Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

The Deep End

Sometimes it’s difficult to know how to start these things. So I guess I’ll start right where I seem to have found myself lately – the deep end. Bring a boat, or you may drown.

On the 1st of June I went to see when my next surgery could be done, and what damage the procedure at the end of April had caused. They’d go in through my chest the next time, I thought. 50% success rate. Risk. But a manageable one.

Only he didn’t say that. He said sorry.

He confirmed that the procedure in April had not been a success. He then said that the surgery I had pinned all of my hopes on was way too risky for him to attempt, even if he went in through my chest. When he told me why, my logic agreed with him. He said there were no medications left to try. That wasn’t an option. No conventional or routine surgery was an option either. And he said sorry. And my heart broke into a thousand pieces, not because of all the other implications attached to that, but because I just really wanted to make it to another Bastille gig, and I knew that meant I’d never be well enough to go. Whatever happened at the gig I went to in May seems to have marked the start of a decline so severe I’m now housebound. Most days I can hardly stand. I am too dizzy to lift my head, and don’t have the energy to do anything. I am too breathless to eat, lungs crackling as fluid decides they are a great place to set up camp… My vision fades to black. I spend most of my days in an involuntary sleep. My cardiologist looked at me as we discussed this and just said sorry.

And I watched it all go. Goodbye degree. Goodbye… Everything. I sat in that room and lost it all. I sat, the two health professionals talking to my mum, and I have never felt so lost or alone. Nobody saw me cry. I was grateful for that. My mind went somewhere nobody could reach it.

But my cardiologist is a DUDE. He has done some ground-breaking research in his career and still likes to push at the edges of what’s possible and what isn’t. For example, the procedure he carried out at the end of April was so unheard of I couldn’t find it on google, and the other cardiologist I discussed it with told me it couldn’t possibly exist or be attempted because it would kill me (he wasn’t far off. It’s ruined me a little bit).

I could tell by the look on his face that it was going to be a decision I shouldn’t make lightly. He told me there was one more thing, that this really was the only thing left to try. He didn’t know if it would work. It wasn’t something he wanted or would usually ever think of doing in someone so young. But he was offering me hope in the middle of a void, and before I even knew what it was I took it. I hung from his words.

One thing left to try. I’m doing a degree in biomedical science, so I knew what he was talking about, and I couldn’t actually believe what he discussed was possible. It is, by no means, conventional, but maybe one day it will be. So I listened. And I was terrified. But I was desperate. So when he asked me what I thought, I said yes. Not quite that quickly, and not quite in those words, it was more of a “If you’d told me about this a month ago I’d have told you no way. Now, I want to set my heart on fire. Don’t really have much to lose.” But he told me to think. He told us to go away and to email him. And he just kept apologising.

Things got more overwhelming than that. We decided I needed the surgery within 3-5 weeks of that conversation. The NHS emergency wait list is 12 weeks. The private waiting list doesn’t exist. They use NHS theatres in the evening, have their own ward in the same hospital, and it could have been done within days. He told us he didn’t want us to have to pay. He said sorry over and over and said it wasn’t fair and it was wrong, and you could see that the idea of it made him uncomfortable and very bothered. But we admitted there wasn’t any other option. I couldn’t really speak after the appointment. My mum talked a lot. I put in my headphones and played bad_news quite a few times, until the emotional bottleneck in my mind turned into a torrent of feels.

Turns out that if I wait for the NHS, the surgery cannot happen until NOVEMBER. So that made the decision for us, I guess.

I’m not going to name the price here, but it’s way, way too much. My family can’t afford it. The money will come from my uni fund and goodness knows where else but they say that doesn’t matter, they’ll find it. Finances are going to become very tight. And my self hatred makes this a huge moral dilemma, because I cannot justify that expense on me. It’s only me. When you struggle to attach any value to your life at all, seeing such a large one after a pound sign is very, very hard to handle. I already owe my family enough. I already felt guilty. This guilt became bigger than me. It crushed me. It was almost a physical ache. I asked them not to pay, I told them not to do it. We can’t afford to but we also can’t afford not to. What made me feel even more guilty is that I am so desperate to have the life that this procedure will allow, that despite all of that I still want it. I hate myself and I hate this situation and it’s just… Breaking me.

