When one door closes, another opens

“Cliche” – a phrase or opinion that is overused and betrays a lack of original thought. Sadly, cliches become cliches for a reason – because they are more often than not true, and the easiest way to concisely portray something. That is certainly the case for the title of this post – my life has been a series of doors closing, and doors opening. I’ve had to learn that new doors won’t spontaneously swing open or even appear, unless if you’re very lucky. Sometimes you need to look for another. And sometimes, just like  the front door of my student house, a lot of fiddling is needed to open it.

Forgive me for being self-indulgent, but this post is going to be about my achievements since the 22nd of March 2014. About my open doors. If you can bear with a slightly smug recollection of the past 18 months, do read on. If not… Well I hear there are some good cat videos on the internet these days. This is one of my personal favourites: https://www.youtube.com/watch?v=k6ZPvNXiip4

My rupture happened on the 22nd of March 2014, during my intercalated BSc (in Neuroscience! How very ironic). At this point, all I had left of my BSc were my exams and my dissertation. Despite my best efforts and protests, it soon became apparent that I would have to postpone those, and the completion of my BSc, to May 2015, giving me essentially a year of… waiting for exams to come around. It wasn’t fun. I was advised by my team not to even attempt revision until October 2014 at the very earliest, so naturally I tried to start earlier. And failed miserably. But by the end of October 2014 I had tentatively started going back to my part time job – massive confidence boost – and come November, I made my first foray back into the world of academia.

When you have a brain haemorrhage the reaction of those around you is, naturally, “Oh my gosh! But doesn’t that control your arms/legs/vision/speech?”. People always ask me about tangible, physical effects. About obvious effects, that you might see if somebody broke a bone, for example. But nobody actually thinks about what controls the mind. It’s a bit of a paradox really, that the mind controls the mind. It’s the only organ in the body that is self aware, and we still don’t truly understand it.

So what happens when you – in essence – break the brain’s bone?

My stroke was mostly in the temporal lobe of my brain, which is the part that controls cognition and memory. I didn’t quite appreciate the loss of this until I tried to go back to revision and found that practically my entire memory of my BSc lectures had been wiped. It was quite surreal, opening the extensive notes I had written in the months prior to 22/03/2014 and having physical evidence that I was there, that I had absorbed and learned this information… yet having absolutely no recollection save for infrequent, brief flashes of memory. So I started again. I taught myself my BSc in Neuroscience from scratch. I sat and arduously watched every lecture that had been recorded and put on my university intranet, and completely filled three A4 notebooks with my notes for it. I am not for one second going to pretend it was easy, or smooth. Once upon a time I was able to revise 7, maybe 8 one-hour lectures in one day. I was lucky now if I managed to do a one hour lecture over two days. I even had the memory of my lab work wiped, which was the basis of which my dissertation had to be written. When you face a whole years’ worth of lost work, knowing that your ability to learn is damanged…. It’s petrifying, it really is. But at the end of the day you can’t put off the inevitable. After what seemed like forever (but was, in reality, seven months) I had finished all of the taught content of my BSc. Exams loomed over me. But with the help of my neuropsychologist and setting small, manageable goals the exams finally felt like a hill instead of the Everest that they were when I was first discharged from hospital. I sat the exams (and thankfully had an extra two hours per exams – yay for cognitive deficits!), pleasantly surprised at how straightforward they were. Sadly I couldn’t celebrate just yet – I still had a week left to finish and hand in my dissertation – but in due course that was completed and I could finally relax.

I spent June of 2015 working, making back the money I had lost on my year out. I spent July of 2015 reaping the efforts of my labour in the past year. July 2015 was a very good month.

Most university students have that universal, shared experience of the terror of results day. Opening that brown envelope to find those three (or more) letters that determined the start of your adult life. I naively thought when you go through that experience once, you’re prepared for the subsequent ones. I was wrong. 24/06/2015, 4p.m. – BSc results day. I started fervently refreshing the results webpage, aiding the thousands of other students who ended up crashing the system. I made tea. I drank the tea. I made more tea, still refreshing the page in the hope it would be revived (like I was by the tea). And suddenly, it was. I had always said to myself after finishing my exams that I would be happy with a 2:1, or even a 2:2 – so long as I passed my BSc and all the work wasn’t in vain.  I held my breath as I clicked on the “View degree award” link.

It had to be a mistake.

I double checked. And got my boyfriend to check too. It wasn’t a mistake, or a typing error. After the 21st of July 2015, after my wonderful graduation ceremony, I was the proud, proud owner of a BSc in Neuroscience with First Class Honours!!!!! There are no words to express the elation I felt in the following weeks.  The best part for me, was the knowledge that getting a first in itself was an achievement, meaning others could appreciate this even without the knowledge of my backstory.

Graduating with a First!

Shortly after my graduation, I attended a national conference to present a poster on the work I did during my BSc project. By being selected to have a poster there, I was automatically entered into the undergraduate competition for best poster, presentation and abstract. My supervisor was fairly confident and spent most of the conference showing his peers how excellent I was. I personally wasn’t so sure – the quality of the other undergrad posters was very high. But my confidence was bolstered when during the poster presentations I had several attendees asking me if a) this was my PhD project and b) why I hadn’t published it yet. I was even asked by once of the leading researchers in the field of my project if I wanted to come and work with him at his lab! I suppose that’s the scientific equivalent of being headhunted. Lo and behold, my supervisor’s faith was rewarded as it was announced at the end of the conference that I had been awarded the one of the four “best undergraduate awards”!! My reaction was very much the same as with the BSc result – shock, disbelief, then elation. Upon returning, I was greeted by the news that my supervisor and post-doc had decided we should publish my work, and that I should be first named author. What a great end to the two year long saga that was my BSc! (And to any non-medics reading this, intercalated BScs are usually done in one year, not three!)

Winning the undergraduate award at the BAP conference

 
The rest of the summer was spent enjoying what would be my last university summer holiday. I travelled to Sweden and Menorca. Oh, and got engaged (!!). Standard holiday activities really. As I closed the door to the end of my time out (and what a fantastic way to end what started as a truly awful year!), the door to the start of my return back to medical school opened. But more on that in the next post.

 

He did good with the ring

 
I’ll close this post with a final bit of good news, the best news of the year so far. 20 months since my rupure, the door to removing Ralph has finally opened – my neurosurgeons have decided to give me gamma knife radiosurgery! The date has been confirmed as the 2nd of December 2015 and, like with all my previous planned hospital admissions, I await it with a mixture of excitement and curiosity. Watch this space for an update on what it’s like to have your brain shot with radiation!

