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:
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 🙂