This is part two of Ali’s story. You can read part one here.
I looked out of the 12th floor window of the Royal London Hospital across central London at night. I was in a room by myself in a dark neurology department that would only start whirring and buzzing as morning came and felt terribly isolated. Cecily and my parents had no idea I’d been transferred to another hospital, let alone that I was about to have imminent surgery.
I felt like a small boat tossed on rough seas, on an unavoidable course towards a complex and dangerous brain surgery – one that, I later learnt, had a 60% chance of causing a medically diagnosed personality change.
I tried not to panic, and instead called Cecily, and my parents, waking them as I did. Those conversations were frank, pragmatic, carried out with a composure that I later learn doesn’t last after hanging up. I realise I’m putting them through their worst nightmare, but the escalating pace of events doesn’t allow me to reflect.
A few hours later and assisted by an infra-red guided robotic arm (called Stealth – the manufacturers must have the same marketing team as Lynx), the hastily-assembled team of neurosurgeons got to work. The prediction was that it would last about five hours – instead it was 14, starting before dawn and finishing in the dark of night.
While my family waited anxiously by the phone, I hallucinated wildly under anaesthetic: the physical insult to my brain, large doses of steroids and general anaesthetic combined to cause psychosis, meaning that while I was unconscious, my head bolted to operating table to prevent movement, I have vivid pseudo-memories of the surgery, of its failure, my death and subsequent autopsy.
Losing half my brain
As I finally regained full consciousness the following day, I asked a nurse if I’d died during the surgery. ‘No’ came the response. Great news. With a profound exhilaration, I recognised my personality and thought patterns. Half of the area of the brain responsible for intelligence, for personality, had been sucked out by what was essentially a very sophisticated hoover, and I was somehow still, indisputably … me.
At the same time, I felt like a dusty old laptop, fans whirring, barely able to complete the most basic mental task. I had cerebrospinal fluid leaking out of my nose, filling my mouth with a deeply alien salty taste. I was still hallucinating wildly, by turns euphoric and utterly distraught. There was a tremendous buzzing feeling in my healing brain, like static on an old TV, as well as a persistent trickling sensation from deep within my head – like tap water falling through pebbles.
I had dizziness which would escalate to a furious intensity when I lay still. Though I didn’t know it yet, I had a vast scar extending from above my left ear across to my right eyebrow, my face held in place with what looked like thick fishing wire. “Just in time for Halloween,” my mum joked.
A lesson in humility
I spent a little over a week in that neurology ward, my first introduction to the brutal world of brain injury. Being utterly dependent on the care of nurses – to eat, to clean yourself – is a lesson in humility.
The patient adjacent to me, a woman in her 40s, was in a state of psychosis following an infection that had seemingly erased most of her memories as well as the ability to speak English. Her brother was haltingly translating for her in a language she hadn’t spoken since she was a child, as she huddled terrified in the corner of her bed. I listened as doctors said they would be ‘looking for modest improvements only in the coming weeks’ to her incredulous family.
A week later, the doctors began preparing me to leave hospital and return home. I certainly didn’t feel like someone who should leave hospital. Still heavily bandaged and half-daft from surgery, my six-foot five-inch frame teetered off-balance as I made my way through the car park into the bright daylight.
Ali is slowly finding out more about his condition. Here’s where The Brain Tumour Charity’s Support team can help. We want to ensure everyone affected by a brain tumour has the information, advice and resources they need to live longer and better. Ali talks about the next phase of his own journey – and even seeing the positives – here.