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My Brain Tumour Story

It was scary, but I lived to tell the tale.

I felt inspired to finally write about my diagnosis and treatment for a brain tumour after reading Jennifer Dary’s account of her recovery from brain surgery, plus this article from the Guardian that appeared in my Twitter feed.

Brain tumour research to get £18m injection | Science | The Guardian

£18m is a lot of money from some perspectives, but not so much from others. I don’t know how much of a difference that amount of money would make, or what that sum would cover, but it is good that there’s a greater investment in studying this particular cancer, as there’s so much we don’t know about it — and I have a vested interest in that were I to get another tumour, I’d like to survive that one as well.

I didn’t know the long-term survival rates were so bleak — according to the above article, less than 14% of patients will live longer than 10 years post-diagnosis. 20 years on, I consider myself extremely lucky and I have a limitless pool of gratitude for my surgeon & theatre team, the ICU and children’s ward staff, fate in general, and whichever deity it was that smiled favourably upon me back then (although if it was the same god that gave me a brain tumour in the first place then we need to have words).

Take a look at this baby

Lots of people ask me about the impressive scar I have on the back of my head, and I often regale new acquaintances with this sobering story, so it’s about time I wrote it down. It probably won’t be quite as interesting at dinner parties if I just send out a link via email, but I suppose I might be able to reach a few more people this way — and awareness of different experiences enriches everyone’s world. So here is what happened to me:

A little over 20 years ago, I was in high school preparing for my GCSE exams. And I was feeling mighty ill. I had a constant, dull headache every day, that was worst in the morning (I have never been a morning person and I’ve carried this proud tradition into my adult years). It felt like my skull was being slowly crushed, and no-one really knew what to do about it. The first time I saw my family doctor about it, it was suggested that I could be having migraines, and so I was prescribed preventative medication.

As time progressed, my symptoms became weirder and more numerous. I experienced vertigo almost every day, on occasion so severely that I was unable to stand. I had seizures for the first time in my life. I once began speaking in tongues, which fortunately my parents didn’t mistake for demonic possession. I became increasingly confused and at one point was unable to decipher text. I had visual disturbances, adding weight to the migraine theory, but not explaining any of the other weird shit that was going on. And there was that one time I randomly projectile vomited in art class — which would probably have won me the Turner Prize had I the foresight to bag it up for the judges to muse over its true meaning.

Things were not getting better, so we returned to my GP’s surgery. This time I mentioned that I was having pains in my spine (in addition to all the other wild symptoms), so the natural diagnosis was of course… constipation. That’s right, I had a sodding BRAIN TUMOUR and I got diagnosed with constipation. I can see similarities with this article, where the little girl was incidentally diagnosed at the same hospital where I had my first scan:

‘Medics missed my daughter’s brain tumour 22 times’ says mum whose daughter couldn’t lift her head because of pain — Mirror Online

I have wondered why our GP was so inept at noticing there was something more serious going on. It may be that because everything is rare when you’re a child, the chances of it being something deadly were slim. But that doesn’t excuse the fact that all those peculiar symptoms went unchecked. I know that teenage girls are one of the groups likely to be taken less seriously by doctors and other professionals, and I also believe that my family’s low social class fed into it — there was a perception that my ilk were a bunch of malingerers hamming it up for paid time off sick.

All the while that this was happening, part of my central vision was obscured by a twinkling pinky-purple patch. It started off small, and grew slowly over time. In the beginning it came and went, but eventually it became permanent. I was due an appointment with my optician anyway, so I told him about it at the beginning of the appointment. He looked at my retina and immediately saw that there was something wrong. He phoned my GPs surgery there and then, and told them that I needed a referral to hospital immediately for a CT scan. I was booked in for the next day, which is extremely unusual — but it gave an indication that there was something dire going on inside my brain.

I had the scan, which was a little unnerving going into the scanner for the first time (I’ve done it so many times now that it feels routine), but it wasn’t entirely unpleasant. The scan revealed that there was a lot happening within my skull, but a more detailed scan was needed to accurately describe what was wrong. That was scheduled for the next day, when I was sent to London for an MRI scan. This was also a rather shorter waiting time than I would expect!

MRI scans are a different experience to a CT. The “tunnel” inside the scanner is narrower, and they are really noisy. I was given earphones to listen to music during the scan, which was essentially pointless as it’s so bloody loud in there! It also takes way longer than a CT — a full MRI scan of my head and spine took 45 minutes. You also need to remove all ferrous metals from your being, because the scanner is one giant electromagnet and you don’t want to end up permanently attached to the machine! Metal objects within a scanner can also affect the scan’s quality.

