Things to do whilst recovering

If you’ve been told to take time out and chill out and are like me, in that you need constant activity… here’s a little list of activities to consider 🙂

1. Create a blog! For fellow med students, it’s great as a self reflection tool (and I hear FPAS has some aspect of reflective writing too!). It’s also great just to keep a record of things and see how far you’ve come. I was inspired to start up this blog by this incredibly strong fellow student who had a terrible diagnosis thrust upon her at such a young age. Check out her story here!
2. Housekeeping. And I don’t mean your physical house! Clean up your computer desktop, your files, your email inbox – now is the time to finally unsubscribe from all of those annoying emails clogging up your inbox!
3. Actual housekeeping – Do you really need those notes from first year? Or that dress that is falling apart at the seams? Be brutal and clear out old stuff from your room or house that is now just an elaborate dust collector.
4. Catch up with old friends/family – in my case, there was nothing like a near death experience to make you realise how short life is and how valuable the people in your life are.
5. Try a new hobby, or develop an old one… or both! Once upon a time I had a long list of “things to do when I have the time”… now suddenly I had the time, but none of the motivation. I became very apathetic towards everything, spending most of my time just sleeping. My boyfriend decided to take me to Hobbycraft to find something new for me to try, and ended up buying knitting needles for both of us!

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Those that knit together stay together?

I also baked… a LOT:
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6. Try a new look – A few weeks after being discharged in March I dip dyed my hair. But it wasn’t as great as I expected it to be, so I chopped all my hair off and went from boob length hair to a short graduated bob! I figured, if things worsened and I needed to have open brain surgery, I might as well make their job easier by getting started with cutting my hair off!
7. Travel/explore – Now is the perfect time, health permitting. I didn’t have any energy (or money) to go travelling properly but I discovered some cool new areas around me by going for short walks 🙂
8. Catch up on TV/films/books/games – Netflix, Kindle, Steam and my PS3. Need I say more?
9. Keep a symptom diary – This was helpful for me to see when I had bad headache days, or cloudy days, and see if there was a pattern. Which in turn helped when my neurovascular nurse called every so often to see how I was doing.
10. Get cultured – my cousin (the same one of the cupcake fame) came to visit and in one week I think we went to see 2 musicals, 2 museums and lots of tea and cake places!

I’m gonna stop at 10, but i’m starting to be more appreciative of this time I have to do everything I said I would once upon a time! I guess it’s a blessing in disguise 🙂

Who (or rather what) not take to a ball

At the end of my previous post, I had the dilemma of my university summer ball looming right around the corner. I had spent practically my whole week in hospital planning with my mom (and the nurses) what to wear with my dress, how to do my hair and makeup, what shoes to wear… Oh the monotonies of being a girl! The theme of the ball was “The Prohibition” and the roaring 1920s; clearly the influences of Baz Luhrmann’s version of “The Great Gatsby” was more than a passing fad! The weekend previously I had been dress shopping and found the perfect beaded, flapper
 style dress. Which unfortunately set me back by quite a bit of money. The ticket for the ball itself was quite pricey too – £70 – as I had chosen to go for both the meal and the entertainment option, whereas the entertainment only option would have been half the price. Whilst I did want to go to the ball, not only to make the most of all the money that I had spent, but also to see my friends in a setting that WASN’T a hospital… I was worried that my new, post-stroke brain wouldn’t be able to handle having to socialise for longer than a hospital visit, the stimulus overload and the fact that if I felt unwell, or had a recurrence of symptoms… I would be in the middle of East London amongst a bunch of drunken students. Medical students, at least, but still drunken ones. I was very tempted to stay for just the meal and go back before the entertainment began, but that would essentially mean that I had paid £70 + the cost of my dress for essentially a three course meal. Which, as a cash-strapped student, just seemed outrageous! So of course I had to at least try.

I was discharged around 4pm on Friday and plans were excitedly made. Thankfully the location of the ball was a short drive from where my student house was so my mother and boyfriend offered to drop me off, hang out in my house and either pick me up at 1am when the ball ended or be on standby in case I wanted to come back earlier. Which was absolutely amazing of them to offer. Hair done, makeup done, dress on and clutch packed full of PRN (whenever I need it) medication we set off.

A short 20 minute drive later, we were at the venue. It was incredible! The committee had really picked a venue appropriate to the theme and decorated it accordingly. There were large, vaulted, high ceilinged spaces and separated glass walled rooms for each area. Everybody was so beautifully dressed too; some had really gone all out with the theme! I met up with our group and we were greeted with a lavish champagne reception, all of which I sadly couldn’t have. A lot of conversations were mostly explaining countless times what had happened, how I was feeling, what was going to happen. But soon it was dinner, and soon after dinner it was the entertainment portion of the evening.

Towards the end of dinner, I was starting to lag (or rather, go “Ralphy” or “cloudy” as my boyfriend and I refer it as). Socialising became much harder, recognising people, even people I had known years, became difficult and I had to start using generic phrases in sentences to avoid the embarrassment of not being able to say their name. Eventually even the simple act of talking became difficult. It is a testament to the power of the brain – you really don’t realise how much mental effort is actually involved in talking until you suddenly have to actually think about talking. It wasn’t helped by the fact that we were being serenaded by a live jazz band and our table were right next to them…. Who were amazing, but just very, very…. loud. Loud music and flashing lights were a complete sensory overload for my poor brain and it just got a bit too much.

