Notes from hospital (1)

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I am in hospital.

It’s Tuesday now, almost midday, and I’m supposed to be here for two weeks. I came in around Friday lunchtime: 95 of my expected 336 hours down; 241 to go.

Because I have cystic fibrosis my body makes a very hospitable home for infections, especially in my lungs. Every now and then too much welcome mat is rolled out and the infections start to take over. My lung function drops, I cough a lot, wheeze, get short of breath. Keep it up and eventually bits of my airways die off, never to come back. Life is a losing battle – the question is just how slowly you want to lose.

This is why I’m currently in the Royal Brompton Hospital in South Kensington. It’s one of the world’s leading CF centres and I’m receiving some of the best care in the world. For that, I am extremely grateful.

Like being an inmate, being an inpatient is a cellular experience. Because of the risk of cross-infection, nearly everyone on this ward is in a room of their own. Socializing with other cystics is forbidden. There is a lounge room, but it’s strictly for one person at a time. Mostly we stay in our boxes.

So life on the ward is deprived of visual, social or spatial stimulus. Hospital is not an architectural experience. But it is a sonic one. Inpatient life is constructed around structures of time: mealtimes, medication routines, cleaning cycles, observation patterns. And each one comes with a sound: knocks on the door, the beep of the nurse call button, the pips of the oxygen saturation monitor, the hiss of the blood pressure sleeve as it inflates and deflates.

CF is an invisible disease (unless you know a few telltale signs to look for – stooped shoulders, tired eyes, a slightly drawn face, club fingers). But it is not an inaudible one. Cystics cough a lot, and with a characteristic deep, wet signature. I’ve noticed it in people I’ve met. My family use it to find me in crowds or in department stores.

In hospital this fact is brought home more forcefully. In our little private rooms, we’re only aware of each other to the extent that we hear each other – our coughs, which we no doubt all assess against our own internal scales of judgment (am I doing better than that? Worse?), and more frequently when one of us presses the orange button beside our beds to call the nurse.

Our drugs are administered at eight-hourly intervals. So early morning, mid-afternoon and late at night we’re each hooked up to an IV bag full of antibiotics. I get ceftazidime three times a day, with a bonus of tobramycin in the afternoon. There’s something like 100ml of antibiotic/saline solution in each bag, and it takes about half an hour to drip drip into my arm. When it’s done, someone needs to come along and give the line a final flush of saline and strap everything back up again. For this, you need to press the call button.

And so those beeps tend to cluster, three times a day at eight-hour intervals, from about 7am to 9am, 3pm to 5pm and 11pm to 1pm. It’s a strange sort of community – a community without conversation, a community that doesn’t feed back. And as the last drug-emptied cluster of the day tails its way past midnight, it’s a community of shared, sleepless resentment.

(I was last here seven years ago. A wrote a couple of short things back then too.)

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