At the time of the operation and after, we may need some help. We don’t know yet what form this might best take, it could be practical, or just to have our friends in contact, to be phoned up, thought of, emailed, visited.
We will let you know when we have a date for Tom going into hospital.
With love
In the study we bend over the computer, tight under the lamp. Tom presses Send. It is serious, this action. By agreeing to its terms and conditions we elect to turn everything pertaining to us a different shade. Once the news has gone out we cannot disavow it or pretend it is not happening. I cannot say I am prepared. I don’t have a coherent idea what Send means.
I don’t have to wait. Messages come back immediately. What were they doing, these people? All hunched over screens so late at night, at home, at work, as if primed and ready to consider Tom’s brain? News, News, News, News: the word scrolls down in bold text, multiplying in the subject box like a black manifesto printing over and over. Now we are visible. We can be found. The sky has rolled back, revealing the perpetual plains below ceding into darkness. We are isolated and illuminated. From a distance, I can look into our house and see the small family inside it. How easily we may be overrun! How defenceless we are! It is pitiful.
At first, before I understand how it works, I analyse the replies forensically, sifting the words and weighing them. I am searching for signs. It is the most basic superstition, like reading tea-leaves or looking for pictures in a fire. I make instant judgements based on how the words fall and I react in proportion to how dear I hold the friendship. How much do you love us? Do you know us really? How can you protect us? I cannot help myself. I might easily hate those who fall short or whose response is lacking. We are in mortal danger and we want to bring our people near, to gather and shield us, stroke us and sing to us. Isolation is death. We will be picked off. That is certain. But email is too crude for divination. The little fonts in stubby lines cannot take it. Words merge and swim about, scarcely readable. Quickly, mercifully the judgements fall away. I have it wrong! This is not about us but about them. We are simply refracted and talked about at second-hand.
There are no rehearsals for these responses. Some have had prior experience in death but whatever they do with us is a first take. All must improvise. Some talk firmly about themselves in long and looping, myopic paragraphs. Some remit their love directly. Some are blessedly, seriously practical. Some are brilliant: full of anecdote and funny. Most are short and this is cleverest. Some come out wrong, missing a connection of word or tone, like an unfinished puzzle or an arrow fired off into a hedge. There are straight-up reminiscences, protestations of love and notes on shock. There are brief, businesslike missives. Thank you for keeping me informed – this is perfect and suits very well the sender, like a pair of smart breeches or brogues. Some are hapless. Some do not reply at all and nor do we think less of them. Sending is all and lack of response never deletes them. This is not a group from which you unsubscribe.
We get poems and photos, links to sites, mad advice, offers of dinner, invites, suggestions, jokes, clichés and generosities. Courage in all its forms, liquid and solid, is pressed upon us, pressed and patted, poured and shaped to suit us. But over and above the offers of help and love, precious and determined though they are, is the fact that we are public knowledge. Our signal has been heard. By each response a friend is activated. Our message had a single note. Here is its returning chord.
It goes without saying that I am crying all through this time, except in front of Ev, before whom there seems to be nothing to cry about.
1.6
A new future has been handed to us. Now that it is here, it is impossible to recall what we were expecting before. Ev was born eighteen months ago, so it would have been a lot. But there is no question. The exact texture of past desires cannot be recalled. It is gone.
Ev made more sense to me before as part of a continuum. I study him. He is evident, but the memory of his birth and the circumstances of him coming into being are not. I am reminded that he was born by emergency caesarean. Like a piece of magnetic tape he self-erases neatly. Ever-replacing, refreshing and renewing, he grows older. In the new future, he is coming with us.
Eighteen months later here we are again. It is the same hospital and the schedule of the new future is written on its headed notepaper. Brain surgery as fast as it can be booked, followed by combined chemoand radiotherapy for the six weeks until Christmas. The chemo is called temozolomide. Six months’ more chemo in twenty-eight-day cycles will swallow up the first half of next year, the whole long arc comprising just one round of treatment, one line of attack against the tumour. Each stage will follow the previous one unless we decide to abandon and bail out. It is voluntary. We could do it at any time. But we do not, we sign up.
