In Loving Memory of Shirley Fitzgibbon
Wife. Mother. Nan. Great-Great.
A story of love, bravery, courage, and legacy.
WARNING: This story contains raw and confronting imagery and descriptions of Shirley’s story. We never asked Nan to hide her tumour, nor should anyone feel shame in their reality. These images and details reflect the harsh truth many patients may face, especially when surgery is not an option. We share them with love, dignity, and deep respect for Nan, to raise awareness and foster greater understanding.
This is the story of Shirley Fitzgibbon, a beloved wife, mother, grandmother, great-grandmother, and the heart of our family. Told through the eyes of her granddaughter and carer, Bel. It is a story of fierce love, immense strength, and the brutal truth of mouth cancer. It is also the beginning of a mission - to ensure no other family walks this road without the support, knowledge, and compassion they need.
Who Nan Was
Shirley Fitzgibbon was the cherished wife of Eric Fitzgibbon, my Pa; a dear mother to three children, a treasured Nan to sixteen grandchildren, and the best Great-Nan to eight great-grandchildren. But to me, she was simply my Nan. She was our biggest supporter, the one we could always count on for a chat, our advice giver, and the most loving Nan anyone could ask for. We were truly blessed. And, of course, always spoilt.
The Day Everything Changed
On the 29th of March 2022, Nan’s 83rd birthday, I took her to a dermatologist appointment. She thought she had a sunspot above her lip that needed to be frozen off. These were routine visits, and I often accompanied her. But that day turned out to be anything but routine. I was pulled aside by the dermatologist, who quietly told me that he believed Nan had a rapidly progressing mouth cancer, a squamous cell carcinoma. We returned to Nan together, and he gently explained that she needed urgent referral to Royal North Shore Hospital in Sydney as she had a mouth cancer that needed further investigation.
Nan had lost my Pa just 19 months earlier. She looked at me and said, “I don’t know if I can do this, Bel.” I took her hand and said, “Nan, you are strong. We’ll fight this together. You and I are a good team.” And Nan agreed.
The Diagnosis
Following further scans and investigations, it was confirmed: Nan had Stage 4 terminal mouth cancer. The tumour had grown undetected for months. Despite having none of the common risk factors, the cancer had spread too far to be cured.
As a family, we had never heard of someone having mouth cancer, and we were unfamiliar with the signs and symptoms. That lack of awareness meant that by the time it was discovered, treatment options were limited. Nan’s oncology team discussed two possible paths forward.
A Devastating Choice
The first option was a 12-hour surgery that would remove Nan’s lips, part of her palate, and the bottom of her nose. Her face would be reconstructed with a skin graft taken from her leg. This surgery may have left Nan unable to speak, eat or drink, requiring months of rehabilitation, speech therapy, and occupational therapy. There were risks of infection, graft failure, and the possibility of multiple surgeries to follow.
The second option was radiation, not to cure the cancer, but to improve Nan’s quality of life. Radiation could shrink the tumour, helping preserve her ability to speak and eat, reduce drooling, and lower the risk of an arterial bleed. It could also help maintain her appearance and dignity.
Due to Nan’s age, diabetes, previous heart surgery and kidney function, the doctors warned she might not survive the surgery.
After long discussions as a family, Nan made her choice. She told us she wasn’t ready to die. She wanted more time to create memories, to have meaningful conversations, and enjoy meals around the family table. And so, Nan chose option two, radiation.
Starting Radiation
Radiation treatment began with the creation of a custom thermoplastic mask, built to hold Nan completely still during her sessions. The process was confronting and went for hours. Nan’s nostrils and mouth were packed with putty, and a breathing tube was inserted. The heated mask was placed over her face and moulded, then clipped to the table to ensure absolute precision. I was asked to leave the room so she could undergo her first round of radiation. During this time, Nan became unsettled, and I was allowed back in to her. I held her hand and said, “Nan, it’s Bel. I’m right here. Nice and slow breathing. You’re doing such a great job.” This was very confronting for us both, but my Nan was a fighter.
It was the beginning of a long and difficult road. With the support of my family, following this appointment I became Nan's full-time carer. I was honoured to take on this role and we shared so many beautiful memories over the next 7 months that followed.
A New Normal
Over the next seven months, Nan faced battle after battle. The radiation destroyed cancerous cells but with that came devastating side effects. Nan lost her upper lip and, with it, the ability to wear dentures or eat properly. She had to switch to a soft palate diet. Drooling became constant and humiliating. She carried a hand towel with her at all times, not for vanity, but to manage something deeply degrading. The medications that could have helped came with other risks, including UTIs.