Epilepsy

My seizures started a few weeks after I was discharged from hospital, around April 2014. At first it didn’t occur to me what they were, until they started recurring in exactly the same manner and at exactly the same time each month. So I made an educated medical guess what they were (temporal lobe seizures), told my team (and struggled to convince them I wasn’t over interpreting things) and eventually had an EEG done in December 2014. I wrote a post about my seizures; check it out here.

But that was normal. So I thought that was the end of that.

However, the new year came and went and by mid-January 2015 I had had 2 more since my EEG. In all honesty, I didn’t really expect the EEG to highlight anything. After all, I didn’t have a seizure during the EEG, so it wouldn’t make sense to have an abnormal EEG anyway. Half a year passed by and I was still having them at the frequency of roughly once per month and at some point in June 2015, a letter fell through the letterbox informing me I had an appointment with a neurologist at an epilepsy clinic.

Finally. Perhaps now I could get a confirmation (or not) of my suspicions. Granted, being seen by a neurologist involved a lot of work – I had a 10 page questionnaire to fill out that seemed more like applying for a visa than explaining about my seizures. The day approached and I went with my boyfriend, so I could have an external memory of the consultation, just in case. I presented my questionnaire, gave my history, and met with the very concise response of “Yes. It’s quite obvious that you have epilepsy.”

I knew it!!

But as with the majority of my story, I’m often right about my own diagnoses… and this is often a bad thing. We then spent a while discussing treatment options and future plans, the conclusion of which was: Tell the DVLA, start on lamotrigine and see where we go from there.

I’m writing this about 2 months after my diagnosis, and I’m pleasantly surprised to say that I have had relatively few side effects from starting my anti-epileptics. I’m still in the process of titrating the dose up to what it’s meant to be, and everytime the dose increases slightly I get a small side effect for a few days… But thankfully it fades. The best part is, I haven’t had a seizure since the 6th of June, 2015. Only got until the 6th of June 2016 now until I get my licence back…

I think the weirdest part of this whole situation is not the condition. Sure, actually experiencing my seizures are very, very strange, overwhelming and rather trippy. I got used to them once I figured out what they were, however. The weirdest part for me is getting used to calling myself “epileptic”. Saying I have “epilepsy”. Something I never thought I would say, but then again I suppose I never expected that I would ever have to utter the phrase “I had a stroke” at this age. I suppose this is a recurring theme with illness – indeed, a lot of people I have spoken to about having an illness have agreed that one of the hardest parts is accepting that your idea of yourself has changed. That you cannot apply for research projects looking for “healthy volunteers” because… you’re not healthy anymore (okay maybe this point only applies to me). You have a chronic illness. You spend your whole life trying to figure out who you are, and when you have it figured out, it gets erased in an instant. I’ve said it before, but I feel this acceptance of your new self, your new status in your life is paramount to assisting recovery. You might not be able to change what happened to you, or what you went through, but you can change the way you deal with it.

The irony of fate – happy anniversary to Ralph!

A year ago today, my life changed.

A bit dramatic I know, but what happened exactly a year ago was dramatic. I approached today’s date with trepidation;  at some point I was told the risk of having a first rupture is 1% per year. Once you’ve had your first rupture, the risk increases to 5% within the first year after. The closer it got to today, the more I worried with any headache, or slight funny feeling. Which I was not without, but I think it’s in part my own anxiety psyching myself out and manifesting in a physical way. The past year has been incredibly hard; the headaches, the fatigue, the brain fog, the long nights of crying hysterically, the mood swings that lead to hysterical laughter, the side effects of steroids, the seizures, the cognitive impairments I’m now left with, the life changes, the sensitivity to stimuli, the impairment to my processing speed, the reduction of my brain to an “average” version of what it used to be, the disappointment at interrupting my studies, the battle with different funding companies. Approaching a year off for recovery seemed like a monumental task – it’s funny how at the beginning of a year, it seems like forever. But at the end of it, it always seems like nothing.

But no matter. I made it. It’s officially been one year! A whole year since Ralph came into my life! Well I suppose technically it’s been 22 years and a few months. But a year since he made himself known. Usually you celebrate anniversaries with a significant other with some form of meal, or a gift or something. Does Ralph count as a significant other? I suppose he is a significant other part of me. Regardless, this year is coming to a close the same way it started; with cheer. However on THIS 22nd of March I will not be training, just watching!

Taking a year out forces you to rest. It forces you to relax. But most of all, it forces you to reflect. Perhaps “R&R” should be renamed to “RRR” – rest, relax and reflect. Growing up, lots of strange things happened that never really had an explanation. Sometimes I would watch a programme and, in the advert break, completely forget what it was I was watching. I do remember joking with friends that I had short term memory loss. I now realise, many years later, why. Whenever I climbed stairs too quickly, I used to get incredibly light headed and dizzy to the point where I would almost pass out – but I always put that down to my low blood pressure. However, the AVM would definitely be another factor. The headaches I used to get, I guess they have an explanation too now. So did the weird tingling I used to get on one side of my body (that, when I was on my neurology rotation, made me think I had multiple sclerosis for a brief period of time – but again I laughed that off as med student syndrome). The weird “woosh”ing noise I used to hear in my right ear whenever I put my stethoscope in my ears (for the medics reading this, it’s called “pulsatile tinnitus”. It’s like hearing a bruit or an ejection-systolic murmur, but very specifically in your ear). I now realise that was actually me hearing blood flowing through my AVM. The entire left side of my body is about 1cm longer than my right – so much so that I get hip pain if I don’t wear my special insoles in my right shoes. Is it possible that, as I have had an AVM since birth, my AVM has either stunted the growth of one side of my body, or accelerated the other side? This last point is highly unlikely, but forming conspiracy theories is fun.

Never did I realise waking up on that sunny Saturday morning how small decisions would change the course of the year. It’s like butterflies and hurricanes.

I feel the lyrics to this are very relatable right now.

First and foremost; if I hadn’t have filled in for that missing team member last year, and fallen, would I still have had a rupture? My surgeon assures me it was going to rupture that day anyway, but it’s still easy to think “what if”. If I had chosen to go back to my student house, instead of back to my boyfriend’s with him, would I have gone to hospital, or just collapsed in an empty house and been found by my housemates when they returned late that day? If I had been in my student house and gone to hospital, I would have ended up at King’s College Hospital – where many of my peers were at the time doing their neurology rotation and would have been the ones to clerk me and assess me. When I myself was on my neurology rotation, I shadowed a neurosurgeon every week, observed his surgeries every Thursday. The first neurosurgery I ever saw was a subarachnoid haemorrhage – the same thing I had. And every surgery I saw was related to…. guess. Yes, AVMs. For the neurosurgeon I shadowed was the AVM specialist at King’s. Meaning if I had indeed ended up in KCH, he would have become my consultant. I spent a lot of time thinking about things like this, how small decisions made big impacts. And it made me realise the irony of fate.

