My name is Emily, I am 31 years of age and I live in Melbourne, Victoria. Three and a half years ago, I was diagnosed with a rare and aggressive form of cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs within my sinus and skull bone known as NUT Midline Carcinomacancer arising from tissues that line organs.
When I was diagnosed, I was a fit and healthy 27-year-old and certainly hadn’t factored cancer into my five-year plan. For context, NUT Midline Carcinoma often responds poorly to standard treatment interventions available in Australia; there is currently no known cureno evidence of disease; complete cancer remission and whilst other recorded cases are scarce, it generally sees an average life expectancy of six to nine months.
It was at this point, that I discovered the importance and strength of one’s mindset. Very quickly, my priorities in life had changed with a big refocus towards my health. Despite the situation I found myself in, I was determined to be an exception to the rule; I couldn’t identify as someone who was sick.
Following my diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results, I underwent chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells, radiotherapy and immunotherapya treatment that uses a person's immune system to fight cancer, all with mixed results. In the initial stages of treatment, I was also encouraged to undergo molecular screeningtesting for cancer or conditions that can lead to cancer before symptoms appear, also known as cancer screening, to better define and understand the gene type and classification of the tumoura tissue mass that forms from groups of unhealthy cells. This screening fortunately identified a potential treatment option not available in Australia, designed to target the specific mutation of the tumour; what soon became known was the potential effectiveness of this targeted treatment, with recorded effectiveness demonstrated in a (very small) number of patients overseas.
Already facing a terminal diagnosis, I was able to access this targeted treatment through the Therapeutic Goods Administration’s Special Access Scheme. I have remained on this treatment since early 2021 and have seen good results up until very recently when tumour metastasiswhen the cancer has spread to other parts of the body, also known as mets was discovered in my brain, as well as progression of my primary sinus tumour, the latter requiring additional radiotherapy.
Setbacks are tough and facing a future of many unknowns is, at times, difficult; I will never know what it’s like to be “in remission”, “cured” or “cancer free”. Despite this, I’ve continued to fight the norm of what being sick “looks like” and I endeavour to live every day with purpose, with a particular focus on being present, despite living with a terminal illness.
Often used as a metaphor for life, just as the sea can be calm or rough with its fair share of ups and downs, so can life. It’s how we ride those waves and how we deal with the challenges that makes a difference; I remain hopeful that with continued effective management in the short to medium term, I will survive to see curative treatment options for rare cancers like NUT Midline Carcinoma made available the future.
For now, however, my goal is to continue to be the exception, continue to be present and continue to demonstrate to others that despite the uncertainty and turbulence that is cancer, it is possible to live a full and meaningful life.
