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Joanne’s Journey

Initially thinking that she was suffering from back pain, something that runs in her family, Joanne only became alarmed when she found a lump on her neck. In June 2019, at the young age of 40, Joanne was diagnosed with Stage 4 Metastatic Lung Cancer with the primary site being left lobe. After a series of tests, she discovered that the cancer had spread to her bones. When she received her diagnosis, Joanne was in disbelief, feeling numb and alone. “I never worried that the back pain was cancer- I was convinced it was from a previous back surgery- so when I was wheeled onto Parkes East 4 ‘Oncology’ I remember looking at the sign outside the ward and feeling like the situation was surreal, foreign, unreal. I knew I was in trouble”. Despite the sad news, Joanne’s main worry was for her family back in Ireland and in Western Australia.

“My family live in Ireland, and my brother lives in WA. I had an overwhelming worry about how I would deliver this news to them. I worried for them- especially with them being so far away. I knew they would be devastated, and I hated the thought of them having to make that long journey over with nothing to think about only my news. I’m not sure who I phoned first, but it was my brother who arrived first to support me as I faced a battery of tests. I don’t know how I would have faced that first week without him. He sat by my bed and held my hand each time the doctors came to deliver yet more ‘bad news’. My sister took on the role of my night nurse post-surgery. I really appreciated her strength during that time. Once the genetic profiling was complete, I began Targeted Therapy which was very successful for a time”.

Sadly in 2021, Joanne’s medical team discovered that her cancer cells had migrated to her cerebrospinal fluid which circulates nutrients and chemicals to the brain and spinal cord otherwise known as Leptomeningeal disease.

“At this point, I ended Targeted Therapy and began Chemotherapy/ Immunotherapy”. I was admitted again in June 2021 with chronic pain and I was experiencing a loss of power in my legs, problems with my vision, and seizures that resulted in several falls. When in hospital, I experienced 6 code blues and had surgery to fit a shunt in my brain. It was incredible frightening”.

Joanne’s advice to other cancer patients is to, “Lean into your community. Let your family in and let people help. It’s always good to have another person who loves and cares for you there to listen to the medical conversations. Those who love you want to help and sometimes that’s their way of showing their support. I remember being overwhelmed by how much people cared for me. I didn’t have to reach out but was met by so much love and a willingness to help not only me but also my family”.

My advice to people would be to listen to your body. Don’t ignore anything that you feel happening in your body and never feel silly to report anything.”

Joanne has two main doctors and a Cancer Care Coordinator at Prince of Wales Hospital.

Woman with mother at hospital“I see Dr Melvin Chin (Oncologist), Dr Helen Herz (Palliative Care), and Dari (my Cancer Care Coordinator)- all three are amazing people, and I am so grateful that they are on my team. My care has been extraordinary. In one of my first conversations with Dr Chin, I remember telling him that I prefer to hear news out straight. Ripping off the band aid and getting to the point helped with my ability to process what was going on and to engage in a more constructive conversation about the illness. He has always been upfront with me and as a result, I feel like I am involved in constructing my treatment plan with him- rather than it being something done to me – it helps me to deal with having a terminal illness. Dr Herz has always worked on my medication so I can live my most comfortable and best life. And what can I say about Dari? – only that she has been incredible in looking out for me. As a teacher, I have always thought of myself as a person that is willing to go ‘above and beyond’, meaning that I would go out of my way to help those that I teach. Since I have been diagnosed, Sarah, Grace and all the wonderful nurses who have cared for me in POW Parkes East 4 have been the kind of people to go above and beyond also to ensure that I received the best care and that my needs and my family’s needs were always met. Together they make an incredible team making even the most difficult conversations and undignified symptoms and experiences more tolerable. Each one goes out of their way to make you comfortable and feel empowered despite your circumstances. I cannot thank the nurses and doctors from Parkes East 4 enough- they are truly special people!”

Speaking about how cancer has changed her outlook on life Joanne says:

”Having cancer changes your life in ways that are good and bad. The bad we are aware of; the symptoms, the treatment, the diagnosis, and let’s not forget the ‘scan-xiety’ etc. but having cancer also changes your outlook. I have learned to become more aware and present every day, concentrating on what is important in life. I did try to continue working in an effort, to feel ‘normal’, but, quickly realised that stress only compounded my symptoms and I retired to focus on being well. Never did I think I would be a ‘retiree’ at 42! Now, I try to be more in tune with myself and my environment, be social each day, and go for a swim in the ocean each week to just appreciate how the water feels on my body. It gives me a real sense of calm and peace- something I didn’t stop to do before.

Having a terminal diagnosis makes you think about and appreciate the time you spend with those you love. I feel very blessed that my parents were able to move here after I was diagnosed. Their support has been incredible, and I couldn’t have done any of this without them. My Mum and Dad left their lives in Ireland to come and help me. I am so grateful for all that they do. I have learned to be more present in all my relationships and interactions. I listen more- all of which has brought me closer to people. I have concentrated on creating special experiences for my family and friends such as a night in a hotel in the city, a breakfast or dinner in a nice restaurant or cafe, or a trip up the coast etc. It’s my way of treating those I love and creating memorable experiences.”