As the radiation continued, Nan lost part of her cheek and the bottom of her nose. A hole developed in her palate, connecting to her nose. As Nan already had a hole where her upper lip was, it meant we could see into her mouth constantly. Eating and drinking became ever so increasingly difficult. But Nan was a fighter, she found ways to tilt a straw to one side to keep drinking independently.
Her face lost muscle function. She could no longer manage soft foods. But Nan refused to eat baby food. With her dignity already being stripped away, she clung to what she could including her sense of taste. She was determined to enjoy what she could, however she could.
In July, we learned that she could no longer have any more radiation. The hole in her palate was worsening, and further treatment might mean she’d lose the ability to eat or drink altogether.
Complications
Nan developed a small wound on her heel. She had been self-treating with a band aid as she felt I was already doing so much for her. However, it turned out to be a serious pressure injury. She also had one on her hip. Despite all our care precautions, including specialised cushions, air-mattresses and frequent re-positioning, her diabetes made her skin fragile and susceptible to wounds. Nan had insisted on showering and dressing independently, to maintain some privacy and dignity, for as long as possible and that is how these wounds went undetected. Nan was referred to the Specialist Wound Clinic, where we were told they were the worst pressure injuries they’d seen. I was devastated and felt I had failed her as a carer.
In August, Nan was admitted to hospital with a UTI and wound infections. Whilst there, her vision began to fade in one eye due to the tumour’s progression. By October, she returned home under a palliative care plan, to spend her final weeks surrounded by family. I moved in full-time and did not leave her bedside.
The Final Weeks
Nan was only able to eat small amounts of ice cream, custard, or yoghurt. Her mouth couldn’t close, and she was constantly thirsty. Drinking became almost impossible as she lost the ability to suck a straw. We began syringing fluids into her mouth. Still, she never once complained.
What we never told Nan was that her tumour produced a constant, unbearable stench due to the necrotic tissue. It was heart breaking. We did not want Nan to know this or be embarrassed by this. She had already lost so much dignity due to this cruel illness. We tried oil diffusers and Vicks, and mouthwashes but they caused her pain. The smell was a constant reminder of this cruel illness, and yet, we shielded her from it to preserve some dignity for her.
Family
For Nan, family was the most important thing in her life, and she was blessed to be surrounded by so much love and storytelling and beautiful chaos. Family gathered daily. The grandkids spent time at her bedside, sharing stories and listening to her final words of advice. The great-grandkids always brought Great-Great, as she was known to them, extra bowls of ice cream.
We had hard days days full of sadness and unanswerable questions. But we also had small wins along the way when we discovered new ways to shower her, or make her comfortable. Nan called us angels, though I can assure you, my techniques were far from graceful at times.
As is evident from the above, Nan’s experience with this aggressive and cruel form of cancer was at times confronting, painful, undignifying and brutal; but she fought, she showed so much grit, and took it all in her stride – she did all this so she could be here with us for as long as possible. My Nan never complained about the cancer, or any of the cruel symptoms; she was so brave. And I was so proud of her. It was truly an honour to be by her side in the last months and days of her life.
My Why…
In her final hours, our family surrounded Nan. I laid my head on her chest, held her hand, and whispered, “Nan, it’s Bel. I’m right here. Nice and slow breathing. You’re doing such a great job. I’m so proud of you. I love you.” Nan opened her eyes, looked into mine, and, after 40 minutes of peaceful breathing, she took her last breath.
Throughout those seven months, I kept asking questions and too often, the answers didn’t exist. Nan would always ask, “Bel, what are you going to do with all this?” As I lay on her chest that final day, I knew the answer.
I created The Mouth Cancer Charity in honour of Shirley Fitzgibbon, to help others walk this road with more support, more dignity, and more information than we had.
We learned so much together: how to clean her mouth gently, how to manage drooling, how to preserve dignity in the face of pain. We discovered the gaps in care like adaptive tools for eating and drinking and so many small tricks that made a big difference.
This charity is Nan’s legacy. It is our family’s promise to keep fighting, to raise awareness, to develop new tools and treatments, and to ensure no one walks this path alone. And like everything in Shirley’s life, we will do this as a family, a big, loving, noisy, family. Just the way she would have wanted.
Nan and Pa enjoying one of their favourite things together, the garden.