The MRI scan was good enough for a detailed diagnosis and I returned to hospital with my parents the next day to discuss my case with the consultant. I was admitted to the ward upon arrival, a scary sign that shit was getting real. I’m glad that my surgeon explained to me exactly what was wrong, and what needed to be done to fix it. I was fifteen at the time, so while my parents had to consent to the surgery, I was old enough to understand and it was rightly identified that I needed to be informed — it actually made it less scary for me even though I was told explicitly about the fault inside my brain that was slowly killing me.

This isn’t my brain, but the tumour looked something like this.

I got to look at the scans of my brain, which showed that there was a tumour — a big one — in my cerebellum, which was a problem in itself but it was also blocking the flow of cerebrospinal fluid, meaning that the ventricles in my cerebrum filled with fluid and expanded due to the increased pressure. The increased pressure inside my head was leading to the wacky symptoms described above, and was also crushing my optic nerve, leading to permanent loss of central vision in one eye.

Hydrocephalus (water on the brain)

This needed sorting out, pronto — and once again things got moving within 24 hours. The next morning I was in surgery to have the excess fluid drained off of my brain. I had a small scar with 9 stitches, and an indentation on my right temple where the hole had been drilled. It’s imperceptible now, my skull and scalp have regrown the tissue so that it looks as good as new. This operation provided relief, but still hadn’t dealt with the root cause of my neurological problems — the tumour lurking at the base of my brain.

I was allowed home for a few days after the first operation, and then it was back to London for my second surgery. This one would take longer and be riskier and more involved. I wasn’t told of my chances of survival at the time, but I subsequently found out that I had a high chance of permanent disability following the procedure. Thankfully, this seems to be restricted to the aforementioned sight loss and problems with my balance.

The surgery took 5 ½ hours and the tumour was successfully removed. Many of my neck muscles were severed and I was held in a position with my head facing forward and down for the surgery, so I was in a lot of pain in recovery and the ICU. I vaguely remember being injected with morphine in my thigh, and the pain magically disappearing, but not a lot else… but I was glad that the pain was gone so I was fine with the memory loss.

A 4 ½” incision was made on the back of my head, and a square-ish section of bone was removed from my skull. I was assured that they’d put it back afterwards, but the back of my head still feels a bit funny, even now. Some parts of my scalp on the left side are numb, and others are extremely sensitive. It’s evened out a little over time, but it’s still not the same as it once was! The skin on my scalp was pinned back together with 33 staples — which I still have in a sample pot somewhere. I’m really pleased with the appearance of my scar (as if that was the most important thing!), it’s neat and tends to attract attention — I did mention that I’ve told this story once or twice before.

I do remember quite a lot about being in the ICU. I needed to spend the first 24 hours after surgery lying horizontal, and so I couldn’t see much of what was going on around me. I was able to see my stats monitor above me, and the nurses station, sort-of sideways and out the corner of my (good) eye, but mostly my ICU experience involved staring at the ceiling. I was able to hear a lot of what was going on (Intensive Care is a noisy place, and there’s always a fairly high level of light, so it’s not easy getting much sleep!), and I knew the other children’s names and ages. I also managed to figure out that none of the other kids in the ICU could speak, one albeit due to their only being 5 weeks old.

The stimulating surroundings of the ICU, as visible from my bed.

I felt both lucky, and also completely terrified, that I had full awareness during my time in intensive care. I was glad to be alive and fully compos mentis, but I was also frightened that I might still die — I knew how precarious my situation was, and being in the ICU with other, severely ill children just compounded my anxiety over my own mortality. I cried, and the ward sister asked me why. I said it was because I felt so helpless — I was confined to my bed and unable to do anything for myself except breathe and just lie there — but the real reason was because I was scared that I was going to die.

After one night in the ICU, I was ‘permitted’ to sit up in bed. I use that word lightly, because I really didn’t want to do it. Lifting my head off of the pillow was excruciating, and I had no idea how I was going to make it to vertical. It was horrible, and I was on lower-grade painkillers by now. After much complaining and whimpering, I was sat bolt upright with my head and back supported, and… I couldn’t move my head from left to right, or up or down. This might not sound too bad, but try reading, or eating without assistance in that position. Sure, my eyes were moving about just fine, but there’s limits on even a fully-sighted person’s visual field. My aim’s a bit crap anyway, so shovelling food into my mouth while not even able to focus on the plate was a challenge. Eventually I gave up and my dad helped to feed me. I was still miserable and in pain, but at least I wasn’t starving.

Now that I was sat up, it was apparently time for even more physical challenges. Yes, I know that it’s important to move around after surgery to aid recovery and prevent blood clots, but seriously, what a massive pain in the arse it was. I received physio to bring my neck and upper arms back into commission, which was painful but necessary. I objected to being encouraged to get out of bed and walk to places (the bathroom, classroom, anywhere with a TV), it was just so tiring at first. I’m guessing that was because I was putting so much energy into holding my head up, rehabilitating my neck and shoulders, and generally recovering from surgery; but damn, I was astonished as just how exhausting everyday actions had become.