In order for me to have a life, I have to wreck my family’s… And they will always, always come first. So I found myself in this weird situation. With hope – hope I daren’t take but couldn’t let go of – incredibly close to ending my life. Genuinely I did, to save them the money, to stop the guilt. Because we don’t know if this will work. What if it kills me? It’s going to kill the part of my heart that tells it to beat, what if I go down with that ship? Ideally I need to go into hospital 24 hours before the surgery to be stabilised with IV medication, but we can’t afford that. So what if I almost die afterwards from another health hiccup like last time? What if I need intensive care? What if it all goes wrong? Suddenly this huge value has been attached to my life and I just can’t handle that. I can’t understand it. Morally, this all just feels so wrong.

In the middle of all that, I almost died again. I was meant to be seeing Imagine Dragons in concert that night, but was already too unwell to go. Skippy started a riot, and my blood became acidic in response. I found myself in a resuscitation unit, concern slowly rising, deteriorating after treatment. My heart was such an idiot that my veins were too empty to find. They stabbed at my arteries instead, and even they were hiding. I thought that was it. Honestly, I thought I was going. My mum put in my headphones and played me Bastille, and my mind went somewhere else – she witnessed the power of their music, and from that point onwards people realised the headphones became as vital to my survival (mentally) as the IVs (of which there were 4, and at one point more I think). I lost the ability to move. I barely had the energy to breathe. I drifted off to the sound of Bastille, becoming unconscious and totally unresponsive as my body bailed on me. Panic happened, but not in my brain. I lost myself in the songs. The critical care guys got involved. I woke the next morning unable to lift my head without the world going black (my blood pressure was way, way too low despite a lot of fluids, which meant that rather than me being dehydrated, Skippy was just too knackered to play fair). I told them I was leaving that night because I needed to vote. I did. They had to wheel me to the main entrance because I couldn’t walk, and just crossing the road to go vote made me almost pass out. But hey, I voted. And then I tried to wrap my head around how on earth I’d made it through.

Awful, tragic things are happening in the world, and I always shut down my own thoughts and feelings whenever I hear of them. I have no right to hurt over my situation, I have no right to cry for it. How dare I? Given everything that’s gone on in my home country alone recently how dare I? And yet, the sinking feeling will not stop intensifying. So I just put in my headphones and go somewhere else.

Upon reflection, should I have gone to see Bastille that night? That’s tough, because none of us had any idea Skippy was going to do what he did. He’d never beat like that before EVER or done what he did then. I’m mortified that it happened there. Waking up from 10 minutes of your heart LOSING ITS MIND and seeing Bastille on stage as you open your eyes is kind of a good way to wake up though. But I’d rather have remained conscious. I feel awful for all the fuss on that night in that venue and everywhere since (especially the trouble taken by two members of Bastille and their management to make me a video).

I don’t know where I’m at.

My surgery should hopefully take place at some point next week, and I only found out I needed it two weeks ago. I want it more than anything in the world, and I really don’t. The main reason I want it is because I want to be around and well enough to go and see Bastille again at some point in the future, because a) I am determined that my heart won’t win this one, and b) I’m kind of living for that. Music is powerful, live music is kind of BEYOND magic.

There’s been a lot more going on, but I don’t want or know how to share. Please understand if I don’t post for a while. Sometimes that means I’m on a rollercoaster I don’t know how to get off of, and I just need time. It probably also means I almost died again. Today it also means that everything keeps going black (or Skippy drags me to an involuntary sleep) and then I wake up mid-sentence with no idea where I was planning to go with this post next, hence why blogging is also very confusing and difficult and takes FOREVER right now.

I have no right to complain right now I know, and I hate myself for feeling bad but I just can’t turn it off so please forgive me, I’m trying to get a grip and I just keep spiralling downwards. I’m more upset about London today than for myself, and I hate that my mind still dares to let its thoughts drift to my current situation. The world needs a reset button I swear. 