Most people will adhere by the old adage, “Everything happens for a reason,” whether that belief be of a religious or secular basis. The more time I think about my situation, the more I can’t help but think I am definitely being signposted along some path. From the age of 6, I knew I wanted to be a neurosurgeon; my mom swears by it that I was a precocious little girl that had decided the she would cut brains for a living (and in her spare time be a ballerina, a farmer, a policewoman, a vet and an artist). But specifically, a neurosurgeon. I apparently even knew the word for it, as opposed to saying “brain surgeon”. And now I have a neurosurgical condition myself, which I am fascinated in! The weirdest part I still feel is shadowing the AVM consultant. Out of all the neurosurgeons at KCH, I just so happened to have asked the one that specialised in the condition I would later find out to have. Even within neurosurgery, before discovering Ralph, I was beginning to want to sub-specialise in neurovascular. I have a poster of the blood supply to the brain in my bedroom, the same one that adorned the theatre I had my angiogram in. The more I think about it, the more I want to specialise in neurovascular conditions – especially AVMs – even more. After all, how many neurosurgeons can say they have personal experience with the condition they are treating? This was cemented by a conversation I had with my surgeon back in May 2014, during my second hospital admission:

Me: “I get headaches all the time now. How do I know if the headache is just a headache, and not another bleed?
Surgeon: “To be honest, I don’t know. I can tell you what the textbooks say, but you already know that. I’ve never experienced what you’re going through, so it’s very hard to say.”

That precisely sums up my motivation to get through the past year, and whatever the future years are going to throw at me. One of these days, I want to become the AVM consultant who can reassure their patient that they had managed to get through having an AVM and carry on to lead an awesome life.

So happy anniversary Ralph. Here’s to a year together in my new life, and to hopefully not many more!

 

Angiogram

So yet again I’ve taken a long hiatus from blogging – but generally that’s a good thing, as I’ve been so busy with enjoying life and getting back to things that complaining about it on my blog has taken a back seat!

At the request of several family members; here is an update on how my angiogram, which I was preparing for in my last post, went.

This angiogram took place on the 30th of December, in that odd period between Christmas and New Year that nobody really knows the purpose of. This wasn’t my first angio; it was actually my fourth. However this was the first one that I would be conscious for, and when you know you’re going to have a wire and tube inserted up the artery in your leg and threaded all the way into your brain, even an above average amount of insight doesn’t really help to calm the nerves, the anticipation and, most importantly, the curiosity.

The day approached. I was up bright and early, as I had to check in with the hospital at 8am. There was some initial confusion as to where to go – my letter had suggested I had to go to Outpatients, despite the fact that I would be an inpatient for a day. Eventually we were directed to a ward, and I was sad that it wasn’t my usual ward, Victor Horsley. Instead we were sent to, rather strangely, a ward emblazoned with “Nuffield Health, Queen Square Private Ward”. What? Thinking that we were going to have to move yet again, we entered the ward with some trepidation… only to discover that we were indeed expected in the private ward and my bed was waiting for me. What a pleasant surprise!

The private ward was plush; you truly do get what you pay for. Each bed had its own separate room, with a flatscreen TV, ensuite bathroom, wardrobe and… a MINI FRIDGE in the wardrobe! Interestingly, the bed in the private ward was exactly the same as the bed in the NHS ward. So whether you were prince or pauper, you still slept on the same mattress. I feel like there is some clever, significant saying I could make out of that but I’ll leave that to you guys to figure out. Having been on morning take before and having been the patient subjected to morning take, I knew the drill and patiently waited to have my obs done and be clerked in. An hour later, I was still waiting. And starving too, as I had to be nil by mouth from midnight. Eventually a nurse came to take my obs whilst a locum doctor from America clerked me in and took my blood. I ended up having to point out where my vein was and stabilise it, as she missed it first time and pierced through the vessel. Oh dear. Shortly after, the interventional radiologist that was going to do the procedure came to take consent from me… not only for the angiogram, but also to ask if I would be happy to do an MRI afterwards for a study he was doing. I instantly said yes, and tried to see if there was an opportunity to help. Sadly he missed the meaning of that and I only helped by contributing an image of my brain.

Yet more time passed, mostly interspersed with me napping, chatting to my boyfriend’s mom who had accompanied me or sending hospital/”omg private ward” selfies on snapchat. 12pm rolled around and I was taken downstairs to the theatres, and so the angiogram experience began. As I was taken into the theatre, I noticed on the wall the very same poster of the anatomy of the brain that I had stuck to my bedroom wall, which made me smile. My femoral artery was found (handily signposted by my scar from my previous angiograms), skin was prepped and local anaesthetic injected. Which, in hindsight, was the most painful/uncomfortable part of the whole procedure. I had requested some form of blanket as the theatre was quite cold and I had a fan heater blowing heat onto me underneath the sterile drapes. Which was amazing, until the local anaesthetic kicked in and I then had a cold triangle of skin; a very odd sensation. Satisfied that the patch of skin was numb, the catheter (4 french; roughly equivalent to 1.3mm) was inserted and threaded up my arterial tree. This again was an odd sensation; I could sort of feel it as a slight pressure in my common iliac, when it hit my abdominal aorta I could feel it less and once it went past my heart, I could feel absolutely nothing. Even though I could see the radiologist pushing and pulling quite forcefully at times, nothing could be felt. Eventually he reached my internal carotid and this is where the fun really started.

I had been warned, and read interesting stories, of the effects that the dye injected to visualise the vessels had on your brain. My handy “What to expect” booklet had told me of perhaps seeing flashing lights, hearing strange sounds, tastes; and my doctor had said the same. He was going to warn me everytime he injected the dye, after which I had to hold my breath for the duration of the contrast and X-Ray. Much to my annoyance, the screens were sort of in my left peripheral vision, but I couldn’t see them properly unless if I turned my head. Which I wasn’t allowed to. I had to stare straight up at the white box that was the tail end of the X-ray machine. But this white box provided the perfect blank canvas on which my visions grew. The first time I was so taken aback by what had appeared in front of me that I didn’t have time to analyse it before it ended. “Wow,” I told the doctor, “That is certainly an experience.” He replied saying he had heard similarly from other patients, and almost wished he could experience it too. The next time he injected, I was prepared.

It started in the center of my vision; a white glowing square that grew until it reached the edges, then it faded out to be replaced by some white glowing, pulsating, branching structures growing from the peripherals of my vision and sprawled across back to the center. I say branch, but in all honesty my first though was I was somehow seeing my retinal blood vessel network. It was very organic; it looked like a tree in winter, like a network of vessels or a network of neurons. Whilst this was going on, it was accompanied by a soundtrack that filled my head; a crackling, popping sound and sensation very similar to having too much popping candy in your mouth… but it was in my BRAIN!