Tom feels extremely well. Energised by the attention. The surgery is upon us soon, so in the month between diagnosis and operation he and I lose weight. It is best not be overweight for brain surgery and I do it in straight physical alliance. Like giving up smoking, it’s easier with two. The kitchen is where we spend much of our time at home and cooking and eating together is both the maintenance and decoration of our days. To differentiate ourselves now would be unthinkable.
I do not have what are called food issues. In normal life I do not weigh myself. I do not have what are called body issues. Mainly I think I look good. I know this might be seen as strange for a western female in her forties but this is one of the points on which I differ from the norm. I don’t diet. I don’t restrict my intake. I am a size 10 or 12 depending on who is manufacturing. Weight is not something I spend time on.
Tom is much heavier than me. He has two issues around food, or three. He likes it. He is greedy. He eats too much. His diet in the past has been more extreme than mine. In his twenties he would eat Vesta ready-meals. He has eaten at KFC. Of his own volition he would buy a coronation chicken sandwich. I would never do this. His formative food experiences were parlous: an elite public school in the 1970s, forced to eat eggs, both yolk and white, and sauces and slop as was the English way, milk puddings and gammon. Fricassee.
I take charge of the shedding of weight. Here is an area of authority that can be mine. I am focused but not mad and our kitchen diktats are basic and sensible, the ones that everyone really knows. In the kitchen I can expand my theories and believe in their efficacy. Working with colour and smell and taste I will make food that is delicious. In impotence, here is something I can actually do. It is a form of control.
As a new convert I am an extremist and at first my cooking is gross. Leaving fat and pig and seasoning all aside, I make vegetable stews strained of taste and colour. But quickly, it all becomes strangely viable. Small plates, small plates, is the new mantra. I will write a diet book with just this theme. People write books with fewer ideas. It would need padding with cod-science, recipes, edicts, praise, colour photographs and homilies, but basically it would be saying: learn to cook, food you like, not fried, plates 8 cm diameter, not piled high. And don’t come back for seconds. On the back of the book there would be an 8 cm dotted line template of a plate to cut out. Remember – don’t pile so high so that the food slides off! That should make it clear enough. But then I might have to mention cancer.
Everyone should eat off side-plates. Ours are melamine, a set handed down from my grandmother in off-kilter, food-referent colours: mushroom, aubergine and turmeric plus a cracking kingfisher blue. No salt, no bread, no fat, no dairy, no seconds. This is written on a Post-it note on the fridge. But neither is the word No an absolute. We don’t like absolutes. We eat well. The last one, no seconds, seems to be key.
We have less than a month before the craniotomy and we get thin fast. People keep coming up to Tom having heard he has cancer and saying But you look so well. This makes him laugh. What they mean is, You are thin! Well is the euphemism of choice. I head straight for eight stone. One night in the gloom of a restaurant my armpits look like white caverns in the s
ockets of my dress. I only feel really hungry, dizzy-hungry, once, and that was a clear marker. We must eat. And so we do.
Ev is on another track heading in the opposite direction. He goes at food with intellectual interest and straight joy in taste. It is bonny. If I had known how much pleasure I would get from watching my baby eat I would have thought it an argument for more babies. It is such a treat I can’t take my eyes off him and I mask my keenness in case it makes him suspicious that there is something more at stake. So I eat with him, or look out the window or pretend to read the paper. He spoons up lentils, snuffles through tomato sauce with basil and surges his pasta round in it, he dips bread in spinach soup till soup and bread are one and sucks it. He holds broccoli like a cudgel and stuffs one, then two, three, four trees into his mouth. He eats liver! He eats bananas and garlic and stir-fry! We goggle at him. We win and he wins. We all triumph together.
All this differential feeding, fat and lean, exists side by side in the same kitchen. It takes organisation and the organisation is down to me. It comes at a cost: of time, focus, not doing much else apart from the barest bones of my work. But then nothing much else is getting done anyway. Everything is at a cost now. Roasting a sweet potato is priceless. Baking fish in foil is an elevated act. To eat is to partake in the grace. And what could be sweeter than feeding those you love?
