The day I got my life back

I was wheeled, by the three recovery nurses, up to the High Dependency Unit (HDU). I was acutely aware that one of them was carrying resus equipment, and the realisation that this was just the very beginning was starting to sink in. Scott had called Neil as soon as he’d spoken to me, and despite feeling like I’d just been hit by a bus, I couldn’t wait to see him.

I’d not quite made it to HDU before I was sick again. The wretching was painful. You see, I’d had an abdominal fat graft taken to fill the hole that had been made in my head. As well as a ton of monitors beeping away, I also had a catheter, and a drain in my stomach.

I was scared to move due to the risks of CSF leak, but the sickness was violent and uncontrollable.

Neil arrived with my mum about an hour later. I cried. “Do I look like a freak?” I asked. Of course he was going to say no, but even though my head hurt like crazy, I knew my face felt weird.

It was numb, like I’d had lignacaine at the dentist; my left side, from my forehead to my chin was completely dead, I couldn’t feel my teeth – you could’ve done root canal right then and I wouldn’t have felt a thing – and half my tongue and the roof of my mouth was also completely numb. Slightly more concerning, my eye wouldn’t close. You could’ve drawn a line right down the centre of my face. There was absolutely no sensation on the left, and the right was completely normal.

On a positive note though, almost as soon as I’d woken up, I’d realised that the horrible toxic, sickening sensation I’d had inside my head, well that was completely gone.

Neil had brought my phone and some other bits in for me, but I told him to take it all home. I couldn’t see properly, and had no inclination to look at a screen, let alone speak to anyone any time soon.

The HDU nurse was an almost constant presence, and I was having my obs monitored every 30 mins.

She would do all the obvious things, pulse, blood pressure, temperature, then a full neurological check, asking me to lift my arms, push and pull, same with my legs, smile, close my eyes. I lay there wondering what she was writing down.

Neil took photos to show me what I looked like. A photo doesn’t lie. I looked a bloody mess, I had an uncomfortably tight compression bandage around my head and covering my left ear, my eye stayed open and my mouth wouldn’t move properly, no matter how hard I tried.

I had bruising down my neck, my arms were also bruised, presumably where canulas and various monitors had been inserted. Swallowing and talking were difficult and awkward. I understand now this was caused by trauma to the trigeminal nerve during surgery.

Neil and my mum didn’t stay too long. Whilst they were thrilled to see I’d come out of surgery, I just wanted to sleep. I was now this horrible bedridden person, completely unrecognisable from who I really was, unable to do anything for myself. I was no longer a runner, walker, climber, but someone who now needed help to drink water from a sippy cup (like old folks in a home use) with a straw.

No sooner had I dozed off, than I was woken by my nurse who needed to check my obs. I began to notice that something was seriously wrong with my vision. As I looked straight ahead, everything had turned 90° on its side.

I mentioned this to the nurse, and she reassured me that sometimes these things can happen, but she’d mention it to the ward matron (?) when she arrived for her shift. I was scared to close my eyes in case it got any worse.

The matron came to see me, and again reassured me that after major cranial surgery these things can sometimes happen, but that she would mention it to the on-call neuro. I began to wonder, if these things happen, why are they concerned enough to mention it to the neuros? What weren’t they telling me?

What if they needed to go back in and fix whatever was broken? I don’t think I could have gone through that again!

I tried to rationalise what was happening. I looked at the beaker on the table at the side of my bed. It was on its side. But the water left was straight, so I knew my world wasn’t really turned on its side, and people weren’t really walking on the walls, and the sink wasn’t really on the floor.

To add to this visual nightmare, I had horrific double vision. There was a clock on the wall above the door to my room – but there was also another door and clock, about 2 metres to the right of it.

I also had screaming tinnitus, like light sabres from a Star Wars film, in both ears. Yes, I knew I’d be profoundly deaf on my left, but please don’t tell me I would have to endure this for the rest of my life as well?

That night was quite possibly the longest night of my life. I was scared to sleep, I couldn’t stop being sick, and nurses came and went all night fixing me up with IV pain relief, anti sickness meds and saline as I couldn’t keep any fluids down.

In the early hours, the on-call neuro surgeons came to see me. They looked like they had just left high school! They explained to me that these things can sometimes happen and that I shouldn’t be concerned. Then I heard him explaining to the nurse that they won’t overly worry about it for the first 48 hours.

Of all the risks that had been explained to me, this wasn’t on the list!

It was a long night, and I couldn’t fight sleep any longer. I nodded off, when I woke, I thought I was going to fall out of my bed. But as the hours passed, very very slowly my world, whilst still extremely double, began to right itself once again.

My first visitor the next morning was Simon, my ENT. He’d popped in to see me, despite it being his day off. He reassured me that there was no need for me to look so terrified. If he’d been in my shoes that night, I’m sure he would’ve been pretty scared himself!

He reassured me that the team were really pleased at just how well the surgery had gone, and that with a bit of support I should make a reasonable recovery. ‘Reasonable’ wouldn’t be good enough for me though, and with that I was asleep once again.

I’m currently working on my next writing project, How We Rise, but I need your support. You can find out more here.

Published by Sara C

It's hugely important to raise more awareness of brain tumours and the implications they can have on patients' lives. I aim to help to create wider understanding of the effects brain surgery and a diagnosis can have on an individual and their families on a emotive level through my own experience.

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