And should this nursing home be what we are to do, should our options be so curtailed, well then, we will track down the one place in the whole of the city to suit us. A folk tale like I told you: a fairy story. This is probably the only day on which I know that I am in no condition to drive. I do not say this to Vivien.
We are at the limit of knowing what to do. A terrain where my guess seems as good as theirs is at such high altitude that I am deprived of oxygen. There is no system here. Following the case conference a young ward doctor sweetly gives me the name of a nursing home. He gets the address off the Internet and writes it down on a bit of paper in front of me. It’s the one he knows (… and the others, the ones more suitable for a young family, the ones suitable for someone with Tom’s complex medical needs, or the ones not exclusively for geriatrics? … so many questions, but this time I am silent). We decide to target this one first off but see it together with another picked at random on the Internet for comparison. You’d do that if you were buying a fridge or a car or a new hi-fi. We are choosing a place to send my husband away from his family to die. I hold the piece of lined jotter paper in my hand like a black note in a story by M. R. James. So well meant, it is terrifying. In the car I look at it again. It says, There is no system for you. You are falling as well as dying.
Home One is nearby, a big plus. The ladies are warm and kind to two enquirers pitching up. They are proud of their place and want to sell it to us. I like them. I believe in them. I like the good feeling they give off: of love for their patients, friendliness, adaptability. They will make it work for us! Together we can do it! They dole out attention and humour. Guests trot by with little dogs to visit relatives.
The building is a single storey overshadowed by high flats and its corridors and corners get no light. It must have been built before the difference sunlight makes to the brain was fully recognised. The edges of everything are set too close to the edges of everything else. All verticals are bumped, bashed, scraped, eroded, as if minutely chewed away from the inside. The rooms are tiny, small as can be, but there is one, a strange sort of double, bigger than the others, that I am led to understand is available to those who can pay a supplement. I inhabit it in my imagination in an instant. I am expert at this kind of makeover. Yes, we could do this and this, bring a lamp in here, a bed for Ev, take that out, paint this, change the rug. They make encouraging noises. They are sympathetic, keen to help.
The building fronts on to a car park. Architects call it hard landscaping but those who are not architects have no name for it. It is set so low that the windows offer no solace: not a single tree, no promise of sky. I have a vision of carrying Ev screaming into the place by force. There are no doctors on the premises. This is of course standard with all nursing homes. Why are we here again? My lack of belief in what we are doing muffles my thinking. It disables me. Tom’s body fails in all sorts of complex ways all the time, from the banal – immobility – to the extreme – the volcanic excrescence growing above his ear. These different ways of failing are not set to get better. Already he sits rapturously at the centre of a tight tornado of medical attention, soaking all of it up, day and night.
The second, Home Two, is fancier. It resembles a middle-market hotel you might end up in if you were passing through a town and didn’t know anyone. I have stayed in such a place on the outskirts of Leeds. It has valances, complicated curtains and too much furniture in every room. Here the ladies don’t seem to mind so much whether we come or not. The furnishings are in the international, institutional colour you see a lot of, a rusty-red yellowish brown. They call it sienna. Dried blood is what it is. Someone should tell them. This home is much bigger and the staff more impersonal but it looks well run and trim with a tight and shapely designer garden they are very proud of. There is more light and personality to the spaces but the baseline noise throughout is channel-war. The everlasting death-battle of daytime television plays out at a volume set for all to hear. It is violently hot. The residents, as in Home One, are uniformly very old. The same medical care conditions apply. No doctors.
What will happen to Tom when he has pain at the moment he has it in one of these rooms painted in shades of old blood? What happens when he can’t move his arm to operate the call button and no one can hear him over the television? I cannot live with him here. Ev cannot live with him here. I have another vision, this time of me, being led weeping, inconsolable, out of the place.
To them we must appear like regular folk making a decision. To see us, you would think that we were weighing things up, having a choice. Far away from all this but nearer to me than any of it is Tom, my near-wordless, supremely articulate companion, my brain-damaged, highly intelligent dear-love, still so at home in his personhood and his drifting body. My husband who knows that he is dying, his intelligence fully stimulated, awake and improvising all the while fresh and exotic ways of being in the world with us. I am stunned. We get into the car and drive.
I am slow, but I start to understand the day’s work as a piece of administrative filler. It is a formality. No hospital stay can be open-ended. The EDD, the Estimated Discharge Date box on the whiteboard, though it may be wiped and re-scrawled many times over, needs a date at any given moment or questions will be asked. A plan is forming. It is to do nothing. None of this will happen. I won’t let it. It is wholly inappropriate for us. Why they won’t acknowledge this to me is a puzzle but not my problem, though I can see that I am theirs. We are in a position of strength. We cannot be moved from our square metres of ward by force.
So far I have told Tom everything that happens. But I never recount this day to him. It is a secret I do not break. I do not speak to him about Home One and Home Two and I hold my fire about the other place, for slipped between these two experiences was another: a digression on the road.
