The three-month span is up again and it is time for the oncologist. We go in the mood of holding steady, hoping nothing, fearing nothing, positioned in each other’s company and moving through the stages that tend to fall before appointments: the number three bus, walking, bloods, weighing, waiting, with a kind of cool, a knowledge that whatever we felt would not change the outcome and therefore we could feel just as we chose, steady, alive and together.
The outcome is bad. (Did I know this in advance? Again that weird trick: knowledge falls on to ground that seems ready prepared though you never remember doing it.) The scan is hard to decipher in a way that doesn’t look good. OK. What do we do now? Second opinion. Talk to the surgeon, look at other chemo options, all of them more retro. In the beginning our drugs were state of the art. We move backwards in time and opportunity and if a drug were so good, we would have been there already. Surgery: three surgeries, can that even be an option? It is mentioned. The last one scraped a fresh hole in Tom’s head and altered mine profoundly. If I were a tree you would find traces of that date, 13 April 2010, in my wood. It would register as a disturbance in my rings, a disruption, a check in growth, a wound.
After the oncologist I pick up Ev from nursery. I am not making much headway with other parents. This is understandable. I don’t have the mental reach, the open arms. A group of parents from the nursery are aware of what is going on with us and that is some relief. But the nursery itself is not a relief. It is a modern building, bright, generous and well designed with curved walls in sunflower yellow. Blue lino, eco displays and plastic furniture all converge in an environment dedicated to the future. I cannot stand it. The future will not relent.
Children are the raw, soft part of us and because of Ev I am at my most vulnerable here. Our family trauma is a monster. I cannot casually let it out near the sandpit and the dressing-up box. The adults you meet here are contingent. All interactions are distracted and conducted over the heads of the young. This is not an environment for the formal presentation of pain. There is no way to do it that protects me and there is never a right time. When I try, the result is demolition. Tears stop my mouth before I can continue. I leave as fast as I can and feel the impact in fatigue for days.
I do not need new friends to support me. I have enough. But I have to keep coming here and unless I am truthful, the fiction is created that I am just like them and that Ev is just like their children. Keeping up this fiction is so tiring. But then the other way, to speak the truth when they ask lightly, Oh, how are you? I seek the way of least struggle and lightest pain. The nursery staff do the only thing they can. They are wildly generous in their attention and care of Ev.
Sometimes what I want to explain to Ev is this:
Look, I can be rougher than I should be with a three-year-old whose father is dying. This is because the shape of the person that you see here is held in place by pressure and will and by contingencies of illness or wellness like whether your father can talk to me or not today.
What I feel as I watch you a living/living being and he a dying/living being seems supernatural. I don’t know why I am not mad, or blind. But I am not. Still, we have this life and we float about in it and many things continue to happen to us for very good and very ill. I am not dissolved. I do not moan or despair. I do not panic. But I am über-naturally tired. The edges of my vision are distorted. The fibre of my muscles is weak. My tongue lacks spring. My hands do not rest. Pressure can cause me to lose my shape under tension and when this happens I lose my temper. I regret this. Some obscure, scratchy line will be crossed, a transgression so minor you might not feel the violation. This must be confusing I know. It is textbook bad child-rearing, signals hopelessly mixed. But it happens and there are worse things.
(But then I remember that the worse thing is also happening.)
First – if I am outright wrong and haven’t even been provoked, we apologise and kiss. I try to close the gap between flare and kiss, to a hiss, a hiatus. I learned not to sulk or go cold on you a long time ago. My anger is condensed, hot and translucent, not icy or opaque. I never leave you guessing.
Second – if I am sort-of-right to lose my temper and much provoked, we apologise and kiss. You see – the outcome is the same. We end in each other’s arms. So, forgive.
Tom says, He is so bold and you are sometimes so rough with him, yet he always comes straight back. I think about this for a while. If I am sometimes rough with him, I say, it is through fear of the void. What if he had no one to say, Come-and-finish-your-dinner, or Get-down-here-right-now or It-is-time-to-go-to-bed-I-told-you-twice-already. How would he feel then? Alone. I cannot bear this. My insistence on sitting down to eat, cleaning teeth or tidying toys is a way of holding on to living as practice, as routine. It is all so volatile with us. We need to hold this stuff in sight.
