A Mother’s Advocacy Through Palliative Care
Lynette and Sarah’s Story
Lynette has spent much of her life caring for others. Widowed more than three decades ago, after losing her husband to bowel cancer, she stoically raised three daughters while balancing work and community commitments. This caring nature extended to volunteering in her local community. Her dedication saw her recognised with a Citizen of the Year award from her local council in 2018, and she was later named a finalist in the Tasmanian Outstanding Achiever Awards.
Lynette is clear when she talks about her ‘more important role;’ the one that has given her the most value and pride in life – being a mother. This role included being a primary carer for her eldest daughter, Sarah, who faced multiple health challenges throughout her life – and whom Lynette speaks of with great admiration.
“Sarah was the most calm, compassionate and loving soul. Not asking for anything, she took everything in her stride. Sarah loved everyone, and everyone loved Sarah.”
The qualities that Lynette describes, would go on to shape that way that Sarah responded to the illness that later took her life – a rare mucosal melanoma of the vulva. This diagnosis is of rare type of mucosal melanoma that develops in the vulva tissue rather than on exposed skin. It accounts for only around one percent of melanomas in women. Spotting and recognising the illness early can be difficult, and publicly little is known about the disease.
Melanoma Patients Australia and advocates such as Lynette, hope to share stories that shed light on this diagnosis and palliative care – demonstrating the complexity of melanoma, and the way that it impacts lives.
The Signs That Raised Concern
In April 2023, Lynette was doing a routine round of laundry, when she noticed the presence of blood in Sarah’s clothing. Given Sarah had undergone a hysterectomy a decade earlier, Lynette immediately recognised that this was unusual for her daughter.
After gently raising the issue with Sarah and discreetly checking together, they identified that she was bleeding quite heavily. An urgent GP appointment was made. At first nothing serious was expected, and the initial indication was that it may have been an irritated skin tag. A biopsy was ordered. Lynette’s instincts shaped the way she pursued answers. She knew through her husband’s cancer, how vital it was not to ignore the signs. A week later, the biopsy results confirmed her concerns. The lesion was melanoma.
The Moment Life Shifted from Carefree to Caregiving
“We still didn’t know what was coming and life was continuing on. We had a four-generation family holiday planned to the Gold Coast for my seventieth birthday. My sister and her partner were meeting us there from Queensland. We didn’t tell the rest of the family about Sarah’s diagnosis at that time. I didn’t want to ruin what was meant to be a special time together.”
As they arrived at the airport, Lynette received a call from Sarah’s medical specialist offering an appointment two days later. Lynette asked if they should call off their travel plans, and the doctor reassured her that they could take the trip and schedule for a week later instead.
Taking the trip and sharing that time together became an important moment for the family. It would be their last celebration before the difficult months ahead.
Navigating a Rare Diagnosis
On return to their home in Tasmania, Sarah was diagnosed with vulvar melanoma and told that the disease was particularly aggressive. As a Carer, Lynette immediately felt the weight of balancing the medical diagnosis with supporting her daughter, both physically and emotionally.
“I remember trying to stay composed while the specialist was explaining everything. I didn’t want to show too much emotion, because I didn’t want to alarm Sarah.”
In June 2023, Sarah underwent surgery to remove the melanoma. Initially there was hope that the cancer had been contained within the tissue that had been removed. However, a week later pathology results revealed that the melanoma had spread beyond the surgical margin. Further scans showed that the cancer was progressing rapidly. By December, it has metastasised to Sarah’s ribs, pelvis, spine, femur, breast, liver and base of the skull.
The rate and extent of the cancer brought a new level of reality to the situation. The months ahead would bring hard days and difficult decisions about care.
The Important Role of Advocacy
Despite the extent of the cancer, Sarah’s only symptom was fatigue, but the melanomas were multiplying quickly on Sarah’s scalp. Doctors began discussing treatment options, including a combination of radiation and chemotherapy. However, they made it clear that while these options might buy-time, they were unlikely to cure the disease, which was advanced. The treatments would almost certainly involve significant side effects and long periods in hospital.
Sarah, Lynette, the medical team and immediate family analysed the situation and held in depth discussions. Ultimately, they decided that the pursuit of treatment would cause more harm than recovery in Sarah’s particular case. The focus shifted to monitoring the disease and supporting Sarah’s comfort and quality of life.
Throughout this time, Lynette continued to advocate for her daughter, coordinating appointments, communicating with doctors and supporting Sarah during consultations. A moment that exemplified the trust between mother and daughter came during an appointment when the doctor had asked Sarah if she was ‘worried about anything?’
Sarah had turned to her mother before answering and asked “Are we worried about anything Mum?” Lynette gently reassured her, after which Sarah then answered “No,” she was not worried.
Dignity and Comfort Through Palliative Care
By January 2024 the illness had further advanced, with scans revealing multiple brain lesions. Palliative care services became involved, and Sarah continued to attend regular monitoring appointments with her medical team.
In the weeks that followed, symptoms gradually increased. Sarah began experiencing pain, nausea and increasing fatigue, and walking became more difficult. By late February she was admitted to Whittle Ward a palliative care centre in Hobart, so that doctors could adjust her medications and better manage her symptoms.
During the final weeks of Sarah’s life, Lynette remained by her side, supporting her through the physical and emotional challenges of the illness. During this time Sarah continued to show the kindness, composure and gratitude that had always defined her character.
“She would always thank the nurses and be so polite, each time they came in to check on her or give her pain relief.”
Palliative care plays an important role for people living with advanced illness. It focuses on managing symptoms, maintaining comfort and allowing dignity. It further supports families and carers through some of the most challenging stages of care, and pending loss.
Sarah was surrounded by love and support until the end. She passed away on 22 April 2024, at the age of 45.
Life After Loss
Lynette’s grief is palpable and the emotional weight of both the journey and the loss of her beloved daughter sit with her.
“Watching someone you have given birth to and nurtured all their life, being consumed by an insidious, cruel and painful melanoma, really tore my heart out.”
Stories like Lynette and Sarah’s may be difficult to read, but it’s important to highlight the burden of melanoma on carers and families. Healthcare providers and Melanoma Patients Australia can learn from lived experiences and aim to be even more effective at supporting other people experiencing similar challenging journeys.
In 2023, over 1,500 people died of Melanoma in Australia. Beside each loss sits family and friends who are bereaved. Understanding the role of Care Givers, is essential to more holistic care at all stages of illness.
Today, Lynette’s life continues with both grief and gratitude. While her heart and memory continue to hold space for Sarah, she enjoys spending time with her daughters Leesa and Amy, her young grandson Finn, and her own mother (whom she cares for). She finds solace in her garden – a source of great emotional comfort and wellbeing.
“I’m happiest when I’m in my garden.”
By sharing her small joys, Lynette hopes that others can see that life continues after profound loss. She shares her story today in the hopes that Sarah’s memory will live on, and help others in turn. She wants other carers to understand the important role they play – standing beside their loved ones as advocates, when treatment pathways and medical decisions don’t come easily.
When asked about her personal mantra after everything she has experienced, her answer is simple, “Just to survive.” Lynette does not say this flippantly, but in reality – encouraging others to take life day by day.
Melanoma Patients Australia would like to express gratitude to Lynette and family for allowing us to share their story. We acknowledge the significant strength that it takes to be a carer and an advocate.
We also offer remembrance of Sarah – may she rest easy now.
How to Plan for Advanced Care
If this story has raised questions about palliative care, please see our helpful and Essential Questions to Guide Advanced Care Planning.
If you are seeking support, contact the National Melanoma Support Line on 1300 884 450.
