At the age of thirty-six, on the verge of completing a decade’s training as a neurosurgeon, Paul Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live. When Breath Becomes Air chronicles Kalanithi’s transformation from a medical student asking what makes a virtuous and meaningful life into a neurosurgeon working in the core of human identity – the brain – and finally into a patient and a new father. What makes life worth living in the face of death? What do you do when when life is catastrophically interrupted? What does it mean to have a child as your own life fades away? Paul Kalanithi died while working on this profoundly moving book, yet his words live on as a guide to us all. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient, from a gifted writer who became both.
In 2015 I was approached by Jacob van der Beugel in my role as a member of the University of York Epidemiology and Cancer Statistics Group (ECSG) research group. He was interested in an artists in residence scheme being supported by the University and in developing an art work that related to the work. We focus our research predominantly on ‘Blood Cancers’ a complex mixture of different malignancies including leukaemias, lymphomas, myeloma. Jacob came to visit our research group on 3-4 occasions across the year and met with researchers, laboratory staff, clinicians and patients. He had come with an initial metaphor ‘concrete cancer’ which describes the situation where the integrity of concrete chemically deteriorates, potentially exposing structural metal reinforcement and leading to the failure of structures. The work of the ECSG is broad in scope and we talked about many aspects of this – but the element that caught his imagination was the work we had done on the social patterning of survival for patients with blood cancers. Essentially, the fact that patients from poorer backgrounds have shorter survival – not unusual, but normally made more complex by the fact that poorer people are more likely to develop cancer, which isn’t the case for blood cancers. We talked a lot about the processes and methods of observational epidemiology in which we seek to accurately represent patterns and distributions of disease in populations and some of the challenges that this poses.
An example of the way we’d normally present such patterns – survival curves for patients with Chronic Myeloid Leukaemia by the Index of Multiple Deprivation (IMD) for the area they live at diagnosis (1-3 more affluent, 4-5 less affluent)
In the end Jacob represented both these ideas and the methods of epidemiology in a ‘diptych’ of two panels – one representing the ‘world as it is’ and one representing the way in which epidemiologists model observed data. He used concrete as an example of a medium that was associated both with high prestige constructions (when polished) and in cheap functional structures where the finish might be rough. He used rust to represent blood trails – and in a way we often use in teaching – showed the length of life by the length of the path.
In ‘Pathways of Patients II’ the shorter, ‘rougher’ experience of patients from less advantaged areas in our regional population is clearly contrasted with the longer, smoother, tracks of those from less deprived areas. The same pattern is present in ‘Pathways of Patients I’, but (as in a real population) the mixture of exposures initially obscures this. The ‘science’ of epidemiology is in part that restructuring of data to reveal the patterns within it.
You can see more of Jacob’s work at his website – this link will take you to more pictures of the pieces, and also some of the artist’s thoughts about it.
‘I seem to have banged on this year rather more than usual. I make no apology for that, nor am I nervous that it will it make a jot of difference. I shall still be thought to be kindly, cosy and essentially harmless. I am in the pigeon-hole marked ‘no threat’ and did I stab Judi Dench with a pitchfork I should still be a teddy bear.’
Alan Bennett’s third collection of prose Keeping On Keeping On follows in the footsteps of the phenomenally successful Writing Home and Untold Stories, each published ten years apart. This latest collection contains Bennett’s peerless diaries 2005 to 2015, reflecting on a decade that saw four premieres at the National Theatre (The Habit of Art, People, Hymn and Cocktail Sticks), a West End double-bill transfer, and the films of The History Boys and The Lady in the Van.
There’s a provocative sermon on private education given before the University at King’s College Chapel, Cambridge, and ‘Baffled at a Bookcase’ offers a passionate defence of the public library. The book includes Denmark Hill, a darkly comic radio play set in suburban south London, as well as Bennett’s reflections on a quarter of a century’s collaboration with Nicholas Hytner. This is an engaging, humane, sharp, funny and unforgettable record of life according to the inimitable Alan Bennett.