Even after such a major operation, I was only in hospital for five days before being allowed to go home. Before I left, at least one other scan was carried out (I don’t remember it all) to check that they’d removed all of the tumour (they had) and I received the biopsy results confirming that it was benign (hurrah!). I was sent home with various medications and signed off school for about 6 weeks.

At this point my frustration was no longer directed at the pain and immobility I experienced, but the fact that other people thought that I would be intellectually incapable after brain surgery. I was keen to get back to school, but my parents actually kept me off for longer than was necessary (which I found out after the hospital phoned the school to see how I was getting on and I, uh, hadn’t been seen in a while). But it wasn’t just my parents.

Some of the teachers suggested that I should “take it easy” and not over-stretch myself, but over-stretching myself is the oxygen of my life. I’ve always been a high-achiever, and for someone to tell me that the best thing was to achieve less, well I was having none of it. It took a while, however, for everyone to figure out that I was still as determined and dedicated as I was pre-surgery. And now I had the added bonus of improved concentration and processing skills! I was unstoppable, yet it seemed like everyone wanted to stop me.

I received one of the worst reactions while at the corner shop with my dad during my first week home from hospital. It was only at the top of my road, so not too far to walk — I was pleased to be out of the house as I was getting a bit stir-crazy. The cashier said to my dad that she’d not seen him in a while, and he said that it was because he’d been in London with me in hospital. He explained that I’d had a brain tumour removed, and the woman behind the counter responded with “is she, you know, <taps the side of her head> alright?”. I was stood there thinking “I am right here in front of you, you cheeky f*cker” but sadly I chose not to voice my opinion for the sake of keeping up appearances. I hope she noticed my rather pointed eye-roll.

The community in which I grew up was isolated, despite its proximity to London. Political correctness was (and still is) like a foreign language to them, and it was common to hear words and phrases that modern society deemed unacceptable, yet seemed perfectly ok to drop into casual conversation back home. Anyway, the number of comments I overheard about root vegetables was ridiculous. I know it’s a farming community, but I’m sure they weren’t talking about their crop yields. It shouldn’t have to be pointed out, but that sort of language really isn’t cool.

This all happened during my GCSE year, which made some things difficult, but mostly because of other people’s assumptions. My science teacher decided that I wasn’t going to be doing my biology, chemistry or physics exams that year; which was awkward given that I was going ahead with all the others. I don’t know which strings were pulled, or by whom, but that got sorted out and I was ready to do the full complement of year-11 exams, just like everyone else (I got an A grade in all three sciences, so you can go f*ck yourself, Mr. Smith).

I chose to apply for 4 ‘A’ levels instead of the three that my peers were expected to — my school wasn’t one of those where students were expected to go on to university at all, let alone one of the more prestigious ones — it wasn’t the norm to take 4 subjects. By this time most of the teachers had figured out that my brain still had its intellectual mojo, so they were accepting of this but with the same caveat that they’d give to any of us: “are you really sure this is a good idea?”. Unfortunately there was that one teacher who thought I needed wrapping in cotton wool and suggested I might be over-exerting my poor, recovering brain. I don’t know if it’s possible to over-exercise the brain, but at the time I felt like I was merely gathering pace after a long period of rest, and my mind was getting fidgety.

While I was eager to get back to work, I did notice some odd things during the first month or so after surgery. I was saddened that I could not perform differential equations in my head (talk about a first-world problem), and my thinking was a little blurry sometimes, almost like my brain was bruised. I mean, it probably was literally bruised but some types of thinking didn’t come as easily as they had once done. Fortunately, my mind did return to normal (well, normal for me) and I was able to get on with my life.

One thing that definitely changed for the better was that my determination and ambition grew tenfold, as I wanted to make the most of the life I have left — I’d been given a stark warning of how fragile it can be. While I was fairly single-minded and unconventional anyway, after my brain surgery I abandoned any of the shits I still had left to give and just did whatever I wanted to. Luckily I really wanted to succeed intellectually and derive as much happiness from life as possible — a different me might have just put their feet up and played GTA all day, or become a criminal mastermind (there’s still time!).

One strange, annoying, and sometimes hilarious side-effect was that my depth perception was completely off. This had already become a problem prior to surgery, but it wasn’t going away — the damage to the optic nerve affecting my right eye was done and irreversible. When this first happened, I could sometimes switch between 2D and 3D viewing, which was pretty cool, but there were also plenty of times when my brain got horribly confused and misjudged things.

