A Bizarre Set of Circumstances

By Louis Laws

I have a picture on my wall which I take with me wherever I go. It's the profile of a skull, missing its jawbone, which is detailed and vibrant with neon colours. On the skull’s forehead, a collection of symbols are bestowed in the shape of a hexagon, with a crudely drawn diamond in the middle. Right below the left eye socket, perpendicular to the nasal cavity, are inscribed the words “tomorrow is a mystery”.

I’m not sure why I like this picture so much. In a grim sort of way, I look at it as me, as my skull. All drawn and quartered into different colours, with different parts of the brain entombed inside the highlighted cranium. Cyan, magenta, deep purple, all displaying what I believe to be different parts of the brain. If this was my skull as displayed, I would be missing most of the violet part, as this was where the surgeons performed my craniotomy, and removed the tumour from the right side of my brain.

To most people, a brain tumour diagnosis may sound like a death sentence, or a major disability that will debilitate you in everyday life. Many will feel sorry for you, sad even. People won't always know what to say, or even begin to understand, but that doesn’t mean that people won’t do their very best to support you and show you that you’re not alone.

I’ve been living my life in six month chunks for the past four years. Every six months I’ll have another MRI scan and from there I can plan how I’m going to keep on keeping on, or whether I require further surgery.

My journey into brains and how they work came at the start of 2019, on the second day of the new year. I was at a music festival at the top of the Mount, having a great time without a care in the world. Up until then, I had always lived with a naive sense of invincibility, an invisible cloak of untouchability. I had just turned twenty and felt like a life of adventure and opportunity was in front of me.

I was walking back through the already oversold crowd, and the next thing I knew I was smack-bang on the ground. I was physically assaulted, hit on the head multiple times. A king hit, right out of the blue, had rocked me right on the temple of my skull.

After dusting myself off and recuperating momentarily, I carried on dancing for a while, before passing out in a heap. My friends then took me home for the night. It was all a bit of a hazy blur, that’s for sure.

I was taken to hospital the very next day, where for an excruciating number of hours, I was subjected to multiple tests and CT scans. At the end of the day, I was told I had sustained a significant concussion and that I should probably take some time off work for a few weeks and go home.

The doctors also noted that they found quite an unusually large cyst in my right frontal cortex but that I shouldn't worry about it for the time being. I took some time off, went back home to Nelson, and recovered down there for a short while.

As time went on, I started feeling differently about things. I wasn’t too sure what was wrong, but I felt a depressive emptiness. I blamed the concussion, thinking that I’d had a few too many bad knocks to my head. Here I was at the start of my final year of university, things seemed to be falling perfectly into place, yet I had a sense of dread that there were much worse times to come.

At the end of February, I received a call from someone at the neurosurgery ward at Auckland Hospital. I had missed an appointment apparently and the doctors wished to see me as soon as possible.

I remember that day, at the neurosurgery clinic, when I went in to see the surgeon. It was a Monday afternoon in March, when he sat me down and told me that I had a brain tumour.

It was a right frontal astrocytoma, graded on a level of two. They had discovered it from the CT scan that I had after the incident and I was told that they would need to operate at the earliest opportunity.

I was in shock. Until then I had no idea there was anything wrong with me, physically. I was totally asymptomatic - no history of seizures or epileptic fits, which are common signs of a brain tumour.

The surgeon asked me if I had any further questions, and I responded by asking him what a brain tumour was. He then proceeded to google all of the best websites for further information while also showing me which websites to avoid. I left that afternoon confused, unsure of myself, and numb.

The next day, I remember calling my parents with the news. I also recall telling my sister and breaking down in tears on the phone outside of my university classroom. I was overwhelmed with emotions that I couldn’t even begin to comprehend.

My parents, struck with grief, cancelled their trip and flew up to Auckland to see me. They booked a private consultation with the surgeon at his clinic, where he explained everything and separated the facts from the fiction. I couldn’t begin to wrap my head around what was being said, all I heard was radio static and saw tunnel vision of this inevitable period in my life.