“We have to take a good hard look at our own attitude toward death and dying before we can sit quietly and without anxiety next to a terminally ill patient.“ Elisabeth Kubler-Ross
This quote refaces the attached article: Looking at the Dying Patient: The Ferdinand Hodler Paintings of Valentine Godé-Darel Pestalozzi BC. Journal of Clinical Oncology, Vol 20, No 7 (April 1), 2002: pp 1948-1950
The Swiss artist Ferdinand Hodler created a sequence of paintings documenting the death of his young lover Valentine. In the words of the article author ‘He created a series of paintings that force the viewer to face the process of dying. It may be helpful to an oncologist to sense his or her reaction to these visual stages of suffering.’
Click on the article for more of the sequence of paintings…
Iris (or balletgirl-42 as she’s known on the internet dating circuit) is a zookeeper looking for love when she is diagnosed with breast cancer. Overnight, her life becomes populated with a carnival of daunting hospital characters. Despite the attempts of her friends – Maud, Granma Suggs, Larry the Monkey and a group of singing penguins – to comfort her, Iris’s fears begin to encircle her until all she has to cling to is the attention of a lighthouse keeper called sailor_buoy_39.
The Inflatable Woman combines magic realism with the grit of everyday life to create a poignant and surreal journey inside the human psyche.
In his brief life, Chekhov was a doctor, essayist, dramatist and a humanitarian. He saw no conflict between art and science or art and medicine. This collection of stories presents powerful portraits of doctors in their everyday lives, struggling with their own personal problems.
Publisher: Kent State University Press
“Dr Reynolds was a young woman, only a few years older than I was. I rather liked her. We sat down and chatted, exchanging social pleasantries for a while. So, what did the path. results show? Do you know what it is?’ I asked, trying to get down to the issue that had been gnawing at my mind constantly for over a week. I don’t think it will mean that much to you’ she replied. Now, obviously the first question you will have is how long have you got’ she looked directly at me and I’m afraid I can’t tell you.’ I was confused. What was she talking about? I’m sorry’ I started haltingly, I don’t understand what you mean. Do you mean how long it is going to take until I’m better? How long the treatment is going to take?’ No’ she hesitated, I meant how long you have got to live’ she paused and I’m afraid I can’t tell you because I’m not an oncologist.’
Here was another medical word I was expected to understand. What was an oncologist’, and why wasn’t one here, whatever they were? Half-formed questions tumbled around inside my head. To each poorly articulated question that stumbled out of my mouth she seemed to answer I don’t know, I’m not an oncologist.’ She was right, she wasn’t, where was this elusive beast? Come back on Monday morning’ she told me. Her parting remark stuck in my mind. Please don’t go and jump off Sydney Harbour Bridge.’ At least she didn’t attempt to tell me to have a nice weekend’. She didn’t know that I didn’t know I had cancer. She didn’t know.
A Long Walk Home is Rachel Clark’s evocative and moving account of her treatment and experiences with health professionals in Britain and Australia while she was living with, and dying from, cancer. It includes an Epilogue by her twin sister Naomi Jefferies, and learning points for health professionals by John Hasler and David Pendleton.”
‘Better opportunity’ – that’s why Angela’s dad sailed to England from America in 1948 on the Empire Windrush. Six months later her mum joined him in his one room in Earl’s Court…
…Twenty years and four children later, Mr Jacob has become seriously ill and starts to move unsteadily through the care of the National Health Service. As Angela, his youngest, tries to help her mother through this ordeal, she finds herself reliving her childhood years, spent on a council estate in Highbury.
“Untold Stories contains significant previously unpublished work, including a poignant memoir of his family and of growing up in Leeds, together with his much celebrated diary for the years 1996-2004, and numerous other exceptional essays, reviews and comic pieces. Bennett, as always, is both amusing and poignant, whether he’s discussing his modest childhood or his work with figures such as Maggie Smith, Thora Hird and John Gielgud.”