No way but through.
P.S

One of the most incredibly humans I have had the pleasure of meeting has a little company that makes films, and she is so lovely I recommend checking it out! She’s proof that young minds can create some pretty powerful things, and the idea for her first short film touched on several important themes (I’m actually going now I promise).

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

Does it almost feel like you’ve been here before?

How am I gonna be an optimist about this?”

Bastille, Pompeii 

“There’s a pain in my heart and a pain in my chest

I wanna feel human again

There’s a pain in my head and I’m losing my breath 

I wanna feel human again

Human again”

Kodaline, Human Again 

As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.

(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)

In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).

I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.

Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.

After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.

I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.

I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.

To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.

So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)

But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

The earth it shifts, and I’m on the other side 

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).

Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.

In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).

Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.

This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.

Blunt.

This post is less interesting to read and more… Life. There is an expectation for me to post, and absolutely no desire to do so on my part. I’m prioritising my attempts to get a life (which, after my birthday for a brief period were going extremely successfully). Things are tough right now. I’m going through a lot, and I have needed, and continue to need, space to fall apart and re-assemble into a human that can deal with this situation. Forgive me for that (and probably for the standard of this post). Also, trigger warning (I’m getting so sick of writing that so sorry if you’re sick of reading it).

My birthday was great. Seriously, it actually was. My smile was genuine for the first time in months. I was given the present of human presence, and managed to gather six other humans to join me for a meal out in Covent Garden (London), and then a trip to a gelato place (where I had the most delicious crepe ever and they cut the ice cream into the shape of petals so it looked like a rose in a cone) and then a slow stroll along the Thames. Many photos were taken by my friends so I have memories to hold on to. I have never laughed so much in my entire life. I felt 21. I was with people, I was back where I loved to be. I felt like I mattered but could not comprehend why… And I was so stunned I just couldn’t believe it was real. 

So reality hit me. Or rather, Skippy (my heart) teamed up with reality, and I was rendered unconscious on the London Underground at a tube stop that means both uni and (until the new year) home. I was beyond devastated. My heart was being an arse, basically. As the paramedics wheeled me through the ticket barrier before carrying me up two more flights of stairs, I made them stop so I could tap out my Oyster card. This was, and still is, the achievement of the year for me. After the paramedic telling me that if he let me out of his ambulance my heart would probably stop and he’d just be following me round London all night scraping me off the floor (he also told me I’d just have to have a second birthday and do it all over again just without the hospitals), I ended up in A&E with three of the best humans to be in A&E with. They stayed, they entertained, they made me laugh, they calmed me down. They went out and brought back McDonald’s at 2am. They were totally chill. 

My heart was totally not, but that was fine because my surgery is on the 22nd, so I was told I really did need this procedure, and to take it very easy until then. This procedure, if it works (50% chance) is going to change my life. The reluctant and cautious hope that this slow and involuntary realisation injected into my mind, filled the cavernous void of nothing that had opened up within me. And there was suddenly… A point. There was a point to me again. There was a point to existing, or at least, to resisting the urge to terminate my existence. There was a purpose for every action. Because there was a future. A chance at one. 

I’ll be able to attend lectures at university, I’ll be able to walk about without sleeping for six hours afterwards, and I won’t be worried about the ticking time bomb I feel lives inside of me. No more fear. Or at least, less of it. And maybe even at some stage, a chance at running… A chance at a life. A chance to be closer to normal than my heart has let me be for a while, instead of sleeping all the time and breathless and swollen and wheezing and unable to even lift my head sometimes. And that picked me up. For the first time since November, I was an almost fully functioning human. In three days I did 24 hours of work. I made lists and organised myself, and got into a routine. I started showering every day again. I cooked my food from fresh instead of buying something factory made. I let myself hope. I lost myself in this protective little bubble that surrounded me even in the tough times, warding off the worst and keeping my mind (and my mood, most of the time) intact. It was like having a force field and a superpower; a presence that I welcomed with relief. And that’s something I never let myself do.

It’s something I shouldn’t have let myself do. It’s something that is never safe. In letting myself climb and be lifted, I set myself up for a fall.

