“…when you discover that your life is going to be cut short and you’re going to miss so many things that you assumed you would experience what else is there to do than to make sure you live every day to the fullest, embrace all possibilities, epitomize hope and ensure you don’t waste a moment on negativity?...”
As we mark Uterine Cancer Awareness Month, we share the courageous journey of Alex, whose strength amidst adversity serves as inspiration for all. Alex's experience with cancer began with a routine hysteroscopy in early 2020, but what unfolded was a tumultuous journey marked by setbacks and triumphs.
Despite enduring aggressive treatments, including radiation and chemotherapy, Alex's story took an unexpected turn with the diagnosis of metastatic cancer in June 2023. Alex has endured the highs and lows of her journey with grace and fortitude, shedding light on the challenges faced by those living with uterine cancer. Join us as we honour Alex's resilience and advocate for increased awareness for everyone with lived experience of this disease.
Coping with the diagnosis
“No words can describe the experience of that appointment and being told that this cancer is incurable; the disbelief and devastation. Afterwards we talked, we cried, and we shared our determination and optimism in the face of it all. We went into action mode, seeking information, sourcing contacts, and consulting doctors both in Tasmania and interstate. There were differing opinions about how to approach the recurrence. After weighing it all up, I started chemotherapy again in July 2023.”
Although she faced several challenging hurdles along the way, Alex completed chemotherapy in December 2023, rejoicing as scans revealed reductions in tumour size and activity. Carrying on with immunotherapy into early 2024, Alex led a few months full of energy and positivity. However, an unexpected autoimmune reaction affecting the salivary glands forced pauses and ultimately cessation of infusions.
After feeling amazingly well for a couple of months, her symptoms resurfaced in late April. A recent scan confirmed progression, plunging Alex into a disheartening situation. She was then referred to an international clinical trial with sites in Australia.
“I am grateful to have been referred to a new clinical trial. It will mean regular travel interstate however the silver lining is that I'll be able to spend more time with my sons and their partners who live in Sydney. Optimistically I'm hoping that I will receive the trial drug, that it will halt the progression of the disease, and I'm even more hopeful that it will extend my life. I have so many things I still want to see and do, and most especially I long for more precious time with my family.”
Maintaining a sense of hope during the toughest moments
When asked how she maintains a sense of hope and positivity during the toughest moments of her treatment, Alex says,
“The answer to this question is both perfectly simple and yet also incredibly complex. In the simplest of terms, when you discover that your life is going to be cut short and you’re going to miss so many things that you assumed you would experience what else is there to do than to make sure you live every day to the fullest, embrace all possibilities, epitomize hope and ensure you don’t waste a moment on negativity? And yet, when you’ve been told that your life is going to be cut short, and all those things you assumed you’d experience in your life are going to be taken away from you, it is also very normal to be devastated and distressed at this loss.”
Keeping in mind the reality of her diagnosis, Alex recognizes the importance of accepting that these are normal ranges of emotions in the circumstances. She makes space for both positivity and grief, while consciously choosing to spend more time living in each moment and in a way that brings joy. Alex feels incredibly fortunate to have had her husband’s unwavering support and love every step of the way. They have been united in leaving no stone unturned, while also living life to the full, and making the most of their time together.
Soaking in the little joys of living and acknowledging grief
Alex looks to savour little things in the everyday, whether it's observing birds, basking in the warmth of the sun, laughter with friends, or seeking out new experiences. Most importantly, it's the time spent with loved ones that fuels her hope and gratitude.
When initially sharing news with friends, she noticed it was typical for people to respond with a comment about staying positive. She found it challenging at a time when she was reeling with being told she had an incurable illness. While understanding and appreciating people's loving intention in being upbeat and optimistic, Alex began to communicate that while hope is essential it is also necessary to have space to be sad. She understands that grief is an important emotion as this validates the truth of the situation for herself, her family and friends, while also embracing a positive and dogged determination to live.
