Run the Hell Out of the Condition

By Simon Heddle-Baker

Introduction

I’m Simon, a 54-year-old British expat living in beautiful Nelson with my incredible wife and children, surrounded by extended family. I’m a runner, mountain biker, history buff and film lover. Life was full and active—until a few surprising symptoms started to appear late last year.

In late 2023, I stumbled over a word while speaking. It seemed odd, but I didn’t think much of it. When it happened again in January, I made a mental note to see my GP once I returned from visiting the UK. My doctor thought it might be expressive aphasia. Two days later, I felt pins and needles in my right leg and decided to get it checked properly.

That Monday, just before Waitangi Day, I went to hospital. A CT scan and then an MRI revealed a 4cm brain tumour. I was told I’d be transferred to Wellington for treatment, and two days later, I had surgery to remove it. They managed a 94% resection. I was back home in Nelson just eight days later.

The biopsy confirmed I had glioblastoma. I started standard radiotherapy and chemotherapy at Wellington Hospital and soon began looking into other treatment options. That’s when I connected with Dr Matt Phillips from Waikato Hospital and was able to join his Glioblastoma Metabolic Therapy study. I’ve continued treatment for eight months, combining conventional therapy with metabolic therapy—and I’m still on that path today.

My most recent scan in December gave us good news: the remnants of the tumour have “nearly gone.”

None of this would have been possible without the support of Dr Matt, my oncology team in Nelson, my psychologist, the wider community, and most importantly—my family. My workplace was amazing and gave me the year off to focus entirely on healing.

Despite the gravity of a glioblastoma diagnosis, I haven’t experienced major negative effects from the tumour or treatment. If anything, I’ve discovered a strength and resilience I didn’t know I had.

I now feel laser-focused on my job in life: to survive, to contribute meaningfully, and to be here for my family. My wife has been an unwavering pillar of support. Our bond has deepened. Even my relationship with my sister in the UK—once fractured—is now stronger than ever. We speak almost daily, and she even joins me in fasting as part of my metabolic therapy.

This experience has helped me see clearly who my true friends are—those who show up and support me by simply being there.

Work has also been incredibly understanding. I was supported by my employer, by our insurance broker, and eventually made the decision to resign from my position, knowing we were in a good place. I’m grateful beyond words for how smoothly that transition was handled.

Final Thoughts

I used to think I was just your average guy. This experience has shown me that I’m stronger, more resilient, and more determined than I ever imagined—more than I’ve ever had to be in any job. I now know exactly what matters in life, and I intend to run the hell out of every day I’m given.