Joanne’s Story
My name is Joanne MacDonald and I describe myself as being in a significant long-term relationship with Arlene Chan. I’m a fan. There are many stories like mine. This is a little of our shared story.
I first met Arlene in 2001. I was 39, a recently single parent with two primary school aged children, just weeks into a new job. Arlene appeared at my bedside when I had hoped mastectomy and reconstruction would end my encounter with breast cancer. She smiled, but was very straightforward. Because cancer cells were found in one of twelve lymph nodes, Arlene recommended adjuvant chemotherapy. Because I was young, otherwise fit and healthy, she said she would “hit me hard”. She did. The night after the first dose, I lay on my bathroom floor, wiped out from hours of puking and remember her voice – ‘call if there are any problems.’ It was mid-night, yet she answered the phone immediately, calmly giving me a list of specific instructions… crisis resolved. This early episode became, for me, a template for living with breast cancer – get expert advice, simplify life where you can, and doggedly hold on.
I waded on through six months of chemotherapy, side effects and bonejarring treatment for neutropenia, then five years of Tamoxifen—more side effects. I saw Arlene in her practice – every three months, then every six months, then every year. I looked forward to our appointments. She was inscrutable, yet warm. Examinations were reassuring – her fingertips earnestly palpating to search beneath my skin in lines running down either side of my neck, across my collar bones, arm pits, arms, over my ribcage – her touch, light and fast like the pitterpatter of rain on my skin. And I liked her flair – though small, she radiated strength in her fabulous collection of towering stilettos, wielding her fountain pen to sign off scripts and charts in distinctive purple scrawl, ink all the way from Hong Kong.
Eight years after my original diagnosis, bone pain means I ring for an urgent appointment – ‘I wasn’t expecting you’, she says, her restrained surprise mirrors my shock. So much of this diagnostic process feels darkly familiar. I ask about prognosis, knowing it’s much worse. She deftly batts my question back, “What are you thinking?” I recognise Step 1 of communicating bad news – Establish the patient’s expectations. Then I grimly imagine two, maybe three years of stumbling through a series of harsh chemotherapies, becoming sicker, more debilitated. “I think I can get you ten good years. You have a life limiting disease, but we are not yet at a point where we could consider this the terminal phase.” She meets with my children, now teenagers, and explains, “The bad news is your Mum has a chronic health condition, not so different from someone who has diabetes or a number of other illnesses. The good news for me is that I am going to be seeing a lot more of your Mum”. I notice her careful use of words, her self-assurance. She instils hope by projecting a realistic view of the future.
It is 2009, the year Breast Cancer Research Centre-WA (BCRC–WA) begins. There are new options on offer, the science is growing rapidly. Everyone is less anxious once there’s a plan to hold onto, and the plan is to join the clinical trial of a biologically targeted drug…if my cancer fits the profile. A sample of my original tumour is sent to England for analysis. Tests come back equivocal. There is further reading by a Professor of Histopathology somewhere in the world. Next, a test examines the mitochondria, way inside the cell. The technical aspects are so complex, even with the aid of pages of Arlene’s hand drawn diagrams, I find it mindboggling. A flurry of activity hides the waiting. With kind and gentle expertise, a radiologist plunges a biopsy needle through seven centimetres of bone in my hip. In day surgery, an infuser port is inserted. Finally, the necessary protein receptor is found. Chemotherapy, plus the trial drug, can begin. I am introduced to the nurses in the Breast Cancer Clinical Trials Unit (BCTU) down the hall. Warm, practical women who welcome me into a squashed cubicle to collect my numbers – weight, blood pressure, temperature; and ask lots of questions: What other drugs have you taken? On a scale of 1-10, how tired are you? What rating would you give that side effect? On top of data collection, authentic snippets of life are shared. Jeanette encourages my travel plans, even providing restaurant recommendations in Sienna! The routine of living within a three weekly treatment schedule, becomes part of my new normal.
Three years later that trial ends, although my treatment continues. In 2016 I huff and puff through another short-term study on the impact of exercise in fatigue management. In 2017, another progression is identified. But I continue to surf the wave of new science, offered an opportunity in another trial of another new drug. Appointments with Arlene, now a Professor, are back to every three weeks – once again, life on trial contains me. The rabbit warren of spaces tucked in downstairs under the chemist at Hollywood buzzes with new offices. Experienced wise women from the chemo suite take on the new role of breast care nurses. Research staff are checking protocols, the phlebotomist is in a cupboard drawing blood and I’m back under the wings of then trial nurses who are still gathering numbers and presenting questionnaires. Genuine greetings, staff acknowledging each patient, are part of the buoyancy of this system. You don’t feel like just another case. So, I’m back to looking for my new rhythm – “Goodbye coffee, goodbye laksa; hello side-effects, a trillion more scans and endless vials of blood”. In a few months, things begin to settle – and the window for an adventure opens up.
Joyfully I stride around the Isle of Skye with my now adult daughters. I am a person with breast cancer, I’ve tried not to be defined by it. I am responding to challenges that feel way down the list of life’s worst possible complications. As a long-term patient, I’ve had surgery, chemotherapy more than once, genetic counselling, radiotherapy. I’ve taken old school heavy hitting drugs, hormone inhibiting drugs, and sampled from the raft of promising new drugs. Along with loving support from my parents, my daughters, a network of friends, and my GP, counselling has provided me with a safe space to untangle my feelings, find grounding when I need it. After diagnosis – life on trial means frequent scans. Bone scans, CT scans, MRIs, pool gated blood studies, heart scans, port scans, bone density scans…previously films piled up into towers. Appointments used to be all over Perth.
Under Arlene’s care, I am secure in the knowledge that my results will be interrogated, translated and discussed. Our exchanges are reciprocal. We each listen carefully. While our conversation is often short, she has a waiting room full of patients; I ask her questions, she asks me questions – we both do our best to be clear and detailed. She is responsible for the plan; I am responsible for consenting and keeping her informed so necessary adjustments can be made. My experience of life is inextricably linked to her. I am 59. Although often unpredictable, life goes on… and aging has its own side effects. I celebrate all occasions. Precious moments are held close – the birth of a grandchild, the death of a parent. I’ve learnt to slow down. Look for grace, reflect, savour, persist through the hard patches. Amidst the ongoing threat of Covid, like everyone, I am grateful to be in WA – but I also recognise I am practiced at adapting; living with uncertainty is familiar. Each new normal is to be cherished. It is only ever a pause. A moment before the next moment. Over all these years Arlene has continued to harness her relentless curiosity and optimism, pursuing her research agenda and transforming knowledge into advances in patient care. She has gathered andsurrounded herself with the expertise of so many like-minded and committed colleagues. It takes many teams of people to deliver the range of services that now make up BCRC–WA. At this level of practice, medicine is more than a job, more of a calling. This description is a small reflection of the scope and generosity of her passion, her energy, her focus. The attributes that gained my trust in 2001; those first operationalised in the vision of BCRC–WA in 2009, that have now grown these magnificent spaces, to include these magnificent people.
On behalf of all the patients grateful for their relationship with Arlene and all the other experts at BCRC–WA, for those who recognise the comfort of a home base for their treatment, a one stop centre, and all those future patients yet to benefit from all this work …thank you.
Share Your Story
Are you a patient of the PBCI and would like to share your story with breast cancer as part of our Stories of Hope series on our website and Newsletter?
We love hearing our patient’s stories and sharing them with others at the very beginning of theirs. For more information on how to be involved, contact us.
