Sugar

Can I have some brown sugar for my porridge pls. There are two texts waiting for me on my phone this morning when I wake. The one about sugar was at 8.08. In a separate message, 7.27, he asks: how is snow. No question mark.
All of this is good – he’s considering looking after himself, thinking about others too. Outside, I watch two gulls riding the thermals above the frosted fields, a crow outlined perfectly against a pale sky. There’s real weather up here in Anglesey – over the mountains, the estuary, the farmland, it is bright and clear in places, snow blurred and dark in others.
Mark – who was asked for ID while buying alcohol in the Premiere Shop last night – is still asleep on the sofa. I half-envy his innocence. Between the Roland Barthes and the Raymond Carver, there’s an empty bottle of Teachers, a scraped out pot of hummus, a chunk of stilton cheese and the cooking wine’s been drunk. Snagged between the open Thesaurus and an AL Kennedy, there’s an empty bread packet, crumbs gathered in the folds of the pages.
In the kitchen, the kettle boils, bacon fries on the range. I wonder if there's any porridge.

Eating

Dad’s sent me a text message. It reads - BIN eating. I want to make a joke in my reply, but I resist, knowing that this might make him confused. Instead, I tell him that it is snowing here, that the owls are crying into the night, that the stars are full in the sky.
The full weight of meaning has started to hit us all, the awareness that he is dying, really dying, dying forever, that soon he will no longer be among us. We don’t know how long that might be, still nobody has told us. Yesterday he held mum’s hand and cast his eyes to the floor, thanking her for all she has done for him. We are all more distressed than we can articulate. As I hugged him and left him in the nostalgia of the community hospital, I told him I loved him and he did not seem able to look at me. I feel pathetic, weak, straining at the effort of containing my rage, my desolation, my powerlessness. There is no consolation and the awareness of this cancer that has invaded all of our lives lingers always. I find myself reluctant to chase the consultant again for the information he has not yet told us, feeling unable to face it. Whenever I write of it, it feels empty, cliché’d, weak, I have no language to speak in, no words to articulate the memories, the thoughts, the imaginings. Each time I try to imagine what he might be feeling, I retreat from the attempt, entirely unable to venture there.

Return

My brother speaks as if Dad is in swift decline. We talk about whether or not it is better for him to go quickly, not having to endure a hideous death, the hospitals and busybodies milling all around him. He hates it. Yesterday, my brother had warned him that he'd have to go back if he didn't eat and Dad looked him in the eye and told him he had no idea how horrible his experience on that ward had been. Now he's back there again, readmitted after his chemo pre-assessment when they decided he was too sick to be at home. They hadn't realised he lived alone, even though it was written in BLOCK CAPITALS on the front page of his file. The consultant in the acute unit had shown me himself.
'But if you were here, you'd just be getting annoyed with him. He won't eat. Yesterday I sat by his bed for an hour and a half trying to get him to eat some soup and he wouldn't. Afterwards I switched off all the lights and locked the door. He can't look after himself.'
I don't know what to do for the best. Here I am, at home in London, feeling so far away, knowing that if I was there I'd be hanging about in someone else's home, someone else's life, waiting for visiting hours, waiting for news, worrying about pressurizing my dad with too much fuss, worrying about not being there when he needs us. My brother tells me that I should talk to the doctors, 'you know what to say, what questions to ask.' I am appalled at the lack of information, the not-knowing, the impossibility of understanding what the right thing is to do when you don't know what it is you are facing. What are the scenarios? What can we expect? Why the hell has no one told us these things? I speak to a good friend on the phone, she tells me that she feels the same, her Grandpa in and out of hospital with dementia.
I will go tomorrow night after work. Mum tells me she feels pulled in so many directions. 'I've got to keep him sweet,' she says of her husband, a belligerent asshole whom we all dislike. My brother tells me he thinks she still holds a flame for dad. I wonder if that's just his fantasy. I wonder if mum just feels guilt. She left him after all, said the other day she should've stopped him drinking when there was still a chance. I phone Gran, she wishes there was something she could do. I tell her to give Mum love and support, be there for her, let her cry down the phone. 'She's putting on a brave face for us, you know.' She tells me Dad should go into a hospice. I say he's not there yet, please - let's take it one step at a time.

