Moon face

Whilst I was wrapping my head around the side effects of my operation, I noticed some other odd things happening to my body. I was ravenous. If you know me, you’ll know that I have quite a small appetite. For some reason that eluded me, even though I ate three times a day, until my stomach threatened to do what Ralph had done a few months previously… I was still hungry. Hungry is the wrong word. Logically, I knew I wasn’t hungry – I knew my stomach was full. But I just wasn’t satiated. At first I thought this was some form of compensatory mechanism for the fact that I had absolutely no appetite in hospital and had lost 6kg in my week as an inpatient. I certainly was putting weight back on due to all the eating!

My skin had also decided it wanted to be on one of those “5 years younger” programmes. And by that I mean it decided to go back to spotty teenager mode. I’m not saying my skin is 100% perfect, but it had certainly never been covered in so many miniature eruptions for several years. I attributed this to the diet changes; I was eating more, and due to the sweetness I could constantly taste, I was also trying to eat more olives, crisps, generic oily savoury things. So I thought that perhaps this was the cause of the breakout.

It wasn’t until about 5 days post discharge when independently both myself and my boyfriend pointed out the change in my face shape that I was struck by a stroke of insight.

That morning, I woke up, started my morning routine as usual – Shower, wash face, brush teeth. When I looked in the mirror the face that looked back at me seemed quite different. All the food I had been eating had transformed my face into a much rounder, puffier one. I wasn’t happy and vowed to try and curb my seemingly bottomless appetite. When I had dressed and gone downstairs for breakfast my boyfriend made a passing comment about how much fatter my face seemed. I suppose most girls would be outraged if their boyfriend had just told them that they seemed fatter, but this comment struck a chord with me in a different way. Why would it be that independent of each other, myself and my boyfriend would notice the change in my face? Then I realised it.

I had a moon face.

And no, I’m not being racist or derogatory or mean in any way. “Moon facies” was the genuine medical term for a side effect from a specific medication. One that I had taken whilst I was in hospital all three times to help with my headaches, and one that I was discharged with all three times because you can’t just stop it – you have to be weaned off it. Steroids.

No… not those kind of steroids

Eureka! This was my lightbulb moment. All of my weird side effects suddenly weren’t weird at all. Suddenly, there was a great sense of clarity about what was happening to my body. Steroids are sort of like the marmite of the medical world. You either love them or you hate them. They are incredibly useful and help many, many different conditions… but come with a list of side effects. I don’t know about other medical schools, but at mine the side effects of steroids are drilled into our heads as soon as we start hospital placements. They commonly cause a puffy, round face (“Moon face”), “steroid acne”, increased appetite, central obesity, weakness of the thigh and hip muscles (which I had also noticed), and a weakened immune system. I knew all of these side effects. I had done a presentation on them to my peers, and presented an argument as to whether or not they should be prescribed as frequently as they are. Yet the thought of having these steroid side effects every time I took my dexamethasone three times a day didn’t even cross my mind until it was indirectly pointed out.

The reason why I was taking them was to help with the cerebral oedema, which is kinda like swelling… but in the brain. This was causing me to have headaches that weren’t really helped by my usual paracetamol or codeine, but I was very happy on the dex. When I was discharged, I was only discharged on a week long course of steroids – so the side effects shouldn’t have been that severe. I suppose my moon face was very mild compared to some patients that I had seen. Still, I was quite shocked at how noticeably different I felt on a reasonably low dose of steroids for a reasonably short amount of time. But even more shocking was how even though I had studied the side effects and the drug many, many times, it didn’t click that that was what I was going through. Similar to when I had my stroke – even though I recognised the symptoms and I had studied it several times, it just didn’t occur to me that it was happening to me. I suppose that’s the optimism of the human condition, which makes this whole event so surreal; even though you see it happen so often to somebody else, you can never truly comprehend it happening to you.

What a difference steroids make...

What a difference steroids make…

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.

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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: