In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
In November 2018, paediatric trainee doctor Aria Nikjooy was diagnosed with a rare brain tumour, sitting in his cerebellum. Aged just 27, he was operated on, treated with radiotherapy and chemotherapy and thankfully the tumour was kept at bay. Then, in March 2020, the same brain tumour came back and he had a second brain surgery. Devastatingly, a second recurrence came in July 2020 resulting in another brain operation and more cancer treatment. As part of his recovery and rehabilitation, Aria turned to writing. This culminated in him writing a children’s fiction book to help to explain the complex issues surrounding illness and cancer to his little boy.
Aria tells his story…
I was born in Sheffield, I went to a good comprehensive school, got my medical degree from the University of Birmingham, met my wife, got married and moved to Manchester, where we had our first child, a little boy, in July 2017. I was working night shifts as a paediatric doctor on the neonatal ward at St Mary’s Hospital. The shifts were awful. A couple of weeks before I became ill, my son was unwell with an infection and was hospitalised at the Royal Manchester Children’s Hospital. I had a lot going on and so when I started suffering from horrible headaches, I put it down to stress and tiredness.
Then one day in November 2018, while I was on shift, I felt so poorly with the headaches that I had to go home. I’d never done it before; I remember feeling ashamed that I could be so weak as to go home sick from a night shift headache but I knew I just wasn’t well enough to be there. A couple of days later I saw my GP. By now I was also feeling nauseous and I had noticed my speech was slurred. The latter symptom was a red flag and so my doctor sent me for an MRI scan the following week.
“I can’t remember exactly what the doctor said when we found out, all I remember is the word ‘mass’ and then something about calling the neurosurgeons. My first instinct when hearing bad news is not to listen properly. I zoned out.”
I felt numb. I didn’t cry or swear. I didn’t want to blame anyone. I didn’t even want to hold my wife’s hand, I just sunk into the chair, the world shattered. I found out where I needed to be to have my biopsy the following day. A brain biopsy involves being put to sleep and then a very skilled surgeon pokes around in your brain through a hole in your skull. They zone in on the bit that the scan said was a ‘suspicious mass’ and they take a bit of brain out for someone to look at under a microscope.
I felt OK after my biopsy and went home after a couple of days. At this point, I didn’t yet know if my ‘mass’ was cancerous or a so-called ‘benign’ tumour. It turned out I wasn’t so fortunate. A week later I was in the surgeon’s office being told it was a grade 4 cerebellar medulloblastoma. The message from the Multi-Disciplinary Team (MDT) of oncologists and surgeons was clear – take it out and cross our fingers.
I had my surgery at Salford Royal Hospital on 9 November 2018. I felt a lot of trepidation going in for the operation but I put my faith and trust into my amazing surgeon, Mr Pietro d’Urso. Plus, I just wanted to get it over and done with. I was under the knife for a good seven hours or so.
“Waking up afterwards was – as you can imagine – not a barrel of laughs. I threw up almost immediately. I had oxygen up my nose, two tubes in my arm and a catheter fitted. I felt truly awful.”
During my time in the High Dependency Unit (HDU), I vomited profusely and randomly. My head was constantly spinning. I was given every drug and pill in the book to try and manage my nausea. I had tablets, intra-venous drugs, drugs that were injected under my skin, patches on my arm and on my neck. There was one thing that united all the meds; they didn’t work. I recall hearing the term ‘guinea pig’ when describing my treatment options. The doctors didn’t know what to do. It was a case of ‘try this, try that’. I became an experiment and I was the hot topic in almost every conversation with my medical team. Towards the end of my stay, my doctors had to apply to the health authority for permission to give me certain drugs. They even applied for a cannabis-derived drug which seemed to ruffle a few feathers. It didn’t work either.
“Speech was the other thing I noticed wasn’t right when I woke up from my surgery. Whereas before I would often use my words to get me out of sticky situations, now, I was totally embarrassed to open my mouth.”
I was scared that people wouldn’t understand me. Every doctor likes to hear the sound of their own voice, it’s an occupational hazard. My voice was slow, sluggish and difficult to decipher. A good example would be me phoning my bank. Before my operation, I had set a voice password, which would put me through to a pleasant human being. Only now it wouldn’t understand me and I would just start raising my voice and swearing at it.
