The only thing
To get by” – Wretch & Josh Kumra, Don’t Go
Tears well in my eyes as I push him to go home with the lovebirds tomorrow one more time, my mind secretly screaming the lyrics to this song that I listened to when I was a little younger and a lot healthier. He has health problems of his own, he is falling asleep in the chair and he admits that he wants to go home to Kent but still refuses to leave me. I don’t want to be alone 150 miles from everything I know. But I don’t want him to be in that situation either. He hesitates over and over and eventually starts talking about leaving with the others tomorrow. In front of the doctor he says he and I will be here tomorrow, but I tell him to go. I can see he wants to and guilt is an awful reason to stay. He says he wants to stay, but then admits that he has already moved a lot of stuff to stay with me and has commitments at the weekend that he simply cannot get out of but has tried to multiple times.
“Losing you is one of my fears,
But I ain’t selfish, I’ll share if I have to” – Wretch & Josh Kumra, Don’t Go
I tell him to go home and sleep. He says he can’t because it is raining but he will leave with the lovebirds. I was moved to the medical unit this evening. I am the youngest person in this bay by about 60 years and the whole place smells of pee. He looked at me when we arrived and I just wanted to go home. I cried. He put his hand reassuringly on me and rubbed his thumb back and forth until the tears stopped and I was over myself. I try to hold in my tears again as I tell him I am ok with him leaving. I don’t want him to leave at all, but I want him to be free, I want him to relax. He tells me for the millionth time that I didn’t force him to stay, that he didn’t have to he wanted to, that we’ve been over this and sorry is not necessary, that he understands how bad I feel but I really don’t need to.
We sit for a few minutes and then he takes out his headphone and passes it to me. We sit together, one of his earbuds each, and listen to music. Radiohead. The Killers. It’s all ok.
The lovebirds show up and sixth form friend’s girlfriend cries when the poor old lady opposite gets confused and starts demanding that she does stuff. The three of them leave to go for a walk and return with the food I ordered. They go to leave a short while later. I almost let them go without crying. Almost. My fellow third wheel sits down next to me, wraps his arm around me and strokes the top of my arm with his thumb. I lean into him, but I’m embarrassed. He tells me to shut up and just holds me. Then sixth form friend’s girlfriend tells him to get out of the way and takes his place. She says her phone will be on all night and I should message her. My fellow third wheel tells me to call him. He makes me promise. I let them leave, (my fellow third wheel leaves me his iPad and says I should return it whenever), I pick up my phone, and I sob until I think I’m going to vomit.
I talk to one of the nurses and she just says, “I don’t know what to say. This is a complete load of suck isn’t it? You are beyond allowed to cry my darling.” Everyone keeps saying this, that I have more than enough reasons to cry. I don’t. Could be so much worse. I feEl pathetic, and this frustration makes me cry harder.
And then I walk. Five metres. A nurse holds me up and I cling to my drip stand because my legs are weak and I can’t see properly at all still (which makes me crash into a wall) but I need to do this. Now. For me. My legs shake and I break out in a sweat all over and I’m not sure if it’s dizziness or disorientation because of my sight issues but whatever it is, it is overwhelming and makes me feel like I’m going to fall to the ground. It takes all of my energy, but for the first time in however many days I manage to walk. Success.
“Hellooooo.” Dr Holler appeared shortly after I got to the ward and found me being wheeled about by two nurses on a trip back from the bathroom (yes, I finally got to pee in a toilet you have no idea how amazing such simple things are), “you’ve been bumped up from a CT to an MRI.” He announces. This is somewhere between my first and second meltdown, and I decide I’ve had enough.
“But if you’re right about the oedema it’s going to be normal?” He gets all serious and says he really wants an MRI, it will be more detailed and safer than a CT, and he doesn’t get to order them often. He says they will sedate me for it and he will trying make it happen tomorrow at some point. Then we kind of remember I have a device implanted in my chest and he says it might not be possible with that anyway. Basically, there is no way I can leave with everyone else tomorrow morning.
But then I call my fellow third wheel and he is staying. He is going to be here all day tomorrow and if need be his dad will drive up and grab him in time for him to make his arranged and unmissable thing on Thursday. I tell him I don’t know what I would do without him, I try to make him understand just what he has done for me. We chat until I am calmer, until I am relieved. He persuades me to stay and he calms me down.
I tell him I got worried that he will never want to speak to me again because of this, even though we are already planning visits to stay with each other at uni and movie days with my dog and cooking food… He tells me that will never ever happen. He says he is too stubborn. He says that before the lovebirds leave all three of them are coming to visit me tomorrow and I don’t have a choice in the matter. I am lost for words but I throw some at him anyway. We talk for half an hour and he asks me to call him later.
The male nurse who is in charge tonight comes to see me at the start of the new shift and talks to me for ages. We share a common grumpy organ (non-functioning pancreases of the world unite!) and he completely understands. He says he feels sorry for me. He understands how difficult things are and the effect things can have. It is so amazing to talk to someone with such a thorough understanding of how to manage a condition but also how complex it can be and also what it is like to live with it. Talking to him really helps and we ramble on for ages, even talking about how each case is different. I’ve never had such an in-depth conversation with anyone about this – doctors don’t understand what it is like to live with it and people don’t understand all the medical stuff behind it.
The ICU doctors ask an ICU nurse to keep a close eye on me as I am still on 2 IVs and unmanageable without, and she pops over to the ward to see me and starts going through my notes as she explains this to me. I listen to music and message my fellow third wheel and try to shut out the sobbing of the confused old lady opposite… And I am no longer a human waterfall. Because I am no longer going to have to face tomorrow alone. I do not know how to thank my friends enough for how amazing they are being and have been. I feel so, so awful for putting them through this.
So to all those who I call my friends, to those of you who have been here for me through this, or who have commented on these posts and emailed from across the pond…
“I don’t know why you chose me, but as long as you’re here I don’t need to know.” – Wretch & Josh Kumra, Don’t Go