48 Hours and the World Changed

Posted: April 16, 2012 in Uncategorized

by Sue Marsh

48 Hours. Just 48 Hours.

That’s how long it takes to turn me into a frightened shell of Sue. How long it takes to take away all sense of who I am, of how the world usually works.

Through 28 years of Crohn’s disease accompanied by just about every medical emergency you can think of it’s not the symptoms that have hurt me most. Not the tubes, or hunger or endless nights retching in agony. Not the sudden haemorrhages or failed procedures. It’s the people.

Nurses are not all angels. Some are cruel bullies. Some exist purely to leave you, writhing in pain when all the doctors have gone home. They leave you with a smile, or a shrug. We see it on the TV. We read reports, we witness the cruel abuse, exposed by a hidden documentary camera. But we don’t like to believe it do we? What does it say about us – what does it say about human beings to accept that when we are at our weakest, our most vulnerable, when we literally have to hand our lives over to those charged with caring for us, they might let us down?

I know them, after all this time, from the clip of their footsteps, the way they speak at you but never wait to hear your answer. I know them the minute they come onto the ward. I sense the resulting chill in the atmosphere, the collapse in moral.

For two whole days things went well here on N2 in Addenbrookes hospital – flagship teaching hospital, beacon to the country.

We got a call at 5pm on Thursday night telling me they were going to admit me. They couldn’t promise they could hold the bed til the next day, so Dave and I frantically arranged childcare, borrowed the petrol money to get here, dropped everything and drove the two or three hours up the motorway to Cambridge.

It all went well. The nurses and healthcare assistants were lovely. I’m in a private room and they got Dave a mattress so that he could sleep on the floor. My consultant ordered every test known to man in a bid to make me better before I actually die of malnutrition. The food was OK. People brought me cups of tea every hour or two and I have all 157 episodes of West Wing to watch – what more could I want?

Until last night.

My drug chart had been written up wrong by the doctor who admitted me. No big deal, I simply mentioned it to a nurse in the morning. It was for painkillers – the only painkillers I can take, but I’m not here because of pain, so I didn’t agitate or fuss. Until some time around lunch yesterday.

They’ve got me drinking funny little cream shots for calories. They appear to be making my crohn’s grumbly. I waited and waited for the chart to be changed, only for a Dr to say…… no. Not my doctor of course, noooo a doctor who doesn’t know me at all and hadn’t checked my notes!!

He said what now? He said I couldn’t have the only painkiller I can take? One I have used responsibly for 29 years? One I take at home if I need it? He couldn’t erm, write me up for my own prescription????

By 10 Oclock, I was writhing. Here I am, in a hospital in more pain, suffering more than I would at home. Finally a 12 year-old-netball-team-most-junior-of-junior-doctors came out and wrote me up for a one off dose in amongst many hints and outright suggestions of junkieness. We got past all that about 20 years ago. This, however, does not stop me from having the same old conversations, the same nights in agony while some jobsworth tells me it doesn’t matter.

But that’s not the worst bit. Noooooo. The worst bit is coming into my room aftermidnight and threatening Dave with security if he didn’t leave!!!! Completely out of the blue!! After no hint at all that he shouldn’t be there, after being told it was fine for him to stay (they bought him the bloody mattress to sleep on for God’s sake!!) after 2 whole days of no-one batting an eyelid or even suggesting it might be a problem, they throw him out. At 12.30 am in the morning.

He had nowhere to go!! We live, as I’ve mentioned, three hours away. He’d had a beer with his dinner. He couldn’t drive. We had no money for a hotel – I’ve already mentioned we had to borrow money for petrol just to get here – and I imagine, would not have been able to get one that late at night anyway.

They didn’t even ask him to leave!

The first we knew was literally an aggressive Sister threatening him with security!! At midnight!!!

Being Dave, being calm and sensible, he simply got dressed, put his shoes on and went to sleep in the car outside. When he told the sister he would do that she told him “Go home now!! Why can’t you go home now!! If you sleep in the car park, security will make you leave. Go home now!”

I just stood there in shock. I couldn’t quite believe it.

Human beings would not act this way. Imagine being invited to stay with a friend only to be thrown out in the middle of the night. More terrifyingly, imagine if your friend seemed to see nothing at all unusual or out of the ordinary about ordering you to sleep in your car when you have no-where else to go?

These people are odd. Slightly un-hinged. This is not the way the world usually works, but once you become a patient, it doesn’t matter. “They” can do what they like to you. “They” can leave you hungry, if they feel like it. “They” can refuse to get you a drink. “They” can watch you writhe in pain with a shrug or simply not come to answer your pleas at all.

No amount of eloquence or calm reason will help. There is literally nothing you can do to appeal to the better nature of these people. They don’t have one.

My consultant has ordered every test known to man. They will take weeks to arrange and schedule. I have no realistic idea at all how I will make myself stay here. I cannot lose myself again. I can’t spend weeks watching the PTSD flashbacks whirl through my mind. I can’t voluntarily offer myself into the jaws of people who treat the weak and helpless with cruelty.

How? How do I make myself do it? The only answer anyone has ever managed is “You have to, to get better” Well, no. This makes me worse. So very, very much worse. Oh, I might survive. They might, in the end, find out what’s wrong with me. But at what cost? You must all know me by now!! I’m not given to
unreasonable outbursts. And I HATE injustice. More than anything else in the world.

I cannot choose to be bullied, choose to stay in a place that frightens me beyond measure with people who act inhumanely.


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