My surgery was cancelled last week. A “life or death” maternity case needs the slot. Two lives lost without it I guess. All of the above stopped. I lost myself in a void. I very nearly terminated my own existence. I very nearly drew my own blood. I sat in the darkness on the floor for three hours and cried. I lost everything, because I lost the hope I had accidentally been relying on and I was in no state to survive the fall. There’s a time when I probably would have explained my feelings here, explained why I was ashamed and guilty for attaching enough value to myself to feel upset at all and all the rest of it. But it still doesn’t feel safe to share here at the moment. Needless to say I have relapsed a little. Less so now. Denial is my home again. And it’s where I’m going to have to stay. My fellow third wheel and I are going to London tomorrow for the day – we’re going shopping and to see a film that he’s seen but that knows I really want to. We were meant for be going for a drink, but I can’t do that now. My entire family is against me going. If I go to walk anywhere or do anything they tell me to think of my heart. But life is about both mental and physical health, and I cannot just sit festering in my thoughts. 

I don’t want to be limited. I physically feel, and am being treated, like I just turned 80. I need to go places, see people, let my mind feel 21. Yes my birthday annoyed my heart, but I was on a knife edge and had been planning on ending my life. I’d go through all the heart drama again for another evening like that. When I’m thinking of other stuff, I forget that I’m scared, I forget that I’m lost, and I forget that I’m hollow. I hate my body right now. I’m angry at it. It’s all that people see, and now those people are joining forces and helping it to limit me. Every part of me rebels against that. I won’t stop everything, why should I? Because a cardiologist took away my hope? Should I die inside to stay alive? What is the point in existing if you have no will to live? I’d top myself before I ever made it to the 19th of April, without continuing my walks in the woods, and the chance to socialise (because this house is NOPE).

I was meant to be having surgery to remove Cedric (growth in my nose) on the 12th of April, and now can’t have that general anaesthetic, because my heart is an unreliable poop. Cedric has now grown to such a size that he obstructs my entire nostril, and is also pressing on a nerve, resulting in nerve pain that runs from my sinuses right through my face and down into my front tooth. Cedric was meant to be removed ages ago, and the surgery has already been delayed 3 times because of my heart. 

My body continues to rebel. Along with the new Cedric pain, Skippy has decided to intermittently hurt in ways he never has before. Through to my back, numb left arm, neck, jaw and then pain in my jaw… Accompanied by the urge to vomit and a tiredness so overwhelming I cease to function and then sleep for hours. I tell myself that I am an idiot, and it will stop, and that there’s nothing that can be done until that procedure (which can’t happen any sooner because it is such a complex case that it needs specialist people present)

And if they are rebelling, why not let my immune system join the show? Yesterday I changed my infusion set to find a small volcano in my stomach (a red lump with a hole left by the cannula in the middle of it which usually closes up pretty quickly). Grossness occurred, confirming my suspicions that somehow my immune system had allowed my subcutaneous tissue to be infected by a supposedly STERILE cannula inserted into a THOUROUGHLY DISINFECTED site. So I went to the GP today. I’m meant to have antibiotics at home because my immune system loves to welcome visitors into my body so often, but I ran out, so she prescribed me enough for my acute issue, and then some more to replenish my supply. She investigated the hard lump that has formed deep below the little volcano, and concluded that it was a collection of infected material and/or gloop about half a centimetre beneath my skin which was pushed much deeper by the cannula and has decided to set up home. If it doesn’t go down within a few days on antibiotics, or gets worse, it needs to be operated on. BUT… MY HEART + surgery that isn’t specifically for it = NOPE.

I’m dealing with normal life stresses. Family dynamics and issues that make me feel… like hurting just to replace the emotional pain with something that can’t last. Behind my health, I am a whole normal person, and most of the time normal life stuff is harder than being unwell. People forget that. I can’t talk about my emotions right now. They are… for my mind only (and my counsellor, a fairly recent and priceless addition to my life) and I cannot deal with being misunderstood right now. 