IMG_1119

These effects happened every time dye was injected into that artery, but once the target artery was changed, the effects changed. On one injection, exactly half of my face became a temporary radiator, which changed to the other side of my face when the same artery on the other side was injected. Then a new artery was selected and I had a strange, almost metallic taste going down the back of my tongue and throat. After a few more injections the team were happy. I tried to ask them as many questions as possible but I had to hold my breath so many times I ended up staying silent. As they were wheeling me out of the theatre I manage to get a glimpse of the screens and saw Ralph in all its twisty glory. I was astounded; it was like I had been blind previously and now I could see. Ralph’s nidus was suddenly there, in full HD glory. It was like watching a YouTube video in 1080p instead of 240p resolution.

When I was in recovery and my wound was being compressed, Dr Rennie, the wonderful interventional radiologist who did my embolisation back in June, came to say hi. We discussed a lot; mostly neuroanatomy, specifically MY neuroanatomy. He was happy with the angio today; it turns out the reason why previous angio’s haven’t been clear was because the varix was occluding the main nidus and casting a shadow on it. But now that my AVM was more visible, just how complicated it really was was also more visible. It was previously thought that my AVM had one feeding artery, and one draining vein. Like most AVMs did. It turns out, Ralph has not one, but THREE feeding arteries, and was starting to recruit dural blood vessels to drain into. Which, in summary, meant that Ralph was still pretty complicated, and we still had to watch and wait.

After having a very quick MRI for the study, I was taken back to the ward. On the way back I expressed concern about missing lunch, to which a nurse assured me that seeing as I was on the private ward, if I missed lunch they would cook a new one from scratch for me. Thankfully I hadn’t missed lunch and was presented with a posh plate of tomato soup, bangers and mash, and sticky toffee pudding under…. a silver dome. Yep, my ward had silver service. And asking for some water resulted in me being given a monogrammed glass carafe of some fancy alpine, volcano-filtered still water, instead of the plastic jug of tap water that I was used to. I could see why people paid for private now – if not for the healthcare, then for the hotel like service and food!IMG_1117IMG_1116

 

After lunch amongst my visitors was Mr Shieff, who came to check in and update me with what Dr Rennie had already said. He mentioned that the gamma knife team would be looking at these images and come to a decision. They haven’t. I’m typing this on 18/02/15, almost 2 months later, and so far the decision has been made to give me another MRI scan.

Eventually I was discharged around 7pm. Overall the angiogram experience had been more fascinating than anything. Possibly the most irritating aspect was the part where I had to lie completely flat for 6 hours after my angiogram, to minimise complications of the wound site. That doesn’t sound bad on the surface, but try drinking tea through a straw, lying flat. And if you needed the toilet…. well, you just learn to have a very strong bladder. All those weeks spent holding my bladder on Duke of Edinburgh expeditions did come in handy after all!

Movin’ on up

I took a bit of a hiatus from blogging during Christmas – so first and foremost, Merry Christmas! I hope the break was a pleasant and food filled one.

In the run up to Christmas, I’ve had so many updates to my health in about the space of a week that it’s just been a bit overwhelming to deal with. Each deserves a separate blog post of their own, so watch this space to hear about the results from my neuropsychological testing, my seizures and whether or not I have epilepsy!

However, this post is dedicated to the most pressing update. A few weeks ago at the beginning of December (the 8th of December, to be precise) I called my neurovascular nurse to update her on how I had been doing, and find out what the next course of action was, as I had had no contact since my birthday present back in October. We discussed how I had been doing and I gave her a brief breakdown – fatigue was getting less and less, energy levels more and more, I had gradually gone back to work and started studying again. She was pleased to hear I was trying to get back on track with life and gave me yet another present – her blessing to return to the final part of my life that was still on hold.

Not a pom-pon in sight.

Not a pom-pon in sight. Taken from http://just-werk-it-girl.tumblr.com/

I had to make doubly sure. And triple sure. “You do know that cheerleading isn’t about waving pompons around… it’s a physical activity with inversions and high cardiovascular activitiy and potential falls, right? It’s almost like gymnastics. I could fall and hit my head.”

She was aware. She knew. And she said it should all be fine, now that my varix was gone. The collapse of my varix meant the collapse of most of the risk I was carrying around in my brain.

“Just go back gradually. If anything gives you a headache or makes you dizzy, stop and stay at that level. And try to avoid any sudden movements of the neck that would affect the vertebral arteries. That’s the only thing that would risk increasing the intracranial pressure in your head, which would increase your risk of rupture.” (To the non-medics out there, that basically means no whiplash-type movements… to the cheerleaders out there, that basically means no snapping in baskets).

So that was the final piece! I could go back to training! Over the past 9 months I had become so frustrated at first my physical limitations to physical activity (nobody tells you just how fast much your muscles waste away when you’re lying in a bed, recovering) and once the physical limitations started to dissipate, the mental limitations. I immediately made plans to go to an open gym session that night to celebrate! The green light from my nurse did remove some mental limitations, although I still found myself hesitating a lot more than usual. Which is understandable, really. Nevertheless, words cannot express the joy I felt at finally getting ALL aspects of my life back on track.

Example of a cerebral (brain) angiogram. This is a normal one. Ergo it is not mine.

My nurse had also given me a second point to be excited about – my team had decided they needed an up-to-date image of what was going on in my head before we start to think about gamma knife. So I was to have an angiogram (an imaging procedure that looks specifically at the arteries in my brain) “at some point between Christmas and January”. Whilst it was great that I had some form of progress with Ralph, the vague timescale meant that I couldn’t plan anything. I had no idea if I would be here or with my parents for Christmas, where I would be for New Year’s, where I would be for my boyfriend’s birthday (which fell exactly halfway between Christmas and New Year… and is actually today!)… And the other factor was, once I had the angiogram, I would need somebody to drive me back from the hospital as walking is prohibited for the first 48 hours or so.

My hospital letter arrived a week before Christmas and informed me my angiogram would be on the 30th of December. Perfect timing! This meant I could spend Christmas with my parents, my boyfriend’s birthday with him and New Year’s (voluntarily and medically) confined to the sofa. Which is what I had hoped for anyway. Despite having already had 3 angiograms, I also received a handy “What to expect when you’re expecting” sort of booklet, except for angiograms. For those who don’t remember or haven’t yet googled it, the reason why caution has to be taken with walking after an angiogram is because a catheter (a thin plastic tube) is inserted into my femoral artery (the main artery that supplies the leg) and is threaded up to my brain through the arterial system. Yep, they get to my brain from my leg/groin area. Cool, right? Whilst it does give highly accurate, real time images of my cerebral circulation, the fact that they have to leave a puncture wound in a major artery which is likely to bleed out unless if proper care is taken…. You get the picture.

