The Iceberg: A Caregiver's Record of a Brain Tumour Taking Language Away

Marion Coutts is a British artist. In 2008 her husband, the art critic Tom Lubbock, was diagnosed with a brain tumour in the language areas of his brain. Their son was a toddler. The book covers the roughly two and a half years that followed.

Said plainly at the start. Tom Lubbock died in January 2011. The book is written after the fact. It never hides where it is going. The title refers to what is coming towards them. Atlantic Books published it in July 2014, running to about 304 pages, and it won the 2015 Wellcome Book Prize.

Its central device is not a device at all, it is what happened. His ability to speak and to understand speech was destroyed. At the same time, their child was learning to talk, fast. She records both curves in the same pages. One vocabulary shrinks while another expands at the same kitchen table.

It is a caregiver's book. Lubbock wrote his own account of losing language, published separately, and the two books are often read together. This one is about the person holding everything else.

The book is written in short dated and undated sections rather than conventional chapters, moving broadly forward in time but not tidily.

The opening covers diagnosis: the first seizure, the scan, the consultation in which they are told what kind of thing this is. She is precise about the strange administrative calm of that period, and about how quickly the household reorganises itself around appointments.

The long middle is treatment and its aftermath. Surgery, radiotherapy, chemotherapy, steroids, and the effects of each on a man whose profession was writing about art. The recurrences. The gradual redrawing of what he can do, then what he can say, then what he can follow.

Threaded through it is the ordinary life that does not stop: nursery drop-off, a small boy's questions, meals, work she is trying to keep. She writes about wanting people to help and being unable to say what help would look like.

The final sections cover the last months, home nursing, the arrival of a hospital bed downstairs, and his death. There is a short coda. There is no advice section, no glossary and no list of resources.

A note on what it is not. There are no statistics in it, no explanation of tumour grades, and no account of how decisions were reached in clinic. She is not withholding these things to be difficult; they were not what the days consisted of.

It is the best account there is of watching language go. She is a working artist and he was a critic, so she has the words to say exactly what is lost: not just words but syntax, then reference, then the ability to hold an idea long enough to finish it.

It is unusually honest about caregiver rage. She admits to fury, to selfishness, to the desire to be somewhere else, without dressing any of it as noble. That is rare, and for readers currently in the middle of it, it can be the most useful page in the book.

It is also good on the child. The boy is not a symbol. He is a small person with his own agenda, who wants things, interrupts, and adapts. The book resists the temptation to make him wise.

And it is good on the way time behaves. Long featureless stretches, then a week in which everything changes, then another plateau. Caregivers often describe exactly that shape, and find it hard to explain to people who assume steady decline.

It is British, and the health system is invisible in a way that is itself informative. She describes hospital stays, radiotherapy courses, district nurses and home equipment without a single invoice. In the NHS she was not billed for them. A reader in the United States caring for someone with a brain tumour will do all of the same work. They will also face insurance approvals, network questions and out-of-pocket costs. Nothing in this book prepares anyone for that part. It is not a description of what care looks like in America.

The clinical detail is also specific to 2008 to 2011 and to one person. Brain tumour treatment is decided by tumour type, grade and molecular features. This book is not a source on any of that.

The prose is fragmentary and sometimes very compressed. Some readers find it exhilarating, others find it hard work. It is also relentlessly close-up. There is very little relief in it. A caregiver in crisis may want something gentler.

One more thing worth flagging for readers with young children. The book shows a two-year-old being told the truth in small pieces. That is close to what federal guidance says. But it is one family's version of it. What one child needs depends on their age and nature, and on what is already happening at home. A hospital social worker or child psychologist can help work that out. A book cannot.

The book's opening is a diagnosis arrived at through symptoms, which is the usual route. NCI's adult central nervous system tumours summary explains why symptoms vary so much. They depend on where the tumour forms. They depend on what that part of the brain controls, and on the size of the tumour.

NCI lists these signs: morning headache or headache that goes away after vomiting, vision, hearing and speech problems, seizures, nausea and vomiting, personality changes, loss of balance, weakness, and unusual sleepiness. Speech and language problems are on that list, which is what Coutts's book is entirely about.

On grade, NCI describes the WHO system running from grade I, low-grade and slow-growing, to grade IV, high-grade and rapidly growing. Grade I tumours may sometimes be completely removed by surgery. Grade IV tumours usually cannot be. NCI lists these treatment options: surgery, radiation therapy, chemotherapy, targeted therapy and active surveillance. Surgery is used both to diagnose and to treat. NCI states that prognosis depends on tumour type and grade, on location, on whether it can be removed, and on chromosomal changes. It gives no single survival figure.

For the symptom picture see brain tumor symptoms and for the classification see brain tumor types.

NCI has material on both of the roles Coutts was doing at once.

On caregiving, NCI describes the work like this. It means helping with day-to-day things such as appointments and food. It means managing medicines and helping with daily living. It also means coordinating care and giving emotional support. It names the pattern the book shows. Many caregivers put their own needs and feelings aside to focus on the person with cancer. That is hard to keep up, and not good for the caregiver's health. NCI's list of common experiences also includes role confusion, trouble balancing other duties, guilt about accepting help, and feeling cut off. NCI points caregivers towards support groups, in person, by phone or online. It also points to counsellors, social workers or spiritual advisers, and to organised practical help. See caregiver burnout.

On the child, NCI's guidance on talking to children is blunter than most people expect. Do not pretend everything is okay. Even very young children sense when something is wrong. Telling the truth is better than letting them imagine the worst. Children as young as 18 months begin to notice what is going on around them. NCI lists messages children need to hear. Nothing the child did, thought or said caused the illness. And the child cannot do anything to change the fact of it. It also says it is okay for a child to be upset, angry or scared, and that children need time to ask questions.

Coutts's book, without citing any of that, is a working example of it. She does not hide the illness from her son, and she does not explain it beyond what he asks. See how to tell children about a cancer diagnosis.

Coutts recorded her husband losing language. That is the loss that makes every later conversation impossible.

NCI also describes palliative care. It is available at any point, from diagnosis to the end of life. It is given alongside cancer treatment. A team delivers it. That team may include nurses, dietitians, therapists, chaplains, psychologists and social workers. Caregiver support and practical worries are explicitly in scope. In the book, that kind of help arrives late. It did not have to.

It suits a partner or spouse caring for someone with a brain tumour. That is most true where language or personality is affected. It also suits caregivers who want their less admirable feelings named rather than managed. It suits readers who like demanding prose.

It does not suit someone looking for information about brain tumour treatment, or for a guide to navigating US insurance. It does not suit a reader who needs an encouraging ending, because there is not one. And a caregiver who is barely coping this week may want a shorter, more practical page. This book recreates the experience faithfully.

• The Iceberg — Atlantic Books title page
• The Iceberg — edition record, ISBN 9781782393504 (Open Library)
• NCI — Adult Central Nervous System Tumors Treatment (PDQ) Patient Version
• NCI — Support for Caregivers of Cancer Patients
• NCI — Talking to Children About Your Cancer
• NCI — Palliative Care in Cancer

This page discusses The Iceberg for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care.