Carla Arkless in Mexico. (Photo: Supplied / Additional design: Tina Tiller)
Carla Arkless in Mexico. (Photo: Supplied / Additional design: Tina Tiller)

SocietyDecember 13, 2023

How an advance care plan can enhance your life

Guest Post
Carla Arkless in Mexico. (Photo: Supplied / Additional design: Tina Tiller)
Carla Arkless in Mexico. (Photo: Supplied / Additional design: Tina Tiller)

A posthumous essay by palliative care nurse Carla Arkless. 

If you’re reading this, it means I have now passed on to the next adventure. 

In December, 2021, I set out on the trip of a lifetime. With my son Sean having long left home and our dog JJ having died at the ripe old age of 17 and a half, I finally felt free to travel again. For months I cycled through Portugal, Spain, Italy and Greece, before heading to Zambia to participate in a volunteer project rescuing orphaned elephants. I headed to Turkey, later visiting Canada and down to the United States. I cycled to San Diego, Mexico and down into Central America, flew over to Colombia because I couldn’t get there over land.

Once I got to Colombia, pain in my abdomen meant I could only cycle for three days. I got the bus to the nearest big city, Medellín, and then flew back to London to recuperate for six weeks before heading back to continue – at least that was the original plan. After about a month of being in the UK, my abdomen continued to become more painful and distended, so I went for a scan. The initial CT showed an ovarian mass, so they did a chest CT which showed a right pleural effusion. Their presumed diagnosis was metastatic ovarian cancer. 

Carla Arkless in California. (Photo: Supplied)

In May, I got the official diagnosis: pseudomyxoma peritonei with pleural involvement. It’s a rare kind of cancer that usually originates in the appendix, and at some point the cancer cells are released into the abdominal cavity where they slowly multiply. In my case, they had attached to my right ovary – which had started to grow quite quickly. This type of cancer doesn’t spread to distant organs – it remains within the abdominal cavity. If allowed to run its course, the tumour continues to grow until it causes mechanical difficulties such as bowel obstruction. 

In the UK I was offered non-curative surgery that came with a 3-5 month recovery time, which may have given me up to a couple of years problem free – but no guarantees. Without surgery, I was told I would run into problems with nutrition in one or two months (as it turns out it was over three) and have a prognosis of three to six months. I chose not to have the surgery, but to be managed conservatively with palliative care. Time was not something I felt I needed to extend at all costs – at 54, I’d done a lot of living and, if my time was short, then that was OK with me. 

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This is something I had thought about already while writing my own advance care plan. Prior to my travels, I worked for over two decades in palliative care, and saw how often patients did not know what they wanted to happen if they got more unwell or had an acute event. If a crisis occurred, it would often cause additional stress for the whānau and patient. I started to ask people about their priorities long before I even knew the term advance care planning, so people could make significant health care or lifestyle decisions having thought about it before. 

Advance care planning provides a framework for thinking about and talking about what matters most to you, what your values are and how they influence how you want to live your life. It’s especially useful as a tool to support conversations with family and friends, not only about your own life, and your values, but theirs too – and to reduce the stigma or taboo about talking about serious illness, death and dying. 

Carla and her son Sean. (Photo: Supplied)

My plan was also an opportunity for me to share my preferences about, for example, use of plastic and other environmental concerns. I was more interested in quality of life than length of time, but getting the surgery would have also involved IV nutrition using eggs, which I’m very sure would come from hens who are not well looked after. For me, I did not think that treating my illness was more important than animal welfare. My connection to the world, the environment and other people, is important to me and I am very mindful of my impact on the environment. I have eaten a vegan diet for many years, and I avoid buying things in plastic where I can.

If I had not thought about these things ahead of time for myself, the whole process of investigations and decision-making would have been much more stressful and difficult, and I don’t think I would have had so much control over what eventuated.  I ended up declining the surgery as it did not fit with my values and priorities, and I was grateful for this foundation on which to make significant decisions when the time came. 

For those looking to make an advance care plan, start by thinking about what’s important in your life as a human being. What does living mean to you? What are your values? What brings you joy, happiness? I think these foundations are particularly important, because when diagnosed with a serious illness it is really easy to lose sight of these things. If you’ve thought about it and maybe even written it down, you are more likely to remember that there are good things in life when your world seems to be falling apart with an illness diagnosis. 

Carla Arkless: ‘When diagnosed with a serious illness it is really easy to lose sight of these things’ (Photo: Supplied)

The next step would be to consider those things that would take priority if you had a serious illness, or if time might be short. If you start with a foundation of joy and happiness in living, then this question becomes just a part of the whole picture, not the focus. The last step should be to consider specifics to do with illness or disability. If you’re still well, such specifics can be outlined if and when needed, but building your foundation as outlined above will make deciding these easier when the time finally comes.

I have to acknowledge that my professional clinical experience has also made the journey significantly easier – I understand things pretty well, and can ask informed questions. However even without that knowledge, the advance care planning process has helped enormously. Without it, this process would have been much more difficult for me, and also for my son. The fact that I have been very clear about what I want means that he had the opportunity to consider it all and ask questions when I was well, which made it much easier once I became ill. 