The only thing I’m not looking forwards to about this angiogram is the fact I have to be in the hospital by 8am. Yawn. The previous three times I’ve had an angio, I’ve been unconscious – the first two times because the combination of my stroke and the pain medication knocking me out, the third time because it was actually an operation. Hopefully this time I’ll be conscious and I’ll be able to frustrate the team with my genuine interest and questions of the Circle of Willis (the main set of blood vessels at the base of the brain) and other neurovascular structures.

I’ll end this post with a song that I feel reflects my current mood. I’m movin’ on up!

‘Cos I’m moving on up. You’re moving on out. Movin’ on up. Nothing can stop me.

Neuropsychology

The past few months have been a great interruption in uni. Really great. I’ve loved lying around, unable to do anything due to the extreme fatigue that comes with having a brain injury, being completely overwhelmed and watching my brain shut down by seemingly innocuous stimuli such as rush hour on the tube and just feeling quite frustrated at not being able to complete my degree. But as September rolled into October, I started to feel stronger, less tired, less foggy and more determined to get myself back to my old life. With a few modifications for Ralph, of course, but as close to my old life as possible.

The first step was work. I had held a part time job as an events first aider for the past three years which made going back to work gradually very easy, as I sort of chose how much per month I wanted to work. My first shift back was exhilarating. My mind was constantly split between “am I truly ready to jump back into life and work” and “Oh my word, I’m so happy to finally get on track again!” My shift partner was my usual partner in crime, which helped massively with the first thought. Since then I have been working increasingly more, whilst feeling proud of myself for I had had a huge haemorrhagic stroke 8 months ago and nobody could tell! It felt great to gain some independence back and, importantly, get paid and have some form of income. My financial state up until now had been dire, as apparently when you get ill and take a year out there’s not much help you can get financially. I was ineligible for Student Finance loans as I had already received it for four years. I was ineligible for NHS bursary as I wasn’t in clinics. And as an “external interrupted student” I was both a student and not a student and thus ineligible for help from my university. I had many long meetings with student advisors, the conclusion of which was essentially “Sorry. Can’t help you. Move back with your parents.” But I couldn’t move back with my parents; they didn’t live in London which meant any time I had a hospital appointment it would cost me about £40 in travel. Not only that, but the closest neurosurgical hospital to them was a good 2 hour drive away – so if Ralph decided to rupture again, my chances would be very slim compared to the 20 minute journey I would have to my hospital now. After having several doors shut in my face and being told “Sorry, we can’t help you”, it felt amazing to be able to start to support and help myself at least financially.

Anyway, I digress. Work was going well, so that was one aspect of my old life I was clawing back. The other, however – the student part – was a lot more difficult. When I had my stroke in March, everybody agreed I would be in no state to take my exams in May, so they were postponed till August. When I had my surgery in June, everybody agreed I would be in no state to take my exams in August, so they were postponed till the following May – leaving me with having to take a year’s break from my studies. I had already decided I would study slowly and thoroughly from September onwards for these May exams, but I was met with several mental and cognitive barricades. I had already attended all of my lectures, done all of my coursework – all I had left were my exams. And I had very good notes from the previous year. But every time I looked at the page, even though I saw the physical scrawl of my notes across the page, I had absolutely no memory whatsoever of writing it. Or being there. Or knowing the information. It’s impossible to describe the frustration of having information in front of you that you once knew so well, joked about with peers so often, made geeky references to on a daily basis…. and now instead have a black void in your memory where it once was. I tried to change this by revising every day, but suddenly studying had become laborious and inefficient. I mean, studying was never going to be easy, especially when it was neuroscience, but trying to study after having a brain haemorrhage was near impossible. Mentally, it felt like trying to swim through concrete. Imagine your life; starting at primary school and trying to figure out abstract learning methods based on the simplistic tasks you were given. Then you get to high school and the level is so much higher and harder, so you adapt. Then you get to 6th form and you do the same. Then you get to university and you do it one more time and by the end of your degree (or at least, halfway through mine seeing as mine isn’t a 3 year degree), you get to a point where you feel you have refined and streamlined your learning methods and style. But then something happens and mentally you go back to your primary school level of learning, whilst dealing with university level knowledge. That’s how revising felt. I couldn’t concentrate for longer than 10 minutes, I couldn’t focus, I was constantly getting distracted and it took me about a week just to go through one, one hour, lecture.

Obviously this was not conducive to my studies. I tried different tactics, the one that seemed to work the best being having 10 minutes “on” and 5 minutes “off” – allowing myself to have that 5 minute break seemed to stop me from procrastinating throughout. Whilst I’m sure most students can relate to the demon that is procrastination, this was on a whole other level. When my nurse called me a few weeks ago I filled her in on everything that had happened (including my apparent seizures, which will be covered in another post) and she spent some time assuring me that I shouldn’t try and rush back into studying; it was natural to be experiencing this. Nonetheless, she referred me to the neuropsychology department for an assessment. I got the call the next day to arrange an appointment, which was on the 20th of November.

Yet again, I approached this hospital appointment with a mixture of excitement and wonder. I had briefly studied neuropsychology in my 2nd year; even written an essay about it. I met up with a good friend for a catch up, who actually worked as a neuropsychologist, and we discussed my various issues and the upcoming appointment with interest. For those who haven’t googled it or figured it out yet;

Neuropsychology: the study of the relationship between behaviour, emotion, and cognition on the one hand, and brain function on the other.

Basically, it was the study of how my cognitive processes – my thinking, perception, recognition, processing, memory, attention, focus and all other sorts of stuff – have been affected by what happened to my poor brain. I already suspected I had some mild form of prosopagnosia (inability to recognise faces) and dysphasia (impairment of language processing… like always having something on the tip of your tongue). But I had no idea what was going on with my memory.

I arrived ready for my 9am appointment, a bit apprehensive that the early (for me) start would cloud my test scores somehow. After giving a brief history to the neuropsychologist the tests commenced. There were tests involving words, tests involving pictures, tests involving faces, tests involving numbers, tests involving shapes… there were a lot of tests. It will take too long to list them all, but I was incredibly mentally fatigued at the end… which led to physical fatigue. I got the opportunity to rest as often as I wanted, which allowed me to analyse the purpose of each test. Things that I remember struggling with were:

  • Visual recognition; I was shown a set of about 15 photographs, one per page, and told to remember them. Then I was shown 3 similar photographs per page and had to point to the one I had been shown previously.
  • Facial recognition: On the same theme as above, I was shown about 15 faces, one per page. Then shown two similar faces per page and had to point out which one I had seen. I don’t think I got any of these right!
  • Object recognition/naming (?): Different items, animals, objects etc. were shown to me and I simply had to say what it was. What shocked me was for about 40% of the items, I knew exactly what it was – I could describe in a lot of detail what they were/what they were used for, but I just simply couldn’t name it. This is known as “anomia” I believe!