Having to return to PE lessons was difficult because I wasn’t able to judge the trajectory of anything thrown or caught. Track events were more my thing, as they tended not to involve getting hit in the face by errant projectiles. I wasn’t able to catch things thrown from a short distance either — if someone passed me a pen, I needed them to physically place it in my hand. Reaching for things like door handles, or a piece of paper, was one of my worst struggles — I would always “miss” and look like a bit of a knob.

When brain injuries occur, the brain finds ways around them. If some tissue that used to perform a particular function is damaged, the brain can rewire itself so that other parts of the brain will take over that function. Undoubtedly this has occurred to some extent with my brain, although some structures cannot be compensated for when they’re gone — notably the cranial nerves, including the optic nerves. I ain’t never getting that part of my central vision back. Fortunately the damage is confined to one side and when going about my ordinary business both my eyes work together to provide normal vision like any one of us usually experiences.

If I focus on it, I can see my blind spot with both eyes open, but I only really notice it if I shut my good eye. That’s another clever thing that the brain does — the way we see is based on what the brain has already learnt from the information presented to it by the eyes. It can re-learn how to interpret the scenery if part of the visual field is missing, by using other cues in the environment. It’s trying to “fill in the gaps”, and it did sometimes get things wrong, mostly during that re-education phase. But over time my brain has learnt to block out the blind spot when using two eyes (my good eye just has to do all the work for that part of my vision), and has recalibrated my distance vision so that I can judge speeds and distances, and easily understand the proximity and order of things close by — this took at least three years, I’d say.

I doubted whether I would be allowed to drive, given my sight deficiencies, but by some miracle I have a full driving licence. It was a long and drawn-out process, though, and it has to be — the DVLA don’t want half-blind drivers on the road, for everyone’s safety! Before I was even granted a provisional (learner’s) licence, I had to attend a medical to check if my visual field was wide enough to be safe on the road. I honestly expected to fail, but amazingly I got through it just fine. I can only assume it was due to all the extra work my good eye put in — a gold star for you, left eye! The only other sight requirement the authorities are bothered about is the ability to read a number plate from 25 yards, a test which all drivers have to pass. That was dead easy, as my distance vision is fine. Although I’m so paranoid about becoming unsafe due to my sight that I regularly test this ability while I’m out walking. The duty to report any changes to the DVLA is on me — but my optician would tell me if I needed to and I would be so concerned that I might have an accident that I wouldn’t chance not telling them. As for other road users, well I just hope they’re as honest and paranoid as me!

It took me eight attempts to get my full licence, over a period of four years. Nothing to do with my eyes, but a lot to do with nerves. My driving instructor just couldn’t understand how I’d be completely competent during lessons, and then fall to pieces on exam day. It’s not like I was the worst learner — I have one friend that needed 30+ attempts — at least I stayed in single figures!

My life is fairly normal now, I have an ordinary (yet exciting) job, I live in a nice flat, I’ve got a wide social circle and I’m involved in the community. But it’s not all gone to plan. I’ve had my own personal tragedies, unrelated to my health, but I also have a lot of health problems that may or may not be connected to my brain’s exciting history. My balance is laughably poor (exercise has helped with this), and my right eye is only good at the peripheral bit, but there’s more stuff going on as well.

I suffer from actual migraines now, and they are horrendous (but infrequent). If I get one I’m wiped out for 48 hours. I need to sleep for longer than the average person (around ten hours each night), and I’ve just had to stop fighting it. My body remembers the sleep debt and I can’t escape it. If I stay up late one night I’m having a lie-in the day after, and I don’t have any say in the matter. This affects my ability to work for an employer, hence my decision to go freelance. I feel it’s worked out for the best, but it would have been nicer not to have been forced into it by my cranky brain.

There’s literally no point in setting an alarm anymore.

I’ve not had an MRI scan for about 16 years. Following surgery, they were needed every three months, then every six months, then down to once a year, until the hospital were satisfied that I was fixed and the tumour wasn’t coming back. Apparently my risk of getting another one is slightly higher than average, but not worth worrying about. And I don’t have time to worry — I’ve filled my life with all the things I want and need, and I’m still determined to make every day count.

There have been times of adversity, days when my mental health was so bad that I couldn’t get out of bed, and days where I just sat around and did nothing. But I’m grateful for those days too — as much as I’d like to be 100% on all the time, it’s not physically possible, and so I don’t see my downtime as a waste. I’m exceptionally lucky to be alive and living a fulfilling and rich existence, and I feel like my life really “counts”. The last 20 years, and the time I have left, are extra bonus years that I might not have had. It helps me to reflect on that, whether I’m feeling down or feeling great. This time is my time, and it’s up to me to make it worth it — I’ve done the guaranteed bit, this time is an unexpected gift.