JUE POST 4 - I feel guilty because...

Like New Year’s Day, once the party was over, it felt like an anticlimax. Isn’t she supposed to die now? I continued to muddle through, getting to work somehow, getting the shopping, holding it all together - but for how much longer. I became obsessive in my hunt for answers – when, when was she going to die? I can tell you all about the signs and symptoms of death - the pre-active and active phases – I checked her nail beds for signs of oxygen starvation. So desperate for it to come to an end I was almost pleased when Dad phoned to say she was severely short of breath and the District Nurse had called an ambulance. For all her brave talk she was no more ready to die than when she had been told of the terminal prognosis five years before.

I agreed to meet her at the hospital, didn’t even bother asking dad why he wouldn’t go with her– but asked him to be at mine when the kids got home.  Arriving before her, I made my way to the admissions unit. I heard her coming. Not that short of breath then. She was giving instructions to the ambulance guys to be more careful, to sort out the oxygen tubing etc.

You can’t take the nurse out of the patient.

She demanded a chest x-ray, convinced she had fluid in her lungs, convinced they could drain it and make her feel better. I see now what a desperate move that was, at the time all I could feel was anger that she had dragged me away from work once more, but was no nearer to dying. She was far too argumentative.

She sat on the hard trolley; I sat next to her on a slippy chair and marked A level essays, unable to talk to her, in case I revealed my fury.  And then the fucking syringe driver stopped working and she went into panic mode.

“Juey, it’s stopped flashing, oh shit, how long’s it not been working for?”

I stood up and took it into my hands.

 “Don’t touch it! You’ll make it worse!”

 “Maybe the batteries have come loose.” I shook it, pressed the button, nothing.

 “Get the nurse, hurry.” She pressed the call bell. “Leave it alone and get the nurse.” And then she started to

moan. I looked towards the nurses’ station, there was no one there.

 “It’ll be all right Pandy,” I said, and took hold of her hand.

 “Get the fucking nurse,” she replied through gritted teeth, and shoved my hand away.

The woman opposite began to climb out of bed, calling to someone, crying for something. I walked towards the nurses’ station and caught the eye of a doctor. “My sister, she needs help, her syringe driver’s not working.”

 “We’re extremely busy, someone will be with her shortly.”

“No, you don’t understand, she’s on huge doses of alfentinil, she’ll be in agony in minutes.”

“Your sister is not the only one that needs attention – ah, Kathy, this lady is concerned about her sisters syringe driver; what bay?”

“I don’t know. That one, there.” I point, I can see Andrea curled up in a ball, her hands grabbing the sheets.

The nurse nods. “I’ll be there as soon as I can.”

“No, you don’t understand, it has to be now, she’s dying, she has an extremely painful nerve cancer, she needs painkillers now!” I knew I was getting angry, but I couldn’t go back to her without help.

The nurse shook her head at me. “There’s no need to shout.

We returned to her bed and the nurse told her to quieten down. Andrea fixed her with her blue eyes. “Then get this thing working.”

The nurse fumbled with the machine “Might need a new battery.”

“Yes, have you got one?” I said.

“I’ll have to send a porter to the stores.”

Andrea began to weep.

“Can you give her shot of diamorphine in the meantime?”

“She’s not been seen by the doctor yet, it’s not written up and isn’t she in for shortness of breath – diamorphine is not a good idea.”

I knew this had been a fucking mistake – you don’t go to a hospital when you are dying, it is the last place you want to be. And then a Ward Sister walked over in a dark blue uniform and an expression that told me she understood. She called the doctor and asked me how much diamorphine.

“60-90mg.”

“You’re not serious?”

“That’s what she’s been having at home.”

She got 30mg. And then the porters came and wheeled her to X-ray and I followed, wondering why we were doing this.

Two hours later, battery changed, Andrea had fallen into a fretful sleep, twitching and moaning, saying things that made no sense, and finally the doctor returned. I could see in his face, he didn’t know what to say. I already knew the X-ray would show her R lung taken over by tumour (when she breathed in only the L side inflated) I hadn’t told her this.

