Let Down By The People Who Should Hold On

“It’s ok, I’m here. It’s 2 against 2, which is just the same as 1:1. Just only look at them one at a time when they talk, we’ve got this.” My fellow third wheel says as I start to tremble at the thought of ward round.

I am wheeled all the way through the entire hospital for a CT scan of my head (turns out I am not eligible for an MRI) which comes back normal, as we expected. We bump into a couple of the ICU doctors on the way. They smile and say hi and ask how I am doing.

We go back to the ward. A critical care outreach nurse appears who says my bloods weren’t great when I left the ICU and she thinks keeping me on IVs for the time being is the right call, even though I have gained a reputation for constantly requesting permission to leave this hospital.

The specialist consultant sees me, I ask the other one to leave. I’m starting to become unpredictable and quite unstable in IVs, and we decide to leave me on them and transfer me back to my local hospital in Kent, seeing as my team in London won’t take me and the team here don’t know me and aren’t getting anywhere. The consultant agrees that moving closer to home is better for my mental health, as the lovebirds are now somewhere on an A road on their way back to Kent, and my fellow third wheel will be leaving this evening no matter what. She says that she tried to have me moved to London on Monday for this reason, but that my team there were having none of it and simply told her to try and stabilise me so I could get to them for urgent outpatient discussions about a future treatment plan.

She returns a while later, having spoken to the admissions team at my local hospital, and says she has been told to speak to my usual consultant there, but that she sees no reason why they shouldn’t take me. She is late for her meeting in order to have this phone call. After lunch, while we wait to hear back from my local hospital, she lets me decide whether or not to stop the IVs again. I genuinely have no idea what to do, so I ask my nurse, who says she isn’t comfortable giving how erratic and unstable my blood results are. We leave me on the IVs.

Long story short – my local hospital say no too. My consultant there says that he expects to see me admitted to that hospital sometime extremely soon (probably as an emergency) anyway. I feel let down. She says “If we’re still in this situation in a few days I can phone them again and-”

But I am done.

I cry. I mean I really, really cry.

“My life is in the hands of people who refuse to cling to it with me.” I say. I tell her I feel let down. I tell her there is no plan on what to do when I leave and that I do not feel safe leaving. I tell her that as of a few hours time I am stuck almost 150-200 miles from home. I stop thinking before I speak and think out loud. I wish I’d never come here. For those last 20 minutes I didn’t feel ill. They were stood at the end of the bed saying they were going to lose me but I didn’t feel ill. It wouldn’t be a bad way to go. I needed 10 minutes more and I wouldn’t have had to do any of this. I can’t do this any more. I can’t be here. I can’t go through this again. I feel incredibly let down.  She sees my point, she agrees with it, but her hands are tied. She can try nothing different. We just have to stop the IVs and hope.

I am suddenly furious at London and at Kent. I want nothing to do with either team. I don’t even want to sit in a room and look any of my consultants from there in the face. They refuse to take any responsibility for this, and I want nothing to do with them. I am let down, and I am hurt. Let me down, and the relationship that once existed between us will never recover. It isn’t a threat, it’s a promise. It happens. It hurts too much for me to ever forget. My mind is an animal, it is defensive, instinctive, and it learns far too quickly in order to stay alive. Anyway, I tell her to document that I raised clear concerns with her and with two teams about the lack of a plan and just the general situation, and that if anything happens to me I will hold them all personally responsible.

“Ok then, of course.” she replies, still unconcerned.

She leaves. My fellow third wheel takes both of my hands in each of his and he doesn’t know what to say. He admits that even he nearly cried during the discussion that just took place, and that boy is completely un-phased by everything.

This hospital’s new plan? Stop the IVs but take bloods just before doing so (which of course will be normal because I have been on IVs, but stupidly reassures them even though these results are not a measure of my body’s ability to function alone). Remove the central line in my neck immediately without waiting even an hour to see if my bloods start to go wrong (so far it has taken about 6-8 hours before I am on the brink of/ just about in a medical emergency again and the IV has to be restarted. I remind them of this. They are idiots and ignore me). The nurse from the night before (the male charge nurse with the fellow mutant pancreas) takes out my central line. Then, get back to Kent and be admitted through the A&E department of my local hospital if the events of the past few days repeat themselves and the transition off of IV fails. With no IV access. This woman has no idea how impossible it is to get lines in me. I wish Dr Holler was here, he witnessed the struggle, saw how it nearly killed me when it took them 6 hours of ultrasounds and over 25 attempts and they still failed to get a line in me.

Of course I end up in the A&E department of another hospital less than 2 hours after having my central line removed, one blood level off of the scale, the other 0.1 below an emergency, with my unflappable third wheel and his kind and sympathetic dad sat by my side, both too stubborn to leave (even though my third wheel makes it clear he just wants to go home and sleep and would let me get a taxi the rest of the way if I had money – I can’t even blame him for being sick of it all). Of course the triage nurse wants to get me checked out by her consultant, but I know they won’t let me leave with bloods how they have been and I don’t want to get stuck in their system. I don’t even see a doctor before I discharge myself. I am told to call an ambulance if I get any worse, but in that weak moment I decide the grim reaper can have me.

This is stupid. He can’t. I just temporarily don’t know what to do or how to cope. I am hurting. I am angry. I am well over the threshold of that emergency now and it feels pointless to approach either of my teams with it because they refused to make a plan, refused to have me transferred closer to home, and refused to have any involvement really. I feel there is nowhere to turn. I feel the only health care professional who will never let me down is the grim reaper. I feel like he had the solution all along. He can stop this. He can save me.

And yet I cannot give up trying, I cannot give up this pulse.

Because deep down I know there is no way but through.

Although this time, that knowledge is so deep down it barely feels real.

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