Reading all this, things aren’t even that difficult. I just no longer have the strength to remain resilient, and letting myself go through the process of feeling what my brain decides to feel stops me breaking down again. I’m trying to find my motivation. University are being absolutely amazing and offering me support that makes my life so much less stressful, so that makes it slightly easier for me to try and think about uni work. But honestly, all I can do right now is hug my dog and play Sim City and go for long dog walks with my surrogate mother (next door neighbour). I’m trying to get a life. But before that, I need to just figure out how to get to a place where I can start. 

I know it’s only four extra weeks until the surgery…

But 4 weeks is a long time to be scared.
Despite featuring in this post, my heart just isn’t in it. I hope you’ll all understand if I just stay away for a while. This just isn’t… Me, right now, and it’s hard enough trying to act more ok than I am on person, I just want to withdraw and just… Rebuild. Possibly. Because honestly, I’m on the edge of existing or erasing that existence right now, and I’d like to try and go with what’s right by everyone else, instead of what’s easiest for me. Which is going to take… Everything I have. 

The Aftermath

I was so busy not being bothered about the build up to my surgery, that I completely forgot to consider the aftermath. I was somewhat surprised to find myself in significant pain after the procedure, because I’d bizarrely forgotten that… surgery hurts. After being in theatre for 3 hours, I woke up in recovery choking from where a breathing tube had been in my throat, briefly opened my eyes long enough to acknowledge the voice that was saying, “good girl, well done!” and then was out of it again. I take forever to come round from general anaesthetics, longer than I should. For some reason, it’s a thing my body likes to do – cling to the drug induced sleep.

(You will have to excuse this post, I am quite exhausted and out of it still)

“I’m leaving at 7.” My dad said as he got back in the car at 6:57am. I’d been sat in the car while he made a small pit stop. I got out of the car and wandered through the spookily empty hospital. I’d never seen that hospital so empty before, seeing as it’s the biggest hospital in London, arguably the country (and I think I read somewhere that it’s the largest newly built hospital in western Europe). Uni Pal met me half an hour later, and we watched people slowly trickle in to start their shifts as we sat and chatted away. Somehow, we found the day surgery unit. They wouldn’t let Uni Pal through to sit with me, but made her wait as they wanted to talk to her (… and then never talked to her). Nobody could find my notes. Anywhere. Two doctors and an anaesthetist came to see me, each one asked for my bloods to be checked because I hadn’t taken my medication for that morning (as instructed)… an hour later, I still hadn’t even seen a nurse. When the nurse turned up, she had no idea I had any health problems because… I still had no notes. Eventually the surgeon had to come and make me sign another consent form, as my notes seemed to have grown legs and decided they wanted to see the world, and without the consent form I’d already signed in clinic, the surgery couldn’t take place. It took them a further hour and a half to find a wristband. The lady came to take me to theatre to discover that nothing had been done, I didn’t have my notes, and nobody had printed any wristbands (especially important, as I have an allergy to one of the medications they wanted to give me). The doctor who wants to send me off to another hospital to go through a treatment plan that consists of a living hell had been discussing me on the phone with them in preparation with the surgery, and that made me all uneasy, because I am not a fan of being discussed.

The anaesthetist tried to put a cannula in my hand, and then I pointed at a vein in the opposite forearm and told him that it was the only place he stood any chance of being able to get a line in. To my surprise, he chose to use that vein.

“People don’t usually listen when I say that.” I said, expressing my surprise,

“Why not? Life’s too short not to listen!” He smiled. He turned around with a few different syringes in his hand, and less than a minute later (and only a couple of minutes after entering the room) he was saying “Off to sleep. See you later.”

There was the familiar awkward moment where I wondered if the anaesthetic was working (once before there was an issue with my central line and the anaesthetic didn’t send me to sleep for minutes and minutes – to the point that they double checked all of the syringes and the bottles they had drawn stuff up from, then just used the gas to help it along). I listened as my heart rate decided to increase, and the light-headedness hit me right about the same time, and then I was out. Except I don’t remember falling asleep, I just remember briefly waking up in recovery and coughing and coughing because the breathing tube had irritated my throat, which hasn’t happened before (apart from when I woke up in the PICU when I was 17 and ripped out my breathing tube before the doctor could deflate the balloon that keeps it in place… They almost had to intubate me for another 24 hours to let my trachea calm down).