On the drive from One to Two I saw a street sign, so small I hadn’t noticed it before. Hospice: pointing left. My path went to the right. I should have gone to the right. Without thinking I signalled left. Friends had told me about this place. Let’s take a look. I slid the car round and into a waiting bay. There was a gravel path and a door open to a reception area in a blue-grey colour with tall windows behind backing on to a lawn. We did not go further than the reception. No one stopped us but we halted and stood there for a bit, looking about. I noticed my breathing: acclimatising, checking in. We did not speak.
The receptionist was on the telephone. On the desk was a spray of sharp Christmas grasses edged with white. She finished her call.
Can I help you?
How can we come here? I asked her.
…
I am looking for somewhere where my husband can die.
I leaned in, elbows on her desk, eager to edit the story down to bullet points so she might process it but trying not to overwhelm her. It didn’t work. Halfway through, a man in a white coat appeared and she hailed him and segued off in the same motion, leaving us together. So I began again with him, this time more slowly. I gathered Vivien to me. The three of us did not leave the desk.
I never learned this doctor’s name. But when I spoke he nodded. I told him about our task that day and how I despaired of it. I told him about the note on torn paper. When he spoke we nodded. He told us that we couldn’t just walk in: he spoke about referrals, procedures and time-scales, about Primary Care Trusts and funding. He asked about our trajectory, where we were, who was looking after us and what had happened so far. Yes. Yes. I said. OK. I see. And how does that work? Yes. OK. I understand. Right. Yes.
The conversation took ten minutes. Thank you. The three of us shook hands. We did not ask to look round. We got into the car.
Back at the hospital I put my plan in place. I say nothing and I am not asked. I take no more initiatives. I do not pester anyone for names of nursing homes or try to find any more houses. I do not ask for more advice and interestingly none is given. I just let it go. It is sweet. Ten days pass and I am passive on the subject of the future. We live, Tom in the h
ospital and me and Ev outside it with the daily runs between joining us all together. We are surrounded by a galaxy of nurses while the orbit of friends around us turns and turns. I am much happier.
After ten days we know that the tumour is advancing. Avastin is not working. Things are shifting, turning, widening. Each stage is marked and definable yet without a clear edge to guide us. There is nothing at all to grab hold of.
It is mid-morning and I get a phone call from Dr B.
How are you getting on with nursing homes?
He is not going into a nursing home.
What do you want to do?
I want to go to the hospice, to Trinity.
Then that is what we will set in motion.
Can I tell him that is what we will do?
That is what we will do.
3.8
Pain. He is in pain. Sub-cut morphine. We are adrift, stranded on an ice floe until someone rescues us and brings us back. I cannot write on pain so pain does not get written down. It is blank. The nerveless nature of the brain means the interludes of pain have been mercifully short and recent but for their duration I have nothing to say. They lie in the white spaces on the page.
This is where Tom’s lack of words bites hardest. When he can only indicate what is wrong and have us guess at its extent and urgency and guess what we can do to alleviate it. Pain takes up various positions and attitudes. There is the pain of not being in control of the body: to live as weight and mass and be moved not under your own volition. This is exhausting. There is local, temporal discomfort; maybe a limb is in the wrong position or a cannula has been pulled too tight and snags across the skin. When we discover this kind of cause we feel elated. So easily remedied! Only this! We almost dismiss it. But it is pain. There is hurt from the cancer visible since it has become a wound apparent in the flesh. There is mental distress; the thought that perhaps the pain might not go away, or not go away soon enough, then what next? Sitting upright for too long is agony. There is extreme fatigue from living in a mind stretched to the horizons of being. It is all pain. Pain throws many shapes.
We go down to the river in the wheelchair with Ev and a friend. Tom is in pain, but he had set the plan in motion well before the episode began and it’s already taken two hours to organise to this point so he wants it to go ahead. I don’t want to and we squabble. Rightly or wrongly I tend not to win. So we set out, two women, a young child and a man in a wheelchair. By the time we get to the river’s edge every kerb and cobble is such an assault on the suspension of the chair and the integrity of the body that he wants to come back. So we come back. The damp air is treacherous on our faces like a wet towel pulled tight over our mouths. The city is pallid, fogged, shut down.
Tom has pneumonia again. This happens. To move is to operate the machine and to lie still courts infection and the capitulation of the lungs. He gathers his resources to fight and sinks into himself. Highend antibiotics against a menagerie of ills are prescribed. Physically he is very strong and I believe that only the tumour will beat him. Never for a moment do I think he will not win this one. I am not worried. This is a local fight. His drugs calibration has become acute. He is monitored hour by hour.
3.9
But Dad’s not dead yet, he’s still here.
We are sprung. Free. It is visionary as Blake: a sudden epiphany in the air above Lambeth. A bright motif, a shift, a star, a shape etched deep, historic emblem blazing within our narrow section of time. This is how it comes about.
In the hospital, for days nothing happens save the progress of disease and a barely controlled, gargantuan social life. Bureaucracy is at an impasse. Around Tom’s care a constipated mass of people and agencies strain against each other, each trying to pass their own stool and execute their fragment of the whole but the whole then jamming under the impact of conflicting agendas to stall any decision. It is a confined space. Stasis. Pile-up. Uncertainty. Days pass.
