“At least once every month?! That’s…” The doctor shakes his head in disbelief at hearing how often my body ends up in this situation (and has survived it because it’s a little bit superhuman when it wants to be) let alone other health hiccups. He can’t find words to finish his sentence. I can’t stop sleeping, I’ve been treated for a more than ample length of time and yet my bloods still aren’t normal.
“How are you feeling?”
“Better thank you” the doctor raises her eyebrows when I say this,
“Good. You’re better than you were, but not better.”
“You’re playing Russian roulette. You keep doing this over and over and there is going to be a time when they can’t save you from this.” My newest specialist nurse (the one from this hospital) says, frustrated with me for listening to my London consultant (my regular consultant) over her (who manages my care if I end up in hospital when I’m not at uni, and has known me a month). I know. I’ve worked my way around the barrel of that shotgun a ridiculous amount of times without finding the bullet you all tell me is there. I’m beginning to wonder if it exists. (See, surviving health hiccups makes me feel temporarily untouchable by man or beast). Also, you’re talking like this is something I have any control over and I still don’t think you comprehend the issue and the fact that I’m clearly not. Why are you angry at me for listening to a CONSULTANT who has known me a lot longer than you have. You keep telling me that every idea you’ve come up with I say won’t work – because I have rare complications, I have tried your suggestions multiple times with multiple doctors and overcome attitudes like this from nursing staff just to persuade people that my life is worth trying to save. You are not in the loop, that isn’t my fault – I can’t help that London are miles ahead of you. I’m getting frustrated at you and your attitude towards me. You are so far behind in terms of where I’m at with treatment now, I am not like everyone you’ve dealt with, and I know my body very well. Stop it. Stop talking to me like that.
“This is just a general district hospital, if you want something specialist like a Port you’re going to have to go to London” she continues, looking at me like I’m stupid and talking to me as if I’ve asked her to give me her pay check. Ridiculous. I think, you people wanted to put one in me a few weeks ago.
“Back again! I came round to see you earlier but you were asleep.” The lovely nurse who looked after me for one night about a month ago. The night so many doctors failed to get a line in me with ultrasound assistance that I eventually cried (no idea why). She abandons whatever she walked in here to do and talks to me, asking about my exams and everything, which I’m surprised she even remembers.
“Of course they put in Portacaths here! Let me see what I can do.” She comes back an hour later having spoken to the oncology nurse, who says that yes they do such things here. She says she will discuss it with the doctors, although almost every one I’ve encountered here has pushed me towards getting a Portacath anyway, which is what gave me the confidence to ask. She tells me who needs to be emailed about it and stuff, but says nobody should refuse given the circumstances.
A doctor walks in. Attractive. Mainland European I think.
“You don’t look very happy to be in hospital. You must be sick of them by now.” I nod. I look at the blood gas syringe in his hand and know he’s about to stab my wrist, an action for which he is already apologising for. He shakes his head,
“I couldn’t imagine being stuck in hospital so often at the age of 20.” I don’t have to imagine, I think. But he seems to be human and actually capable of compassion and humour. We talk as he sticks a needle in my radial artery.
“So how do you feel about that?” He asks me, talking about another permanent line.
“I see why so many doctors have suggested it, yesterday was scary.”
“It was incredibly scary for us too! I think you having a permanent line makes things a lot less scary and traumatic for us and you, and means we’d be able to focus on treating you instead of trying to gain access.” He isn’t even trying to get blood from a vein, and my femoral line is a little blocked and has drugs running through the lumens that aren’t blocked. I also have a reputation for my non-existent veins.
He tells me that with my anatomy knowledge I should study medicine. I laugh, and then flinch. He hits the artery, but it won’t bleed well at all… Until he takes the needle out, I feel a flush of warmth, and my own wrist paints my hand and the bed red.
I decide to make myself useful and make the bed, feeling bad about the blood everywhere (I’ve bled everywhere over the last 24 hours. The cubicle in resus looked like a war zone when I left it. The floor was not pretty; in the panic, doctors had thrown all their medical rubbish onto the floor, including tourniquets, needle coverings, syringes, wrappers that once had sterile contents, blood soaked gauze, and a surprising amount of just… Blood). I also decide I don’t want a hospital gown (this one is, like myself, also covered in my blood) and change into a soft dress I like to sleep in. I add fluffy socks because why not? I am only attached to three IVs. Things look good. I feel good.
The doctor walks back in, excited, my blood results in his hand,
“You’re much better than you were, congratulations!” He beams at me, “Your bloods are almost back to the limit between normal and not.” I smile, he smiles. I used to feel like I was dying with numbers such as this, before they became the norm. They’d put people in resus with bloods like mine, but I am almost safe again. Thank you IVs!
Sixth form friend messages me to clarify that I am actually his sister now. His girlfriend messages me to tell me to stop apologising for last night and clarify that she isn’t scared to go to Norfolk with me at all, that we are going to have THE BEST time, and we will deal with any health hiccups if and as they occur. I immediately feel all the feels.
My body is extremely upset with the events of yesterday. My entire legs are blotchy and mottled. My lower legs and feet are stone cold, as are my hands (the doctor struggled to find a pulse when he was trying to find my artery to stab it) My blood pressure is low despite IV fluids. I’ve swollen up like someone attached me to one of those machines that inflates your car tyres at the garage. I am so tired I’ve fallen asleep multiple times while writing this, and will do so again.
I brought with me the iPod I got in the middle of my longest hospital admission (and hadn’t actually even charged since last May when I got my new phone). It is filled with the music that got me through (there was so much I forgot!) and photos of me with nurses and paramedics and doctors who would sit and eat their lunch with me and even (half out of it and in pain after surgery two days before) my 17th birthday. There are pictures of me last April with hardly any hair (due to a medical treatment, not a radical haircut). I look awful, I am a skeleton. Painfully thin (and this is saying something seeing as I can still see every single rib at one point at least). I gave up on the photos because they induced a horrendous amount of terror (memories of that hospital) and an extremely unpleasant flashback. But the music, the music is like wallowing in hottub of nostalgia.
So excuse me while I go wallow and give in to this sleep and finish escaping the grim reaper. Who cares if I’m not quite out of the woods yet? I like trees. And I am alive. I am incredibly grateful, and incredibly thankful, and overwhelmingly lucky to be in the situation I’m now in, and escape the situation I escaped. I haven’t started freaking out yet, which means I’m ill enough to be here.
I’m completely exhausted and wiped out, but listening to my body this time. It nearly killed me again, but then miraculously allowed itself to be saved. I feel like it deserves a reward because I am proud of it for seeing sense. It is also demanding sleep and inactivity so strongly that I cannot fight it. So… I give in. For today, it can call the shots.