I was taken back to the ward at 1pm, I next woke up at half past 3. People kept asking me for my arm and stuff, but I had no control of my body. It wouldn’t listen to me, and I didn’t feel attached to it. I’d try to move my arm and twitch my foot instead. I couldn’t talk to say I was in pain, because I couldn’t really open my eyes and could only manage to groan. The first point at which all of this changed, was when the nurse walked over to find me with blood down my front. Clots were just dripping out of my mouth. She told me to tell someone if it didn’t stop, and gave me a bowl. When I tried to drink, I immediately retched and spat out a bowl full of blood clots again. There was a lot of blood in my stomach, and in my mouth, and all I could taste was the sweet metallic taste of it.

I was so dizzy that I couldn’t move my head. The registrar and the consultant both kept hanging around, and eventually it was the doctors that were taking my blood pressure. Turns out that their presence, and my ridiculous dizziness, was explained by the fact that my heart wasn’t too impressed with the general anaesthetic so had decided to decrease my blood pressure.

“Very low.” The nurse said, tapping the numbers on the machine, “You need to drink more.” I didn’t, because a) I physically couldn’t drink, b) I was on IV fluids, c) I’d literally had a systolic blood pressure of half the blood pressure she was pointing to (admittedly I’d felt absolutely awful at the time and been in quite a situation, but my brain was satisfied that I’d had much worse).

I laid there by myself, in pain, while everyone else had relatives sat with them. I imagined my dog, and thought I was cuddling him, and then started crying a little bit. Then I cried for my mum, who was out with her friend. Then I just kept randomly crying for no reason at all, which the nurses said was the anaesthetic messing with me. Uni Pal and Uni Mum both messaged me as I laid there all high, which seemed to calm my brain down a lot, and I called my mum but she didn’t have a lot of time to talk as she was with her friends.

The hospital let me go at just past 6pm, when my blood pressure suddenly decided to pop up to near normal levels in a very short space of time. We seized the opportunity, and left. My dad was actually pretty alright. Usually we don’t talk, and he says negative things or speaks with an aggressive tone when he does address me. I usually dread being around him, to be honest. But he actually seemed a little sympathetic for once, and cooked me an entire broccoli (because all I wanted to eat in the entire world was broccoli).

For the first 27 hours I refused pain relief of any form. I don’t like taking medications if I can avoid it. Also, I’d set myself some weird personal challenge. Part of me decided I was pathetic if I took pain relief, and part of me thought I didn’t deserve it. The rest of me decided it would just endure the pain. Physical pain isn’t something that majorly affects me and I have an absurdly high threshold for pain (I walked around for weeks with a broken arm on more than one occasion, and yeah I could feel it and it hurt, but it wasn’t enough to bother me).

It has to be extremely bad pain for it to bother me, and bother me it did. I wasn’t sat there rocking or anything, but it stopped me being able to think about anything else at all. It was not fun. I hadn’t been prepared for any pain, and certainly not at that level. After 27 hours, my mum got home, walked over to me, and told me that the dog was not getting his antibiotic (for an ear infection) until I took the opiate-based pain medication she was holding out for me to take. This was a good tactic, and resulted in me taking the pain medication… which then knocked me out for hours and made me high as a kite when I woke up.

Processed with MOLDIV
At some point I cooked alphabet spaghetti while slightly out of it (I was so disorientated I couldn’t walk straight, it was an interesting cooking experience) and I spelled this on the kitchen side
And that’s how I’ve spent the last few days – drugged up to my eyeballs and still in pain on top of that somehow. I’ve done nothing but sleep, and when I’ve been awake the world has been very strange because hey, opiates. I did however manage to look after next door’s chickens and rabbits (all 30 of them!) again last night and this morning, despite concerns from everybody as to whether I was ok enough to do a responsible thing (I took so long that my little brother ended up climbing over their fence to come and make sure I was ok).

