Annie Lennox, instantly played on repeat in my head. You can’t get married when the language is leaving you. One thing I was happy about was that before he died, I thanked Dad for accepting my partner into our family. He had struggled at first with his daughter being in a same-sex relationship and it meant a lot to me that he’d been able to overcome that.
2019 was a year of grief. The new year would be different.
The wedding day dawned a little overcast, a bit Wellington windy, but it settled down by the afternoon. The evening was beautiful and still, which felt like a blessing. We stood in front of a picture window overlooking the sea and spoke our vows to one another as the evening sun shone on the water. Beautiful weddings make people cry and a man in a kilt had tears in his eyes. Everyone said there was so much love in the room. I felt that love. So much love.
By then, this weird, alarming thing called coronavirus was well advanced on its global journey. Not long before our wedding, the first local case was announced. I had caught a summer cold and joked that I had it. I remember the virus feeling like a creeping shadow but one that I thought would not touch me.
On March 13 we heard Weyes Blood and Aldous Harding perform at the Michael Fowler Centre for the Festival of the Arts. I adored Weyes Blood and I felt so lucky that the show had gone ahead when others were cancelled. Weyes Blood was a goddess, with the most perfect voice I had ever heard. From her first song tears spilled down my face, I couldn’t stop them, I was so viscerally moved by what felt like a spiritual experience. My dad came into my head and I cried for him, for loss, for beauty, for fear of this world, and for love. My wife held my hand.
The country was placed into lockdown. One evening before it started, my son and I drove into town so I could collect everything I needed to work from home. I felt nervous, unsettled, but also a bit excited because it felt like I was part of history. In my haste to get back home I backed into a low bollard in my work’s carpark and crunched the bumper. The tailgate wouldn’t shut properly and the sensor beeped all the way home. It would keep beeping till well after lockdown ended.
One of our wedding guests was a new, young friend. She was honoured to have been invited and had a fun night drinking bellinis and flirting with the older women in the room. When lockdown was announced we invited her to stay with us because she would have been isolated in her flat. My son was to stay with his father the whole time as we felt it would be safer for him to not move between houses. This was a wrench for me but I decided it was for the best. Therefore, we had a spare room.
I value my own space and ordinarily would have been very reluctant to have a house guest for an unknown period of time. But I really liked this new friend, who had become a regular part of our lives. I knew she admired what my wife and I had together. She wanted the same for herself. While it was she and my wife who shared the banter, played music together and really hit it off, there was a closeness between the three of us that I really liked. I felt secure and comfortable with this new friendship.
I remember the day she arrived, her little car full of musical instruments, clothes, food and fun. I said a sad goodbye to my son. I didn’t know how long he would be gone but at least he wasn’t far away. Did we know how long lockdown would last then? I don’t think we did. But the days were sunny and still. Autumn is my favourite season and that year it was day after day of perfect weather.
It wasn’t long before I started to feel uneasy. Looking back, I can see this began on the very first night. I love nail polish and had got all my colours out on the dining table for us to choose from. Our friend was not a nail polish wearer, but she decided she wanted some. I was the nail technician in my house and always did my wife’s nails and my own. I was the expert at applying the polish. But my wife grabbed the bottle and clumsily brushed it on our friend’s nails.
I’m not a prophet and I didn’t then know this was a sign. And so when my wife asked me if I was interested in becoming intimate with our friend, I agreed. I thought this would be fun for us as a couple, an experience that we would share together to enhance the beautiful intimacy we already had. I didn’t know that I was about to participate in something that would lead to the destruction our relationship and the life we had built together.
Threesomes are overrated and for me, this was an underwhelming experience. Tending to a passive, nervous participant was not what I had in mind. But, hey, it was worth a go. Moderate boredom turned to apprehension when we all went to bed that first time. Fitting three people in a bed is tricky and I remember arranging my pillow so I could sleep comfortably. When I finished doing that I looked up to see my wife spooning our friend. The linen-sheeted gap between us was vast, all out of proportion to the real-life space. We had always gone to sleep facing each other, limbs entwined, our lips touching. That is probably what we had done the night before. I remember the desolation that infused me. Later, when I told my wife how it made me feel, she said she was drunk and didn’t know what she was doing.
My unease turned to dread as lockdown dragged on, no end in sight. The sun kept shining and though I could feel its warmth as I worked in the sunny lounge day after day, I was so cold. To the outside world, I pretended everything was OK. But my world was falling apart, as I was trapped with two people who were embarking on a journey of betrayal and cruelty.
Every night there was so much drinking, sometimes drugs. We always used to go to bed together before lockdown but my wife kept sending me downstairs before her. I told her about my fears but my sorrow and anxiety was offensive and she was insulted. Did I not trust her? She sneered that I was jealous of their friendship. Though the situation had become intolerable for me, our friend stayed on when the country moved to level three and my son came back. She didn’t go home until level two, almost two months after lockdown started.