Six weeks after my operation, I was transferred to specialist cancer treatment hospital, The Christie. I was supposed to go home, recover and come back to have whole spine and brain radiotherapy for six weeks, on an outpatient basis. Instead, I was taken by ambulance as an inpatient, as my symptoms were so severe. The ambulance crew had to lie me down on a trolley with my head facing the right side. Any other position and I’d throw up. The radiotherapy itself was relentless. I had thirty fractions, which effectively meant I had radiotherapy every day Monday to Friday for six weeks with weekends off. The procedure involved me lying flat, face-up, as I was slowly inserted into the oversized whirring donut machine. I had my mask on so I couldn’t see much but I got other, strange sensations, such as a really weird boiled broccoli smell, pretty much every day.
I was eventually discharged in January 2019, having spent two-and-a-half months recovering in hospital. Once I was home, the next stage of my treatment was chemotherapy, roughly six weeks after my radiotherapy finished. I had the treatment every six weeks until I’d had six rounds of it. The idea was to give my body time to recover in-between doses. The treatment did, however, pose a difficult dilemma. I’d had three cycles of chemo when I started to think enough was enough. Although I seemed to be getting better overall, there are some nasty long-term effects from chemotherapy that I was eager to avoid. Like infertility or an increased risk of future cancer. My dilemma was that there isn’t much evidence that my tumour responds to the type of chemotherapy I was being given. My cancer is a rare beast that usually affects children, not adults. Therefore, there isn’t much research into what treatments work, and which don’t for me. I eventually decided to stop after four cycles out of six. My doctor told me he was happy that I got to four cycles and the greatest effect was from the first couple of rounds. That made me feel better, although there was a nagging voice in my ear telling me I may have just signed my own death warrant.
By November 2019, a year after diagnosis, I was finally able to return to work on the paediatric rheumatology ward at the Royal Manchester. I went back on a part-time basis, working as a supernumerary on a day shift pattern, mostly shadowing other doctors. Only a few months later, however, my cancer came back. It was March 2020 and the UK was about to go into lockdown due to the global Covid-19 pandemic. The government was instructing that people with ‘chronic medical conditions or cancer’ should isolate for three months or so. I wasn’t entirely sure whether I still had cancer and whether I should consider myself to be ‘high-risk’ but I didn’t have very long to ponder the question; within a few days, I had my next appointment with my oncologist. It was a Wednesday morning, I planned to go into hospital, have my blood test, come home and speak to my consultant over the phone. I expected to be told everything was fine and I’d even planned to go into work later that morning.
“When I spoke to my consultant, however, he broke the news that my latest brain scan was showing something and that they needed to find out what it was. I’ve never been dumped over the phone before but I’m assuming it’s similar to what happened to me then.”
My consultant was pleased to learn I had no new symptoms and my blood tests were fine. He then said something about discussing my case at a meeting with other experts and telling me the ‘something’ could be nothing, scar tissue from my previous operation for example but I knew what it was. I knew what was sneaking back into my life like a thief in the night. My wife put on a brave face, but she knew what I knew.
I didn’t go back to work after that. I knew my next port of call would be more brain surgery. My consultant decided I was high-risk, so in that instant, I knew I would be self-isolating at home. That is, as long as I survived the next bit. My wife’s hand went to my knee, it was her news as well as mine, after all. Telling someone they have cancer is probably the most poignant piece of news-giving we learn about at medical school. My thoughts were: ‘I’m going to die, I’m going to die, I’m going to die’. In my limited experience when cancer reoccurs it’s usually a bad thing. In reality, what they suspected was a new cancer, was actually a small growth on the edge of where my original tumour used to be. It was going to be a smaller operation than before and therefore, hopefully, a shorter recovery time. The biggest issue was what to do about the Covid outbreak. My surgeon’s dilemma was that he wanted to operate sooner rather than later but there was a much higher risk to me than last time. As well as potentially contracting the virus in my weakened state, there was the fact that staff members were going off sick and self-isolating left, right and centre.
Luckily, they managed to slot me in two days later. My wife and my father came with me to the hospital. I was quiet, unlike last time, as I knew exactly what was coming. Last time I was operated on, my wife came into the anaesthetic room to be with me as I fell asleep. No such treatment this time, as they had changed their policies due to Covid. So, I said my pathetic goodbyes (what are you supposed to say in a situation like this?) and promised to see my family after the operation was over. I wouldn’t see them now until my discharge, whenever that would be.
“When I woke up from surgery, I was relieved not to be vomiting everywhere this time. I reached to the back of my head and felt the stitches on my elongated scar. I moved my legs, but they felt like lead, so I gave up.”
