Like many of you, my pheo journey has been long, complicated and filled with unexpected turns.

After years of misdiagnosis and being told it was all ‘in my head’ my tumour was finally discovered by accident in 2017 after it caused me to have a seizure. Surgery gave me one good year, but then the familiar symptoms crept back. Once again, I was told it was all in my head, “just PTSD.” Sadly, my body proved them wrong.

In the middle of the chaos, my genetic testing came back clear, confirming that it was sporadic Pheo. At least my girls were clear of this crazy disease.

After months of playing “hunt the tumour,” scans revealed metastatic pheo in my liver. My local hospital was unable to carry out the needed liver resection and my care was transferred to the next biggest city an hours drive away. However, during the surgery the surgeons could only find tumours on my diaphragm which were removed accordingly. Sadly even after surgery, the symptoms never truly left me. Four more areas appeared on my liver which were inoperable. After much research my care was transferred again to another specialist hospital 1 1/2 hrs drive away, where I underwent MIBG treatment over 7 months. It was tough going but worth it. The tumours disappeared, leaving only some residual disease from the original tumour.

The good news? A year on from treatment, I was given stable disease status.

The emotional and mental side of this journey has been as challenging as the physical. I’ve had specialised counselling, and I discovered that journaling became one of my lifelines. That journaling grew into something bigger, the beginnings of a book.

And now for something I never imagined I’d be able to say: My memoir is complete and ready to share with the world.

Stubborn Bravery: The World Didn’t Listen – A Memoir of Rare Disease and Reluctant Courage is now available to order. It’s the story of misdiagnosis, surgery, treatment, setbacks, stubbornness, and survival — and my hope is that it shines a little light for others walking this road.

My book is available to buy through Amazon and 10% of all profits will be donated to the UK charity Amend whose support over the years has been invaluable: https://amzn.eu/d/1YL3A8n.

Still here. Still stubbornly brave. Still writing new chapters.