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What were your symptoms that led you to being diagnosed with a brain tumour?

I was diagnosed in January 2015 with a grade 3 Ependymoma- a malignant brain tumour at 18 years old. Two years later, and in remission, I thought it would be helpful to others to explain my symptoms/thoughts/feelings leading up to diagnosis in order to raise awareness of less well known brain cancer symptoms, and more generally, the importance of understanding and listening to your body.

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It’s probably the question I get asked the most and the question that I find most difficult to answer. Because for me, there were no ‘typical’ or well known symptoms. People do not believe me when I say that throughout having a brain tumour I didn’t have one headache or throw up. But it’s true, I didn’t. What I had was a feeling of something being off, a feeling that my actions weren’t mine, genuinely a feeling of something controlling my body.

This feeling started around 8 months before my diagnosis; it’s difficult to pinpoint the exact point in time that I developed a brain tumour, and both me, my parents, and medical professionals can’t say for certain. But this instinctive feeling of something being wrong was the first and for me, the most overriding symptom I had prior to diagnosis, so I will start from there. I tried to get it diagnosed as depression, but deep down I knew I didn’t have that as my symptoms weren’t consistent enough. SO, the picture on the left was taken 6 months before my diagnosis… I look pretty healthy right? And to be fair I was, I went to the gym, I had never touched a cigarette in my life, I drank but not to excess (regularly), my parents  (especially my dad, sorry mum) cooked great food etc etc. But a week prior I told someone close to me that I thought something was wrong in my brain, something very bad, I just had this instinctive feeling that something was growing and causing me to have less control over my thoughts and emotions. I had been more tired than usual but I’d just done my A Levels with many late night revision cramming sessions and I have always struggled with low iron. So after I said it, greeted with an understandably panicked reaction, I got scared, because effectively the way I put it to them was that I thought I had a brain tumour at 18 years old without having a shred of medical evidence, and that was crazy wasn’t it? Saying the things I was saying felt too real based on pretty much nothing so I backtracked and never spoke of this time again until after I was diagnosed because I was embarrassed I’d even said it. Instead I tried a different, less crazy approach the next day with my mum and said I had a lump on the back of my head in the bottom left corner (I did/do) and I asked her what I should do about it. Looking back I can guess that it was my way of asking for reassurance that it was okay to go to the doctors about something as scary as a  suspected problem with my brain- but even as I was saying it I was doubting myself.

Whilst my mum was mildly concerned I was the picture of health in every other way, so I didn’t go even though my mum never discouraged me from going. And then I got my A Level results, went to Lancaster university and got lost in the uni life, I partied, I drank, I made so many lovely new friends… but I still googled brain tumour symptoms nearly every day. My tiredness got worse, I became more irrational spending up to a grand a month- money which I had been carefully saving from working. My voice got deeper, I started snoring, I always seemed to have a cold (distastefully joking I that I had Ebola), I bounced from one emotion to another more easily than I had ever done and pretty much worked on impulse, and whilst if you look hard enough on Google these are all symptoms of a brain tumour, none of these things were serious enough to convince me that my suspicions were right so I said nothing. I was a uni student, and what student didn’t feel hungover or have a cold, or spend way too much in their first term of uni or begin to socially smoke too much and practically scream the lyrics of every Beyoncé song that came on in Sugarhouse, making your throat sore and hence your voice slightly hoarse. What teenager isn’t slightly ’emotionally unstable’? I justified everything because I felt ashamed to even be having the thought that there was something so gravely wrong with me when I had a good life.

In October I developed a twitch in my lip on the left hand side whilst playing Netball, that was unnoticeable to others but felt like a less irritating pins and needles- it tingled. I kick myself all the time that I didn’t see this as big deal but it lasted for 10 seconds if that, and happened maybe once a week, in addition it wasn’t painful so again I dismissed it.

By November looking back, I had become so far gone in my own mind that I hardly recognised irrational behaviour- it sounds more drastic than it was though- my new friends at uni hadn’t known me any different, I wasn’t living with my family any more so it was hard for them to tell with a phone call or a couple of days at home here and there. And more broadly my life was going through so many changes that I stopped noticing the changes in myself. 

December came around and I went home for Christmas, having decided I was going to go tee total and Vegan (on snacks only) in order to feel less sluggish because by then that was the main feeling I had, not quite awake and with it, like a mild hangover when you don’t feel sick or dizzy just a bit disorientated. I think back to this time as the quiet before the storm, I spent a lot of time on my own pondering my life, meanwhile my twitch had increased to 8 times a day lasting more like a minute. Why didn’t I say anything? I don’t know. I wish I could tell you but I just didn’t see it as a problem, I had this unexplainable sick feeling every time it happened and always thought ‘I need to mention this to someone’… but when it was gone, I just forgot. 

In January, I was speaking to my mum before going back to uni, and finally said I just wasn’t feeling right and I couldn’t explain it I was tired, I was hungover and not drinking and I was increasingly forgetful, losing my watch, iPad and laptop charger in the same week which was unlike me, she answered me with ‘did you ever get to the bottom of what that lump on your head was?‘ and that was it I don’t know why but it pushed me over the edge and I was off. I booked an emergency doctors appointment for the next day and almost ran into that waiting room. I told the doctor I was feeling tired, and about the lump on the back of my head saying I had a bad feeling and I didn’t even think to mention the twitch in my lip. She felt my head assured me it was just my skull, looked at my scalp and gave me shampoo for redness (I had just dyed my hair red) and told me if my tiredness didn’t go away within three weeks or if I was still bothered to come back and we could do some routine blood tests. I left the doctors disheartened.

