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.
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.
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.
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.
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.