Lungs

'I could have kissed the man, I'm telling you,' Dad tells me on his mobile phone, calling me from his bedside. 'I'm just getting my things together.'
He's been discharged from the hospital. This is unexpected - they told us we'd have to wait until Monday, soonest. But the doctor has passed by on his rounds and become our new hero. I can hear the energy in Dad's voice. No pointless wait on the silent ward of Bay 2 men, no more having to endure the thick, dry cakes of mashed potato, the neglect, the lack of eye contact. I drive along the banks of the churning Thames, just arrived in London, and I am lifted, elated by the news. I pull in to make some calls, unable to concentrate on driving and speaking at the same time. This is a momentous win. Such small victories are, I guess, what will shape our landscape in the coming weeks and months.
I call Dad the following day and hear the plump, confident sounds of jazz playing in the background.
'I need to take a day off from it all,' Dad says and I wonder how to find the balance between giving him space and meeting his needs. My brother tells me not to nag. I picture Dad propped up on the sofa, surrounded by music and blankets and - perhaps - memories. 'It's Radio 3 - a very interesting show,' he tells me, still sounding like his mouth is stuffed with cotton wool.
The family lungs collectively exhale as we welcome this stoppage time. I step like a stranger back into my own life. It's only been a fortnight but it feels like time's collapsed and I've been knocked over by a very large iron block, storeys high, swinging on a cartoon rope. I catch myself staring at nothing and feel guilty for not being more efficient and strong, a mighty planner of care and support.
I am surrounded by the love of friends. I sleep well cradled in M's arms, then fitfully in a cold bed as I'm visited by terrors that startle me awake. Can I hold his hand when he's sick in a bucket? Can I help him to sit up and eat when all he wants to do is lie and sleep? Can I wash him when he can no longer wash himself? Can I talk to him about funerals and coffins, hospices and the arrangement of his affairs? Can I really help him die?

Timing

'Without chemo - 12 to 18 months,' he says. 'That will obviously be extended with the chemo. But you must double check with the oncologist.'
I feel like clutching his arm. This is good news in the scheme of things. I had pretended to go off to the loo, not being able to bear asking the question in front of Dad.
'About fourteen, fifteen years old that doctor, d'you reckon Juliette?' Dad had quipped afterwards when my brother arrived and we were relaying the news.
'Twelve maybe.' I'd replied.
He was young indeed, barely even shaving it seemed. He had drawn around the curtain and sat on the blue plastic chair opposite me, carefully choosing the words he had learnt at medical school to make Dad feel included, like we weren't discussing him alone.
When I'd arrived earlier, Dad said 'it's not great news - you'd better ask the doctor for the details,' shunting away his obligations.
The young doctor gulped, 'I'm sorry,' he says.
'It's OK, it's what I expected.' I check myself, perhaps Dad had't realised.
The tumour is large, probably been there for years undetected, symptomless. And now it's spread and there's nothing we can do, only slow its inevitable progress. I ask the doctor about care - 'he'll get what he needs' - and about work - 'most people choose not to work with this diagnosis. They want to make the most of the time that they've got.' He falters on those last few words as if he's made a false start in a race. I want to reassure him, tell him he's doing OK. The doctor looks at me, 'people get breathless, you know.' I nod.
'I want to get back into the fresh air,' says Dad, smoothing his eyebrows down as he speaks. The doctor tries out an understanding nod.
'We'll see,' I say.
After the doctor has left, I ask Dad how he feels.
'I've accepted it,' the open palm of his hand sweeps through the air. 'If I've got to go, I've got to go. I'd rather have a little bit longer, but there's nothing I can do about it.'
I gulp now, digging the half moon of my thumbnail hard into my fingertip.
'I'd like to make it to Christmas.'
'Of course you will.'
'I've got a lot of preparations to do.'
'It's OK, I'll help you.'
'Really?'
'Of course I will. Of course.'

Glass

Leaves the colour of Coleman's English Mustard shake from the trees, the sky is reflected in puddled fields. As I make the journey from London to Cheltenham the sun sets a pale yellow, golding to amber. Above the limes and sycamores, a group of starlings circle a roundabout. The clouds clear, tumbling to rocks that mountain above the horizon.
Cyclists in bright coats and helmets wait at traffic lights. Our patience has glassed to a thin pane of sand, ash and the limestone of these hills, worn thin and brittle with waiting. I pass through road works and speed limits, past brown heritage signposts, gravel scattered across chevrons. Red hawthorn startles from the hedgerow and a brown muck of seeds clutch at the ends of bare branches.
As soon as I arrive I demand information, an update, proper care and attention, in a reasonable, solid voice. A crescent moon rises and a stunted jet stream chalks the sky.
We are rewarded – a tiny jump of light in all this darkness. He's ready to be discharged, they say, when the team have made up their treatment plan. Dad's eyes flare and he makes a play of bolting for the door.
'What? Can I go now?'
I speak softly and place my hand on his arm.
Afterwards we play Scrabble, content with this small scrap of news. Saint. Quit. Oxen. Byes. He tells me about smoking, 'that's got to go,' and I wonder what other resolutions he's made. Though his time may be short, he isn't ready just yet.

