It was a rough night, fixed by changing one of my IVs so it was more concentrated; but I still woke up several times drenched in sweat as my body clawed itself up the mountain of abnormality back to the peak of near normality where it should be at. There was no panic, but there was concern and hurried footsteps and stress until things started to go the right way. I was too out of it and sleepy to count, but people came in to me very frequently to check my blood and stuff.
“You’re back!” I was woken this morning by THE NICEST healthcare assistant. “This is one of our regulars this is.” She said to anyone who was listening, holding her arms open in welcome in a way that made me want to return the gesture and give her a hug. But… You’ve only met me on one admission?
“You’ve come back to see me haven’t you? That’s what it is! (Name of nurse who mothered me and was awesome) isn’t working today, you’ve missed her!” I was so happy to see this member of staff, to have her stood at the end of my bed so cheerfully. She’s in her twenties and has her fair share of health problems. She’s spent weeks in hospital and she totally gets what it is like. She asked me how my exam went. Last time she saw me I was freaking out about the exam I left hospital to sit the next morning (last month). I was so surprised that again, people here remembered. How could they not, you were so focussed on those exams you had no life other than exam stress! I reminded myself.
She sort of half danced across the room with a spring in her step when she had to go and serve breakfast, telling everyone I was her… Something-or-other (something nice, anyway). It was a good way to start the day.
Other than the hiccup of later on, yesterday ended well too. Sixth form friend and his girlfriend came to visit me (even though they’d only left me at 5am) and brought with them edible food (CHICKEN!) and my favourite smoothie (mango and pineapple). Then I fancied another smoothie, so five minutes before the (popular chain of) coffee shop in the main entrance closed, they ran round there, got there as everything was shutting up, begged for drinks… And got them (I paid for most of it, thought I owed them at least that, plus he keeps asking and asking for money). The nurse let them stay way beyond the end of visiting, and we just talked and laughed and the whole time my brain was all I HAVE VISITORS WHAT?!
Of course, I wanted to leave with them, but I only got as far as the doors to the ward with my drip stand (which prefers to stand than move because who even built such useless wheels for a thing?) and watched them wander off.
My plan was not, at this stage, to still be attached to multiple IVs (I’m not even sure the nurses appreciate the beauty of a central line, because they won’t run one drug through it and instead are running it through a tiny cannula in my hand. They seem to think that if this cannula goes, I need an entirely new central line just for that one drug. Usually this drug runs by itself I think, but that doesn’t matter with a femoral line so…) I feel very well when I’m attached to the IVs but I am well enough to freak out and done with being here.
And then came “The Wobble” (warning: this gets pathetic and sad and mentions the grim reaper a lot)
“I’m not putting a permanent line in you, especially if your heart already has problems, I’d be killing you. They get infected.” Trust the one doctor in this hospital who is against the idea to be the guy seeing me in place of the new consultant who joined my care a month ago. He has no idea how bad my venous access is.
“If we can’t get a central line in your neck we simply put in a femoral line.” Simply? No. The vessels are scarred, the guide wire gets stuck. Often they take over ten attempts and multiple doctors to get any form of central line in, and have to remove it within a couple of minutes anyway because it isn’t placed properly and try elsewhere. They get out their I.O gun to drill a needle into my shin bone. After hours of ultrasound machines and every doctor in the department trying. You have no idea. Stand there. Watch it. Talk to your colleagues. I could be treated much sooner but they can’t treat me because I shut down more and more each second. Thanks for nothing.
I explained I knew the risks, pointed out that I’d had them multiple times before and they’d been lifesavers, and that doctors in this hospital have been pushing the idea. He told me I was too young, and walked off, smiling. Smiling. He took my hope with him. He dragged my future away with him too. Instantly, I wanted to end it all.
These people don’t know me. They try and prevent this happening again in the same way they would in a typical case. And it doesn’t work, because I. Am far. From typical. The specialist nurse came back and I lost it. I just broke down.
“What is the point?” I cried quietly, barely able to speak through the tears, “You all keep telling me this is going to kill me and you aren’t doing anything different.” They finally decide they should speak to my usual team in London, who are actually trying to go places.
“You’ve changed since last time we met…”
“You’ve lost all confidence, haven’t you.”
“How do you feel about going to Norfolk?” I think I’m going to die there. Or before, or right after. I think you are leaving me to die and I have just realised how much I don’t want to. I don’t need to. Please, please don’t just leave me. Call London. Will he even help now? Do something. Somebody please save my ass. Please. Please. I can’t… I… I feel like I’m just waiting for the end. I’m tired of waiting.
“I think you’re letting me out of here to die, and if this happens again I’m not coming back to be stabbed with needles for four hours until someone tries and fails and tries and fails and tries and succeeds to get in a femoral line.” She laughs a little. Goes over things that London have tried ages before, and that failed. But these people, like all medical professionals, think they know best. Better than me. Better than the team who know me. I message my specialist nurse in London and tell her I’m scared. I don’t tell anyone I’m considering pushing through the entire contents of one of the IVs to end it all. No more waiting. No more thinking. No more feeling.
“I don’t want to do this again, please I don’t want to do this again. I don’t know how to. I’m scared. I don’t want to… I don’t even see the point in…” My talking is lost to sobs. I see no point in the word help, I’ve given up on any hope of it and I know I won’t find it here. I am willing to beg and plead all of a sudden. I am willing to need and ask and depend on people who will not listen and do not comprehend because this is my life. This. Is my. Life.
“You seem to think this happening again is an inevitability.” Because it is, do you not get that, have you not listened to the things I have been told? Will you not listen to me? You can’t stop this with conventional methods, but you can nip it in the bud when it arrives… If there’s IV access.
“I give in. If this happens again why should I even come back? It’s a horrible way to die but I can’t feel any worse than I did when I came in. It would have lasted an hour or two longer, and then I wouldn’t have to do this any more.”
“I think you need to see a psychologist”
“I think at this moment in time this is a reasonable reaction to the thought of this happening again in however many days. You all keep telling me over and over how this is going to kill me and trying to reiterate the severity of it when I already know, and then nothing changes and you send me out to wait for me to bounce back in again. Do you have any idea what that does to a person? To be told that so matter of factly with no change?” I get the point. I impale myself on it every single day. Stop driving it through my mind. Once was too many times to have that conversation, let alone on every admission, “People tell me I won’t survive an episode like this again and who do I believe? They are always wrong. Until the time they aren’t. Even you said I’m playing Russian roulette.” So take away the gun. Give me a bullet proof vest. Please. Please just help me. Work WITH London although what is the point of that.
“Just let me out.”
“Ok well we need a p-”
“I want to get out.” I can wait elsewhere. I can live until I almost don’t again. I might recover some of the hope that was just crushed. I try to distract her from the fact that I said I won’t be coming back. Where did that whole thing come from? Why am I so pathetic? Wow, that was stupid. Idiot. Idiot. Idiot.
I feel like I need to get as far away from everyone I know as is humanly possible so none of them have to watch the end, and then meet it, however messy it may be.
And yet, I will wake up again tomorrow, and my family will be blissfully unaware of everything I have been through and am facing (which is hard for me and very lonely, but I guess I prefer it that way for them) and I will live another day. Because carrying on is the only thing to do. There is no other thing to do, no other choice to make. I have to wait. I just have to wait. And hope that one side hurries up and takes me soon – the grim reaper, or the future. This body isn’t big enough to be shared.
“I ain’t afraid to die anymore… I done it already” – The Revenant (2015)