He began to whisper.

“Wait,” I said, and turned to wake Andrea.

“There’s no need,” he mumbled.

“There’s every need,” I replied. I had no strength left to fight. I had fought for her for two months and it finally hit me that no one really knew what to do – we were all helpless in the face of death.

“Well?” she said, adjusting the Oxygen mask – her lips were dry, white crusts at the corners. “Is it a pleural effusion?” (fluid in the lung.)

The doctor sorted of nodded.

“Well you can drain it then,” she said, folding her arms. “Will you do it here, or admit me?”

The doctor’s mouth opened and then closed, his discomfort was palpable and I imagined the argument there must have been about who would get this task. He was a junior doctor. I felt sorry for the poor bastard; Andrea used to eat junior Doctors for lunch.

“I don’t think it’s drainable,” I said, trying to help him out.

“Of course it is.” She smiled at the doctor. “My sister used to be a nurse, but she’s forgotten a lot of it.”

I looked at him; willed him to tell her the truth so I could go back home and she could carry on with dying.

“It’s not that simple.” He looked anywhere but at her. “The fluid is in little pockets, sort of diffused."

“But you can drain some of it, can’t you...?” she persisted.

“I think what the doctor is saying is that it’s more tumour than fluid,” I said.

He nodded fast. “Yes, it’s just not going to make any difference – I’ve contacted the Macmillan team, someone should be down to sort out some oxygen for home.”

“But I know it’s an effusion,” she said into the air, defeat deflating her.

“I’m sorry,” he said and then vanished, leaving me to pick up the pieces. But I had no energy to talk, nothing to say that would make a blind bit of difference. I sank into the chair and continued to mark the essays. She lay staring at the ceiling.

Tea time came and they brought her a tray of food. I sat and watched her eat, thinking about the kids at home, waiting for their dinner. No one offered me anything.

Finally, after dark, the MacMillan nurse arrived with forms to fill in for the delivery of oxygen. She made some calls, promised it would be there when we get home. She didn’t have much else to say either – no one did. I was desperate to get out of there. I wanted home; I wanted John, a drink, a fag. I didn’t want to think.

"Right let’s get you home,” I said as cheerily as possible.

“We have to wait to be discharged by the doctor."

I looked around; the admissions unit was packed.“Why?”

She didn’t have an answer, but then I realised we were trapped anyway. She couldn’t walk and we had no wheelchair. I saw a porter and I got up and ran to him.

“I need a wheelchair to get my sister home.”

"Don’t worry, I’ll sort it,” he said, and disappeared into a side room and backed out moments later with a wheelchair. He helped me to get Andrea into it.

"But I need to be discharged,” she said.

"I’ve done that,” I lied.

He wheeled her outside and I retrieved the car. He helped her in, she was breathing heavily. Rush hour traffic streamed in lights past the hospital – it was dark and foggy and I was so, so tired.

We drove in silence, nose to tail for 12 miles, and then out of nowhere I caught a glimpse of blond in the headlight and then bam, something shuddered into car. I kept hold of the steering wheel and carried on, sparks flying out in front, until I found a safe place to pull over.

“What’s happened,” Andrea said, “what have we hit?”

I got out and saw blood across the bonnet, the wheel arch pushed into the tyre, the number plate touching the ground. I bent into the lights and saw hair stuck to the grill – coarse hair, not human.

I got back in, my hands shaking. “I think it was a deer*.”

Andrea soothed me, told me I did brilliantly and she reminded me of my big sister, the one that wasn’t dying.

*It was a deer; a Muntjack. They are a nuisance around here. Initially bred on the Woburn estate, they escaped into the wild – the size of a Labrador. The next day, I saw it, legs akimbo, by the side of the road.  It cost £1000 to fix the damage; I lost five years no claims bonus, and the most galling part, we should never have gone to the hospital in the first place.