I moved my head to the left, and then to the right – no vomit. I was out of the hospital on day three with a bag full of meds, of course, and instructions on how the stitches in my head would be removed. One of the difficulties, this time, was re-learning to walk at home, with the concerned nurses and physios replaced by my family. It’s a difficult thing, explaining just how dehumanising it is falling over all the time. Just as I was getting to grips with finding my way to a sofa or chair without having a meeting with the floor, the nausea reared its ugly head again. I’d only been home one night when I violently threw up the next morning. It seemed my body was playing one last cruel joke though because then my nausea all but abated and I had no more vomiting episodes. That is, until my second round of chemo when my body played another couple of cruel jokes on me and I vomited at least a couple times in the middle of the night and then in the morning. Still, nothing like before.
For me the main offender this time was my left hand. Luckily, I’m right-handed but despite my right arm being alright, trying to tie your shoelaces with one ‘alright’ hand while the other looks on apologetically isn’t much fun. On top of that, my legs felt like they were made of lead and having to use the opposite hand to drag my foot up on my opposing knee in order to put your shoes on was hugely challenging. You don’t prepare for this kind of thing, emotionally I mean. If someone reading this has recently had a worrying scan, or you think you might need looking at by someone medical, then take note; listen to your doctor when they list all the terrible things they’re going to do to you. Listen when they tell you your hair will fall out and you’ll have to learn to walk again.
“Arm yourself with information, don’t let anything take you by surprise and catch you off guard. Things are much harder to deal with if you don’t see them coming. Don’t do what I did and pretend everything is OK.”
The isolation created by Covid-19 combined with cancer and the stress generated by the toddler-tornado I call my son, resulted in – avoidance. Avoidance of dealing with minor problems calmly, avoidance of sitting down and absorbing the impact of how my life was changing, avoidance of sensible human reactions to sensible human emotions – like sadness, regret or white-hot anger. When there was no Covid-19 the last time I was recovering, I was able to meet friends or have people visit the house. That doesn’t take anything away from the role my immediate family play; it’s just a different experience speaking to a contemporary about something as inane as the weather, the state of the Brexit fiasco or Arsenal’s chances of winning the Premier League.
“My third round of cancer woes came in July 2020. Just like in March, I hadn’t experienced any new symptoms, but a routine MRI scan revealed tumour recurrence, which resulted in a third brain surgery followed by my second round of radiotherapy as an outpatient.”
Thankfully, I recovered as well from my second ‘lockdown’ surgery as I did from my first, so I was able to leave the hospital after just a couple of days. The chemotherapy I was on after my first recurrence was clearly as effective as a chocolate teapot, so I will soon start another type of chemo as well. At home, I have regular physiotherapy and speech and language therapy sessions and spend the rest of my time going out for walks (I can manage one or two miles now), shouting at daytime TV, playing with my son and writing.
I’ve always had an interest in words and literature but when my degree and then my career took me down the scientific medical route, my writing took a back seat. More recently, with time on my hands and a new perspective on life, my toddler inspired me to write an illustrated children’s book. It’s called Eddie and the Magic Healing Stone and I hope it will go some way to explaining my cancer to my son, perhaps not now but hopefully in the future. The book tells the story of Eddie the dinosaur and Larry the lion, by touching on the concept of sickness in a parent. It aims to gently introduce the concept of illness in a parent but it is also just an entertaining story for young children, full of magic and silly characters. I must have sent the draft to around one thousand publishers and eventually, I got lucky and The Endless Bookcase agreed to publish the book for me.
One of my biggest concerns of being in the hospital and being away from home for so long was how my wife had to look after our son day and night. She got him out of bed, took him to nursery, fed him, bathed him, changed him, put him to bed, listened to his cries and visited me in the hospital every chance she could. I knew he was in the best possible hands. I knew he was loved and that everything was under control yet I felt like I was abandoning him, letting him down, even though I could hardly teleport to his side from my hospital bed. I felt like an absent father and it made me respect my wife even more for what she did. I love them both so much and am eternally grateful to them and to all those that have supported me, physically, mentally and emotionally. I want to say thank you to all the people who have kept me alive up till now. All the people who have kept a smile on my face. All the people that have sat there and absorbed my volleys of verbal venom, never complaining. All the people that have allowed me to be me, and maybe even a better, wiser version of me. Cancer is a horrible thing. There's very little good that comes of it. That’s just the way it is. My aim is to be the next best thing I can be right now. Not what would be expected of me as a result of having cancer, but the best version of me, I can be.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.