Guts

Cancer. Lower gut – spread to liver and lungs. Gut: what does that mean? What kind of word is that. Is that colon, is that intestine? Makes him sound like livestock; insides that can be used to string instruments. I haven't looked it up. This morning I awoke wondering whether they had told us on Friday and then given us the weekend to get used to it before dropping the next bomb of prognosis. It's bad, there's no doubt about that – no cure, only treatment, if he gets that far. He is frustrated, bored, becoming cranky, while the white haired men all around him hang their shiny purple legs off the beds and wheeze into ventilators.
'No eye contact,' he keeps telling me about the staff. 'Just come and take my blood pressure, my temperature, then go away.' Nobody much, it seems, speaks to him for hours and hours.
From the window he has a view of the college playing fields, rugby matches and the car park. Fireworks bloom on the black winter sky. Outside, it's raining and very very cold.

Guiting

'Everybody's bloody dead in here,' he says to me down the phone.
'Are you sure you're supposed to have your mobile on?,' I ask.
'Nobody's up, it doesn't matter. They can come and tell me not to if they bloody want to.'
He must be feeling better, but he still finds it hard to speak - the severe dehydration that has made his tongue bright red traps the words in his mouth and sticks his lips to his teeth.
'A little jaunt out and about, up and down the corridor - that helps.' He seemed to be looking forward to going for his CT scan - a change of scene. He's been moved overnight to the Guiting Ward - specialists in respiratory disorders. That's why everyone's so quiet - they've all got tubes shoved down their throats. In the background I can hear beeps and gravely serious sounding machines. I'm sure the mobile signal can't be good for them - like when you redirect air traffic by making a call on a plane. He's not in there for breathing problems, but as an acute general patient. We seem to be looking at Hodgkinsons now, or perhaps nothing at all. We wait again and scare ourselves stupid by looking up diseases and self-diagnosing on the internet.
It is now quarter to nine.
'Have you finished your drink yet?' I ask of the clear tube of 'contrast' he has to have to light up his insides for the scan.
'I'm only half way through,' he chuckles.
'Get a bloody move on - they'll be picking you up anytime soon. You need to have that down you well before or the scan won't work.'
He drinks.
'Are you worried?' I ask.
'Nothing to be worried about,' he says.

Waiting.

All the leaves are down. A great wind swept through the Wolds and left the landscape grey, the sky a flat white. Outside, on the pavement below, a woman speeds by on a burgundy mobility scooter in a green wig. She is smiling broadly.
Dr Hauser speaks to me in impenetrable words, his European accent hinting at American education. We are in a world of consultants and hospitals, scans and drips, an elderly man with dementia shouting from the bed next door to dad's - 'nurse, nurse I want a drink,' 'where are my family?' He gets up periodically, puts on his black padded coat that is covered with vomit and food, fragrant with dried urine, and heads for the door with his white plastic sack full of belongings.
Dad lapses in and out of consciousness, his mouth dry, cracked and immobile. He comes to - focuses for a moment, says a few words, laughs maybe - and then slips away again. The hypercalcemia is making him confused. Dr Hauser tells me he may be hallucinating. Along the underside of his forearm, his shirt is stained with blood. The drip was inserted as soon as he entered the Emergency room - no change of clothes since Monday, no wash, no shower. Yesterday I cleaned the dried blood from his hands.

November 2

The heel of my hand pressed firmly on the window frame, fixed closed with fresh white paint. The smell of ozone, real fresh air - the lowing of cows in the meadows that run abreast of the River Churn over the road and the allotments below. The leaves whisked away from the branches, yellowed and expired. Strained engines, racing at the force of trainered feet on the accelerators of hatchback cars.
Tonight I visited my dad in hospital for the first time. Cheltenham General Acute Ward C. Admitted last night, he was thin, the blue of his eyes startling against the line of his black lashes. I had not noticed that before. We are waiting for a diagnosis though none of us have said as much in his presence. It feels like the end of a wasted life, a lonely pointless life. There was something childlike about his face tonight. A man who lives alone, dines alone, drinks alone, works alone, thrust into the official world of the hospital with its ECGs, saline drips, busy bedsides, privacy curtains and nurses occupied with drugs and charts and the manhandling of equipment to life preserve. All this sudden activity in a life so permanently quiet.