Things I have written in the notes section of my phone whilst clearly under the influence of pain medication include:

“We have to help Dorothy and Ross” (I have no idea who Dorothy and Ross are, we don’t actually know people of those names, but according to my brain they need our help).

“The buckets know the penguins are coming Lance, we have to warn them” (I mean… what even… was I thinking?)

Other amusing incidents:

My mum told me I needed to test my bloods, my response, in a very serious and urgent tone was “But what if they don’t know the answers to the test?” And then I walked off somewhere.

My dog walked past me, I told him I loved his face and he didn’t reply, so I shouted, “I don’t know what your name is but you are RUDE!” and continued to call him rude, until he brought me his toy to play tug of war, and I decided to tell him off for snatching things instead… I then almost cried because he was chewing his “defenceless” toy, and “rescued” it from him.

So erm… yeah.

This post was brought to you by: my brain under the influence of Codeine (which is metabolised to morphine, potentially explaining why I’m a little dopey).

I will post something better when I’m back in the world of normality, but I don’t know how long that will be, so I thought I’d just post an update.

The Best I Could Come Up With Right Now

On the day of my surgery, we woke up before the sun and made our way to a specialist heart centre in London (there was a surprising number of people on the road at 5:30am). We watched the sunrise shoot oranges and purples over the London skyline as we parked the car, and then got onto the tube (which was also surprisingly full). I stood up most of the way, watching businessmen and gym fanatics sitting with headphones in their ears and papers in their laps. I didn’t look like I was about to have heart surgery, and I liked that nobody gave up their seat for me, because that made me feel like I wasn’t about to have heart surgery.

I don’t have any thoughts to share with you about life, or the world, or how to get out of a rut. So instead I will just tell the story of the last few days, starting with the guy who poked my heart, and probably ending with an apology about how boring this post was to read, and how appallingly it was written (I am going to try my best, but sometimes that is just sub-standard).

The surgeon came to the ward and walked me down to theatre himself, which surprised everyone. As he opened the doors for me to walk into the cath lab, I was hit by a blast of cool air, and a surge of adrenaline that seemed to come out of nowhere. I told myself to get a grip, and laid down. The staff were very friendly. They all introoduced themselves, and then checked who I was about a million times. Because my veins are impossible to get a needle into, they gave me a central line instead (which was very painful because the vein was scarred). Then they medicated me out of my mind (seriously, they gave me enough drugs to sedate a horse.) I felt like my body was floating up off of the bed, but when I tried to warn the staff that they needed to tie me down, I was so drugged up that all I could manage was a groan. I remember getting very annoyed at myself for not being able to form words, but I felt really dizzy and my eyeballs felt really warm inside my head so I soon began to think about that instead… Then everything felt like it was moving… And then I woke up to the doctor telling me that the first procedure was over and done with, and he was going to implant the device (which I have named Reginald). I was high enough to have no inhibitions, and ‘with it’ enough to be nervous. The combination of these things was that I freaked out a little. Or at least, I did internally. I was still slurring my words and feeling pretty out of it, so I’m not sure what I said to everybody else. They gave me some diamorphine (medical heroin), and this is where the fun really began.

I woke up back on the ward almost three hours after I’d left it. I say that I woke up, but what I actually mean is that I briefly opened my eyes – acknowledged the pain from Reginald, and then I was out of it again. For three hours I was so drugged that they couldn’t wake me up, I kept forgetting to breathe, and my eyes kept rolling into the back of my head if they managed to get me to open them. I couldn’t talk, so I just kept groaning, and I was actually pretty scared that I couldn’t stay awake. I would hear the machine alarming because my oxygen levels were too low, and then realise that I hadn’t breathed for an insanely long amount of time. I could hear people saying my name, and I wanted to ask them why I couldn’t wake up properly, but my mouth seemed to have been disconnected from my brain. I fell asleep trying to drink. I fell asleep injecting myself. I fell asleep trying to talk. I didn’t even know I was falling asleep. I was imagining things that felt so real, and then somebody would say my name and it would startle me and pull me back to reality. They decided that I had been given waay too much diamorphine, but despite this I still felt like I’d been shot. They sat me up too soon and the wound from the central line and everything started to bleed.

