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.