It started with a headache, out of the blue, one morning in June 2021. I had just turned 32 and was on holiday in Spain with my family and girlfriend, Cecily. I ran a department at a fast-growing tech company at the time and had been working unsustainably hard. It was due to stress, I thought, and so life went on as normal. But when I woke up with a second, crushing, headache the following week, which worsened if I leant over, I did what anyone would do: I went to my GP.
‘Chronic migraine’ was the diagnosis, and triptans the treatment. I wasn’t surprised: between lockdown, overwork and a stubborn case of impostor syndrome I had plenty of stresses in my life that could have triggered it. I would take my triptans and try to relax.
I was surprised when the drugs proved utterly ineffective. Over time, the headaches grew in intensity, settling into a twice-a-week rhythm and were accompanied by further symptoms: sensitivity to light, nausea and visual aura. I went back to my GP – this was in the days of COVID-19 and so consultations took place by phone – only to be prescribed increased doses of triptans.
Months passed and my health worsened. I spent most of my time in bed with the curtains closed. I was oversleeping – sometimes 13 hours a day – and occasionally found myself searching for words. My GP was unflinching in the dozen or so times I spoke to her. It was chronic migraine. Frustrated and feeling ignored, I sought the advice of a private consultant neurologist – a headache specialist. ‘Chronic migraine’ she echoed, ‘cut the caffeine, and the alcohol’ she advised, and so I obeyed.
By October, months since my first headache, the ‘migraines’ were near constant and medication had no effect. I looked dreadful – pallid, hollow-eyed and thin. As I deteriorated, I’d resigned from my job, unable to work. Cecily and my parents were frantic.
Finally – a scan
When, much later, I looked back through the emails from this period, I’m struck by how desperate a time it was. I was approaching a wide array of neurologists and migraine experts, only to find they all had waiting lists of more than eight weeks. My emails seemed like they had been written by somebody else – someone with a poor command of grammar and a strange, inappropriately jaunty tone. Eventually, my GP agreed to refer me for an MRI scan.
‘You need to check yourself into A&E’ was the first thing I heard when I stepped outside of the machine, a line delivered with practiced calm but terrified eyes. On a gurney the other side of the hospital, the on-call doctor asked some alarmingly simple questions, at one stage seeming surprised I could still move my limbs. If I was in any doubt before, that dispelled it. Things were very serious indeed.
Around midnight, losing patience with doctors who refused to tell me more, I found a young doctor in A&E and insisted she explain. And so, the hot potato fell to her. Inspecting my notes, she delivered the news: “They’ve found a large tumour in your frontal cortex and are preparing you for emergency surgery.”
There was, I was told, already a large team discussing the best course of action in another hospital. The bad news kept coming: the tumour was 7cm in diameter and had caused a haemorrhage where it had pressed on other areas of the brain. Each grim revelation barely registered on my exhausted adrenal system, like the maxed-out Geiger counter in Chernobyl.
Later, an ambulance came in the middle of the night to take me to the gigantic Royal London Hospital in Whitechapel, my first experience of ‘deep hospital’ with its endless, fluorescent-lit corridors. Arriving at the neurology ward at around 3 am, I – at last! – found myself in front of a neurologist. But before I could ask the questions I’d prepared, she interjected: Do you want to see it?” Gosh. I hadn’t thought about it, but … of course I did.
‘Surgery starts in three hours’
It’s a sight you never forget: an amorphous white cloud the size of an orange, squatting in the top left corner of the brain and clearly discernible from the surrounding brain tissue, which was so swollen it looked smooth, like a balloon. The same tissue that couldn’t compute what it was seeing: that this mass was right there, right now behind my left eye.
All the questions I’d readied melted away, and for a while we sat silently. Eventually she said: “You’d better get some sleep; surgery starts in three hours.”
Ali’s struggle to get diagnosed is all too familiar to our community. That’s why we’re campaigning for a Faster Diagnosis and making specific recommendations to NHS England and policy makers to improve the journey for everyone with a brain tumour. While this won’t necessarily change the outcome of a diagnosis, it can give someone more time to process their situation and to seek the support they need. Ali describes the next stage of his own journey here.