“Although positivity is incredibly valuable, it doesn't cure cancer. Plenty of wonderfully positive people have died with this disease. With time I talked to friends about this, and explained while I appreciated their love and desire to help, it is also absolutely OK to grieve and it’s OK to be sad and it’s OK to make space for that in our relationship. We don’t have to fill this space with words, sometimes it can be more meaningful to just be present with each other acknowledging ‘that’s terrible but I’m here with you and we'll face this together’.”
On ANZGOG’s Survivors Teaching Students
From the start of her diagnosis, she prioritized helping others. Seeing the benefits offered by clinical trials, she expressed interest in taking part in clinical trials to advance science and support women's health. She also aimed to raise awareness, encouraging women to recognize signs, ask questions, and listen to their bodies.
Consequently, she volunteered with ANZGOG’s Survivors Teaching Students program. Within this initiative, individuals who have faced gynaecological cancers, including Alex, share their lived experiences with aspiring health professionals across universities in Australia and New Zealand. Alex highlighted the program's unique ability to complement traditional medical education by providing insights into the human aspect of illness.
“Sharing our accounts can lead to change, and most importantly to improvements for women facing gynaecological cancer in the future.”
The importance of family
Alex’s relationship with her family is anchored in love, trust, and mutual respect. When faced with the task of sharing a cancer diagnosis, honesty and openness were crucial. Alex and her husband believed their adult children deserved to know the full story to make informed decisions as the journey progressed. Throughout treatment, she has maintained transparency, ensuring nothing came as a shock. Despite the challenges, they approached treatment with gratitude, seeing it as a gift of extended time together. Alex's attitude was that every side-effect was worthwhile, approaching it with grace and resilience as she focused on the goal of being as healthy as possible for as long as possible, so she could be with her family.
“How have we had normality during this time? I don’t know that you truly can, as ultimately this is not a normal situation. We spend time together doing normal things like telling stories, laughing over ridiculous things, sharing a meal, playing games, going for walks and so on. Yet the reality of the situation means we also talk about cancer, make room for tears when they happen, and live differently than we otherwise would have done. Making the most of every day has certainly come sharply into focus. Cancer is not a solo journey, it impacts us all, and its ripples are enduring. There is no right and wrong way to do this, so I am always thinking about how to be honest whilst also building strength and resilience to face future challenges. When I'm no longer here, what I hope they remember most is the way we approached all of this together, with love, courage, and hope, and a focus on helping others. Simultaneously, cancer changes everything and yet changes nothing.”
The importance of gynae cancer research and funding
Alex acknowledges the grim statistics surrounding recurrent endometrial cancer, with a mere 20% five-year survival rate, highlighting the stark reality faced by those living with the condition. She expressed concern over the doubling of endometrial cancer cases in Australia over the past two decades and the global increase across all age groups, deeming it unacceptable. Despite its status as the fourth most common cancer in women, endometrial cancer remains relatively unknown to many.
“The only way this will change is through scientific research. For me and other women in my situation, we are holding out for new treatments through clinical trials. My hope lies in advancements with new drug developments. Beyond my own experience, my hope is that things are different for women in the future. This will happen through raising awareness, prevention, earlier detection, and better treatments. Research is central to all of this, and so funding is crucial.”
On giving advice to other women Alex says,
“Trust your intuition, if you feel something may not be right, get it checked out. Talk to your GP. If you still have questions, ask for tests or seek a second opinion. You have one body, one life, and when you put it into that perspective, uncomfortable conversations and moments of awkwardness are TOTALLY worth it!”
Though devastated by her prognosis, Alex takes the opportunity to prioritize what truly matters and to cherish moments with loved ones. She remains determined to make the most of her time, embracing each day with gratitude and advocating passionately for initiatives aimed at supporting women facing similar diagnoses through ANZGOG.
Share your story
If you would like to know more about how you can share your story as part of ANZGOG’s Community Engagement Program, please contact Volunteer Coordinator Aimhirgin Byrne at aimhirgin.byrne@anzgog.org.au