Then I continue: And if he comes straight back it shows that he is secure in my love. This is a fact about him that I should not take lightly. Almost in passing a friend comments that it would be easy to lose your temper with a three-year-old even under normal circumstances, without brain cancer to contend with. Sounds perfectly true. But I realise suddenly that I have no grasp of what normal circumstances might be, and as I leave her I am ever so slightly salved. Anointed. Lighter.
There is violence of course. The mother–child relationship is a testing ground for all permutations of all relationships. Violence comes within its remit. Ev started to hit my face when he was about one year old. Out of affection, boredom or delight, to get a reaction, or my attention, or just to gauge the sound it made, I don’t know. It went on for months and like a drip-drip torture it was the crack that wore through. My response time was slowed by pheromones. I just wasn’t quick enough to escape his fat paw. He had surprising heft for a baby and always worked at very close range. Putting him to bed while snuggling or stroking his hair was a favourite moment. Whack. Or as I hugged him close to my body, savouring the warmth of his torso and feeling his lovely weight, he would rear back to get some distance. Whack. On sleep portioned into three-hour blocks I can’t swear to my response. I tried retreating, storming out, reasoning with him or just bawling, DON’T HIT MY FACE. Minutes later I would be back in the only place I wanted to be, my face inches from his. Whack.
I am there now. Ev is right next to me and together we watch the sunset fade. He wriggles and snuggles, his movements winding down, smaller and softer: slower. He is drifting. His eyelashes, the second thing I registered at birth after the exquisite, fine penwork of his lips, are enormous. They curve graciously over closed eyes: small shadows drawn neatly beneath, the mark of intensive play. This is the end of his last week at little nursery. Have you had a good week, Ev? Have you enjoyed yourself? Yeh. He is half-smiling at me. Yeh.
What an impossible creature. How remote is early childhood. He is an island boy to our city dwellers. Here is someone so proximate to our lives – 10 cm from my face and breathing calmly – yet untouchable. Can this be so? This has been one of the worst weeks ever, an appalling week, difficult in ways I can’t quantify. For Tom, drugged out of shape, it has been peaceful. No sickness, just the limbo of unconsciousness interrupted by eating, waking, not speaking much, bits of work. Yet here we are. It is Friday night. We are at the week’s end and Ev, his child, is smiling and relaxed, happy and about to sleep. I believe him. He does not dissimulate. What a wonder. The accelerating forces of Ev’s life are a perfect counterweight to the forces accelerating in ours. He can deal with it all and he will. I trust him. He is a true master.
2.13
You should know that I am a slob and I love to loll. I do not wish to have the roles I have: cook, facilitator, interpreter, editor, carer, watcher, driver, calendar keeper, drug administrator, planner, gatekeeper, worrier, conduit, walker, helper, organiser, nag, mother.
We move deeper into the land of the unreal. It all seems silly, childish. A game has gone wrong. The rules are arbitrary. No one can remember them anyway but the results are fatal. There has
been black propaganda against him. A decision has been made in secret. Tom is being sent away, reason unknown, discriminated against and told he cannot play with us any more. It is a procedural matter. We have no right of appeal. That fact alone drives us mad. How we love to argue and appeal. It’s the whole of our fun. We sit opposite each other on one of our many evenings, he on the collapsing pink sofa now beginning to double as his bed and me on the derelict blue one. We are alive, as alive as you. Yet we are to stop.
It is the first week of August. Andy comes to stay and we go to the Heath, walking very slowly up the hill to the flouncing kites, and take up a position to watch them. Tom sits on the bench, his face turned to the sky, and the rest of us lie on the grass like fallen shapes in a fitful hotness. Ev throws himself on each of us in turn and Andy and I toss him on our upturned feet, roll him down the hill and tickle him till he farts.