I thought that would be the end, but it wasn’t. They kept seeing each other. Sometimes I was invited, sometimes not. Then one night I met them at the pub with another friend, the best man at our wedding. After a few beers we went down the road to a music studio. We sat in the studio, they played music, talked shit, kept drinking. My wife held my hand while our friend, lost in intoxication, incessantly texted. They both got really wasted so I drove them to our home and tucked them into bed. I sat next to my wife as she fell asleep and I heard her mutter, “you are a good wife.”
I went back upstairs to prepare myself for bed. I saw our friend’s phone on the table. I thought she would want it in the morning so I picked it up to take to her. On the lock screen I saw notification after notification, all from my wife. So many notifications. My wife always slept with her phone under her pillow and I knew her passcode. I opened the messages and read an horrific exchange of betrayal, written as I sat with them in the studio earlier that evening. I got out of bed, grabbed my phone and car keys and drove down the road. I photographed the messages because they were evidence that my fears were not misplaced, that I was not going crazy and instead had been the victim of gaslighting.
I heard my wife call out to me as I left the house when she realised what I had discovered. When I got home I spent the rest of the night screaming at her. She cried guilty tears and said she was sorry. For whom exactly wasn’t clear. In the morning we went for a walk at the beach with our dog. The sea air calmed me a little and when we got home I quietly told our friend that I knew. She cried and said she was sorry, so sorry, that she was a bad person. I took her in my arms and said she was a good person who had made a bad mistake.
I wish I could say that my wife saw the error of her ways and did all she could to make amends. Instead, about a week later, she insisted that I invite our friend to her birthday party at our house. The invitation had to come from me so she would feel truly welcome. She felt so welcome that she stayed for hours and hours and at the end of the night played ‘Consider Me’ by Allen Stone on YouTube, which felt like a knife in my guts. My wife drunkenly slouched on the couch with a strange look on her face.
Guilt is such a consuming, corrosive emotion and it doesn’t always cause people to act well, especially when they have a pathological fear of being in the wrong. From that time onwards my wife dealt in outright cruelties, numerous emotional aggressions that operated like death from a thousand cuts, unexplained absences from home, and an absolute refusal to talk. She told me not to be sad so many times. She herself felt null and void so all my sadness did was fill the gap with bad feelings. How could I be so selfish?
For many months I did all I could to support my wife in her dark time while slowly withering away with grief. I stayed home with the kids while she was out, always out, I never knew where. I stopped eating and sleeping. Later, I realised that my response had been the same as my mother’s when my father died. We both couldn’t eat or sleep. I lost about 10kg. My lowest moment came on a Sunday when we had the kids. My wife went out in the morning and was away for many hours and unresponsive to texts or phone calls. I left the kids at home and drove to our friend’s house. She was there, hostile and drunk. Through streaming tears I watched her face distort with guilt-induced disdain and what looked like hatred. My grief must have penetrated her shield a little because finally she took me in her arms as I cried and cried.
They didn’t see each other for a few months after that. Or at least, this is what I was told. But in October they recommenced their betrayal, trying to keep it a secret. One night in early November, when it still looked like Trump might win the US presidential election, I asked my wife if she was seeing our friend again. She said no. Later I took her phone from under her pillow and saw this was not true. I kicked her out of the house and told her not to come back. That was the end of our love.
As I write this, some months after I left her, I still find it hard to believe it is my story. My wife and I were so close, until all of a sudden we weren’t. We were not perfect but I thought what we had was beautiful and that’s what I was told by her until the last moment. I truly had no idea when I stood with her that late summer day in front of our families and friends that I would never know what it was like to be a beloved wife. That my experience of marriage would be abandonment, cruelty and grief.
I am traumatised by my lockdown experience and the abuse. Every day is hard. I carry a heavy weight of sadness and anger in my stomach. My mouth is parched and my throat tight. My mind is only stilled by antidepressants, which I am taking for the first time in my life. I long to feel the peace and joy I see on other people’s faces, that used to be on mine. I also feel very stupid. How could I not have known that something was so wrong? How did I not know our relationship was fractured and vulnerable? But some people are good actors.
Emotional abuse is insidious because it is so often invisible to outsiders. One day when my wife and I were standing on the street outside our house, not long before I left her, my neighbour told me I was looking good. It made me think of how people with tuberculosis go through a stage of looking ethereally beautiful, with parchment-pale skin, sparkling eyes and blood-red lips, when all the time they are dying. I have sometimes wished the abuse had been physical, because then I could have had some hope of justice. But it’s not a competition between different forms of abuse.
I hate hearing people saying how much they loved lockdown. All that talk of sourdough and Yoga with Adrienne. I even hate the word lockdown. To me it means hope lost, desolation, abuse. I am now left with what feels like an existential challenge, building a new life from the ashes of my old one. People like to talk about things happening for a reason, as if that is supposed to provide solace when life goes horribly wrong.
As much as I’d like to, I don’t believe in this, or that karma will be my avenger, as others have said. Yet, there is a thread in that first cliche I can grasp, which is trying to fashion something good and meaningful from the bad, composing a story that has beauty in its sadness, strength amid the grief, as I write my way to understanding, one year on from lockdown.
