I wake up and he is sat by the side of the bed reading his book – my fellow third wheel. He arrived early this morning and I fell back asleep after a brief conversation. I didn’t mean to sleep, it just happened. He looks up from his book and smiles and I’m embarrassed for falling asleep but he doesn’t care.
I’m hooked up to two IVs still, but they are finally moving me to a ward today. I’m so pleased to be leaving the ICU at last, although I will miss the staff. I’m also worried that a ward feels a lot more… Like a place to get stuck. Conversations with London will have to begin all over again with a new set of doctors while I stagnate in this hospital. I’m exstatic to be finally getting somewhere though.
Last night one of the other patients left us (And by ‘us’ I mean the living, the world). I had watched their relatives keep late night vigils and their refusal to leave the bedside. I had seen their concern and their hope and then their optimism. Last night I watched grown men break down into great gulping sobs so overwhelming they couldn’t walk. I watched these people walk past the end of my bed with tear stained faces, too emotional to speak. I watched them hold each other up as they tried to walk and I listened to them howl and sniff and gasp as they cried for what felt like hours. I listened to them saying their final goodbye. I watched them all leave the unit for the last time.
Dr Holler walks in this morning to see me one final time. Over and over he asks if there are no other problems or symptoms, no pain. I don’t tell him about the chest pain that won’t leave.
“I hear the eye problem is a brain one.” He says, and I think both of us are glad he had it checked out so urgently yesterday “you have some lasting damage from the oedema you had when you came in.” I like Dr Holler now, he’s alright and on that first night I was here he saved my butt. We talk briefly about how the scan should appear normal at this stage if their theory is right, but that they have to make sure there isn’t a clot or a bleed or something more sinister responsible for the processing issues and it is just residual brain damage.
Then we discuss books. He examines me thoroughly and I explain the errors that have been made trying to get me off of IVs and the fact that nobody listened to me. He is shocked and appalled and shakes his head a lot. When he is done examining me he picks up the blanket be removed and wraps it back around my shoulders. He lets me make a plan and agrees with it, and reinforces it because it is logical. He makes me feel in complete control and I genuinely believe he is there to work with me and for my body, and that I am not just a statistic. That’s rare for me. He says today will be complicated as they are moving me to a ward later (which he is happy to do when he hears that things are somewhat stabilised on the IVs) but they will keep the other team fully informed and keep tabs so it all goes as smoothly as possible. “I mean I don’t think my body is being as much of an idiot as we think -”
“It was everyone else!” He says, laughing. He pulls up my drug chart on the computer and confirms that I was denied three of the injections that are meant to keep me alive. Or course my body got annoyed last night.
“What are they supposed to have done?” My nurse asks, looking at the drug chart which has huge amounts of my medication doses missed.
“Used their common sense is what they are supposed to have done.” He laughs in disbelief, and then turns to me and sincerely apologises in front of the nurse, says he needs to make people aware of how alarmingly high my dosages are and make sure all the medications I need to exist are actually given.
He returns a while later to check on my vision. He asks if it has improved and double checks what my visual symptoms are. We re-establish that my retinas are fine and my brain is a poop.
“But it hasn’t got any worse?” He asks. I say no. This reassures him.
“Will it get better?” The smile falls from his face and he looks all serious,
“I don’t know. I honestly can’t answer that, we don’t know what we are dealing with yet. We’ll get the scan and see what that shows but you’re definitely going to need a follow up.” He says goodbye again. I look at him and realise he has been through this all with me. He was the last normal thing I saw before my vision went. He stood at the end of the trolley in resits saying he was going to lose me and probably watched the oedema take place inside my skull. He panicked and rushed me to theatre. He admitted me. He expected to lose me and didn’t. He is stunned by my awful IV access. He watched me recover slowly, he dealt with the after effects of all of the events and had my vision investigated. He stands before me on the other side of it all, having just discussed minor brain damage as almost a certainty. He has watched me go full circle and I cannot ever thank him enough for his amazing bedside manner – I am not terrified of him, just a little afraid. And his Scottish accent is awesome.
Could be a lot worse – could have lost my entire visual field. Could have lost my life. Could be staying on the ICU another night. I guess there is nothing to feel right now other than a sort of grateful relief. When you see the things that put people in this unit, how unexpected and awful their health problems can be – one minute serving dinner and the next a major heart attack; day surgery that leads to uncontrollable bleeding and days of ventilation; routine surgery that people never wake up from… You can feel nothing but lucky. Especially when you have your fellow third wheel sat right beside your bed with his leg folded on the mattress. This could have been so much worse. I cannot believe how lucky I have been.
I am finally going to graduate form the ICU. Goodbye bed space 4! No more laying about 4 metres in front of the nurses station sheltered from all the noise by a flimsy curtain. Privacy once more (or at least something a little closer to it), the opportunity to figure out how to walk all over again. Or as one nurse just put it,
“You’re losing your VIP status! Mind you, in this place you don’t want to be VIP enough to need five star treatment. You look so much better even compared to yesterday! Congratulations sweetheart.”
Another thing worth celebrating – today this blog is a year old! And what a year it has been! I will post about this later, but for now I am waiting for my CT, watching the new work experience guy bricks increasingly awkward, and getting ridiculously excited about moving to a ward. Here’s to hoping it was just a cerebral oedema. Never thought I’d hear myself hope that. Or use the words “just a” before “cerebral oedema”. Also the Ct scan should show the tumour in my nose that I haven’t told anyone about… So I’m going to have to deal with that sometime soon I guess. It’s just frustrating that as I’m so far from home it can’t all be properly followed up.
I’m also completely freaking out as my exam results are confirmed tomorrow and I’m terrified the fail I got will remain as awful. Yes, normal things still matter.
Anyway, no way but through.
Trying To Get A Life 