“Mary Anne Schwalbe is waiting for her chemotherapy treatments when Will casually asks her what she’s reading. The conversation they have grows into tradition: soon they are reading the same books so they can have something to talk about in the hospital waiting room. Their choices range from classic (Howards End) to popular (The Girl with the Dragon Tattoo), from fantastic (The Hobbit) to spiritual (Jon Kabat-Zinn), with many in between. We hear their passion for reading and their love for each other in their intimate and searching discussions. A profoundly moving testament to the power of love between a child and parent, and the power of reading in our lives.”
Publisher: Two Roads
“The Bright Side tells the on-going story of a young doctor who is living with a rare and aggressive type of sarcoma that will end her life prematurely. It explores her return to work after a prolonged period of absence, her innermost thoughts and reflections about dying and her continuing interactions with health services. It also portrays her determined attitude to maintain positivity despite her tragic circumstances and her openness about dying.”
“A true story of one doctor’s journey as a patient coming to terms with a terminal cancer diagnosis. The hope is that by reading it healthcare professionals will be better able understand exactly what being the patient is really like and how their behaviours, no matter how small can impact massively on the people they look after. It is also a story of personal battles with control, learning how and when to relinquish this.”
“What happens when a shoe-crazy, lipstick-obsessed, wine-swilling, pasta-slurping, fashion-fanatic, about-to-get-married big-city girl cartoonist with a fabulous life finds . . . a lump in her breast?” That’s the question that sets this powerful, funny, and poignant graphic memoir in motion. In vivid color and with a taboo-breaking sense of humor, Marisa Acocella Marchetto tells the story of her eleven-month, ultimately triumphant bout with breast cancer—from diagnosis to cure, and every challenging step in between.
At 31, Matilda Tristram was 17 weeks pregnant and looking forward to having her first baby. Then she discovered she had bowel cancer.
This touching and hilarious graphic memoir, which is never morose or self-pitying, starts at the moment Matilda was diagnosed and ends when her course of chemotherapy finishes in October 2013. Recording the awkward conversations, the highs and lows of treatment, the mixed blessings of receiving ‘Get Well’ cards, and the reality of still having to queue too long for croissants, Matilda captures her experiences with style and warmth. Along the way she learns to cherish the small details of life. Her beautiful and boisterous son was born without complications and is reliably keeping her up most nights.
An honest, unflinching, and sometimes humorous look at the practical and emotional effect that serious illness can have on patients and their families, “Mom’s Cancer” is a story of hope–uniquely told in words and illustrations. Brian Fies is a freelance journalist whose mother was diagnosed with lung cancer. As he and his two sisters struggled with the effects of her illness and her ongoing recovery from treatment, Brian processed the experience in his journal, which took the form of words and pictures.
One day David Small awoke from a supposedly harmless operation to discover that he had been transformed into a virtual mute. A vocal cord removed, his throat slashed and stitched together like a bloody boot, the fourteen-year-old boy had not been told that he had cancer and was expected to die. In Stitches, Small, the award-winning children’s illustrator and author, re-creates this terrifying event in a life story that might have been imagined by Kafka. As the images painfully tumble out, one by one, we gain a ringside seat at a gothic family drama where David-a highly anxious yet supremely talented child-all too often became the unwitting object of his parents’ buried frustration and rage. Believing that they were trying to do their best, David’s parents did just the reverse. Edward Small, a Detroit physician, who vented his own anger by hitting a punching bag, was convinced that he could cure his young son’s respiratory problems with heavy doses of radiation, possibly causing David’s cancer. Elizabeth, David’s mother, tyrannically stingy and excessively scolding, ran the Small household under a cone of silence where emotions, especially her own, were hidden. Depicting this coming-of-age story with dazzling, kaleidoscopic images that turn nightmare into fairy tale, Small tells us of his journey from sickly child to cancer patient, to the troubled teen whose risky decision to run away from home at sixteen-with nothing more than the dream of becoming an artist-will resonate as the ultimate survival statement. A silent movie masquerading as a book, Stitches renders a broken world suddenly seamless and beautiful again.
