“It was by the skin of your teeth this time. Literally.” Male nurse with fellow mutant pancreas says, preparing to take out my central line.
“I know, it was one of the worst episodes I’ve had.” I reply, having been told enough times on this admission just how close I came to death.
“It does’t get worse than that, trust me – I used to work in intensive care so I do know what I’m talking about.”
“How do you even know it was that bad?” I wriggle into the comfort of my denial.
“I can read can’t I? I’ve seen your notes.” Damn. My body’s reputation precedes it.
“Normally managed people have a buffer before things go so wrong. You don’t have that. It won’t be there now. You’re too unstable and this case was so severe that your body will snap back into that state much quicker and much worse, you do appreciate that, don’t you?” I nod, not really letting what he is saying sink in because if it never gets in it can never linger and stagnate and tear me apart.
Before we leave he has a long chat with me as my fellow third wheel packs up the wheelchair. My bloods are already skewed because we checked them an hour after the central line was out just out of pure curiosity. I think he regrets removing the central line. I certainly do. I tell him I’m scared and he asks if I am ok again. He goes on and on about how unstable I am and how serious this will be and how quickly it will get so bad. Over and over like a stuck record he tries to hammer home that this could kill me, how bad this time was, as if I have any control. Finally his dramatic and over-serious conversation (or, as my fellow third wheel puts it – realistic) draws to an end.
“You can’t afford to watch and wait. The second you start to feel unwell or you lose control, you go straight to a hospital. I know you want to avoid them but you need to go. This case was so severe that you are going to deteriorate extremely rapidly in future.” He goes on about how serious things are, about how we have to monitor my condition in the car on the way home and then he looks at my fellow third wheel with a strict plan and addresses him instead until the severity has been drilled into his brain.
“This can kill. It will kill. It very nearly did. You know that. You can’t go through an admission like this again. You know that too.” I thank him, and he lets me leave, his concern evident in the look on his face.
“He’s a bit of a drama queen.” I say.
“With reason. You know he’s not.” My fellow third wheel says. We are both a little terrified, I think. I’m not sure what I say next, I probably try to play everything down to reassure him, but his response is, “You nearly died last week. It doesn’t actually medically get any more serious than that.”
He wheels me out the front of the hospital and his dad meets us with his car. His dad is lovely. He leaves my third wheel and I in the car and goes into a supermarket to buy us drinks and food for the journey. He tells me off for apologising and is so kind and understanding about the fact that bodies can be poops and tells me there isn’t anything that can be done about it and that we are humans and we all help each other. I thank him every few minutes. In the end he gives up protesting and just tells me I am more than welcome, but he won’t take the money I keep offering him for petrol or for the food.
We haven’t even been in the car for an hour when it all goes wrong. My fellow third wheel’s dad diverts the car into Ipswich after we call the ward I just left and speak to the nurse who gave me the long talk about how serious everything is and he tells us to go to the nearest hospital with the discharge letter we were just given and explain everything. Urgently. Now. Without waiting to get to Kent. He sounds extremely concerned on the phone apparently. Good. I hope he’s bricking it. I hope it feeds back to the consultant who didn’t listen to me when I explained that my bloods were fine on IVs but usually took a few hours and then suddenly deteriorated very rapidly. I hope she is terrified for a second or two. I want her to know. I was right. Unfortunately, I was right. And he knew this would happen. She just wanted me out of her hair because she had no idea what to do.
My fellow third wheel voices his disappointment. If I had money he’s gladly leave and let me get a taxi home. His dad is unfortunately as stubborn as I am and refuses to leave me. We sit and talk while my fellow third wheel wanders off, and he says I shouldn’t apologise, that we are all humans and we help each other and he doesn’t mind at all. He won’t leave. Neither of them will. Like father like son, I guess.
The nurse is horrified when she sees my bloods. I knew she would be. She is not in favour of me getting in a car back to Kent and going to my local hospital (which I have no intention of doing but say because everyone wants to hear). She wants me to be seen by a consultant. I know I will be put in resus. I know once they see my bloods they won’t let me leave. I don’t want to be admitted so far from home now that it is clear neither of my teams will have me moved closer to EVERYTHING I KNOW. My faith in hospitals and doctors is currently non-existent and this hurt and betrayal lingers on my mind. She tries and tries to persuade me to stay. Her consultant wants to take me through. I sign a self-discharge form saying that I am leaving against medical advice, and she tells me to go to my local A&E and gives me a copy of her triage paperwork. She says if on the way I get any more unwell or start to feel as symptomatic as I should be, I should just immediately call an ambulance no matter where I am. I lie and tell everyone that I will. In truth, in that moment, I have decided I’d rather just not do any of it any more. This isn’t logic or truth speaking, it is emotion and fear and hurt. But it is speaking loudest, and it wins.
My fellow third wheel pushes me back out to the car in the wheelchair his dad grabbed upon our arrival, and his dad helps me into the car. We head off for Kent.
I wake up with my fellow third wheel (who is sitting behind the driver’s seat, and I am sat behind the passenger seat) asleep with his head resting on my shoulder. I have fallen asleep in turn with my head resting on his. I’m not sure how we ended up arranged this way, I figure he must have fallen over, but it is very warm and I attempt to move him back. In his sleep he jumps, tenses, and sort of moves away a little bit. I sleep until we are almost at my house.
My dog flies at me, ecstatic. My fellow third wheel helps me walk to the front door. He’s already had to hold me up and walk me to the bathroom today, and wheel me into a disabled toilet. He’s watched me almost die and seen me in many highly undignified situations over the past week. We hug in my hallway. I thank him. I apologise. (Even though I have been doing both of these things ever few waking moments the entire way home).
I am extremely dizzy and the symptoms I know to look out for are slowly beginning to build. I crawl up the stairs, wondering if I will ever see them properly again, a time bomb ticking in my veins.
Against medical advice, at 3am (well, at this stage 4:20), I sit and write a couple of blog posts instead of seeking medical help. Because my local hospital were not willing to help, and I feel too awful to bother them, too scared to approach them as a result.
They’ve given up on me again and I do not want to die. I want to fight them. I should not have to fight the people with the power to save my butt just to get them to try. I should not cry at the thought of their faces. I should not be too afraid to seek their help, too ashamed and let down and unable to see the point of doing so.
It’s here again already.
And one time very soon there will be no way through.