An extraordinary second chance

Credit: Alexa Mazzarello

Have you ever thought about what you would do if you knew you only had a week left to live? Would you jet off around the world, would you take out loans and spend them lavishly, would you hold your sobbing family in your warm embrace for the last time?

Last week I thought I only had a week left to live and I was interested to note that I did nothing. I had wholeheartedly convinced myself that the week was going to be my last, and yet still I did nothing. I went to work as normal and spoke to nobody about any of my feelings. When people asked me if I was okay I replied that yes, of course, I was fine. I cleared out my locker at the end of the working week because I had no intention of returning. I wrote out a really long and pointless to do list never thinking I would really cross anything off. The only thing I did that was slightly reckless or out of the ordinary was I ate probably slightly more cake than I would on a normal day. I cried sporadically for a couple of minutes at a time before the numb feeling that had enveloped me just stopped the tears from coming and I felt blank again. I said a brief goodbye to people I never thought I would see again, because they didn’t know, so there was nothing necessary about long drawn out hugs and stares and more crying.

In case you’re wondering, I’ll give you a brief and statistical overview of why I thought I was going to die.

I was diagnosed with an AVM in my brain. This is basically a tangled up section of blood vessels that has a difficult time pumping blood around the brain. Over time, the walls of these vessels become thinner under pressure and therefore eventually burst, causing the brain to hemorrhage. The effects of this are obviously fairly life threatening.

As I am quite young, I was told that the chances of my AVM hemorrhaging at any given moment in my life were around 85%, if no action was taken to prevent this. This obviously wasn’t ideal, so on Wednesday 6th September I was booked in to a London hospital to undergo treatment, which involved an incision in a large vessel in my groin for a tube to be put up there and then radiosurgery on my actual brain, including a metal cage fitted to my skull to make sure they were aiming for roughly the right place. Chances of me hemorrhaging right there on the table were around 1 in 200. Chances of seeing signs of improvement if the procedure went well – roughly 70%, but only becoming apparent after 5 years. Anything could happen in those 5 years, with negative effects of radiation rearing their ugly head at any time.

You may think I’m being overly pessimistic with these statistics, but with a history of being treated for Health Anxiety, I had convinced myself, matter of factly, that that was it. This was how I was going to die. I’d kept going by sheer chance this long. But this, this day, Wednesday 6th September, I was going to die. I’d made no plans after this date and every thought I had was leading up to this moment. Don’t ask me how I had come to this conclusion because I don’t know. I don’t even think I was scared. I was just accepting.

And then something interesting happened.

I had gotten so far. I had sailed through the pain of having my head cage fitted, I barely felt it because at this point I was just longing for it all to be over. To see whether I had made it through or not. I had been left in corridors in wheelchairs while doctors waited for my blood samples. I was wheeled into the operating theatre. I could hear people talking but I couldn’t see them, which I didn’t feel was fair, as at this point they had all seen my pubes. I had tubes in my arm and now in my groin which I couldn’t feel, but I knew, had been threaded through a single vessel right up into the corner of my brain, which is a sickening feeling in all honesty. I was trying desperately to think of something, anything, so that the seconds I was lying there trapped didn’t feel like hours. They told me this part would take five minutes. It was taking a lot longer. Every now and again a doctor or nurse would ask me cautiously if I was feeling okay. I felt like I couldn’t exactly say no because well, what could they do about it? Nothing. I don’t know if you’ve ever felt the mixed emotions of utter boredom and the mortal fear of your life slipping away from you at any moment but this was it. There was a tiny dot on the equipment above my head, which I couldn’t move. I didn’t know if it was a bug or a spec. My eyes were focusing in and out and I could feel all sense of reality slipping away.

And then I was being wheeled out, through corridors. Back to the waiting room. Back to where my mum was. And I was told to wait, which was laughable, because I couldn’t move my head, or my legs, and I couldn’t see anything, let alone make a break for it. And then six or seven doctors filed in and they stood all around my bed in a circle and I could tell they were all standing looking at me even though I could barely see them and I knew they were all there for a reason but I didn’t know what.

And then one of them said the few words that no one ever wants to hear in their life, the words you hear doctors saying in soap operas or in those fucking terrifying cancer charity donation adverts.

“We found something unusual.”

And since then someone asked me what was going through my head in those few seconds after I heard “we found something unusual” and it was nothing. I didn’t do a sharp intake of breath. My heart didn’t ‘fall in to the bottom of my stomach.’ I was just still lying there, feeling oddly serene. Like I didn’t give a fuck what they had to say and at the same time giving all the fucks in the entire world.

I haven’t got a clue what the actual words he spoke after those first four were but it went something like this:

“The unusual thing that we found was that we found nothing. The AVM has shrunk, it’s almost gone. This almost never happens. It seems to have taken it upon itself to just heal. We won’t be doing the treatment today. We’ll take the cage off and then when you’re ready you can go.”

And what will stay with me most is the friendly nurse saying to me, “you are an extraordinary woman.”

And that was when I went from feeling like I was about to die to feeling immortal, in the space of a single second. I felt proud of myself. For the first time ever in my life. Not proud of my achievements but so proud to have this beautiful and strong and young and magical and resilient body and everything it had done for me, when I had done nothing but abuse it, thinking it had turned it’s back on me. All those times I’d got drunk, left it unwatered and unfed or filled it up too much until my sugar intolerance left me sick and shaking on the bathroom floor, it had still been secretly working away trying to protect me and it didn’t ask for any recognition or anything in return and I was so proud. That I had done that for myself without even knowing. I felt for a second like I could do anything. Anything at all.

People told me it was a miracle. And this was two days ago but I feel like I already have this strange, warped distant memory of it.

And now I have this life stretched ahead of me, filled with no plans, no responsibility and a whole world of opportunity because I thought I was going to die this week. I thought I would spend the rest of my life just waiting to die.

So here’s a second chance already at twenty two years old. And if anyone wants to hang out then hit me up, because once the bloody holes in my skull heal, I’ve got no plans for the rest of forever.

A small disclaimer: if you didn’t know about any of this before you read this post and you consider us to be close, please don’t take it personally. I didn’t tell anyone about this condition or treatment that I didn’t have to tell and this blog post is my way of sharing it with everyone at the same time. If you don’t know me but you have questions about the treatment or AVM care then please feel free to get in touch with me on Twitter – @teachezbee

 

3 Comments

  1. lucysomerset 8th September 2017 / 1:29 pm

    You’ve ALWAYS been an extraordinary woman Bee – we are all proud (and so relieved you are ok). XXX

    • ooftbeebee 8th September 2017 / 1:30 pm

      Thank you Lucy ❤️ xxx

  2. Vicky 8th September 2017 / 7:41 pm

    ^^ what Lucy said. And am very pleased to hear that you and your amazing brain are ok xxx

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