Brain tumours, blood clots, and living life with hidden disabilities

Tilly reflects on her experience of being diagnosed with a brain tumour and a blood clot on her brain and tells of the impact this has on her life as a teenager.

I’d felt a difference in my body, but I’ve always ignored illnesses; I even tend to avoid buying paracetamol or taking ibuprofen when I have a cold or headache or whatever, so the weakness in my left side didn’t seem important or abnormal, even. However, it was during an AS psychology lesson when I realised that I needed to go to the doctor. We were learning about how the left sides of our brains control the left sides of our bodies, so if we were to wiggle our fingers on our left hands then it would be the right sides of our brains working. And of course, being the adolescents we were, we all decided to wiggle our left fingers. But I couldn’t do it – heck my fingers were physically shaking when I tried to even move them. This was strange. This was new. This, my teacher told me, needed to be reviewed by a doctor. So, I did it, I booked an appointment with the GP.

What followed was numerous doctors’ appointments, nerve tests wherein the doctors would knock me in my joints with wooden blocks, and several conversations warning me that best case scenario, I had a little nerve damage and worst-case scenario, I had MS (oh how naïve they were). The latter panicked me; I mean fuck, I had my AS exams that LITERAL week! How was I supposed to concentrate on my exams when I might have MS … at the young age of 17? But no one at school understood, in fact, some accused me of being over dramatic or attention-seeking.

"I unprepared for the huge change in my life that was to come..."

Fast forward a week, I was almost through my exams when the GP made a referral for me to have an MRI, but of course there was a waiting list. 6 fucking months. Thus, not only was I terrified at the prospect of having a scan that is commonly related to cancer, but also at the thought that I could have MS and not know for certain for another 6 months. Fortunately, the universe works in curious ways, and I was called in for an MRI 3 days later due to a patient cancellation and boy was I unprepared for the huge change in my life that was to come. The scan wasn’t as scary as people might imagine, but it certainly wasn’t fun; you lie in a claustrophobic tunnel completely still for 45 mins or so (if you make the slightest movement you’ll have to start again) whilst a variety of loud banging, clanging and beeping noises overwhelm your ears.

2 days later my mum woke me up in a panic telling me that the hospital had rang to say that I needed to go in and speak to a consultant urgently. That’s when we knew that this was serious.

“We found a brain tumour seated deeply in the right side of your brain and you’ll have to be referred for surgery immediately,” the consultant told us.

A brain tumour? What? That sounded dramatic. That was bad, wasn’t it? The doctors hadn’t mentioned that this could be the case. And brain surgery?

It was benign at least, but it was pure luck that I’d got in for a scan that day or I’d have been a goner. I think the consultant gave me a lot of useful information including the name of my specific tumour (which I still can’t remember), but I couldn’t concentrate on what he was saying due to the shock, due to the warm, salty tears trickling down my puffy cheeks, due to the thought of my then 10-year old brother sitting in the waiting room outside watching confused and dumb-founded as I walked over to him with my mum, both of us crying.

Less than a week later, I was booked in for surgery at Alder Hey Children's Hospital at 8 am on a Thursday. A nurse came in at 6 am to prep me for the surgery, gave me a gown to put on, and squeezed a pair of compression socks up my legs. The socks were so tight, they felt like they were crushing my bones. Then a group of nurses pushed my bed through the MRI waiting area wherein I saw families waiting for their children to be seen to: kids with no hair, broken limbs, and enlarged heads. They all looked back at me wide-eyed, and I suddenly felt sadder for them than I did for myself.

We then went into the “loading bay.” I felt like a parcel being shipped, especially when the anaesthetist began lifting and prodding my limbs and I had to just lie there like a puppet until everything went airy and then blank.

"they found a blood clot on the opposite side of my brain to where the tumour was"

I woke up 32 hours later and felt high and confused, and it wasn’t just the morphine. There was something seriously different going on in my brain; I wasn’t me. Turns out they found a blood clot on the opposite side of my brain to where the tumour was, so they had to stop the surgery and perform another one on the other side which my surgeon said was as aggressive as being hit by a train. This meant that they didn’t remove the whole tumour and that I’d have to have another surgery. But they told me this several times; I was so out of it from the blood clot I couldn’t comprehend anything. Plus, I could see cats crawling around the room and everyone was walking around wearing Hannah Montana wigs. It wasn’t until three days later when I told a nurse that I couldn’t piss due to Rupert the bear staring at me that they realised I was hallucinating, yet it all seemed so real to me.

But this wasn’t the worst part. The worst part was seeing how upset my family was and knowing that I was the cause of their tears. The worst part was feeling like everyone was treading on eggshells around me and that I couldn’t talk about my feelings in fear of upsetting everyone even more and because nobody could understand what I was going through; to be honest I couldn’t understand it myself. The worst part was that people who’d been mean to me in school were suddenly my best friends and I had to go along with it to avoid being the pitiful sick kid. The worst part was feeling like more of an outsider than I did before and fearing that I’d never be “normal” again.

During the first few weeks post-surgery, I needed help showering, going to the toilet, getting dressed, and brushing my hair which, at the age of 17, felt fucking embarrassing. So, I spent the next few months rebuilding myself, rebuilding my strength, rebuilding my brain. This meant doing physio, trying to go on little walks despite feeling nauseous and like I was drunk from the impact of the surgery on my brain, and forcing myself to read at least one page of a book a day. I always remember the first time, a month or so after my surgery, that I managed to do my bra up without help. I spent 45 minutes trying to put it on. It was probably the most emotional 45 mins of my life but when I finally did it, I burst into tears of sheer relief and then cried even more with embarrassment at the fact I was crying about performing such an easy and mundane task. But this to me proved that I could do anything and from here on, I really started to recover.

Despite being discharged from being an in-patient at the hospital and being told that I could have the summer off to recover from the blood clot before the next surgery, I had numerous hospital appointments to check that I was ok and tests to see if anything had significantly changed since the first two ops. The worst test was an EEG which is an electrical test that examines how well your nerves work. This test was awful, it consisted of me having wires stuck to me all over my body so that the doctor on hand could electrocute me and turn up the voltage until my body reacted. If I could have seen myself, I can imagine I looked like the monster from Frankenstein when he is all wired up to be brought to life.

I also had a visual field test. This was because I suddenly couldn’t see things in my left visual field or below me. I noticed this one day whilst on a walk with a friend whereby I literally bumped into every bin outside of every house down this long road because I just couldn’t see them. Turns out that I now had tunnel vision, meaning that I have no peripheral vision and so will never be able to drive which fucking sucks.

Once I’d finally started to recover from the surgery, I was booked in for my third operation and I feared going back to where I was after the previous ops. But luckily there was no blood clot this time. Thus, I woke up feeling a lot more with it per se, though there was one slight catch; the surgical team realised that removing the whole tumour would both paralyse and blind me, so they had to leave part of it in my brain. This devastated me. Whilst my family was happy that the surgery had no issues like the last one, I couldn’t help but fear that the residual tumour left in my brain might start re-growing and that I’d have to go through all of this again. And now 6 years later, I’m still having routine MRIs and spend a profound amount of time waiting in hospital waiting rooms for various appointments. My body has never been the same since, I have physical, visual, and mental disabilities now, and there always seems to be problems with it, but this is ok, it’s just a little part of what makes me unique.

This experience has made me become incredibly resilient. The last op occurred at the start of my final year of A-Levels, and I went back to school just 2 weeks after it to carry on with my studies despite missing months of school and having to adapt to living with a slower, more forgettable brain. I even got into my first-choice university after it, ignoring the advice to postpone my exams for a year. I also love that I’ve been able to use my experience to help others by becoming a young ambassador for the Brain Tumour Charity. As a young ambassador, I felt, for the first time since my diagnosis, like I was not alone as I met lots of other people who’d had brain tumours, and I used my story to raise money for more research into less invasive treatments and offer advice to others preparing for surgery.

So, if you can relate to this post, although a brain tumour diagnosis may be the scariest thing in your life, please know that you’re not alone and that there is plenty of help out there from charities and support groups like the Brain Tumour Charity.