Interlude pt. 1. The Haemorrhage

Today mum, dad and I drove to Queen's Medical Centre for an appointment with a neurologist. I had had a repeat MRI done in March which the Leicester neurology team referred to a specialist who we were visiting for feedback.

On Saturday 22nd September 2018, at 11:00am, I got up and went to the bathroom. I'd had a drowsy morning after a week of early starts that Feshers' week, where I had been flyering for the International Café which our Christian Union runs. My third (final) year of university started on the Monday. I'd made sure my weekend was free, so I had plenty of prep time, and I had nothing planned for that day. Whilst sitting on the toilet I began to feel a bit sick. 'What was in those brownies I ate yesterday?' I thought. I'd had migraines before, and this sick feeling felt a bit like that but not in my stomach, it was a feeling in the centre of my brain. Migraines had always been behind my eyes. I went to brush my teeth, and got as far as squeezing out the toothpaste and raising the brush to my mouth, when my left arm just fell down by my side.

I put the toothbrush down on the edge of the bathtub, toothpaste and all, figuring I was going to be sick, and might as well brush my teeth after that happened. I went back into my room and lay down on my bed, left leg clomping along in a very strange way. On the bed, my right arm and leg started convulsing, but I remember still being able to grasp my left arm and thinking 'thank goodness I can still use my right!' I'd managed to put my paper bin next to my bed for when I was inevitably sick. I rolled to the side and threw up in it, then couldn't roll back onto my back. Then I had the worst throbbing pain I'd ever felt, deep in my brain. My vision went patchy kaleidoscope, but I didn't pass out. Next thing I knew, I was on the floor. I was somehow facing the other way from when I'd been lying, so I was flat on my back facing the door.

My right side was still banging about, but I could influence it a bit. I kept it going as a help cry. I couldn't cry for help as I suddenly couldn't move my mouth. I could make a horrible, strangled, dying sound that I didn't want to make, so I didn't. I couldn't move my left side at all, or feel my face. At least I couldn't feel the vomit on my face, or smell it. It was very frothy and not a lot. Maybe it was from my lungs, as I couldn't breathe voluntarily, but kept on taking ragged gasps. I kept wondering when they'd stop. They didn't. I thought, why am I not dead yet? I thought you blacked out if you had a seizure? I peed myself, which was the only relaxing moment. I kept thinking I should grab my phone, as it was literally charging on the floor right next to me. I could hear life going on as normal for my student house. Adam's girlfriend was leaving, then Adam was playing music.

Adam burst in, after about an hour, screaming "Liz!" He heard the awful breathing. I knew he would come, and would do all the right things. He checked me and called 999. I heard him copying my breathing over the phone. Next thing I remember, is the paramedics bursting in, then being in the Ambulance, then being run into A & E on a stretcher. A doctor was jogging alongside me shouting commands to the others. One medic checked my reactions by scraping my feet with something. I remember the tickle in my right foot. Then I was sedated. I woke up the next day in neuro-intensive care in the Royal Hallamshire. I'd had an interparanchyl brainstem haemorrhage. This type makes up 8-13% of all strokes,  and you are very unlikely to survive one. 

Today, the doctor (well, 'Mr.' not 'Dr.' which as dad said, means he's a surgeon), went through the scans I'd had over the last few months. You could see the residual blood had gone down a lot. He said the haemorrage was likely to have been caused by a cavernoma bleeding. This is a clustering of blood vessels in the brain, like a bloodblister, inside which is a cavity which can fill up with blood and overflow. They don't go away. Little is known about them. I have the one in the right of my brainstem which bled, and I was told I have another very small one in my left cerebellum. People often find out they have a cavernoma by accident, when they have a brain scan for something else. There is a miniscule chance of cavernomas bleeding. Where it has bled before, the risk of it bleeding again is increased, but this risk reduces, as time passes. I want to stress again how rare it is that a cavercavernomanoma will bleed.

Medical staff can't offer much help here. The cavernomas are so deep in my brain they can't do surgery without damaging everything else. There is a form of radiation therapy called gammaknife they do in Sheffield which the doctor will refer me too. I'm not keen though. It sounds like a big risk for something dormant. He will recommend a genetics test so I can find out if I could pass it on, as cavernomas are often genetic. He will also recommend a further MRI scan to show progress in my brain since March.

I reflected, I am way more likely to be in a road accident or to hurt myself in the house than I am to have another brain bleed. At least the cavernomas are only near my physical movement centres in the brain, and not my thought centre. If it's God's plan to use me with disability, that has to be okay. He cares infinitely more about the state of my soul than the state of my body. (Of course, he adores the body too.) He wants me to live, he can have me. I want to be okay with that. What a decision; to live each day to the full, or not.

I find the eyeballs funny. Brain scans are always chin shots, so the bleed (that white blob in the middle), is actually to my right.