But over the following days many things happen. Events collapse into one another and occurrences are set in train with their ends not in sight. It starts with a physical manifestation so at odds with the problems we have come to know – fits or fatigue or dysphasia – that it takes us by surprise. Diarrhoea mixed with bright red, new blood. This is enough to get us into hospital but under our own steam, without many qualms. Like a battered old dualist I reason – this is the body, just blood and shit, this is not the bad brain dealing its next bad hand, it is matter and hospitals deal perfectly well with matter. They must have gallons of it going in and out all the time. So we check ourselves in, not calmly surely, but in charge, texting gaily all the while on the first evening. All procedures going! xx t. It will be a respite courtesy of the NHS in a not-so-great part of town but we will both be able to get some sleep. Indeed on the first night it is true. I get seven hours unbroken. I cannot remember feeling like this for so long: like a bell struck or a freshly cleaned and folded towel. But the next day when I visit, Tom is in pain so that’s the end of it. No more nights like that. So far we have not had pain, scarcely a pill’s worth. Whatever the tumour has been getting up to, it has not hurt.
Food poisoning, the doctors hazard. Andy, just back from Ethiopia, who had cooked us the Berbere fish the night before, is distraught. Ev gets wind of it. Did Dad eat all the red fish? Infection is the next guess, so they keep him in isolation. He is in hospital for six days and though the pain, the blood and the shit recede, for six days and nights he stays on his own in a small room like a cell painted cream, turquoise and lilac with a window view aslant over the pure arse of south London: undefined, undignified and stretching to the horizon.
After tests they determine colitis. This is a problem but it can be treated and seems anyway to be easing off of its own accord. Its root is unclear but what is clear is that a brain already stressed by a tumour can collapse very suddenly under pressure of physical illness. The brain is metabolically hungry. Here it is being starved. Tom becomes timid and unsure. In the space of six days he gets confused and his language fails harder. His morale goes lower than I have ever seen. He has the sheer ability and reason to ride high most of the time. He is buoyant. We all cling to this. A floater, he calls himself. Yet it is Friday, he is being discharged but we are struggling to convince him. He worries he won’t be able to climb the stairs at home or get up from the bed; he whines about getting dressed, about getting into the car. He doesn’t want to go. I pretend not to be astonished. I edit my voice to keep the surprise out of it but my heart bangs in my chest. What is this? He is changed.
One phenomenon irritates me beyond sense. He will not look at me. In the little cell he does not meet my eye. His voice is dull and without colour. I am over here, I keep saying. Hello. I am here, look at me! I wave at him rudely inches from his face. I am belligerent because I am afraid. Here I am working to spring you from this hospital and the least you can do is look at me. I tell him he has Stockholm syndrome and the hospital is his captor but he scarcely rises to this drollery. We have to get out of here.
I remind him how much he wants to see Ev. Truly Ev is more than he can cope with right now but our love for our children is supposed to be one of those universal and sustaining stimuli that never fails to work so I throw it in anyway.
The best nurses have the miraculous facility of instant appraisal – praise to their Patron Saint. The nurse Sheila grasps what is going on and she and I make common purpose and work on him together. Just wait till you feel the air on your face again after all this time. Wait till you get back in your own environment, it will all seem different. Let’s get you home to eat some proper food. You can go home and get some work done. All your friends can start to come again. As we say this, I don’t know what she is thinking but I think that we are bluffing. But it comes to pass exactly so. In everything we say, we are right. In the end Tom creeps out of the ward, his face stony, warding me off as a potential foe. But I cannot help noticing that he is in the passenger seat of the car quicker than I can get his bags stowed and turn to help him. This is a sign. I am galvanised. Keeping up a pure tonic of talk like a stream of energising bubbles I drive out and round towards the Elephant and Castle breathing in the air. It is heaven this air. Even as we exit I can feel the man next to me returning, his resurgence following the curve of the roundabout, his body bending softer into the seat as we stream out of the slip road in the direction of home. He winds down the window. Ah yes, he says. Ah yes.
