Long live the fighters

On Thursday, 23 March 2023, I took my six foot six, 21-year-old son to A&E after months of frustration and distress since he began having severe headaches at Christmastime. Fred and I tried repeatedly to get help and guidance from our local surgery.

Trying to get an appointment with a GP had seemed unnecessarily difficult. The surgery directed you to their webpage where they say you can make a request, which I tried, many times, but which I discovered was ‘closed’ after midday each day (does no one get ill in the afternoon?).

Sometimes I’d get cut off the call entirely, ‘user busy’ or receive a recorded message which would’ve been more authentic if it simply said: “don’t bother us unless you really REALLY must, please go elsewhere’.  But. How do we, the un-medically-trained know when this is?

One time, when I finally managed to speak to a human, I was so excited I reeled off Fred’s symptoms to which the receptionist told me she used to suffer with migraines, ‘like an axe through the head’ she described. “Yes, it’s like that”, Fred agreed. Likely to be migraines then, we thought.

Fred did see a GP a couple of times in the previous months and the diagnosis appeared to be ‘mental health’ caused by anxiety. Therapy was suggested so he self-referred to the local NHS psychological support.

I felt relief to have some explanation, even if hard to comprehend.

But the headaches continued and he spent days which became months in his bedroom, trying to deal with the pain. He bought a selection of different pillows: memory foam, angled, hard, soft, as he thought it may be how he was sleeping. Was it something he was eating, drinking…? He tried his best to get to work, and mostly managed it, somehow, despite the dreadful pain piercing his skull. He struggled to get up, as he was kept awake at night and the pain would often be worse in the morning. Was he anxious about work? He’d told me he had a panic attack last year – mental health made sense. Meanwhile, I was getting increasingly frustrated with a son who wasn’t leaving the house, shutting himself away with curtains drawn as if the tiniest glimpse of light would ignite a fire. Shouting at me to get out of his room if I entered.

So from Christmas to March, he spent almost all his time at home in bed in pain, shutting out the world. I didn’t know what was going on. Was he having a mental health crisis? He’d been carrying his grief for years, keeping it close, maybe this is how it was manifesting itself now, eight years after his dad died. Maybe he was just being a teen and wanting to be by himself.

Fred had said it was a brain tumour, back then, but nobody believed him, not even an overthinker me. Not for a moment did I think it would be the second time that indiscriminate beast came to upset my family. “It won’t be a brain tumour”, the general practitioner had told him back in January. Fred came home elated and visibly relieved. He was told he’d be vomiting or have other symptoms along with the headaches if it was a tumour. I believed the doctors, for a time at least.

They were wrong. So wrong.

On Monday 20 March, we were granted an in-person appointment with the GP after being back and forth for some time. I’d had enough; I felt more needed to be done. I accompanied him and insisted they do an MRI scan. “Yes, that’s what we were planning on doing” she said. It seemed like she was being defensive, avoiding questions, and I wondered when exactly they had started “planning” to do this.

By Thursday, we took matters into our hands and went direct to A&E. Despite everything we had gone through as a family, I was unprepared for what happened next.

After checking in at the reception desk, we were directed to a room that had obviously been converted from an inpatient ward to a day patient waiting area; all beds removed, replaced with chairs and above each a number. Fred was number 24, although it could’ve been 25; the alignment of the laminated A4 numbers was a little off.

Many of the chairs were occupied, mainly by middle-aged and older men. As my youthful, Brobdingnagian son with his big beard, dark hair, sunglasses, and me – his mum, walked into the room, it seemed like every person turned to look at us, take us in, work us out. “Why are they here?” I heard their inner voices chatter through the movement of their eyes. I asked myself the same thing.

We were seen by one of the A&E triage team, reassured it would ‘probably be nothing’ but they wanted to do a CT scan to check. Scan done, we were sent back to sit in the room with the numbered chairs. An hour passed, then another, and another. People were arriving and then leaving. We remained seated. We chatted, made some jokes to pass the time, but as the clock ticked on, finding humour in the situation became more challenging. “It’s bad news if they’re taking this long” Fred said. “They’ll be busy” I reassured him. More of the numbered chairs stood empty than full now.

The doctor glanced at us with a half-smile, before quickly going about her business. Eventually she came back, accompanied by a new face, and they led us to a small corner room, with few words spoken as we followed them down the corridor.

They open the door and usher us in.  My heart is now beating faster. I am getting scared. I know these looks. I recognise this behaviour. Then the words of the new face: a consultant, a more senior member of NHS staff, drop like a bomb in the room. “The scan showed a 4cm lesion on your brain” he says, sombrely. “We’re just waiting for an ambulance to take you to Hull Royal infirmary where we’ve managed to get you a bed”.

Do you have any questions? They ask.  So many, but I can’t articulate any of them.

They show us to a private room with a bed and courtyard view, to wait. He is now a patient.

We were struggling to make sense of what we had just been told. I spoke to Fred, mustering some words. Leave me alone, he asked me to leave him alone in the room.  I stepped out into the corridor, feeling useless and traumatised by the words we’d just heard. Tears began to roll down my cheeks and a nurse took me into her office and asked if I needed anything.

“My husband died of cancer. This can’t happen.” I blurted out.

The bright sunny and cloudy day had turned to a dark night as the ambulance eventually arrived. Fred said he wanted to walk from the ward to the waiting vehicle, not be ported in the bed. “Why is everyone looking at me like I’m going to die” he said to me as we duly walked along the hospital corridor, staff looking at us with sorrowful smirks as we passed them. “You’re going to the best place, they’ll sort you out there” one said.

He told the staff he needed to go to the loo before we go, so the ambulance driver, his colleague and me waited outside. I felt a cold wave of air wash over me, making small talk and putting on the positive spin harder than ever.

It was about an hour drive from York to Hull.  A long time in the back of ambulance awaiting your fate.

“I need you to lay on the bed” said one of the crew as we climbed into the ambulance.

“What if I need the loo?” said Fred.

“I need the loo.”

“I need to go.”

A sick bowl became the creative answer to avoid stopping the ambulance at the nearest MacDonald’s.

“I can’t go.”

He tried again. No, still nothing.

The ambulance crew chatted to him, and me, as they did their best to calm our fearful hearts. “Did I pick you up once before?” the driver asked me. Yes, I recognised him. I came off my bike last October, lost consciousness, he picked me up from the tarmac of the cycle path, “Was it a broken collar bone?… I knew it” he said, familiarly. A broken collar bone, loss of blood and my own health struggles after the cycle crash seemed so insignificant now.

“We have to stop meeting like this” he added.

“Yes, we do” I thought, silently.