Extract from Marion Coutts’ memoir 'The Iceberg' published by Atlantic Books
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This is an extract from The Iceberg: a memoir by Marion Coutts published by Atlantic Books.
Marion Coutts: 'There is going to be a destruction… the obliteration of a person'
In 2008 art critic Tom Lubbock was diagnosed with a brain tumour that was attacking the language centre of his brain. In this moving extract from her new memoir, his widow, the artist Marion Coutts, recounts the ordeal of his last months.
Something has happened. A piece of news. We have had a diagnosis that has the status of an event. The news makes a rupture with what went before: clean, complete and total. We learn something. We are mortal. You might say you know this but you don't. The news falls neatly between one moment and another. You would not think there was a gap for such a thing. You would not think there was room.
first official separation. I am a zealot, an airship on its maiden voyage packed with mother adrenaline. I have rolls of data to proclaim about his protocols: his beaker, when he likes to nap, his poo, the snacks that are allowed and the snacks that are forbidden. I am not going to let anything stop me.
The childminder lives around the corner. She is much younger than me and canny. She has heard all this before. She knows to be patient and let me play myself out. When I am done, she will take the child.
In mid-song I am interrupted. Tom arrives. I am surprised to see him and pleased. Lately we have been seriously upended. A week ago, while we were staying at the house of friends, he had a fit. We don't know why. He'd never had one before and the shock took us straight into hospital in the night. Soon we expect some test results from the hospital. I imagine a letter about high blood pressure or diet, some readily managed condition, normal, nothing beyond us.
Tom greets me directly and takes my sleeve, pulling Ev and me out of the yard away from the toys and into the street. The three of us cluster a couple of doors down alongside a low wall. Ev wriggles in my arms and I am still talking. Tom stops me. He says he has had a phone call. He has a brain tumour. It is very likely malignant.
Did I understand it before I heard it or did he finish the sentence before I understood?
Conflagration: my ship is exploded. A fireball.
We are novices. We have very little information and so repeat what we have. One phrase goes back and forth between us. The tumour is in the area of speech and language. I do not consider the idea that the tumour might one day take the mind. That thought comes later.
To make sense of what is happening, we need to say it aloud. Only then will we hear the news mouthed back by others and reshaped into words – ohs and ahs, expletives, and long out-breaths. Maybe, coming back to us in this way it will sound different; better, worse, I don't know. Maybe more comprehensible.
So this is what we do. We make an email list of our friends. Concentrating is hard and even remembering who these people are is an effort. We go back to the things we know, the building blocks of our past. Our wedding was nine years ago and at the heart of the list are the wedding guests. We liked these people then and mainly we like them still. Slotted on are new friends met since. We do not edit but add. It is construction work and we are going for solidity: mass, weight and number. Family is here too. Now is their hour. We don't want to overburden them or frighten them off. This is our disaster. They are just being called upon to witness. So together we write them a message in the form of an email.
14 September 2008
We have some troubling news that you should know. A small tumour has been detected in Tom's brain. It's not known yet whether it is malignant but that is possible. It needs taking out and he'll be operated on in about a week.
We don't know yet what any of this means, in terms of further problems or none, or possible side effects from the operation. It's a very uncertain time for us.
After the first shock, we are strong as we can be. This is largely because Tom is at the moment very well, looks well, is lucid, thoughtful, writing, working, preparing. Ev is fabulous as usual.
We will let you know when we have a date for Tom going into hospital.
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.
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.
There are no rehearsals for these responses. 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. 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. But over and above the offers of help and love, precious though they are, is the fact that we are public knowledge. Our signal has been heard. By each response a friend is activated.
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 18 months ago, so it would have been a lot. But the exact texture of past desires cannot be recalled. It is gone.
25 September 2008
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.
Twenty-two thick staples of metal run from below the jawline 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 12cm. 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.
After the removal of the staples and a further half-hour waiting, this is where Tom and I; Mr K, the surgeon; and Charlie, the charge nurse meet so that Mr K can give us the biopsy results. There is no preamble. The biopsy results are as bad as they can be. Grade 4 – glioblastoma multiforme. This is the new name we are given. I hear a short suite of words – aggressive – early – small – encapsulated. Even in the delivery of wholly violent news I notice Mr K's voice is emollient and slightly hesitant as if to soften the blow, making me think the news might actually be worse in reality even than this.
This should not be Mr K's job. All praise to the surgeon. He is the one with the good hand and as the bad messenger he is not in his element. His manner and words are functional and in no way sweet as the high art of his knife. We who are good at words would be better than him at this but in this foursome we are suddenly wrong-footed. Something new and strange has happened. We are the victims. I don't know yet what this means but the ground we stand on has gone.