In the confined space, vast now, is Tom. He casts a fierce light. For his friends he is a magnet for activity and action. Around his bed there is no more place to sit. He is not an easy person to place. I can see that. Today is a red flag day: signalled in advance. I go in very early as he is to be marked up by Dr B for radiotherapy in a final attack of electrons to the head. This is a holding measure, an attempt to stall the lump, and it will be the last intervention he will receive. We both understand this. I told him the news. No more Avastin. After more than two years of treatment there will be no more treatment. I say it again here. No more treatment.
The palliative nurse corners me just before we go off to be marked. Would I like to go into the Relatives’ Room for a chat? I would not. What is it with Palliative? I have been around hospitals a while now. I am this building. My skin is rubbed transparent by it. My body is piping and ducting, my lungs the corridors through which I inhale its air. Its coffee is my coffee, its blood, my blood. My child has eaten food off its floor and still lives. I sense conflict. Someone’s nose is out of joint. Palliative has learned of the hospice proposal from another quarter and there is something she thinks is not right. No, I say, let’s talk in the corridor. I take up a position between the radiator and the fire hose, shoulder to the wall and feet planted against the contra-flow of staff nurses and sisters. If anyone tries to rush me here, I am secure.
Do you realise that people can only go into hospices for two to three weeks and after that, if they plateau, they will look for other places to move them to?
Then they will have to fight me.
What’s wrong with nursing homes?
I do not have any confidence that they can care for the complexity of Tom’s situation in a way that I want them to.
I think you should give the idea of nursing homes another chance.
The consultant thinks the hospice is now the right solution. She said that the window of opportunity for a nursing home has closed.
(I do not tell her I never believed it to be open.)
Consultants often don’t know how the system works.
So you are directly contradicting her?
No, but I just want you to know the situation, people can’t stay in hospices indefinitely.
This situation is far from indefinite. I wish it were. The consultant, who is the person I must trust in this, has the evidence of the scan. It is very bad.
You should also know that it might take weeks to get a place. Just as long as you are aware of this, you might be in this hospital for weeks.
Have you asked the hospice if there are beds?
No.
Then why don’t we have this conversation in the light of fact.
I sound murderous but I am acting. Surprising. I feel slightly relaxed, detached. Something in the near distance is giving way, like snow dumping quietly off a pitched roof. I feel it. If I do very, very little, stick around, watch carefully, pay close attention and don’t move until the time is right then we will win. The game is this. Either inertia wins or velocity wins. The stakes are at their highest. We need to get out of here while Tom still has the power to express his life. I am powerless yet I hold the cards. We will get what we want. We will win.
Tom’s lump is marked up with pen and a black marker circle is drawn round it like an illustration in a Ladybird book. Here is the lump. It is big. Look! Here! I could have done that, or Ev. I am no longer interested in medicine. Medicine has done with us. I imagine it’s like the arrows they draw on bodies before an operation to show which kidney to take out. But then the consultant and the radiologist start to exchange strings of numbers. They bring out stencils: circles, squares in different sizes to focus the rays and folds of lead to shield the ear. We are sidelined. I stroke Tom’s hand as we chat. He is so tired but looks wild and brilliant. It’s been a mad morning what with Palliative and all and we haven’t even got to lunch.
As no porter is to be found, Dr B and I push the bed back its long return to the ward. Such a daft, comedy thing a bed, and so hopeless when pushed by amateurs. It goes n
owhere we want it, into walls, steel doors, all edges converging, wheels in lock. Dr B is as bad as me. Tom is encouraging: alternately bored and laughing as he watches us smashing about. We tuck him into the sheets for safety. His limbs mustn’t roll over the edge. While we are waiting for the lift I begin for speed to talk to Dr B out of his earshot when I notice his face go all funny and cross. He gesticulates and beckons us over. Stupid of me to make this mistake now. He is a person. He will not be talked over. We group around the bed and I repeat the fresh conversation with Palliative verbatim to Dr B. That is not how it works, she says. I nod. We will win.
Liberation, total and absolute! We are free. Very early the day after my encounter with Palliative she phones me at home. I have just dropped Ev at nursery and I am staring blindly out of the window, squinting at the shape of the day: same as all the days. Tom has a place in the hospice, he will go today, Palliative says. Eh? She repeats. I am silent. He will leave at 1 p.m. Suddenly I register what my eyes had been looking at before the telephone rang. Bright leaves of gold and lime are crowding and waving wildly at the window for my attention on the tree outside. I phone him immediately but he has already heard. Using a hand-made repertoire of torn-up words – yes, no, on the other hand, indeed, also, then, God, want, I, but, maybe, good, well, oh – he conveys fullest delight.
Do you know what this means? It means we have a future.
3.10
7 December 2010
Dear Friends
Tom moved today from Guy’s, where he has been for five weeks, into Trinity Hospice on Clapham Common. We are delighted and relieved. It’s an incredible environment to be in, to spend time in. We can be at home.
The Iceberg Page 22