Just before we leave, Sheila takes me to one side to talk about Tom’s new drugs. He came in with two, Epilim and dexamethasone, both self-administered, morning and evening. Now I am handed eight in a green, sealed plastic bag with an instruction chart I know he cannot follow in his present state. I panic. It is wrong to say the word Fuck in hospital. Not a sweary house this. The elderly shouty man outside Tom’s cell, who we call Falls Risk from the sign written in pen above his bed, says Fuck a lot but that is his prerogative. What is it not to cope? Not to cope means to fail. What is that, to fail?
Although there is more to come, of course more and I cannot pretend to be wise about it, I think I have a sense now of what it all is and what it all will be. And what do I think? Everything that can be said has been said before, either in the same or a different way and can be said in other ways again. There is comfort in this. Yet it doesn’t go the other way. I can never say about Tom losing his words, Ah well, it is only words. There are 88,298 words in this book. But this is nothing. Not even the beginning.
2.14
It is the middle of the day and I have gone to bed. Being tired is the cover but in fact I am plain pissed off, fed up, done in. Our coordinates are bust. That’s what I’m thinking. Three points on a graph can generate a conversation. One to two, one to three, two to one, two to three, three to one, three to two. Three points makes a system of simple complexity, early-stage proliferation. If you were to draw between three points you would get a shape: one edge a base and the other two supporting. Or vice versa. A basic structure. A tent.
Two points go: one to two, two to one, one to two, two to one and back, endlessly, to infinity shuttling back and forth like an echo. It’s a recipe for madness. If you were to draw between two points you would get a line. A line is a point moving through space. It has breadth but its main matter is extension. A line is not a shape. A line is not in two dimensions. You could overdraw the line and after a while the paper would tear. A line is weakness. Any way you look at it, it’s the same. Yesterday we had an important conversation with Dr B, the oncologist, a catch-up in a month of gathering trouble. These days we know everything before she does and her tests simply confirm our knowledge. It feels natural to us to know. We are illness embodied after all and have been so for a long time.
All this month we have watched the outline and edge of change shape itself before our eyes. We note the demarcation lines of illness and wellness, their borders tingling on alert, glowing green, soft and elastic, looping and curling to draw new phenomena ever within their reach and scope. This too! Ah yes of course! This too! You didn’t think you would
be spared this? Everything has a side effect somewhere else. Drugs layer new problems over old like fresh scabs. Limb weakness, that’s because the steroids are too high. Tiredness is down to metformin or chemo. Shaky hands means the Epilim needs adjusting. Swollen feet is diabetes. Shit equals colitis. Speech difficulties, well, the steroids are too low. It is a sinuous disease. What did we talk about with the oncologist yesterday? I had a list. Twelve points. Numbered.
We proceeded methodically down the page of my little book, deviating when the conversation got more interesting or jumped ahead. A landslide of information was marshalled. Things got repeated, noted down, attention paid. We are still reverent to the facts. The force of our attention was fit to crush the facts to dust.
For the first time she brings up the name of the drug Avastin. It was in the headlines only two days ago – did I read it? I read nothing. Words pass my eyes like objects on a conveyor and sometimes they filter from there into my head. My receptors for information have always been sharp. Now they are extrasensory. I am a new type of being. I can smell out what I need and scent it blind. Certainly I do not consciously read. My concentration is too poor to take in information in lines of words massed in blocks with breaks between. That is old-fashioned. I have been honed into modernity these last two years. We both of us are extremely up-to-date and modern and we stand at the forefront and the edge.
Avastin is the next agent that might be employed against Tom’s cancer. The word drug has disappeared overnight from our vocabulary and has been replaced by the more progressive agent. Drug bad. Agent good. It is a long shot. Licensed in America, but not here, Avastin needs special dispensation from the Primary Care Trust and Dr B will draft a letter outlining his case. Now I remember the headline. I read it over someone’s shoulder on the Tube. Avastin costs £21,000 per course of treatment.
The Iceberg Page 12