9 October 2008
The struggle continues. The biopsy showed that Tom's tumour was malignant. The surgery went very well but he will need a course of radiotherapy, beginning quite soon, and going on for six weeks (that is, going into St Thomas's each day, for a short blast, for five days each week). Tom is otherwise making a good recovery from the operation. He looks and feels well.
The next couple of months of treatment are going to be pretty difficult. So we say again, it's important to us at this time that our friends stay in touch.
So what did you do when death came to your house? We continued in the same way as before. What is that, a failure of the imagination? Are you in denial? This is not wholly true; we continue in the same way as before but in parenthesis. My thinking has switched its grammar. The present continuous is its single operational tense. Uncertainty is our present and our future.
Once the nature of the threat is known the defences are brought out at high speed and within multiples of days they are fully rolled out. As well as the surgeon, Mr K, we are assigned an oncologist, Dr B. We are booked to see the neurologist, Dr H. We meet the chemo nurses and Tom is fitted for a radiotherapy mask. We wait for the regime to begin.
23 December 2008
Happy Christmas to you. Tom's first round of treatment finished a week ago, and we have a respite until mid-January. So far he's doing well. Ill effects are few and not too terrible.
Thank you for your thoughts, messages, support and company. We look forward to seeing you in the New Year.
6 June 2009
It's been a while since we sent one of these out. The months seem to have passed quickly. Tom is about to have his last week of chemo. After that, there will be a scan. After that, we're not sure.
So far he continues to feel very well. He is doing his work as normal.
17 July 2009
Tom had a scan last week. Yesterday we were given the results. They were described as "very good news". Since the last scan in January the affected area of his brain has shrunk, and there are currently no signs of bad activity there.
This is obviously encouraging but the situation is ongoing and there will be another scan in three months' time.
There are these simple words that are starting to cause him trouble: small, single, only, speak, one, tiny, tall, short, sign, slow, same, few, lips, stop, sole, lone. Tracking elusive words was always Tom's pleasure but now it has added urgency. His recovery is becoming less secure. Out of the blue, pronunciation needs attention. Meaning swoops and flits about and can land on the wrong thing. In a miracle of Tube extension, Kennington Tube becomes Dulwich Tube. Driving through Hackney, a police stakeout becomes police steakhouse. Hand replaces head.
Fast forward to February. The future has arrived early. Tom has a severe fit in the small hours of the morning. He had gone away by himself to get some writing done in a house by the sea and was due home today. It is evening, he is back with us, lying down quietly upstairs. He can talk after a fashion, read a little but he can't write. He is estranged from himself.
Spring. There is going to be destruction: the obliteration of a person, his intellect, his experience and his agency. I am to watch it. This is my part. It is now March. In one week, Tom will have another scan. This is the one to fear. There have not been so many fits, but outside them complexity is multiplying and thousands of lesser confusions also occur. Words slip out, switches are stumbled over and substitutions made.
The scan results are as expected. After nine months of post-chemo stasis it is springtime. The tumour is growing again.
10 April 2010
Since our last news at the end of March, things have moved very quickly. The surgeon has now looked at the scans, and recommends another operation. It is lucky that the tumour is growing back in the same place, on the edge of the brain. Tom will be going into Queen Square hospital on Monday, and the operation will be on Tuesday 13 April. It is all extremely short notice. Tom will be out of action now for an uncertain period.
This is a time of great stress for us. Offers of help, practical, emotional, culinary, comradely, or otherwise enlivening – all will be gratefully received. We should say how much your support and contact so far has meant to us three. Thank you.
13 April 2010 The operation went well. Tom is sitting up, talking, eating, reading. He looks extremely good. All praise to the surgeon.
Tom is home within 10 days but straight away there are fresh difficulties. He has trouble saying the name of the hospital or the name of the friend who came yesterday. He calls me to the study where he is looking up something in the thesaurus. The word is disaster. "They can't have got rid of it!" he says. "Maddening!" As he has spelled it distaster, he cannot find it. Physically there is a lot of strain. Weakness and muscle failure is starting to sting him and creep again around the joints, fingers and calves and in parts of his arms. This is steroids at their warring work.
Tom is speaking to me less. The way his intellect is made manifest through language is being destroyed. Great chunks of speech are collapsing. Holes are appearing. Avenues crumble and sudden roadblocks halt the journey from one part of consciousness to the other. He strings words together like ropes across voids. He never panics. What would it be like if he did?
9 July 2010 It's been three months since Tom's operation. After the latest scan, it appears that the subsequent chemo treatment is not working. Another form of chemo is now being tried out, as of this Monday. We don't know how he will react to this. We are anxious.
