Beyond the Diagnosis: In Kellie's Words

When Phil first experienced some facial numbness in 2019, no one could have imagined the road ahead. Fit, healthy, and planning an overseas family trip, Phil was shocked to learn that the Doctor’s suspected a possible small stroke. Initially misdiagnosed with multiple sclerosis, a precautionary CT scan revealed something no one anticipated — Phil had a brain tumour.

At first, doctors suspected a benign meningioma. They told Phil to take his wife Kellie and their two children on the trip they had planned, as surgery could wait until their return. But further tests brought devastating news: Phil had a glioblastoma, an aggressive malignant brain tumour requiring urgent treatment.

From that moment, life changed dramatically. Phil underwent brain surgery, chemotherapy and radiotherapy. An infection following surgery caused severe swelling, and a hand-sized portion of his skull had to be removed to relieve pressure.

Kellie recalls that through it all, Phil remained “strong, steadfast and hopeful.” He continued to exercise, stayed connected to his community, and found joy in simple moments with his family.

Even during chemotherapy, he and Kellie celebrated their 25th wedding anniversary with a special “second honeymoon” trip to Darwin.

But the journey was far from easy. “It’s a really awful thing to go through,” Kellie said. “Until you experience it, you can't understand it. Brain tumours, unfortunately, anything to do with your brain is very fearful, very uncertain. When it’s happening you are just powering through, but it’s very traumatic. Continual scans, continual appointments, sitting across the desk and waiting to hear it’s just a really terrible terror. Phil’s hand stopped working, he had a small seizure, you’re constantly living in fear of something happening and waiting for the next piece of bad news.”

As Phil’s condition progressed, so did the challenges. Extreme fatigue, mobility issues, and constant medical appointments became part of everyday life. As time went on, Phil could no longer work or drive, and eventually needed round-the-clock care.

“Phil was sick for 26 months, but for 6 months he had life-changing disabilities. We didn’t have any support and didn’t know where to go for support. We had no NDIS funding until the day he died.”

Reflecting on the experience, Kellie encourages anyone facing a brain tumour diagnosis—whether as a patient, carer, or loved one—to seek help and professional counselling from the very beginning.

“Early support is so important. When you first get diagnosed there’s just too much information coming at you all the time. That’s why the Brain Tumour Support Nurse is such a fantastic development.

Cancer fatigue is also something people should be aware of and discuss with their loved ones and employers. You can have Stage 4 brain cancer and be seemingly ok. Up until his craniectomy, you wouldn’t have known Phil was unwell, he had no deficits, but the fatigue is terrible.

Combating loneliness is something else to consider. Suddenly patients are no longer able to work and they're at home all the time. If you have family that needs to continue to work it can be a lot of tricky juggling.”

Kellie acknowledges the challenges of being a carer but focuses on Phil’s strength and resilience. Faith played a significant role in helping them cope, and she credits Phil’s unwavering positivity as an inspiration to those around him.

In a moment of serendipity, Kellie met Kerry Turner—whose husband Dusty was also battling a brain tumour—through the GP clinic where she worked.

The two women formed a deep friendship, with Kerry introducing Kellie to the Adelaide Brain Tumour Support Group. Together, they now raise funds in memory of their husbands to support vital brain tumour research. Last year, they walked the Amalfi Coast—fulfilling the trip Kellie and Phil had always dreamed of but never got the chance to take.

Today, Kellie shares Phil’s story to raise awareness about the realities of brain tumours and the urgent need for research to improve outcomes for others. She hopes their journey inspires families to access the support they need.

Phil’s strength lives on in Kellie’s voice and her mission. “I want this to be a story of hope. Early support is everything. Seek counselling from the beginning and be kind to yourself. Life does go on, but it looks different.”