My advance care plan provided a framework for documenting what is important to me in my life, and especially if I became unable to direct my own care. It also allowed me to focus on living and wellness and joy, which made the illness part secondary. We get so wrapped up in the illness journey, we forget to also live life. Thinking about wellness and living well, being happy and joyful, that’s important as part of wellbeing. I would encourage everybody, whether well or with a serious illness, to focus on life and living. 

If anyone would like to do something special in my memory, then please consider a day, a week, a month (or whatever) without buying plastic, without eating commercially produced meat, dairy, or eggs, without using your car, or something else to support the recovery of our beautiful planet. Make memories with people you love and get out into nature – breathe with the trees, smell the flowers, feel the connection we all have with the natural world. Don’t wait to do stuff you want to do. You never know when you’ll no longer have the chance.

Keep going!
Image: Archi Banal
Image: Archi Banal

SocietyDecember 12, 2023

What do you give your kid’s teacher to say thank you?

Image: Archi Banal
Image: Archi Banal

For when flowers or chocolates don’t feel quite enough. 

“I was thinking about a trip,” says my son. “To the moon.”

“What about flowers?” I suggest. “Chocolates? A book?”

My son frowns. His face is small, skeptical. “Or superpowers,” he says. “If we gave her superpowers then she could get anything she wanted.”

“That’s true,” I say. “Or we could get her flowers?”

“How is that enough?” he says, plainly. 

He’s right, of course. How can that be enough?

What do you buy a teacher to say thank you?

I still remember my first day of school. My teacher shook my hand at the classroom door. He was too tall for the doorway and had to stoop. He smiled at me. An open, welcoming smile. (He was painfully nervous that day, he told us years later. It was his first teaching job and he had to face thirty of us kids, plus thirty sets of parents.)

“Hello! It’s so good to meet you, Gemma.”

I remember those words. That handshake. The fact that he knew my name. 

I sat next to a dark-haired boy at the back of the classroom. Another introverted melancholic. We sat together all year. He taught me how to do sums; I taught him how to draw a horse with crayons. At morning tea he gave me his raisin box for half my roll-up. It was a happy mutualism. The teacher had carefully engineered it this way. The whole class room was, in fact, carefully planned: noisy kids in the front where he could keep and eye on them; social butterflies carefully dispersed so they didn’t distract each other; introverts with other introverts. 

Our teacher taught us for eight years. We learnt to read, to write, to do sums. We learnt about the Roman empire and the Greeks and how photosynthesis works. We learnt about Antarctica and our teacher organised a trip to a Watties storehouse so we could stand in the cold for 20 minutes in hats and mittens and experience what Antarctica might be like. We learnt Hamlet and Taming of the Shrew. We learnt anatomy. We learnt how to kayak. 

I met up with my old desk mate at university years later. We sat in the crowded student cafe, at the back, and talked about our time at school.

“Do you remember when our teacher gave us a book each as a reward for learning our 12 times tables?”

“Yes,” I said. I’d been given Oliver Twist. I was nine years old. 

I still have that book. I still remember doing the quiz our teacher set to see if we knew our times tables. I remember receiving the book, how he shook my hand. It felt like such a milestone, like I’d achieved something amazing. I felt like I could do anything.

‘You can do anything you want,” says my English teacher. It’s an all-girls school. We are 15. We are grumpy and hormonal. It’s December and we are also tired, and hot. 

“You can do anything you want!” says my English teacher. “You can be anything you want!”

We lounge across our desks. Our uniforms are itchy. We are grumpy. We are hormonal. 

“Repeat after me,” she says. “I can do anything I want! I can be anything I want!”

Slowly, grumpily, we repeat it. Again and again. We are tired. We are hot. We are hormonal. We mumble. We moan. But we say it, anyway. 

Years later, I remember that day. I remember those words. I remember that teacher. I remember her relentlessness, her drive, for us. She gave us more than King Lear and Katherine Mansfield. She gave us an appreciation for our own power. 

What do you get a teacher to say thank you? This is a question for lots of people at this time of year. In Facebook and WhatsApp groups. At the school gate. Among groups of uni students. There are suggestions of wine, chocolate, massage vouchers. It’s a tight economic time. No one has a lot to spend. Yet it all seems – money constraints aside – inadequate, insufficient.

How do you truly thank someone who has persevered in teaching a child to read? Trying technique after technique, again and again, looking for more things – tools, ideas, approaches – to help? 

How do you truly thank someone who has read a child Pippi Longstockings and Danny, the Champion of the World and shown them how to paint murals and make clay mountains?

How do you truly thank someone who has given a child a love of numbers? Taught them how to notice patterns in nature? How to quantify pieces of the world?

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How do you truly thank someone who has helped a child make friends? Who has noticed when they are unhappy, or alone, or not feeling well? Who has held their hand when they felt afraid? Who has been there day after day? 

How do you truly thank someone who a child is likely to remember for the rest of their life? 

Here’s one answer: A trip to the moon. 

Here’s another. Picture a child who runs to school every morning for a year, parting with a quick wave, not looking back. Picture a child who comes home every afternoon brimming with new information: a book, a painting of a sunset, a new way of looking at the world. Picture a child who, decades later, when this time is nothing but a memory, might think of something you said – a phrase, a word, a lesson – and stop and smile; take something from it and use it, because now they have a place in the world. A place that you helped them take. 

Society