For the rest of the year, the brain tumour diagnosis had a significant impact on what should have been my final year of university. My attendance in class dropped right off and it took a toll on my grades. Suddenly I was now having to deal with a situation which genuinely felt like life or death. It was fundamentally debilitating, to the point where I was petrified with uncertainty. I was facing my own mortality head on, and I wasn’t at all hopeful about the future.

Going through brain surgery is a great unknown. You feel unsure of the effect it will have on your cognitive ability and brain functionality. All the while friends are in your ears talking about neuroplasticity and this and that, but they don’t have a clue as to how this might affect you as a seemingly capable human being.

It was incredibly hard, I didn't feel like I had the support I needed nor have had now. I would take each day as it came, time dripping by, passively waiting until the day came for my surgery.

At the start of August 2019 I got the call up. We were just about to start our final projects for the year when I got the message from the hospital. There wasn’t much time to react, I had to come to terms with the fact that this was happening for real.

I spent a day or two in the hospital before going under the knife, so to speak. I can’t remember much from that first surgery, only more or less what the people around me can recall. I do remember being moved around a lot, as at the time the hospital had a shortage of ICU (intensive care unit) beds. I spent a week in the ICU before I was released, set free into the world, literally missing a part of my mind.

Unfortunately the surgery took a rather twisted toll on me mentally. I didn’t pass the year and I missed graduating by little more than fifteen points, which amounted to a single paper. When I applied for an extension for an assignment the staff at the university refused to believe I was having surgery, and I had to wrangle up an insane amount of evidence that I was indeed having a part of my brain removed. At graduation, I watched all of my friends go up on that university stage while I had to wait another year to pass one measly paper. At the time, it felt like a sick rite of passage that people are forced to go through and this was now happening to me.

That was three years ago and I’m doing much better now. I’ve finally graduated from university and am working in my respective industry. I’ve finally been able to wrap my head around all of this, which at the time, was not an easy thing to do. Given the circumstances of the past three years, it hasn't been easy for any of us.

In October 2022 I received an unexpected call from the neurology department at Auckland Hospital, asking if I could come in the following week. I had a pretty clear idea of what it was about but did not want to jump to conclusions, just yet. I was given the news that my brain was looking a bit ‘abnormal’ and that the tumour was slowly but surely growing back. It was recommended that I have further surgery.

I think it's great that the doctors and specialists always give you an option, without swaying you into taking it, but then if the tumour does come back, it is their way of saying “we told you so”. It was not my first rodeo after all, so I opted for a follow-up second surgery to remove the lesion, and on 17th November 2022, about a week after my 24th birthday, I went under the knife again.

After the surgery I spent a few months recovering back home in Nelson. It was not an easy summer for me, being back with mum and dad at the ripe old age of twenty-four. It isn’t where you want to be as a young man who should have his whole life ahead of him. Now I am in Wellington, receiving some excellent treatment from the regional hospital here in the form of radiation therapy, to potentially be followed by chemotherapy.

You never know where your life will be going until you're struck by a kind of metaphorical lightning. In my case, it was by being punched in the face and left with a severe concussion. But had this not happened, I would never have gone to the hospital and they would never have discovered my tumour.

The doctors had no idea how long it had been growing in there - it could've been years. The tumour been pushing up against my motor cortex and had they not found it I could’ve lost all control of my voluntary movements. I am incredibly lucky in this way, I owe that man who hit me on the head a beer. He was looking out for me.

I never imagined that I would be where I am now. A bizarre series of circumstances has led me to where I am today and, for better or worse, I am here because of it. As it says on the skull, perpendicular to the nasal cavity, “tomorrow is a mystery”. These words have significant meaning for me - I hold them dearly, and take them with me wherever I go.

Louis Laws
May 2023