Publisher: W. W. Norton & Company
Aurora and Emma are mother and daughter who march to different drummers. Beginning with Emma’s marriage, Aurora shows how difficult and loving she can be. The movie covers several years of their lives as each finds different reasons to go on living and find joy. Aurora’s interludes with Garrett Breedlove, retired astronaut and next door neighbor are quite striking. In the end, different people show their love in very different ways.
Producers: James L. Brooks
Director: James L. Brooks
Writer: James L. Brooks
Jack McKee is a doctor with it all: he’s successful, he’s rich, and he has no problems…. until he is diagnosed with throat cancer. Now that he has seen medicine, hospitals, and doctors from a patient’s perspective, he realises that there is more to being a doctor than surgery and prescriptions.
Producers: Laura Ziskin
Director: Randa Haines
Writer: Robert Caswell
The men represented in this painting are professors in the Department of Surgery and Molecular Oncology at Ninewells Hospital and Medical School in Dundee. The Head of Department and Professor of Surgery, Sir Alfred Cuschieri, is in the centre. Sir David Lane, Professor of Molecular Oncology is on the right. On the left is surgeon Professor Steele. All three men appear to have been disturbed in the middle of their duties: Professor Steele has blood on his hands and Sir Alfred Cuschieri is holding a medical implement. The luminous quality of the paint makes the figures look almost ghostly, expressing the sense of horror and anxiety associated with cancer.
When he discovers that he has terminal cancer, retired heart surgeon Ben Givens refuses to simply sit back and wait. Instead he takes his two beloved dogs and goes on a last hunt, determined to end his life on his own terms.
But as the people he meets and the memories over which he lingers remind him of the mystery of life’s endurance, his trek into the American West becomes much more than a final journey.
Author: Guterson, David
Title: East of the mountains
Publisher: Bloomsbury Publishing PLC
Perhaps the antidote to John Diamond and Ruth Picardie? This is another dying journalist – but this time the emphasis is definitely on humour, except of course …. he is dying. The book is a sequence of letters by the humourist Miles Kington to his literary agent suggesting book titles that he could write, to make ‘…cancer work for its living‘. Written after his diagnosis with pancreatic cancer, this is a very funny book and although it doesn’t set out to pass on deep messages about life and death, I sort of feel it does.
When Ruth Picardie died from complications following the misdiagnosis of breast cancer in September 1997, leaving a young husband and two-year-old twins, thousands mourned who’d never met her. Ruth’s column in “The Observer” recorded with scalding honesty the progress of her illness and her feelings about living with terminal cancer. “Before I Say Goodbye” brings together these pieces, Ruth’s e-mail correspondence with friends, selected letters from readers, and accounts of Ruth’s last days by her sister, Justine, and husband Matt.
Author: Picardie, Ruth
Title: Before I say goodbye
This Radio Play is made available via the Education Recording Agency (ERA) licence, as such the following link will only work via a computer on the HYMS network. >click here<
When Megan first tells Anton that she’s afraid something’s wrong, he brushes her fears away. Later, when they’re sitting in the waiting room at the Oncology Department, he still refuses to believe that Megan is ill. Even when the diagnosis of cervical cancer is given, he struggles to accept it. He hopes
against hope for a miracle. But in this story there is no miracle, and Meic Povey’s play traces the journey of a man faced with losing the woman he loves. It’s a searingly honest account, based on his own experience, of facing up to the reality of a partner’s terminal illness
One of the aspects of this drama that I felt was particularly convincing was the tension that often surfaced between the partners. As you just hear the two voices of Anton and Megan, without anything from a ‘professional’ voice – it made me think ‘I wonder what they were saying?’. Where does Megan get her version of the staging of cervical cancer? I think you could stop the play at any number of points and ask, ‘What might a health professional say/do/not do/not say at this point?’
