Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. ~Susan Sontag, Illness as Metaphor, 1977
How true! And after my sojourn with breast cancer I’m determined to try and keep my travels in the ‘kingdom of the well’. However, life can be a lottery: travelling on public transport, or teaching in community houses as I do, contact with the public can mean a random sneeze or cough transfers bacteria or virus. Then there’s genetics –– everyday it seems scientists discover links explaining why and how illness or disease occurs and whether family inheritance and/or environmental factors determines which passport you hold for the passage through life, and whether you can change your ticket. In the developed world, most of us are fortunate to choose our own lifestyle and our choices impact on our health.
Most people understand the value and importance of medical research and probably all know someone who has benefited from ground-breaking discoveries, many of which save lives, improve the quality of lives, and lead to huge advances in healthcare and public wellbeing. Various sciences need to be encouraged, developed, supported and sustained within our universities if medical research is to be advanced. There is an ever-growing patient demand for more effective treatments and care pathways to improve our health and wellbeing, and clinical science contributes greatly to ensuring the effectiveness of clinical care, but human guinea pigs are often necessary.
Almost ten years ago, I began volunteering for various research projects at Swinburne University of Technology and Melbourne University. The majority of the projects carried out by PhD students and their supervisors, and most related to Alzheimer’s disease, dementia and ageing, although there were some related to arthritis. Putting my hand up for a variety of relatively non-intrusive tests is not entirely altruistic –– with a family history of cardiovascular disease, diabetes, dementia, arthritis and cancer –– I want to encourage clinicians and research-active physicians to evaluate the nature of the information that they are provided with from academia and apply it to improve current practices.
Even before I was diagnosed with breast cancer I had joined Lifepool, Australian women finding answers, because my paternal aunt had a radical mastectomy in 1962. I lived with the fear/premonition that I was at risk. Unfortunately, there was no data collected on my aunt to be useful in my case. Breast cancer is assumed to be passed on through the maternal line, but it would have been interesting to investigate if there was a genetic or lifestyle link. Therefore, since my own diagnosis, the data they collect about me takes on greater significance. I have two daughters –– if there is the slightest chance researchers can prevent them developing breast cancer, I want to be part of that solution.
On Friday, I agreed to take part in a study exploring changes in blood flow in the brain of people of different ages using a new technique of inhaling carbon dioxide in room air. The project, designed to help researchers see how the brain changes with age, could lead to greater understanding of age-related cognitive decline in memory and thought processes. An MRI scan measured changes in blood flow in the brain while I performed finger tapping tasks, and then briefly breathed the carbon dioxide mixed with room air. There were many safeguards to this experimental research, a long checklist for suitability and a nurse and doctor nearby. The process took three hours because of the necessity of blood pressure and heart monitoring before and after the MRI, plus cognitive computer tests, breathing monitoring and an ultrasound of the cerebral artery.
Other trials, investigating memory, that I’ve taken part in over the years, involved green tea, special diets, herbal pills and numerous computer cognitive exercises and mobility tests. I’ve had caps sprouting electrodes gelled to my head, requiring a shampoo (but not set) before I left the building, and fasting and blood tests along with substituting different foods in my diet and keeping a record of food and drink consumed. All in the name of science with a lot of trust needed between researchers and participants. The other morning, I changed into partial ‘scrubs’ and through observation and conversation became part of a very different world for a few hours, reminding myself that all experiences are ‘grist to the mill’ for writers.
Lying in the MRI scanner, head encased in a plastic helmet to ensure I kept still, I listened as the machine grunted its way through the steps to capture images. The ear plugs limited the sound, but the vibrations and persistent grinding could not be ignored, even with a David Attenborough nature DVD to distract me. I managed to suppress claustrophobia and cope with the experience by letting my mind wander and my imagination run wild. That overactive imagination criticised in childhood does come in handy!
I reminded myself that being my father’s daughter, I could easily develop Alzheimer’s disease; this research is personal. My Dad developed insulin-dependent diabetes in his 50s, suffered minor strokes in his 70s and was diagnosed with dementia and in a nursing home by age 76, where he lived for the last seven years of his life.
Writing about his experience and my feelings and fears, and ultimately about Dad’s life to try and reclaim the father I loved from the shell of a man he became, helped me survive those seven years. They were tough emotional years because my husband, John was diagnosed with asbestosis at the same time and told his lungs were so bad that it would be unwise to operate to correct the effects of a broken neck from a car accident. He’d have to live with the pain and limitations of a severe curve at the top of his spine, which of course impacted on his deteriorating lungs.
John in his inimitable style came out of the orthopaedic surgeon’s office saying, ‘I have some good news and some bad news. He can make me straight, but there is more than a 50% chance I will be dead straight, and he doesn’t want to take the risk.’
My mouth went dry, my whole body trembled and I clung to John, the pain of his disappointment and my fear of losing him melding to make us an immobile statue of anguish, until the sadness and sobs I had suppressed over the months of hospital and doctor visits, exploded. A scene played out in many hospital waiting rooms. The future too bleak to contemplate. The two men I loved the most disintegrating, slowly, painfully, inevitably before my eyes: Dad mentally and John physically.
A few months after accepting there was no operation to help John, researchers in England devised a new method of operating on the neck not requiring entering through the chest wall. By this time John’s health had deteriorated too far for any operation to be successful or I would have done what countless others have done to find a cure, or save a loved one. Disregard expense and the upheaval and travel overseas seeking the best help available.
Instead, we devoted our days and nights to quality family time, making sure John always had something to look forward to. Stay focused on the future and take one day at a time, our mantra. Writing, my salvation –– I had to earn money and teaching writing helped pay the bills, but it also helped quiet the mind and work through a roller coaster of emotions. It enabled me to keep life in perspective and function each day as a mother –– protecting and nurturing John and our two daughters daily priorities. Unfortunately, assuaging the troubled mind does not always translate to looking after the body and on reflection several health crises, even before breast cancer, could have been avoided, if I had taken better care of myself. Hindsight a wonderful gift!
Two stories were published in Together Alone, poems and other stories for the Anti-Cancer Council’s Daffodil Day, Text Publishing, 1998. One was about John, from his point of view. The Daffodil Day arts awards have become a fixture each year giving a voice to those who have been touched by cancer, either personally, or through knowing someone travelling that road. I’ve been fortunate to win several of their awards for poetry and short stories over the years –– a sad reflection in one way that I’ve witnessed so many people struggle with ill health, but also uplifting because I’ve seen people survive and get on with their lives.
A poem I wrote about Dad was published in Memory Weaving, An Anthology of Dementia Journeys, Poetica Christi Press, 2014. This anthology developed from Manningham Council awarding a Community Development Grant to Wordsmiths, the local poetry group, to explore the issue of ageing, and families touched by dementia. After a series of workshops they sought contributions from the wider community and my poem, and the poem of one of my students were chosen to be included. What an amazing project, weaving the threads and experiences of so many lives to remind us that being human is not just a list of achievements or solely defined by what you do, but a journey creating memories of loss and love and individual histories deserving of being recorded.