Tom continues to work well but more slowly. Though still physically fit, everything becomes much more difficult. We are very tired, except Ev.
Thanks as ever for your support.
My job is threefold.
1. Not to let Tom be destroyed before his death but to help him live it fully in his own way with all his power. 2. Not to let Ev be destroyed by Tom's death but to help him live it fully in his own way with all his power. 3. Not to let myself be destroyed. See 1 and 2. That's it. The project is not to go down.
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. 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. Not long afterwards we find a lump. A small hill is rising on the side of his head at the site of the scar. I touch it with my finger. A thing. I had noticed it first a few days previous hidden under his hair but definitely it seems bigger. It is growing. We are puzzled. We think of the skull like a motorbike helmet that can shatter but not expand. We mark it down to tell Dr B at the next clinic. What is this? Her fingers go to it quickly, gently parting the hair. Her eyes narrow.
1 November 2010
There are two pieces of news. The first is that Tom is in Guy's hospital as of this weekend. His mobility on the right side deteriorated sharply last week and it is no longer wise for him to be at home.
He is in very good spirits and we hope to keep them that way. Visits are a pleasure for him. He is in the same ward as before. Cards, pictures, notes are very welcome. Phone calls can sometimes work too.
The second news is that funding for him to receive the chemo drug Avastin has been approved.
This is scheduled to start on Wednesday.
It's a very extreme time, deeply precarious, but also amazing. Tom has been doing a great deal of talking and writing lately with the help of friends.
The tumour's physical presence has grown. The little lump was only the start. This is unusual. Most people are dead before the thing shows itself. Disease has taken the weakest route via the scar to exit the head and is now flourishing outside the skull. This growth may be good. Better to be under our eyes where it can be dressed and assessed than couching inside, impacting on the skull, blotting out the brain. So, on the left side of his head above the ear is now something the size of a tennis ball. Or is it an orange? A potato? A chunk of Play-Doh?
The tumour is advancing. Avastin is not working. I am in a car going around London with my friend Vivien to look at nursing homes so that Tom can be discharged to a place where he may die.
On the drive I saw a street sign, so small I hadn't noticed it before. Hospice: pointing left. 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.
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.
7 December 2010
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.
You are all welcome. There are no restrictions at all on visiting. Nearest Tube, Clapham Common, is five minutes' walk. We hope to see many of you on Thursday at Tom's exhibition at Victoria Miro.
One. One. One one. The first day of 2011.
A new year has begun. Perhaps the one cruelty of this story is that after this, when I look on to the garden, it will look the same. There will be no outward sign. At death the world does not alter: no shift of earth or change of colour, no noise, no shimmer of light, no falling or collapsing of physical objects. The tree standing there will still stand. Stay, stay awhile longer.
On Tuesday, Tom goes to sleep. His breathing is natural and ordered. His face relaxed. When watched closely like this, watched out as if your own life depended on it, death is normal. It is a series of stages more or less known. Here is a person asleep who will not wake. His breathing is not unstable. One. Two. One. Two. I pat the belly curve and trace the angle of its rising that I know so well. I love being in position here. It is perfectly correct. This is where I should be. But I want him to stay with me. Stay, just stay awhile longer.
When we are alone, my voice sounds hollow as I talk to him while he sleeps. I cannot make my sentences work. They tail off. This is a dry run. A premonition of what it will sound like when my main hearer is gone. I have lost the second consciousness that powers mine. Lost my sounding board, my echo, my check, my stop and finisher. I am down to one.
Tom is already elsewhere, gone on his own sometime in the last days. He glided so delicately out, his absence so continuous with his presence, with us and without us, that I didn't catch the moment and immediately it happened it had already gone and was behind me. So. Just me.
Stay, stay awhile, I whisper to the bed. I want this death to happen because it is the end and I will finally rest. I don't want it to happen because it is the beginning and I will finally understand. We are together on the bed. It is familiar. Like how we were.
How precious, I tell him, we are here and I am seeing you off. I am sending you. My hand is in his hand. Go. I hum something, not anything. Go. I speak words, not anything. Go. I am not anything. Go. I am.
10 January 2011
Tom is dead.
He died yesterday, January 9th 2011, at 2.15 at Trinity Hospice.
Two days after your death, in a dream you text me many times. I read the first of them.
And so are the living comforted.
It was snowing on the day we buried you: small flakes, wide-spaced, tugged hard by the wind. Unplanned, we formed a circle around your grave and stood as the words went up. Your child and his friends were everywhere present in our procession, threading lightly through the lines of mourners. I scatter earth over you and so does he. You have moved through us and now you are gone, leaving us standing. And so are the living comforted.
This edited extract from Marion Coutts’ memoir The Iceberg first appeared in the Observer