Discovery.

January 2024 - warning signs, diagnosis and shock.

 Warnings?

This first question most people ask is “did you have any warnings?” I’d had a few months of headaches, sometimes accompanied by a visual disturbance. I reported to my GP (remote appointment) and was told it was a visual migraine. Prescription issued, keep taking the pills. I had no other symptoms I could identify (more on that later). After a few months of this, I booked a routine eye test, suspecting maybe my myopia prescription was out of date and to blame.

Vision Express deserve so much credit here for saving my life. Their optician called out inflamed optical discs and made an urgent referral to the eye hospital. Not only this, she said if I didn’t hear from them within 48 hours, I was to go present in person and call her to chase them from the side-lines. I believe that went above and beyond reasonable expectation and I’m delighted to be here to express my gratitude. If they hadn’t caught this, things could have been so much worse. It’s one of the things on the journey I remain grateful for. It’s also why I’m very much behind the Brain Tumour charity’s campaign here.

The eye hospital looked a little more closely, inconclusive results, MRI happened a day later. Here’s something I hold to be universally true: any meeting where you’re expecting one person but unexpectedly get two is going to be of the bad news variety.  Your boss will promote you alone, but will have HR along if you’re getting fired.  When the neuro registrar sat me & my partner down next to one another and then introduced the orderly, I knew it was going to be bad.  MRI results meetings don't need an orderly present unless there's risk of the patient losing control.

The diagnosis

I’d been diagnosed with a 9cm brain tumour, right temporal lobe.  I felt my world crumble on the spot, and as the colour drained from my partners face I knew I’d not misheard.

The consultants talked through the urgent need for brain surgery, with the risk of stroke & death, and the 90% likelihood of some sight loss in the right eye.  Entire life changed in just a few words. As we talked, they asked more questions about whether I’d been having seizures. An area I knew next to nothing about, and felt not. The surgeon asked a load more questions, about things like deja vu, auditory hallucinations and more. Nothing.

When he asked about unexpected queasiness though, my answer changed. These, I had been experiencing - only after a strong coffee, and for around 9 months. These had in fact been Focal Area Seizures. This is a more targeted type of abnormal neuro activity, occurring in one location of the brain only. A feeling of queasiness, a light metallic taste, was a classic right temporal lobe focal seizure, and caffeine was causing them. With that news, the surgeon believed the situation would deteriorate quickly, so the timescale got aggressive.

Despite the strain the NHS is under, it can still move fast in some areas. I was to go from an eye test on 11th January to brain surgery on 22nd January. I’m still processing the trauma of that period.

We held it together long enough to hear the plan, and then left. The first order had to be to tell everyone else, when Janna and I had processed as best we could. She was immense - where many would have been distraught, she was immediately the rock I needed, and went straight into research mode, answering questions faster than I could assemble them. Not only this, she saved me from reading the darker side of these stories that search engines love to promote. More on that later too.

After a career running tech & leadership events, I’ve heard a lot of talk about how to have tough conversations.  You think you know about having tough conversations? Try telling your teenagers that you have brain cancer, require urgent surgery, and someone is going to take out a skull flap. This operation (a Craniotomy) is medically deemed an intentional traumatic brain injury, one which will take months to recover from. The shout here goes to their mother, Beth.  Not only did she have to deal with this news herself, but also support my two wonderful children on their part in this journey. She has always been and remains one of the strongest and most compassionate people I know.

We had a plan, we had no other options, and we just needed to process how the hell we were going to make it through.