Dinner ended at about 9, after which we all went downstairs to boogie. I managed to meet up with a lot of old friends from different stages of medicine and really did try to catch up with people but Ralph was shutting my brain down. I texted my boyfriend to ask him to pick me up around 10:30 and went to sit down in one of the quieter rooms. 10:30 came… and went. As did 11, and eventually midnight. Despite several missed calls and texts to both my boyfriend and my mom, I heard no word from them. Eventually they turned up at 1am and it turned out they had both kept their phones on silent and had no idea I wanted to come back earlier. The last few hours of the ball were so… overwhelming for me emotionally and cognitively, especially when I realised that nobody was answering their phones. Thankfully some friends were a) drunk enough and b) had been dancing in their heels enough to want to sit down with me whilst I waited for my lift to turn up.

The moral of this blog post? Ralph was an awful date to take to a ball. I could see how the ball would have been amazing, but maybe I was pushing it to go the day after being discharged. Even if I did have the novelty of saying to people “Oh yeah I’m feeling better thanks, I was discharged from hospital yesterday!” Despite the unwelcome end to the night, it was nice to have some vague sense of normalcy. Normal, healthy people go to university balls and have fun, and going to one myself made me feel that little step closer to normal too.

We do scrub up well. It's funny, because in a few years' time we'll all be in scrubs.

We do scrub up well. It’s funny, because in a few years’ time we’ll all be in scrubs.

Hospital: round 2

Let’s talk about headaches. Everybody gets them, right? Harmless, right? Last year on my neurology rotation our consultant spent a long teaching session making sure we understood this seemingly innocuous symptom and my eyes were opened. At first I thought there were just headaches, and migraines… but there was so much more: Tension headache, cluster headache, ice pick headache, migraine, thunderclap headache… the list goes on. Each type of headache had its own specific nature of pain, duration, etc. – it was very specific. However, I soon got to know different types of headaches better than I would have liked. When Ralph ruptured in March, I distinctly recognised that I had suffered from a thunderclap headache (sudden onset, severe, “worst headache of my life” kinda thing)- there was absolutely no way mistaking that pain. But after being discharged I suffered from daily headaches of many different types. This probably had something to do with the fact that I still had a lot of blood in my brain (leading to raised intra-cranial pressure) – and my headaches were quite distinctly… raised ICP-y. By that I mean they were worse on waking, worse on coughing or moving my head and worse when I lay flat (hence the need to sleep upright). Over the course of time I started to learn the signs my body was giving me well, and what triggered my headaches. The physical pain was easy to deal with – I had been given both paracetamol and codeine when I was discharged to take when I needed it. What was difficult to deal with however, was the anxiety. Every time a headache happened, “Is this another bleed? Should I go to hospital?” would race through my mind and circle endlessly until the headache went away. It was so difficult to tell when a headache was serious enough to go to hospital and for a while, the anxiety and paranoia completely controlled me. I soon developed a sort of screening system – if the headache went away after paracetamol or after half an hour, it was okay. If not – monitor. On the 26th of May, I woke up with a headache. It got worse when I coughed or bent over. Which were two red flag symptoms – waking with a headache, and a headache that got worse on coughing. I waited half an hour to see if it improved, but instead it got worse and my neck started getting stiff. Uh oh. I also started feeling a bit nauseous. Double uh oh. I rushed to take some paracetamol and cyclizine (anti-sickness) and waited for that to kick in. Paracetamol didn’t help, so I took some codeine. Still nothing, and in addition to everything else I started being photophobic. Time to go to A&E again. 😦

The new way to treat a headache and photophobia

It was very interesting comparing all aspects of this hospital admission to the one I had previously. Thankfully, this time around I was far more lucid, aware and involved in my admission to A&E. Every step we took was punctuated by either my boyfriend telling me what it was like the first time round, or asking me if I remembered. As we entered the doors of the Royal Free A&E memories came flooding back of a similar journey we took almost exactly 2 months previously. I got flashbacks, mostly involving memories of vomiting (previous to my first admission, I had emetophobia – fear of vomiting – and now wondered if I had very mild PTSD from the experience of vomiting!), but also involving memories of the sheer amount of pain I was in. This time around the pain was present, but at least it was nowhere near the level of pain I had during my stroke. We went through the motions of explaining to the secretary what had happened, giving details but trying to stress the importance of the fact that I had had a bleed previously and what if I was currently going through another one right now. The waiting room was quite busy for a Monday afternoon, so my mother and my boyfriend’s mother flitted in and out, targeting the staff and emphasising the urgency of my case. I’m sure their pleas fell on deaf ears, but their efforts were admirable. I was seen about 2 hours after coming in and attempted to give my history to the triage nurse in a way that was as medically concise as possible, but unfortunately found myself having to explain to her what an AVM was. I was sent to have a CT scan, which was far more interesting now that I was aware of what was going on. Whilst I was waiting for the results to come back to us I had my blood taken and a cannula inserted by a nervous medical student clearly doing this for the first time, who I tried to reassure. A doctor came to clerk me and do neurological exams – again, I had to explain what an AVM was. A team came round to explain I was being transferred to NHNN (surprise surprise) because of my scans, which were unclear as to whether or not I had a bleed. It did however show midline shift of the ventricles (meaning there was too much extra fluid, i.e. blood, within the ventricles – enlarging them and pushing them across the midline). However this was seen on one of my previous scans so I wondered if the previous midline shift had just purely not settled down. Either way, I was being transported via ambulance to NHNN, Victor Horsley ward (yay!), and I found myself explaining to the paramedic what an AVM was. I was amazed at how little knowledge of AVMs other medical professionals had, having explained to three different staff what my condition was, reinforcing the rarity of it.