I remember that I went to Tesco with my Dad on the way back and whilst I was in the yoghurt aisle with him jokingly parenting me ‘I’ve seen your pictures on Facebook I’m not surprised you’re feeling hungover and tired please calm down this term and I’m sure you will feel better‘ and whilst making a mental note to block him off Facebook, my twitch happened and so I remembered my twitch and remembered I hadn’t even considered mentioning it to the doctor, and I got this sick feeling in the pit of my stomach more powerful than I had ever got before, and this time I knew I had to pursue what my body was telling me. This was the point that I truly admitted to myself that I thought I had a brain tumour, I didn’t care what anyone said I just knew- but I still kept it to myself.

My mum came in from work that day, and I burst into tears and explained that just the way she must have known she had cancer before she was diagnosed, I knew there was something very wrong with me. She tried to reassure me in the same way my Dad did, my age, my overall health, what the doctor had said, but I was having none of it and I don’t know this but maybe something I said was echoing what she felt before she officially ‘knew’ she had cancer. Either way she suggested I go to my neighbours and tell them (a fabulous doctor and an amazing dentist) my symptoms. So I did. I dragged my best friend Joe who had just walked in the door back out of the door and to my neighbours, and I explained to them what I was feeling, they dealt with me so thoroughly but like my own doctor said the lump was just my skull… but I felt desperate so this time I told them everything from my night sweats which could have been explained by the fact I slept under a thick duvet, to my snoring which could have been due to being over tired but then I also mentioned the twitch. And that was when the casual atmosphere changed.When did it start?‘ ‘How long does it last?‘ ‘How often is it occurring?‘ ‘What does it feel like?‘ and every answer felt like a weight lifting off my chest because they were taking me seriously, and I was taking me seriously. Even Joe looked a bit subdued which if you know Joe is hard to imagine. They insisted on going to talk to my parents straight away and I can’t fault them or my parents as scans and neurologist appointments were arranged straight away. And on the 31st of January I had my MRI which showed a mass on my brain. Nowhere near the lump on my skull which was indeed nothing but what I had originally complained about.

My dad came into the waiting room and started talking about the book that I had in my hand and seeing him in that state I just obliged and went along with it, and then he said ‘D I think they’re going to say that they’ve found something’ … ‘okay’ he looked at me and asked ‘is that all you’re going to say’… ‘yes’. Because right then in that moment it was okay for me. It was the most okay I had been in the last 6 months. I had just had confirmation that I wasn’t going crazy, and can I just say the feeling that you are losing your mind is the worst, worse than being told you have a brain tumour at that point because at least now I had a cause. Obviously after that moment of relief, reality set in on the car journey home and things were not quite so rosy. 

But my point to this story and to anyone reading this, is both personal and supposed to be helpful. Personal because I feel that in order to close this chapter of my life I have to tell it or at least write it down. Hopefully helpful because you see my story of how I got diagnosed is much longer than this and I could go into more detail and more signs that maybe I should have picked up on but I hope that anyone reading this understands how important it is to listen to your body and to follow your instincts. All of my symptoms could have been and were by myself, dismissed, as nothing for months. I can’t blame anyone but myself for not understanding what I was trying to say to them because I was never consistent, one moment I’d attempt to tell someone how I was feeling and the next I’d try and laugh it off because I was scared or I’d miss out a crucial part because I wasn’t thinking properly, I have no doubt in my mind had I have articulated myself properly I would have got the treatment I needed faster. I was lucky because this delay in expressing what I already knew, could have caused my death but it didn’t and what would I have had to show for it if it did?

I can’t tell you why it took so long, and I can’t tell you why it took one sentence from my mum to spur me into action after months and months of denying it, maybe it was the reassurance that it was okay to go to the doctor. But that decision saved my life because saying it out loud to a professional meant that I wasn’t going to let it go again even if what I was saying wasn’t necessarily alarming. The whole time I had these thoughts and worries, I had a malignant brain tumour growing in my head, the twitch in my lip increasing in frequency due to the growth and the nerves it was pushing on it was actually a partial seizure, a form of epilepsy, if I hadn’t of said anything or pushed it by going to my neighbours then it may have been too difficult to operate on or too far gone to be able to save me.

Tumours can grow at any pace in which they please and even, rarely can produce little to no symptoms like mine, so waiting months like I did, or waiting until undeniable symptoms like full body seizures, can make them impossible to treat, I’m just lucky that it didn’t. My mind and body was trying to tell me something wasn’t right for so long, it was even trying to pinpoint the problem for me, to the extent that I went to the doctor initially for a lump on the bottom left of my head completely harmless and unrelated to the tumour found in the top right of my brain. It was like I was doing jigsaw and I had all the pieces but I just didn’t want to put them together because I didn’t want to see the picture.

So to anyone reading this who truly just feels wrong or off, please know that it’s okay to act off instinct YOU know your body better than anyone; and my instinct told me long before I had the confirmation of what I had, you owe it to you and everyone who loves you to understand that the only thing that will happen from keeping these worries to yourself is the potential of more pain for everyone in the long run. I have always been cautious to give this advice because I don’t want to scare people, I want to be clear that I was a rare case, and the likelihood is that someone reading this who has similar symptoms or feelings is medically okay and that’s great. However the possibility that you could be like me and wait that bit too long because of fear of creating a fuss or wasting people’s time means that I feel the need to write this. We all know that cancer kills, and the steps that we can take to prevent it but I think sometimes we forget that it’s not just reserved for older people or unhealthy people. Know your body, listen to it, and act on it. X

If anyone has any questions, please feel free to get in touch, I am more than happy to answer them.