My Anglerfish

“I know this is really rough on you. I’m sorry.” was the last thing he said to me as I walked out of the door. We both knew it wasn’t his fault, but I liked it – his guilt. It meant he cared. It meant he had enough of a heart to feel bad, and it meant he wasn’t wrapped up in the thrill of the challenge. It didn’t excite him, this new twist in my health, it bothered him. I was not, in his eyes, a puzzle to be solved – I was a living, breathing, vulnerable (sorry excuse for a) human in need of his help. And I liked that. I liked that in that clinic room I retained my humanity, even in his eyes. It’s why appointments with this consultant don’t scare me as much as all other appointments that ever existed/ will exist ever.

I walked in to find him pondering over the ECG trace the nurse had just done of my heart (you’d think after so many ECGs I would no longer be phased by random strangers seeing my boobs but NOPE, I still crossed my arms and avoided eye contact for as long as was possible – I’m shy).

“Hmmm, does your heart still feel funny now?” There was an inevitable furrowing of his brow as we discussed my recent hospital stay, and he turned back to the ECG trace. I knew it was bothering him even before he said,

“You have new changes on your ECG trace, I just need to get someone else to look over this, ok?” He wandered off with the ECG trace multiple times, and got a nurse from the pacing team to come and ‘interrogate’ Reginald (the thing that lives in my chest), but Reginald’s parameters had been set all funny, so he had no idea what my heart had been doing at all. Thankfully, this means that the bottom chambers of my heart didn’t do anything extreme enough to terrify Reginald, which instantly chilled me out… Everyone else, not so much.

My consultant ordered an urgent MRI, and also wants to give me a general anaesthetic to re-do the thing I had done last year. I have to go back and see him within the next month to see where we go from there. Best case scenario of the whole thing involves one or two general anaesthetics to allow him to poke about inside my heart – worst case involves three, because he’s not sure that the second surgery thing he might have to do (depending on the first one) will work. And all I could think when he started talking me through the risks and stuff (like surgeons have to) was I cant miss any more uni because they are going to throw me out and they are so unsupportive and uni is my life and oh no don’t make me choose help my brain is running away with itself excuse me what was all that stuff you just said? Why is uni worrying me more than you poking my heart? The world is messed up.

Apart from my justified concerns over having a general anaesthetic (or three!), I’m not actually worried about the possibility of my cardiologist poking around in my heart at all. I would go through anything to return to my normal standard of unwell. Anything. They can’t get blood from my veins… At all (even my arteries are now so underfilled/ scarred in the points at which they are accessible, that this is rarely a success either). We decided to stop the diuretics I am on, as I am almost back to my normal weight and my kidneys are a tad temperamental which means that if I stay on the medication I have to have blood drawn every seven days to make are my kidneys are still… Kidneying. (This is impossible, because they can’t get normal cannulas and stuff into me usually). If I stay on this medication, therefore, they would have to put in another portacath/ port – and the last one of those I had gave me sepsis, nearly killed me, and went too far into my heart and poked it all the time causing dangerous arrhythmias (paediatric surgeon not so great).

This is something many doctors have been pushing me to have done recently for many different reasons (long before I started this new medication) – allow them to insert either a Hickman line, a third (or would it be the fourth?) PICC line, or another UFO (what I called my last port because it looked and felt like someone had crashed a small UFO between my ribs, and after a pretty long time, a load of alien invaders/ bacteria/ ninjas, came wandering out of it to invade my bloodstream and basically refused to die).

When I was in hospital two weeks ago they sent an anaesthetist down to put in yet another central line (I’ve had a ridiculous amount of these, they usually put a new one on every admission, but even these are now impossible to insert because I’ve had so many that all the central veins they usually place these lines into are scarred and uncooperative). I was again told that the situation was ridiculous, especially as I end up IVs so often to sort of completely save my life… But it was only when I had a nightmare the other night which simply involved a consultant (it usually ends up being a consultant, after every other grade of doctor has tried – my veins attract everyone everywhere it would seem) who came to try and take blood, that I realised I’ve had enough of people taking over 20 stabs at my veins, and then my radial and femoral arteries, before they eventually admit defeat. Every. Single. Time.

After the appointment, lunch in the hospital restaurant, and a stroll past the hospital fountain (as if a newly renovated/ partially rebuilt hospital in The City of London entirely and only for broken hearts wasn’t kind of awesome enough, they centred all the buildings around a courtyard with trees and an awesome fountain, and then decided to have a museum there too… I mean come on…) I went back to university. Home to halls. Although, it did’t feel like home. It felt like a scummy student flat shared with at least two people who seem to mistake our kitchen for a cesspit (there we go, I held that criticism in for an entire year. My flatmates can be completely gross. COMPLETELY. We’re talking, going home for two weeks and leaving un-scraped plates in a sink full of what ends up being grey, mould-infested water… And it often smells like something has died. Just… No).