I was the last person left on the ward, and I was still so out of it that they wanted me to stay overnight. The staff seemed to find great amusement in the fact that I was still so out of it. This made me want to hit them. I’ve no idea whether I told them this or not, because I was still so drugged up that I don’t even remember how I got out of the hospital and into the car. I do remember that every single bump in the road hurt, and that being in a moving car while you already feel like you are floating is very disorientating. They sent me home with a heart monitor and various leaflets about the surgery and Reginald.

I’m pretty sore. Reginald has taught me that you can’t really do anything without engaging your chest muscles, and so most movements of the upper half of my body pull at the wound above him, making me whine like some sort of animal. The other wound is pretty sore too. I have to ask my family to get things for me. They want to help, and they won’t let me get out of the bed that they’ve made up on the sofa for me, but I feel awful asking them to run around for me. My health and I have already burdened them quite enough already. I’m about to go to university and get out of their hair. The last thing I want to do is tie more knots and become matted in, because then they will have to cut me out.

Yesterday I received a small parcel in the post. I thought it was strange, because I hadn’t ordered anything, but when I opened it, it was a book. A very philosophical book from the lovely person who sent me a card the other day. If you’ve read this blog before then you’ll know how much stuff like that means to me; it really cheered me up. Another thing that has really cheered me up is my dog. He seems to know that I’m a bit delicate at the moment, so he’s being super gentle around me, and has spent most of his time laying by the side of the sofa, periodically resting his head in my lap to make sure that all is well, and demanding affection frequently (as per usual).

Last night I had a dream that I’d been shot in the chest. When I woke up the wound over Reginald hurt a lot, and it was bleeding under the dressing. It took me a few sleepy seconds to work out that I hadn’t actually been shot, but had instead rolled over in my sleep and pulled at the healing wound.

Today my mum helped me get dressed and then took me shopping for university supplies. I had to use my arch nemesis (the wheelchair). My little brother decided to push me… Being pushed around in a wheelchair by a twelve year old boy… Is terrifying. He either went really slowly, or ridiculously fast. There were multiple crashes. He liked to leave me in everybody’s way… But I couldn’t push myself, so I was grateful for his assistance.

Two people who I used to go to school with were working at the checkout in the stationary shop. I don’t really know them well, but they were both in the popular crowd and effortlessly confident from what I remember of them. I’m not confident. People that they used to hang out with made my life a misery on multiple occasions, so I instantly found them terrifying by default. My brother and I left Mum to pay and went to wait outside the shop with her. She looked at me like I was being ridiculous, and I know that I was, but I wasn’t in the mood to be judged. I was already judging myself enough for three people, and I didn’t need them adding to it.

A lot of people I know are at music festivals right now. The staff in theatre asked me if I had any plans for my bank holiday weekend as they got me all prepared, and I couldn’t help but laugh. When they found out that I want to be a doctor, they started asking me about the more distant future instead, and I’ve spend the last couple of days thinking about what I want to do with it. I made a short list, and it goes like this:

1) Teach myself to write (better) and draw with my left hand, 2) Go to and graduate from university, 3) Go to a music festival, 4) Drive around Italy, 5) Go to California, 6) Meet a guy, settle down, have kids, and have a boring life (because to me the kind of life that everybody else calls boring is heaven. I need no more, and more bizarrely, I don’t want more. I used to, when I was younger, but now I’d do anything to go back to ‘boring’) 7) Help people – raise money for charity, start my own some day? Become a doctor, volunteer with a charity that provides medical care for people who don’t have access to it 8) Be awesome

Friday wasn’t a great day, but I just kept reminding myself that there were plenty of people in the world, and in fact in the very building I was in, going through much worse things. The point is that just like “one man’s trash is another man’s treasure”, your ‘boring’ is someone else’s dream.

I’ve already rambled on about quite enough nonsense. I will write something worth reading soon (maybe I should add that to the list above), but for now this is the best I have. If you read it to the end, then thank you very much.