In The Emperor of All Maladies, Siddhartha Mukherjee, doctor, researcher and award-winning science writer, examines cancer with a cellular biologist’s precision, a historian’s perspective, and a biographer’s passion. The result is an astonishingly lucid and eloquent chronicle of a disease humans have lived with – and perished from – for more than five thousand years.
For reasons too dull to explain I had to read this book in 7 days and it’s a consequence of the excellence of the writing (and two long train journeys) that I was able to get through the 600 pages quite easily. It’s hard to believe that this is Mukherjee’s first book.If 600 pages is too daunting, it’s possible to dip into sections and still gain something.Students may find the accounts of early treatment experiments and trials from the late 19th and 20th centuries fascinating and informative. The book is quite US-centred, although there are great summaries of the classic UK Doll and Hill epidemiological studies into smoking and lung cancer.
There are memorable chapters on patients in treatment trials, that give insights into what it must be like from the patient’s point of view.
An excellent read.
I think this book provides something which is hugely helpful in learning medicine, a ‘narrative’ that links science, its application through therapeutics and the human story that follows this – for both patients and scientist/clinician. Trying to ‘make sense’ of isolated pieces of knowledge whilst being disconnected from the way current understanding has developed from past perspectives is hard – reading this book may make that job a bit easier. I learned a huge amount from this book and whilst it has both a US and clinical oncology ‘bias’ this didn’t detract from the enjoyment.
“A Hospital Odyssey” is an outrageously imaginative voyage through illness and healing. Drawing on the most recent biomedical research into stem cells and cancer, the poem is a journey through the body’s inner space and the strange habitats created by disease, including the chimeras people see when they’re unwell. Maris, whose husband, Hardy, has been diagnosed with cancer, is separated from him. Her mythical journey leads though a surreal landscape, peopled by true and false physicians, god-celebrities, rabid statues, diseases hunting healthy bodies and a microbes holding their annual ball.
Cancer Ward examines the relationship of a group of people in the cancer ward of a provincial Soviet hospital in 1955, two years after Stalin’s death. We see them under normal circumstances, and also reexamined at the eleventh hour of illness. Together they represent a remarkable cross-section of contemporary Russian characters and attitudes. The experiences of the central character, Oleg Kostoglotov, closely reflect the author’s own: Solzhenitsyn himself became a patient in a cancer ward in the mid-1950s, on his release from a labor camp, and later recovered.
Author: Solzhenitsyn, Aleksandr I.
Title: Cancer ward
This is a fascinating read, especially if you’re interested in history. There’s a lot of details about treatments themselves (I had no idea that radiotherapy was so available back in the 50’s). Other social details are pretty suprising, the medical staff is very female dominated, perhaps because all the men had been wiped out in the war. This contrasts with Douglas’s ‘Houseman’s tale‘, set in Britain in the 70s which I think has one female doctor who is barely mentioned.
One of the most striking things about the book, is what hyms would describe as a lack of “patient centred care”. The doctors, who are depicted as quite noble, even heroic characters (for example suffering radiation poisioning in the course of their work) refuse to discuss diagnosis or prognosis with patients. In fact those kind of discussions are expressly prohibited and they use latin terms (more foreign to russian than english) to keep information from the patients. They interpret the terrible knowledge they have as the doctor’s own burden which it is their duty to shoulder alone. On being treated herself for cancer one of the doctors insists on this rule and tells her own doctor that she has no right to information.
So the socialised medicine in the ‘cancer ward’ is a kind of benign authoritarian regime, where clinicians know best and patients own wishes are overrulled, for their own good. Some have said this is a metaphor for the whole soviet system. I’m not convinced its that simple (Solzhenitsyn suffered dreadfully in the gulag, he clearly admires the doctors in this book, I can’t believe he sees them as stalinist beaurocrats).
