Kathryn Mannix - With the End in Mind

‘So, what’s the deal, doc?’ she said next. ‘I feel GREAT today! I wanna sing and dance and get outta this bloody flat!’ Casting her gaze around the room, she sighed heavily. ‘It’s like a pigsty in here. Needs a good cleaning. Amy! AMY!!!’ she moved her gaze to the ceiling, brown with cigarette smoke, as though to look at Amy, who was presumably upstairs.

A teenage girl in pyjamas appeared at the living-room door.

‘Mam?’ she asked. ‘Mam, what’s all the noise for?’ Then, catching sight of me, she whispered, ‘Who’s this? Where’s Nan?’

‘Nan’s gone for ciggies. This is the doctor. This place needs cleaning. Get the Hoover over it, will you?’

Amy rolled her teenage eyes, said, ‘Yeah, in a mo,’ and dis­­appeared back up the stairs just as her grandmother reappeared through the front door. Lighting two cigarettes at once, Nan held one out to Holly then stumped through to the kitchen, saying, ‘I’ll get the kettle on. Tea, doctor? Biscuit?’

Seated on the sofa, I watched Holly continue her interminable movements. I recognised this pattern. I just needed a bit more information.

‘Holly, are you feeling restless?’ I asked.

She regarded me solemnly, exhaled her smoke, and then said, ‘Look, are you gonna ask a load of questions? Cos, not to be rude or anything, I’ve already done that with the first doctor. So it’s like this – yes, I can’t lie still, can’t get to sleep, can’t get the tunes out of my head. OK? Got the idea?’

Nan appeared with a tray of mugs filled with tea, a plate of biscuits and thickly sliced fruitcake. I have come to know such hospitality is a custom along the riverside.

‘Holly’s not usually so grumpy,’ said Nan. ‘I think she’s tired. None of us got any sleep last night.’

‘When would you say the restlessness started?’ I asked. The women looked at each other to consider.

‘It’s really since you stopped being so sick,’ said Nan.

Holly agreed. ‘That puking was doing my head in. I couldn’t keep nothing down. But now I don’t feel sick I feel really kind of energetic.’

It seemed bizarre that this waif, glowing with the lemon tinge of kidney failure, her life ebbing like a fading echo, could describe herself as energetic. I asked her to hold her arms out in front of her and to close her eyes. Her arms twisted and danced before her, and she bounced her legs on the balls of her feet. When I took her hand and slowly flexed her arm at the elbow, I could feel the muscles tensing and releasing as though the joint was moved by cogwheels. Her gaze was unblinking in her doll-like face.

‘When did the sickness stop?’ I asked, although I already knew the answer: the day the nurses gave her a syringe-driver with anti-sickness medication for her kidney failure. The same day the restlessness began. Because the drugs that were stopping her nausea were also giving her this sense of driven restlessness: akathisia, or ‘inability to sit’. She was perceiving the sense of drivenness as ‘kind of energetic’, and it was this that had suddenly caused her to get out of bed and want to move around.

Here’s a dilemma. This young mother is close to the end of her life. Her kidney failure is so severe that many people would be unconscious at this stage, but the drug that has stopped her nausea and vomiting is also causing restlessness and a desire to get out and about. Her legs don’t have the strength to hold her up, and she is in a fifth-floor flat. I don’t want to stop the anti-sickness drug: her nausea would return very quickly. Yet she will exhaust her meagre energy reserves if she keeps pacing and dancing and cannot get some sleep.

There is a drug, an injection, that will reverse this restlessness and ceaseless drive to movement, without losing control of her nausea. We keep it in the hospice, and I can go back to get it. But in the meantime Holly is stir crazy, like a caged animal. How can we assuage her desire to be on the move?

‘Do you have a wheelchair?’ I ask. No, Holly was well enough to get up and down the stairs until two weeks ago. Then the pain kept her indoors. Then when the pain was better she was exhausted by her nausea.

‘Sally downstairs has got a wheelchair,’ chimes a voice from the doorway. Amy has been listening in. She is dressed now, in black tights and a neon-yellow T-shirt, stripy yellow-and-black leg-warmers and an army beret. ‘We can borrow it. Where are you taking her?’

‘I’m not taking her anywhere. I’m going back to the hospice to get another medicine to help with this restlessness. But while she’s so restless and desperate to get out, I wondered if you’d like to take her out and around the shopping arcade down the road. Just for a change of scenery.’

Nan looks startled. Amy shouts, ‘I’m going to ask Sally!’ and leaves. Holly looks gratefully at me, and says, ‘Well, I never expected that ! Thanks, doc. They keep mollycoddling me, and getting out will be brilliant …’

After a couple of minutes, Amy taps on the window. She is on the balcony corridor with a wheelchair and two huge men in black leather jackets.

‘Tony and Barry will carry her down, and we’ll go round the shops!’ she exclaims gleefully.

‘Wait – there’s no lift?’ I ask, but there’s no point – the seed is sown, the wheelchair borrowed, and Nan is already on the phone to Holly’s sister to arrange to meet her at the shops. And I’m not about to contradict Tony and Barry, who are Sally Downstairs’s sons. They are on a mission. And they are massive – only their enthusiastic smiles are wider than their huge shoulders.

I head back to the hospice, and phone the leader. I describe the scenario – the petite patient so frail, with advanced kidney failure; weaker day by day until this sudden flush of ‘false energy’ caused by the anti-sickness drug; my diagnosis of akathisia and my plan to treat it. After asking a few questions he seems satisfied by my examination and conclusions. He asks whether I’d like him to come with me to give the antidote and make the next plans, and although I want to be able to cope on my own, a mental picture of the smoke-stained room, the tiny dancing patient and the gigantic, leather-clad neighbours makes me glad to accept the offer. He drives to the hospice while the nurses help me to gather the drugs and equipment I will need.

The second trip to the riverside feels different. The mist has cleared away, and the afternoon is lengthening into early evening. Nightingale Gardens is in sunshine as we park outside, and there seems to be a party going on outside one of the ground-floor flats. Looking closer, I recognise Barry and Tony, the neon glow of Amy’s T-shirt, and Holly in the wheelchair wearing a fluffy bright pink dressing gown and a knitted hat. Nan has her back to us in the NCB donkey jacket, and an older woman whom I take to be Sally Downstairs is sitting in an armchair on the pavement. Cans of beer are being drunk; there is laughter; people come and go from the flat. When the leader and I approach, we are waved over and greeted like family.

‘Here’s the lass what sent us to the shops!’ shouts Holly, and shows me her newly manicured fingernails, a treat from her sister.

‘Bugger of a job keeping her bloody hands still!’ laughs Nan.

They have had a wonderful trip out: Holly has loved meeting and greeting friends and neighbours she has not seen for weeks, and all have admired her grit in getting out. She has bought a massive carton of cigarettes, a crate of beer and lots of crisps, and these are now being shared at the impromptu pavement party.

I explain that we need to check her syringe-driver and then give her a small dose of the antidote, to be sure it doesn’t disagree with her before giving a larger dose to last overnight. We need to go up to her flat. Barry and Tony lift the wheelchair as easily as though it is a shopping bag, and carry Holly upstairs to the fifth-floor landing. Nan lets us in, and goes to put the kettle on; Holly’s sister and Amy follow. I introduce the leader, and he examines Holly’s arm movements to satisfy himself about the diagnosis. Tea mugs are produced for the workers, everyone else continues to drink beer. Holly knows she must stick to small volumes of fluids, so she drinks her beer from a dainty china teacup.