1.7
25 September 2008
Dear Friends
Some further news about Tom. He’s due to go into hospital on 29 September to have the tumour in his brain removed. He will be in the National Neurological Hospital at Queen Square. The operation will be on the Tuesday. All going well, he should be home by the end of the week.
At the moment nothing can be predicted in terms of recuperation and further treatment. But it’s important to us at this time that our friends stay in contact, so please do phone, text, email, visit, and so on, in the coming weeks. If we don’t always get back to you at once, don’t worry. We hope to see you soon.
With love
Before dawn on the morning of Tom’s operation we make a mistake. We have met the surgeon, Mr K, and he is confident, so we are confident. We trust, but we do not know. The consequences are opaque in all this. So we decide to bring Ev into the hospital. As benediction and blessing, all three of us will be present momentarily, like a single stable entity, a stool or tripod. Tom must not go off alone.
It is very early, directly continuous with night. When we arrive, Tom’s face has been mapped with marker pen circles and crosses. Thick stickers of green foam dot his cheekbones, temples and forehead. The markers will guide the computer to gauge the entry. The circles are to cross-reference the location of the tumour and point the lie of the head. On the surgeon’s table a head is a still-life object, like a cabbage or a clay pot in a painting by Zurbarán, picked out in light against darkness. It must not move.
Tom looks high and mad. He is present but not with us. We cannot make this work or laugh it off as funny face paint. Ev hates face paint, refuses it always. Even without the stickers and the black arrows, Tom’s eyes would betray him. Their daylight blue has been tamped into a thicker colour, studded with points of light that glitter in the warm half-dark of the ward. This is brain surgery. We are at altitude and we haven’t enough air. Not everyone gets to do this. We are celebrants to this fact. It is strangely festive.
Tom is Nil by mouth so as breakfast gets under way we go into a small guest room. A plaque marked with a picture and a date seven years ago names the room in memory of the donor who went this way before. I have brought Ev’s yoghurt and fruit mixed in a pot, his pink spoon. Tom tries to feed him but he won’t eat. Stupid. Why would he eat? I cannot eat. Tom cannot eat.
It is quiet. No one disturbs us. We could just run away, get the bus and go home or hide out somewhere else. That is the odd thing about hospitals. If you are mobile and have autonomy you can just run. I wonder how many do? If only we could. Belief holds us here; belief in technology, systems, institutions, in the whole apparatus of advanced Western Medicine. We are taking a bet and our belief is that this is the best bet. We stay.
The room is a place for patients to be private and receive guests but there is nowhere to sit and it is full. It has likely been a storeroom since shortly after the plaque went up. Hospitals abhor a void and all good intentions operate against entropy. Excess chairs are piled against the walls and the interior is navigated through stacked tables, wheelchairs, a zimmer frame, a nest of buckets. A noticeboard with nothing on it hangs near the door. Guests seek comfort elsewhere. Here there is none. The lighting is ranged in fierce strips on polystyrene tiles and the walls are two-tone beige separated by a peeling dado. An intense rectangle of back-lit sky at the window affirms that night is on its way into morning. We are getting near.
Ev is frightened. He squirms in Tom’s arms. It was a bad idea to bring him. He smells fear on my skin. Is Tom afraid? It doesn’t seem so. He is the chosen one, in a solo dream that ends where he does and goes no further. We cannot penetrate it. What are we doing here? Marking the interval between something bad that has happened and something bad that may yet happen. We are always marking things. It is our habit. But we could spend every minute of every day marking and it would never be enough. These daily acknowledgements always have the same aim – like the ill-lit photographs I take today – to achieve permanence, to fix ourselves fast in each other’s eyes. With Ev changing from day to day, this is wilful. Still we try.
We are three. The consciousness of one of us is being interrupted. His self-hood is in jeopardy. How will he be? Will he still be mine? What about knowledge of love? That’s the main thing. Where does love lie in the brain? Is it marked with a black cross? Will Tom love me and love the boy like he loves us now? If he cannot, how will that affect my love and the boy’s love for him?