“Her name was Henrietta Lacks, but scientists know her as HeLa. Born a poor black tobacco farmer, her cancer cells — taken without her knowledge — became a multimillion-dollar industry and one of the most important tools in medicine. Yet Henrietta’s family did not learn of her ‘immortality’ until more than twenty years after her death, with devastating consequences . . . Balancing the beauty and drama of scientific discovery with dark questions about who owns the stuff our bodies are made of, The Immortal Life of Henrietta Lacks is an extraordinary journey in search of the soul and story of a real woman, whose cells live on today in all four corners of the world.”
This book won the 2010 Wellcome Trust Book Prize, and having read it I’d certainly agree with one of the judge’s comments “It has something of everything – a compelling science story, an emotional personal story and intriguing ethical dilemmas – and all woven together and written with great style.”
It made me think again about the ethics of the ‘ownership’ of our bodies – and about the changes in what is acceptable practice in science across the last half century.
It’s not the first time this story has been told – for a link to a 1997 BBC documentary that is mentioned in the book click here
In Illness as Metaphor , Sontag argues that the myths and metaphors surrounding disease can kill by instilling shame and guilt in the sick, thus delaying them from seeking treatment,” wrote PW. She sees, and discusses provocatively, a similar process at work in the case of AIDS.
Author: Sontag, Susan
Title: Illness as metaphor, and AIDS and its metaphors
This is the first book I read ‘because it was on the ‘worth a look’ list’. It is really two extended essays on what Sontag saw as the dangers of ‘metaphor’. When we ‘wage a war on cancer’ when we seek ‘magic bullets’ in what ways do these ‘forms of words’ shape what may actually happen. It dates slightly, the first essay provoked by Sontag’s own cancer diagnosis seems to me wrapped up in criticising a ‘think positive’ ethos that has perhaps somewhat changed, the AIDS essay again is of its time, with some aspects of the epidemic having now moved on. Not a pool-side read, but a bright and lively mind, and good writing that will make you think.
Shortly before his 44th birthday, John Diamond received a call from the doctor who had removed a lump from his neck. Having been assured for the previous 2 years that this was a benign cyst, Diamond was told that it was, in fact, cancerous. Suddenly, this man who’d until this point been one of the world’s greatest hypochondriacs, was genuinely faced with mortality. And what he saw scared the wits out of him.
Author: Diamond, John
Title: C: because cowards get cancer too
Publisher: London, etc., Vermilion
“Anyone who has ever spent any time in a hospital or in a hospital waiting room will love these poems, anyone who has ever been to the doctor or felt ill or had to fill in a form will love these poems. That covers everyone. Here are poems about a difficult, scary subject, cancer, that circle around it lightly, on light dancing feet, and every so often whack you on the head. Oddly enough, Sudden Collapses is compulsively readable. The poems are funny, irreverent, moving and never sentimental. You can recognise yourself in them, recognise your family. They are warm, full of compassion: Julia Darling’s imagination is a shining bright light.” Jackie Kay
Title: Sudden Collapses in Public Places
Author: Darling, Julia
Publisher: Arc Publications
Everyone pussyfoots around the world of alternative medicine because it is now a multi-million pound industry that frequently makes claims about curing everything from colds to cancer and gets away with it. John Diamond’s look at the whole world of complimentary medicine is based on experience, fact and thousands of anecdotes both supporting and anti, from the millions of people who read his columns and responded, emailing their stories and opinions back to him. He died before he could finish it, and the second part of the book is a collection of his newspaper and magazine columns.
John Cookson (HYMS): “I like Diamond’s Snake Oil because it debunks much alternative cancer ‘treatments’ with a journalists penetrating insight. He had throat cancer (he smoked) and it seems as if the diagnosis was made quite late which is often the case as the primary remains silent for a long time.”
Author: Diamond, John
Title: Snake oil and other preoccupations