After an interesting but calm (no blue lights) journey my mother, the paramedic and I found ourselves waiting in the lobby area of NHNN for yet another wait. Somewhere along the line there had been some miscommunication between the Royal Free and NHNN. Rather critically, somebody had failed to tell the bed manager of Victor Horsley that I was being transferred there, so there was no bed available. Greaaaat. Well I was perfectly happy to stay in the bed from the ambulance, but somehow I thought the paramedics might need it. Eventually the bed situation was resolved and we made our way up to the ward, where I was greeted like an old friend with “Look who’s back!” or “Did you miss us?” or “Hello again!” by the nursing staff. My new bed was even in the same place, almost! Same bay as the last time, but the bed next to it. As my mom brought in my overnight bag that she had packed for me, I was handed some paperwork to fill out and some analgesia for the pain. My anxiety settled, now that I was in a safe place.

The next morning I was seen by my team, who were of course surprised to see me. I was meant to have an outpatients clinic with Mr Shieff in about 3 weeks’ time so I jokingly told him I missed him and came in early, but I don’t think that went down well. The team clerked me and asked the usual questions and did the usual exams, but for some reason were very persistent in clarifying whether or not I vomited. I was certain that if I hadn’t have taken the cyclizine I would have, but I suppose for the purpose of medical notes that was a grey area. The plan for me was to have an MRI/MRA, which would be much higher resolution than the CT scan I had at the Royal Free to fully determine whether or not I had a bleed. I was assured that even if the MRI concluded there was no new blood, it would be useful – I had an MRI as an outpatient one month previous to this, but that was slightly earlier than Mr Shieff had wanted, so he was pleased to have another one to compare the changes in my brain over time. Later that day the MRI was done (still haven’t got over the novelty of it – I had always wanted to know what it was like!) and I was returned to my ward. Back to my knitting!

I felt like a bit of a ward veteran, having had a previous stay and getting to know the rhythm and timetable of the ward:

  • 6am – 7am: Morning observations.
  • 8am – 10am (it varied): breakfast was served.
  • 10am: visiting hours began.
  • 10:30am: Lunch and dinner choices were made.
  • 11am: Observations.
  • 12pm – 1pm: Lunch was served.
  • 1pm – 2pm: Visitors were kicked out for “rest time” (afternoon nap – like primary school!).
  • 2pm: Visitors allowed back in.
  • 3pm: Observations.
  • 6pm (roughly): dinner was served. Observations.
  • 8pm: Visitors kicked out
  • 10pm: Observations, then lights out

The next few days were pretty much the same so I’ll summarise them here: MRI showed no bleed, but I was still symptomatic so it was suggested that my AVM was “leaking” blood that was enough to be apparent in me, but not enough to show up on imaging. I was kept in until I no longer needed to take paracetamol for the daily headaches I was having. I was left feeling guilty for two reasons: firstly, I was worried that I had wasted people’s time and NHS resources. What if it was just nothing and I was being overly paranoid? Was there any point in me coming in? I also felt bad for my cousin, who happened to be visiting London from Turkey – yes, the same one who sent me cupcakes the first time round! The very same week that I spent in hospital was the exact week that she was in London, and she ended up spending most of it with me in hospital. I felt awful. But it was amazing having her around as she found ways to make my stay more fun – like bringing me delicious food from the outside to have instead of my dreary hospital food. And as was what seemed to be the new tradition, she also bought me cupcakes!

The best medicine!

The best medicine!

Another, less serious, thought that circulated in my head during my stay: would I be discharged before the weekend? I presented to A&E on a Monday… and that Saturday was the night of my university Summer Ball, which I had been looking forwards to the whole year! All my friends from med school, who I hadn’t seen much of for the past two years (due to me doing clinics, then BSc and them doing BSc, then clinics) were going. And damnit, I had just bought the perfect dress the week previously (and spent far too much money on it)! The closer it got to the end of the week, the more frequently I asked the nurses if they thought I would be discharged by Friday. We even ended up talking about how I would do my hair, makeup and all other sorts of girly, ball-related chat. Friday loomed and, miraculously, I was discharged! Cinderella WILL go to the ball! But would Ralph let me…? Well that’s a whole other blog post…