These were just things that I had noticed. But apparently the neuropsychologist wasn’t too bothered by this, as at the end she told me that my main issue was actually my attention. My actual memory was functioning fine, it was just that I couldn’t pay attention to things to commit them to memory – so they were never there for me to remember in the first place. I will be going back on the 8th of December to work through these issues – I’ll try and remember as much as I can, as I’m pretty sure I know a lot of students that could use these techniques too! 😉

I suppose in a way I’ve been very lucky and unlucky. Seeing as my stroke was so specifically localised to my temporal lobe, it didn’t affect my physical capabilities (mostly controlled in the parietal lobe) apart from the occasional fatigue. But it has certainly affected my cognitive processes. It’s such a hidden deficit that on the outside, I appear to be perfectly normal and healthy, just like how I was before. I was warned that going back to studying would be hard, but trying to claw back my mind from what it used to be is one of the hardest things I’ve had to deal with. I don’t even know if this is going to be my new normal or if I’ll be able to improve it. Hopefully with the help of the neuropsych team it will be the latter, but only time will tell!

Seizures

I’ve been away from blogging for a while thanks to exams and finishing my BSc – finally! So let’s come back with a big topic: Let’s talk about seizures.

When people hear the word “seizure”, most will think of the dramatic “fitting” style seizure, where the patient loses all motor control and succumbs to violent, jerking movements.

I’ve had seizures. I think. And not once have I lost any control of my limbs. Chances are, many of you reading have had small seizures too, as that phenomenon of deja vu? That’s actually a mild temporal lobe seizure.

Sadly (for medical students who have to learn the difference), it’s not as black and white as the above – there are many, many different types of seizures which present in many, many different ways. Technically the definition of a seizure is:

“Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms”

They can present in many different ways, depending on where the electrical activity starts. If the electrical activity starts in the part of the brain that controls motor function, well, then you get the stereotyped jerking tonic clonic seizure. If it starts in a different part, the motor system might not be involved.

Since my stroke last year, I have noticed myself going through something strange about once a month. The pattern is always the same. It starts with an almost nauseous, warm sensation in my abdomen that rises up my body. As it gets to my throat a sequence of memories start playing in my head – a sequence of all consuming, overwhelming and overpowering memories that I can neither stop nor change. I don’t even know if they’re my own memories, something my mind has created or something I saw in a film or TV show. What even is a memory? Whilst they’re playing, I’m not quite sure if what’s going on in my head is reality, or if real life, is reality. It’s very odd and very disconcerting to say the least. I think the easiest analogy to make is to say it’s like deja vu, that lasts for several minutes. Whilst it’s happening, I wouldn’t be able to say what’s going through my head – and afterwards I wouldn’t be able to remember what went through my head either. But I can hold a conversation throughout – unless if I said something was happening, there would be no other indication. After it’s over I do tend to become rather quiet, a little bit disorientated and withdrawn, but nothing major.

When it first started happening, I thought major of it. It started the month after I was discharged, and it just made me feel quite uncomfortable, but I was back to normal soon enough after it ended. It wasn’t until it started happening more regularly that I started keeping a symptom diary and noticed it tended to happen once a month. At some point last summer I was reading through old university notes (as you do) and came across my notes for temporal lobe seizures. My “funny feelings” ticked every box. The matching of descriptions was uncanny. So off to my nurse I went, armed with my new insight.

If you're a fan of the school dinner lady look, you'll be a fan of EEGs

If you’re a fan of the school dinner lady look, you’ll be a fan of EEGs

That was the end of summer last year. Since then, I have had an EEG (which again, was interesting to see from a patient’s perspective – but so annoying trying to get the glue used for the electrodes out afterwards!). And that’s about it. The EEG showed nothing abnormal… but as I pointed out to the technician, I didn’t have a “seizure” during the EEG so of course it would appear normal. My neurosurgeon seems quite hesitant to investigate this; I get the impression that he thinks I’m overthinking symptoms, perhaps as a result of being a med student and having too much insight. However my nurse does agree that this should probably be followed up and I’m being referred to a neurologist. I really just want somebody to tell me what on earth this is, because it certainly wasn’t there before my stroke. However, I really don’t want to be diagnosed with temporal lobe epilepsy. Even though the actual “seizures” don’t bother me, don’t affect my awareness or my motor function, a diagnosis like that would probably strip me of my driving license and subject me to a lifetime of anti-epileptic medication, neither of which are particularly appealing to me. I guess for now, like with everything, I need to wait and see what happens.

Happy birthday to me!

I’m finally back on track in terms of time! No more retrospective blogging 🙂

Most of the summer, my life felt rather nomadic, what with packing and unpacking for the hospital, moving out of my student house, moving out of my family house, going on holiday… life was moving a lot since March despite my health situation being at a stand still. I knew I had an MRI coming up in early September and it was nice to come back to my new “normality” of hospital appointments and scans. MRIs usually took between an hour or two so I came prepared… and was very surprised when I was told after 15 minutes “Okay we’re all done now”! It shocked my boyfriend too, who had come along to keep me company and had barely completed a level of Bubble Witch Saga when I returned. My parents suggested it must have been good if they didn’t need any extra scans, something that I had thought of and agreed with. I’m now writing this roughly 6 weeks later and there has been complete silence from the hospital since my MRI. I expected not much from the first week post-scan, as they would have to talk about me at their multidisciplinary team meeting (MDT) to discuss results and further action. At 2 weeks post-scan, I had started becoming tetchy, especially because I had just experienced my first lucid seizure – which I will write about in a future post. 2 weeks soon turned into one month, then 5 weeks, then 6 and I still hadn’t heard anything. I was very tempted to call my specialist nurse over this time period – not only to ask her what was going on, but also to inform her that I had been having some temporal lobe seizures and that I was returning to work. My calls went through to answerphone and I decided not to pursue it; after all, I was feeling great. And there was the old adage – “No news is good news”.

I did wonder, however, if a letter had been sent to an old address. As I had moved house twice in the last month many addresses had changed. I asked my old housemates if any “non-descript envelopes” had arrived addressed for me, but the answer was no. I got to a point of serene indifference about contact from the hospital. Until I came downstairs this morning, sifted through the usual pile of bills and was greeted with a non-descripted envelope with my name on it. My heart stopped. It was a hospital letter. I started at the familiar font my name and address had been typed out with (it’s funny the little things you notice), the post-mark stamped in that cornflower-blue ink, turned it over and ripped it open. I was so excited to finally have this hallowed contact from the hospital that I couldn’t unfold the letter properly, and when I did I had to read the words several times to make sure I had taken it in correctly:

The best birthday present ever?

The best birthday present ever?

OH MY GOSH!!!

“The varix associated with her AVM”…. This varix being the reason why I was called back in on an emergency basis… had collapsed! This varix was the thing that burst back in March, it was the thing that was threatening to burst again… and now it had collapsed! I was so happy when I read that I almost cried. Tears actually came to my eyes. The fact that the cerebral oedema was almost completely gone was also amazing, as it was the cerebral oedema that was mostly the cause of my headaches post-discharge.

The one odd conclusion I did draw from the letter, however, is the talk about the gamma knife. I’m getting the impression that the reason why I didn’t have gamma knife up until now was actually because it wouldn’t have worked – that my AVM was actually incurable. I had sort of suspected this anyway, as GK tends to work best on AVMs smaller than 3cm… and mine was 4x3cm. But it seems like this isn’t the case anymore! I mean, I’m not cured. I do still need GK to deal with the AVM because it can grow and it can create more varices and aneurysms. But hey, I’m a step closer to that end goal now!

The best part of this all, is that the letter arrived the day before my birthday. I noticed at the top that it was actually dictated and typed in September. Either it apparently takes 2 – 3 weeks to post a letter, or the staff at NHNN had decided to wait until my birthday to send this letter. I would love to think it was the latter – they did provide amazing care after all. Either way, this is the best possible birthday present anybody could give to this very happy, soon-to-be-22-year-old. I’m going to have to change the tagline at the top of this blog now aren’t I? 🙂

P.S. To everybody that has “liked” this and given your support on Facebook… Thank you. Thank you so much. Soppy as it is, the amount of support that people have given me, even 7 months on, has just been so overwhelming and I would not be where I am mentally, physically and emotionally without it 🙂

Outpatients

As a student, I had been to outpatient clinics a lot. “I’ve got outpatients today” or “Sorry, got stuck with a long list at outpatients” were common messages sent between myself and my peers. Outpatient clinics, or OPC, were a great chance for us medical students to see the long term care and follow up side of medicine. Sometimes we even had the opportunity to take some responsibility and take a history and examination of half of the list for the consultant, then present the patient to them to both save time (or take up time, depending on how good/bad you were) and have a taste of what being qualified would be like. I was pretty excited when the letter came through for my first outpatients appointment, as this hopefully meant that some further plans for my treatment would be made and I could feel like I had a goal again instead of aimlessly floating through recovery. My OPC was on the 1st of July. A week previously, I had come in for a 2 week post-op MRI scan to see how Ralph was behaving after being given a good dose of superglue. As I knew from experience on the other side, outpatient appointments often had a specific goal from the medical side (i.e. discussing results, following up on treatment, seeing how the patient is coping etc.) and some non-specific goals from the patient side (i.e. what’s going on, what’s going to happen, why does this happen, or even just… I’m feeling great). In the run up to my OPC I found myself theorizing the points of discussion that my consultant would have:

  • How are you feeling
  • Here are the results from the scan
  • Next plan of action

I, on the other hand, had a lot more points to discuss:

  • How I was feeling
  • What were the results from the scan?
  • What’s the next plan of action
  • Can I write a case report on myself
  • What should I do about my degree(s)
  • When can I start doing exercise/studying/working
  • Could I get a hospital note to give to uni

Since March I had been faced with a dilemma. During the academic year of 2013/14 I was doing an intercalated BSc in (ironically) neuroscience, which meant I had taken a year off from my medical degree to do another degree. Ralph ruptured the day after my final day of timetabled sessions (22nd March), which meant all I had left to do of my degree was finish my dissertation (due for mid-April) and write my exams (in May). Obviously, as one would expect, having a brain haemorrhage left me a bit worse for wear in terms of academia so my exams and dissertation were postponed until the August period. I was now completely torn. Should I take my exams in August (which would mean I would have to start revising as soon as I got back from the clinic), therefore finishing my BSc in August so I could go back to medicine in September? Going back in September would mean starting the penultimate year of my medical degree, which was notorious for being one of the most intense years mentally and physically. Should I drop the BSc altogether and just go back to medicine in September? Or should I postpone my exams again until May 2015, thus deferring a year and going back to medicine in September 2015? This was a great source of upset and mental anguish for me. I desperately wanted to go back to med in September, to be reunited with my peers and go back to what I felt I was stronger at. My brain was so exhausted from even just simple daily activities that even the thought of going through the process of revision, exam prep and writing the exams put me on the verge of tears. Dropping my BSc was very, very tempting. But then again at the same time it felt like a waste to have gone through all the hours of lectures and lab work, the thousands of words that was put into coursework, presentations, journal clubs and posters and for nothing to come out of it other than an unusually detailed knowledge of vesicles. Fellow iBSc Neuro people that did Cells & Systems, you’ll understand that last sentence far too well.

Due to my extreme lack of short term memory, and just because I wanted the company, I asked my boyfriend to accompany me – it would also be useful to have somebody else’s perspective (i.e. a non-medic) of how the clinic went. The day came and we eagerly got to the clinic early, then ended up having to wait about 45 minutes anyway. Not that this was unexpected to me; going through the OPC process on the medical side showed me that patients and doctors almost always overran their time slot. When I was eventually called, we were both surprised to see it was not my consultant that had called me but instead his registrar. We very quickly ticked off the first three points – I was feeling better, almost feeling “pre-morbidly” normal (“pre-morbid” is the term used to refer to the patient’s state before the health incident happened). The results from the scan were “very good” and there was a “definite change” despite the post-op MRI scan being only 2 weeks post-op. And the next plan for me was to have a follow up MRI/angiogram in September, then a possible further embolisation based on what the follow up imaging showed.

So overall, the answers to the main points seems pretty positive. Unfortunately I had less positive feedback on the other points. It was decided that there was no point in me writing a case report on myself as there would be no “learning point” in my case as, even though my condition is unusual, it apparently wasn’t rare enough to be worth writing about. I was also advised not to work or study until at least after the results from my follow up scans in September. Which, unfortunately, meant that all of my mental anguish about to BSc or not to BSc was dealt with in one fell swoop. Under doctor’s orders, I had to fill out all the relevant paperwork and admin to request to take a year out, and take my BSc exams in May 2015. I will admit: I did cry quite a bit over having to do this. Even though logically I knew it would be the best thing for my health to take a year out, this did mean that I wouldn’t be able to graduate with my cohort that I had started university with and I would have to get to know a completely new year group. I suppose in the grand scheme of things this isn’t too important, but I now had 2 months ahead of me whilst I was waiting for my MRI where I wasn’t supposed to study, work, exercise or generally do much to keep my thoughts distracted from how much I was going to miss being with my cohort. It sucked. It still does.

