a question of time

‘What did you do, before all this?’
‘Me? I was a mechanic.’
‘That’s a pretty cool job. Although I don’t know so much nowadays, with all that on-board computer stuff.’
‘Yeah? Well, at the end of the day, you still went home with dirty hands.’
‘I just wish I knew more about it. It’s a bit of a black art, to tell you the truth. Every time I hear a funny noise in the engine I think crap – that’s another two hundred quid at the garage.’
‘Depends on the garage. Depends on the noise.’
‘Definitely. Okay – if you just reach over to me with your left hand and we’ll roll you…’
Chris is a palliative patient, newly on the books. His cancer has developed a rare complication, leptomeningeal carcinomatosis, a kind of main-lining of cancer cells via the cerebrospinal fluid, leading to widespread metastases, neurological complications and a rapid deterioration. He was diagnosed just a couple of weeks ago, and yet already he’s lost the use of his legs, and all bladder and bowel function. It’s been a mad scramble to organise any kind of workable care environment at home. The hospital bed, hoist, table and armchair take up so much of the little room, there’s barely space to move. At least there’s a large patio window overlooking the garden, so it doesn’t feel too enclosed.
There’s a shelf to the side of the bed, and a framed photo of Chris and his young daughter, Chloe, just ready to go up to big school.
‘How’s she feeling about that?’
‘Good. She’s good. I mean she’s anxious about it, like you would be. But the fact is she’s outgrown the old school and she’s ready to move on. She came in wearing the new uniform yesterday and she looked a real treat.’
He goes quiet for a bit so we cover by making lots of business like comments about the sling, the manoeuvring of the hoist and so on. He seems to recover himself though and when we ask him if he’s ready to transfer to the armchair he says ‘Yep! Take her up!’
‘Sorry about all this,’ he says, swinging in mid-air.
‘No! We’re just sorry you’re having to go through it.’
‘Yeah, well.’
We get him set up in the armchair, then tidy up the space, put clean sheets on the bed, make everything good. His wife Sarah comes down with a tray of breakfast. We collect our things, shake his hand and go.

*

The way the rota works, I don’t see him for almost a week. I’ve been told to liaise with Rachel, a live-in carer from a specialist agency.
One of Chris’ eyes has closed, and he only has limited use of his hands and arms. When I go down the stairs and into the room he’s sitting up in bed, the carer taking a bowl of porridge away from him as he struggles to clear his throat from the last spoonful. After a few minutes the coughing eases enough for him to gasp hello.
‘Are you having more difficulty swallowing?’
He nods.
‘I’m sorry to hear it. I’ve come to see how I can help this morning.’
Chris shakes his head and looks at Rachel.
‘I think Chris wants to stay in bed today,’ she says. ‘I’ve just checked his pads and they’re clean, so that’s okay. And he’s had a wash.’
‘Great. Well – if you’re sure there’s nothing I can do, I’ll crack on.’
I give his hand a squeeze and then head back upstairs. Sarah says goodbye at the door.

*

A few days later I hear from the others that Chris has died. We’ve all dealt with terminal patients before, and although their deaths are always sad, on the whole they tend to be older, coming to the end of a long and chronic illness. This was a whole new order of death, though. I can’t imagine how difficult it must have been for him, and the thought of his last few hours fills me with horror. I know there were anticipatory meds to hand, but who gave them to him? What effect did they have? Did he become unconscious as his breathing deteriorated and his SATS dropped? If the meds are for pain, would they be given for anxiety as he became hypoxic – because of course the opiate effect would be to depress his breathing even further and hasten his death. I want to ask all these questions frankly of someone, but of course there’s no time. We have many other patients to attend to, many more than we can handle. And the fact that our proportion of palliative patients is increasing is a sign of the difficulties being experience by specialist teams across the board. Chris becomes a footnote, a war-story to be shared amongst the carers and clinicians back at the hospital.

I just wish there was more time.

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