I’m slowly managing to walk very small distances again. I’m pushing my body and I know this is at times incredibly stupid, but I don’t want to be limited by it, it is just going to have to deal with my determination to human. Nevertheless, retrieving Winston the wheelchair from my uni room (was too big to fit in the tiny car I was picked up in last time) was a very good idea. I was also reunited with my guitar – after a small incident in the end of last year involving what they were pretty sure was meningitis (they let a junior doctor do the lumbar puncture while I was in intensive care, and after the third time she tried and failed, resulting in the most intense pain I’ve ever felt in my life, I refused to let her anywhere near me with a needle again. They gave me the treatment for meningitis anyway, I got better, it was all ok in the end) and cerebral oedema, I kind of completely forgot how to play guitar. And how to write. And what a lot of words meant (all fixed now… Apart from remembering how to play the guitar – I taught myself before and I’ll do it again!). I grabbed all of my sketching stuff and the shelf full of books I never found time to read – both of which I intend to make full use of over the summer!

Processed with MOLDIV
Winston has alternative uses when the walk is so short that I don’t require his assistance myself – saved us a lot of extra trips! The plastic tub at the bottom of the pile that is stacked up on Winston is literally just full of books and a few art supplies – aka, everything necessary for a summer of awesome rainy days (because let’s face it, this is England).

My bonsai tree was also liberated from the cess pit. It’s a pretty amazing little plant – it survives for months without water when I forget that it exists, and whenever I nearly die, I return to find all its leaves dried up and falling off, and become utterly convinced that it has died. I water it, and a few days later the old twigs dry out and new shoots start to grow from the trunk. I’m pretty sure that my body and this bonsai tree are the same – we both survive when nobody expects us to, and when we totally shouldn’t. I got him before I started university and named him Harvey Tree (don’t even ask me why because I have no idea. I like to name everything ok, it makes life less boring).

I submitted my extenuating circumstances form to the reception of my school at the university, explaining why I had missed my exams. Then I got in the car and was dragged off into that involuntary sleep which poor health generates, the kind that you wake up from feeling like you never slept at all. I woke up back in Kent, and was smothered by my dog as I opened a parcel that had arrived. I’ve been ordering lots of random online junk over the past couple of days, but I ordered myself four books to plough through (in as many days or less) All Quiet on the Western Front and three Dan Brown books. I also FINALLY managed to fit normal shoes onto my feet now that all the extra fluid that had pooled in them has been kicked out by my kidneys. So today was another good day. I’m lucky. Right now I’m about to dive back into the 864 page book I’ve been trying and failing to read for the last couple of days.

“Just keep swimming, just keep swimming” – Dory, Finding Nemo

(my little brother used to be obsessed with this film when it fist came out, and he watched it so many times a day that he wore out not one, but two DVDs of it!)

I mean seriously though, that animated fish was totally right – if you don’t keep swimming into the big deep dark scary trench even when you’re scared, and find an even bigger scarier anglerfish (link to the scene from the film) that scares you even more, how else are you going to find light to read the diver’s mask that you lost, and discover that the thing you so desperately want is at 42 Wallaby Way, Sydney? How?! (also I’m quite impressed that I remembered tall of these details without searching the internet for the clip that I haven’t seen for a couple of years)

My point is that health, and life, even love and trust, get scary sometimes… But the things that scare us the most, sometimes, in a weird way, help us find and realise things we never would have otherwise.

There is an anglerfish in every abyss, and sometimes instead of eating you alive, it’s light will show you the way out of wherever you are, show you things about yourself and humanity that you didn’t know before, and give you back the things the darkness (physical health, depression and mental health etc) took from you and hid from your view right in front of your nose.

This whole health situation is my abyss. Somehow, a very small part of my brain just kept swimming, unsure why, not even sure what it was heading for, just getting lower and lower and losing sight of any light at all, but determined not to give up. I guess being anaesthetised to let a surgeon poke my heart is my angler fish – it’s generally a pretty scary thing I guess, but all I can see is the light, the potential benefits, the diver’s mask it will illuminate that will show me the way to the rest of my life (and to having a quality of life again). Right now, I’ve lost the map, and I am aware that the only way to find it again is to chase that anglerfish.

I want to be able to go for a run again (but right now I’ll settle for being able to walk… I miss walking my dog along the routes that neither of us can run any more, it was our ‘us’ time.)

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