I don’t want to stay though I am afraid of what will happen after we go. Time versus resistance seems an equation for stasis but strangely stasis is not what we have but something else, some other kind of empirical motion. We have brought Ev right into the heart of it and he resists to the full. He knows there is nothing for him here. But some improvised ceremony is called for, and this is it, held among the ramparts of spare furniture. It is now 7 a.m. on a Tuesday in early autumn. Soon I must leave. Soon I must take Ev away. I am not being given a chance to get used to this.
1.8
Tom is having a craniotomy. We who can’t be of any assistance here can only lower our eyes and walk the streets like penitents until it is done. After his broken benediction at the hospital I drop Ev at the childminder’s. Normality is his best respite. The early light has morphed into a seamless, gunmetal grey that seals the sky from edge to edge. I go back to the hospital without him. Vivien will be my companion but I am destitute, homeless and bodiless. I haven’t got this organised, what to do while waiting for the outcome of my husband’s brain surgery. There is no protocol. I can do whatever I like.
What I like is to be near. So we decide to stay close, never far from the hospital walls. It is a new attachment. I don’t know this area. The neurological hospital is in a part of London I’ve never had reason to cross, and through a narrow passage off Southampton Row just below the square runs a queer alternative grid of parallel streets. Under different circumstances perhaps I might have discovered it, as it seems to have a range of offerings. The Adult Ed Centre provides courses and big plates of strong dinner. There are gardens for office workers and invalids. Lamb’s Conduit Street has a well-heeled mix of bespoke suits, esoteric bag shops, high-end delis, coffee and books. If it were Ev who was sick, I would know the area more than enough. Great Ormond Street is next door.
For something to do I buy a scarf to curb my shivering and hold my coat shut against the wet. I choose it like a lady’s favour from a bin of coloured woollens. This one, to be worn on the neck in honour of the day. It is a soft, very pale blue. With it laid against my green coat I am the brightest thing in my vision. Everything else is wet ash.
We have no agenda but to wait. We try to go to the bookshop to be indoors and have tea but I cannot sit so tame among the other drinkers so we leave. Around the corner is Coram’s Fields. I picture Coram as I learned about him at school, a progressive thinker, energetic in breeches, red face, white shirt and wig. The board on the gate says No adults unaccompanied by minors. Such a radical idea. We have entered childless but the spirit of Ev is fully with me and no one is here to stop us. This is because it is pouring: a full London pelt. We take cover in the stone gazebo and sit tight, framed by its columns in formal misery. Damp seeps into my legs. Outside the semicircle of our shelter the rain rebounds a foot high above the paving.
After a time, a decent interval as judged by a layman for the cutting and sewing up of the head, we return to the hospital. My scarf has stopped working and I am shaking hard. I leave Vivien on the stairs and as I walk to the door of the Recovery Room I hear a voice. Tom: a man chatting, not even with difficulty but just as exact, as excited as ever, his voice boomy and familiar, and this is a moment like no other. What is it like? Like more than the sum of all the things I have ever anticipated. More. My treat. My gift. Whatever else happens, there will have been this.
The swing door bursts out like a big hello and Mr K, the surgeon, is before me. His eyes fire up to see me and as we conference in the doorway he holds the door ajar with his foot. Water drips from my hair on to my face, from my coat on to the floor and pools around my boots. Mr K is very happy with it. Tom is very happy with it. I am very happy with it.
1.9
Twenty-two thick staples of metal run from below the jaw-line up into the shaved area behind the ear on the left side. From the front you notice nothing, but from the side a blooded silverine line fringed with scabs marks out a wound measuring 12 cm. One week after the operation it has healed well, with no trouble. We have been called back to the hospital to take the metal out and to hear the result of the biopsy. The biopsy is the moment we must submit to, I know that. The result will take us forward in whatever way we go forward but just now the situation with the staples is preoccupying me. The staples are getting in the way. We lean against each other on a pair of green chairs by the entrance to the ward and wait.
The Iceberg Page 2