As I am writing these blog posts on a delay of a few months, I have been given the wisdom of hindsight. And in hindsight, whilst I am still very sad at not being able to rejoin my year group, and I have had other repercussions involved with taking a year out, it was definitely the best decision. Only now at the beginning of October, 6 and a half months on from my stroke, am I beginning to truly feel like I’m starting to return to my pre-morbid state. Every time I think I am going back to “normal”, another month passes and I realise I wasn’t. I’m sure that this time next month I’ll look back at how energy-less I was now. Take home message from this blog post: Sometimes your doctors will make decisions for you that you won’t be happy with at first. It might take a few weeks, or even months in my case, for you to accept that decision or understand why it was made, but often it really is for the best, even if you just can’t see it yet.

Just a spoonful of sugar helps the medicine go down

12th of June 2014

Slowly, gradually, the senses of the world started coming back to me. It started with sound; the rhythmic “beep” of the monitors around me, the soft breathing of the patient asleep next to me, the occasional moan of pain from the other patient next to me. Then I started appreciating the clinical, sanitised smell of the ward, tinged slightly by the acrid smell of what must have been the contents of my catheter. As my consciousness slowly returned to me, I became aware of how cold the ward was, and how the woven blanket that covered me in my crinkled hospital gown provided an isolated pocket of warmth. Soon, soft lights began to blur through my eyelids. As I slowly opened my eyes to a darkened room, shimmering coloured lights danced around me – the lights of my vital signs on the monitors. “She’s awake,” a voice said, and some pale round shapes came into view. As I rubbed away the rest of my sleep from my eyes those shapes formed into the faces of my mom, my boyfriend and my boyfriend’s mom. I tried to speak but instead was met with a cracked tube of sandpaper in the place where my throat once was. It felt like it had been forced open for several hours… and as I woke up, I remembered that it was. Forcing an intubation tube (often the size for the average man) into my throat (smaller than that of the average man), had left it sore and dry, so I gestured to the water jug I saw next to my bed. After a few sips (read: half the jug) had gone down, I managed to communicate.

IMG_1097.JPG

Another beautiful tangle; check out all those wires!

I knew that I had been taken for my operation around 1pm. The rest of the details were lost in a hazy, anaesthetic-induced fog. I was now awake in this dark, cold room with familiar faces next to me and I started to tick off an internal checklist. Could  I move my arms and leg? Check. Could I talk? Just about, check. Did I know who was in front of me? Check. Did I know who I was? Check. Did I have stroke during the procedure? It seemed like that was a negative. Yay! I tried to listen as my family attempted to help with my disorientation, but I was still so tired that nothing really went in. Something about being in theatre for 3 hours, something about being in recovery for a few more hours whilst the anaesthetic wore off. Something about tea, something about the radiologist, something about how everybody was happy. I get the impression that I just mostly smiled and nodded, but soon I became painfully aware of how hungry I was. I hadn’t eaten since 4pm the previous day and if I had understood correctly, it was now 8pm. So I had gone about 28 hours without food! My family asked the nurses if I could have some food and they brought me a little snack box that had a sandwich, some biscuits and an apple. After devouring the food a bit more energy returned to me, but unfortunately my family were told to leave, as it was getting late, I was awake and the other patients in the recovery ward had to rest.

The next few hours that passed were painful, in the respect that I was now wide awake, unable to go back to sleep and by myself in the quiet recovery ward. As I had had a needle inserted into my femoral artery, I had to lie flat for at least 8 hours following the operation to allow the incision to heal and therefore not bleed out into my leg. Time was spent listening to the other patients sleep, or complain about the pain they were in. It was quite lonely, really. Eventually I managed to drift off, and woke the next morning, greeted by my team who explained that the operation went much better than they thought it would, and they think they managed to embolise about 30% of my AVM. Which was great! Talks were being made of moving me back to Victor Horsley now that I had recovered fully from the anaesthetic, which was done later that day. To my surprise I had been moved from the side room into one of the bays – but sadly not my usual middle bay. This time, I was in the bay at the end, which I soon found out meant that you got all meals much, much later than when in the other bays. Sometimes we wouldn’t get breakfast until about 10am, whereas on the other bay we had breakfast at 8:30am! My few days on the ward passed by uneventfully, marked only by the regular visits from nurses, my team and my family. As I had no obvious neurological deficits and I appeared to be stable, I was discharged on the Sunday – four days after I was admitted.

Once I had settled back in to my boyfriend’s house, life appeared to return to as normal as it could be when you were recovering from “brain surgery” (I was told I could officially call it that, cool or what?). Something kept bothering me though – the spoons in the house seemed to be perpetually soaked in sugar, as whenever I made myself a cup of tea it tasted sickeningly sweet. If you know me personally, you’ll know that I am a bit of a tea addict and I just can’t stand tea with sugar. But no matter how I made my tea, it always tasted sweet. I started noticing that everything else was sweet too. Even my saliva was sweet, after a certain time (usually 7pm). I realised that this must be a side effect of my embolisation. I had certainly heard of people having strange tastes or sensations following this procedure, but I didn’t realise it would manifest like this! I started craving the saltiest, most savoury foods possible. My diet morphed; I ended up eating mostly cheese, pizza, olives, crisps, nuts – anything that was satly. Unfortunately everything still tasted sweet. Ever had sweet cheddar cheese? I assure you; it’s weird. I guess to most people the feeling of having a constant sweet taste seems quite good on the surface, but in reality it became very frustrating! Thankfully that seemed to be the only major side effect. For the first week post-embolisation I was incredibly fatigued, sleeping for more hours of the day than I was awake. The entrance site in my leg also became bruised and painful, as did the site on my arm where I had an arterial line inserted (Note to self: Arterial Blood Gases/Arterial lines/anything arterial HURTS like crazy!). It got to the point where I struggled to use my left thumb as the arterial line had bruised and hurt so much. It all passed after a week, however the sweet taste remained. It wasn’t until about a month after my embolisation that my saliva started gradually returning to normal, allowing me to enjoy food and most importantly tea again. It was odd; I had a needle injecting superglue to block up the time bomb inside my brain. And the only side effect I had was this sweetness! No visual effects, no personality change, no memory loss – medicine is truly amazing. Whilst I was experiencing this very strange side effect I couldn’t help but think of this classic time and time again: