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cancer

Film Review: Patient

29 Sep, 16 | by cquigley

patient_still_looking_worried_in_hallway-1

 

The ten rules of doctors’ engagement

 

Review of Patient, Colombia, 2015, directed by Jorge Caballero

Screening at the London Film Festival, 15 and 16th October 2016

https://whatson.bfi.org.uk/lff/Online/seatSelect.asp

https://whatson.bfi.org.uk/lff/Online/mapSelect.asp

 

Reviewed by Dr Khalid Ali, Screening Room Editor

 

The Oxford Dictionary defines the word ‘patient’ as ‘a person receiving or registered to receive medical treatment’. Jorge Caballero uses ‘patient’ as the title for his documentary film, but we never get the see the patient, Leidy, a 23-year old girl who is bed-bound with an aggressive form of neuro-ectodermal tumour. The focus of the narrative is Nubia, Leidy’s long-suffering and ‘patient’ mother. Nubia is constantly with her daughter, pushing her hospital bed around to chemotherapy sessions, and for never-ending x-rays. When the doctors declare that the cancer is in its most-aggressive and terminal stage, Nubia decides to take her daughter home. However, first she needs an adequate supply of pain-relief medication. Securing these crucial medicines for Leidy’s comfort and dignity is a never ending quest between several hospital departments for official approval. Finding an ambulance to take them home is another harrowing exercise in endless bureaucracy. Nubia’s exhausting daily routine is only interrupted by brief moments of following ‘Colombia’s top model’ contest on TV.

Watching Patient reminded me of this statement from the Hippocrates oath: ‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug’.

Here are the ten lessons that doctors can learn from ‘Patient’:

*Don’t be afraid to say ‘I don’t know’, if you don’t know, don’t waffle: In one scene a junior doctor tries to comfort Nubia by asking her to keep ‘calm, be positive and tranquil’ when she was actually asking for an honest opinion of her daughter’s prognosis.

*Avoid jargon: in another scene, doctors explaining a possible tracheostomy tube for Leidy is a master-class in communicating the need for a complicated procedure with its associated risks and benefits- sensitively handled, ensuring understanding and offering the chance for questions and comments.

*Show empathy towards patients and their families: in several exchanges between Nubia and doctors caring for her daughter, it was clearly obvious that she was desperately seeking a professional to hold her hand in empathy.

*Reassure patients and families when dealing with intractable pain, and encourage them to ask if pain is not controlled: Nubia was constantly blaming herself for not getting the dose of pain relief right. She never questioned the hospital doctors’ prescribing competency.

*Plan ahead and get medications ready for a timely discharge: Booking an ambulance, getting the insurance paper work ready, and collecting her daughter’s medicines on the discharge day was a ‘mission impossible’ for Nubia.

*Respect patients’ confidentiality: In a sensitive approach to Leidy’s agony as a young girl at the end of her life, the film director never shows her face in a powerful statement of maintaining her dignity, and upholding her capacity in choosing not to be filmed.

*Care for the carer: after grilling journeys between various hospital departments, and home trips to get Leidy what she needs, it was apparent that Nubia wanted someone to ask her how she felt, and perhaps suggest some respite.

*Offer spiritual support: no mention was made of Nubia’s spiritual beliefs or if she practised any religion in the film. It might have been something that she was afraid to ask for! So as a doctor, do not forget to ask.

*Encourage patients and their families to share their hospital experience with each other: in a brief encounter with a fellow mother of another girl in hospital, Nubia gets to exchange a few tips on how to handle their ill daughters ‘crises’. Through this ‘solidarity and companionship’ both ‘patient mothers’ experienced a transient sense of support.

*Life can be short, so value every moment.

 

 

Address for correspondence

Dr Khalid Ali: Khalid.ali@bsuh.nhs.uk

Poetry Book Review – Cancer Poetry

10 Sep, 16 | by cquigley

 

Ian Twiddy, Cancer Poetry. Palgrave Macmillan, 2015

Reviewed by Sue Spencer

 

Cancer remains one of the most feared of diseases. It evokes dread in the general public and stimulates startling headlines about its insidious and destructive nature. Even as knowledge increases and cancer detection rates improve, this remains the case, despite the fact that cancer is now more treatable and curable than ever. Given this shift in experience of cancer, I had hoped that Cancer Poetry might provide an insight into how poets and poetry have helped humankind navigate this tricky terrain – a big ask I realise, but I do believe that poetry has the potential to achieve this.

I looked forward to reviewing this book. As a nurse, an educator and a writer, I am committed to improving patient experience of health care. I believe that creative approaches can be very powerful in terms of bridging the gap between patients and professionals in the clinical encounter. I am committed to Julia Darling’s project of promoting poetry within this arena. Julia’s introduction to The Poetry Cure, where she shared her own experiences of writing poetry whilst being treated for breast cancer herself, exhorts the benefits of poetry in health and illness:

 “I believe that poetry can help you make you better. Poetry is essential, not a frill or a nicety” (1)

Knowing Julia, I also know that she did not see poetry as an elitist enterprise. She created spaces where wonderful poetry could be responded to in an accessible and enabling way. However, the poetry world does have a problem with being perceived as elitist, with discussions around poetry sometimes viewed as alienating and “other worldly”. Many people I encounter do not often see the relevance of poetry to clinical practice until they actually experience its alchemy and find out for themselves how metaphor, metonym, rhythm, patterns of speech and language itself can shed light on the everyday, particularly in the context of health care practice.

I have to confess to finding Cancer Poetry a difficult read, and found myself skipping significant chunks where it did not engage me. I found the author’s sweeping generalisations and unsubstantiated comments particularly irritating. There are no references to psychological and sociological literature that might illuminate what might be “going on” in a poet’s work.

My first question relates to the inspiration behind this book. Why it was written? Was there an intellectual or emotional impetus to analyse this subject? My personal feeling is that Cancer Poetry reads as an intellectual exploration, in contrast to work such as that of Julia Darling, which, by encouraging us to confront raw emotions and to deal with contested realities, establishes the potential for poetry to help patients and professionals during demanding treatment regimes. Cancer Poetry is a dense book, with an undoubtedly rich content, but I struggled to grasp its potential within the context of improving the experiences of people living with cancer and its treatment.

The opening chapter attempts to chart the terrain, but seems to end up being more of a celebration of Paul Muldoon and his work. There appears to be an ambivalence about whether cancer should be written about and a reluctance to state a position as to whether it is a worthy subject and whether “good” poetry results. There is also a limited review of the foray of other disciplines into this subject – for example, the role of linguistic scholars and the pervasiveness of the war metaphors used to present people’s experiences of living with cancer. I disagree with the author when he states that a similar language is not used in the discourse around other conditions – we hear of ‘wars’ on obesity, people ‘battling’ neurological degeneration etc.

The opening chapter discusses high profile survivors and battlers of cancer, for example Jane Tomlinson and Lance Armstrong, but all of this misses the point that these “celebrity” patients are not typical or representative of most people’s experiences.

The chapters that follow are categorised around specific themes and this is where I found more traction and some engagement in relation to the discussion. However, I would have liked to have known why the author chose the poets that he did. After all, there is a huge body of poetry written about cancer experiences from a range of perspectives and the analysis in this book seems partial and limited. There is also little discussion of the poems in the context of the poets’ other works. It can be very narrow to discuss poems solely on the subject they explore rather than within the landscape of a poet’s other work or within a historical or cultural context. People’s experiences of cancer are often shaped by their health care encounters, cancer treatments and their side effects, relationships with health care professionals, and ongoing uncertainties around choice and prognosis. All of this must inform poetry written on this subject, yet I found myself not being able to grasp the arguments presented in Cancer Poetry.

This book represents all that I find difficult and challenging in the world of medical humanities. For me, Cancer Poetry is not an example of a melding of knowledge and theory. It is a book of literary criticism on poems written about cancer. I may be wrong, but if we want to engage health care practitioners in the merits of the humanities, to enhance their practice we need to focus less on intellectual silos and more on making connections, sharing insights, creating synergy and stimulating new thinking. I wish this book had done that.

 

Reference

  1. The Poetry Cure edited by Julia darling and Cynthia Fuller 2005 BloodAxe Books http://www.bloodaxebooks.com/

Poetry Book Review: Thinks Itself a Hawk

22 Jul, 16 | by cquigley

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Review: Thinks Itself A Hawk, Wendy French, The Hippocrates Press, 2016.

by Rebecca Goss

On June 30th this year, I headed to University College London Hospital (UCLH) Macmillan Cancer Centre to listen to Wendy French read from her new poetry collection Thinks Itself A Hawk. As I approached the revolving doors in the middle of the wide glass frontage, a woman was leaving the building via the doors’ slow spin. She was wearing a headscarf, and carrying several plastic bags of what looked like shopping or bundled belongings. She was alone. She looked tired. She looked sad. And she looked ill. I have spent a lot of time in hospitals, but I have never come close to cancer. As the doors ejected us in opposite directions it began to dawn on me where I was going, and what I might see. My naivety overwhelmed me. I thought I was going to a building about cancer, not a building that contained it.

In 2014, Wendy French became UCLH’s first ever poet in residence at the Macmillan Cancer Centre. To quote from the foreword to Thinks Itself a Hawk, French’s resulting book, ‘the residency’s intention was to extend access to poetry and the spoken word and assist with improving patients’ well-being.’ French ran weekly creative writing groups for patients and wrote her own poetry in response to her time spent at the centre.

Throughout the book there are many references to walking and movement and ‘openings’ – the paths our lives take. An early poem in the collection is titled Cancer’s Daily Walk. Cancer itself ‘will walk in the town, in the city,//enter St. Paul’s when doors are open,/will walk……where its feet take it.’ But eventually the cancer enters ‘distracted bodies/whose cells are greedy for change’ and then all routes will lead to those revolving doors. French is there to document the process of arrival as people ‘try to shake off//their fears as they shake/their coats from the rain.’ (The Waiting Game)

Cancer’s impact on daily life and family relationships is all studied here. A poignant stanza in Today’s Appointment shows how family ‘outings’ have been transformed with ‘a wave of a dark wand’. Rather than trips out with picnics the sick now carry ‘bags of medication, nebulisers/in a field of white coats.’

In an environment at times harrowing and bleak, French is able to show us the real people who live with cancer. French sees the blatant effort needed to survive – ‘blood is exchanged like currency’ – yet we can also tell French got extremely close to these people. French respects them, utterly, as do the medical staff, but French is able to give them something not always prescribed. She gives them time. ‘We sit together not talking but dawdling…’ (In the Wood). ‘She tells me that pain is unpredictable/but there’s refuge in books and music.’ (This Girl).

French accepts there is a world inside the centre, and a world outside it. Referring to a tunnelled walkway that connects the Macmillan Centre to the rest of UCLH, French writes ‘down here…time is marked differently…We know we are unique we hold our heads high/and picture the outside.’ (Because)

Illness can cut people off from the ‘real’ world, but French is keen to show that the Macmillan Centre does not just house patients. Behind its doors are patients’ relatives, clinicians, volunteers, ambulance drivers, catering staff, Kingsley the ‘concierge’ – everyone is accounted for, and illness feels less isolating as a result. I remember hearing the broadcaster Andrew Marr in a radio interview about his stroke say that illness is nothing to be ashamed of. French’s poems take the shame away from suffering by scattering light on everyone involved. In Mammogram, a witty but never crass depiction of a medical examination, we focus on a list of apologetic utterings from the clinician: ‘Unfortunately I have to ask you to put your breast here/Unfortunately this may hurt for five seconds/Unfortunately we have to do this five times’. To see the appointment from the medic’s perspective highlights issues of identity in the book. The repetitive use of ‘unfortunately’ hints at the ‘human being’ behind the façade of ‘doctor’.

The latter section of the book concentrates on the story of Zipora, aged 66 when French first met her, and suffering from aggressive ovarian cancer. Zipora died during French’s residency. Before her death, Zipora shared much about her life as a Jewish woman coming from what the book’s blurb describes as ‘the darkest days of the twentieth century’. It is a very moving sequence, interspersed with letters written by Zipora to her mother. These letters were never sent, but shared with French, and French mirrors each letter with a poetic response.

Guy Noble, Arts Curator at UCLH, writes of French’s work “It touches on the challenges faced by people living with or facing a cancer diagnosis, and reflects upon the “everyday” which perhaps many of us overlook.’ I agree with Guy’s statement, but something we also overlook is that severe illness can define a person. We have to remember that there was a whole life before illness set in. Zipora’s story is a valuable addition to the book, as we learn of such a life. Through both French’s voice, and Zipora’s, we discover a family’s lineage fractured by war, a child orphaned by the age of two and raised in a kibbutz, a marriage not always happy – it’s all survival of a different kind. French’s poems reflecting on Zipora’s story are tender, wise and considerate, and we can only be grateful French was there to record it.

Thinks itself A Hawk is a moving, candid, illuminating and necessary collection. We are drawn to look closely at illness and suffering, the poet never once shying from the awfulness of things. But there is gentleness too. Reading the book is like having French push open a door, beckon us, and with her arm around our shoulders, she tells us to look. And all the time we’re looking, French is there, watching with us. She is the poet, the observer, the chronicler and the guide.

 

 

 

 

 

 

The Reading Room: When Breath Becomes Air

9 May, 16 | by cquigley

 

Hope, Oncology and Death

Seamus O’Mahony

 

When Breath Becomes Air by Paul Kalanithi. London: The Bodely Head, 2016.

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Paul Kalanithi was nearing the end of his neurosurgical training at Stanford when aged thirty-six, he was diagnosed with stage IV lung cancer. He had never smoked. He was referred to an oncologist specializing in lung cancer. “Emma Hayward” – not her real name – is a central figure in his posthumously-published memoir When Breath Become Air. At their first consultation, Emma refused to discuss survival statistics for stage IV lung cancer, but encouraged Kalanithi to return to work as a surgeon. I shared Kalanithi’s initial reaction: “Go back to work? What is she talking about? Is she delusional?” He argues that for the patient, cancer survival statistics are of little help or succour: “It occurred to me that my relationship with statistics changed as soon as I became one . . . Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

But statistics and probability were important for Kalanithi. Examining his options, he reasoned: “Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases.” After an initial encouraging response to chemotherapy, his oncologist is wildly optimistic:

Going over the images with me, Emma said, “I don’t know how long you’ve got, but I will say this: the patient I saw just before you today has been on Tarceva for seven years without a problem. You’ve still got a ways to go before we’re that comfortable with your cancer. But looking at you, thinking about ten years is not crazy.”

As it turned out, Kalanithi survived for twenty-two months following his diagnosis, some distance short of ten years. Encouraged by his oncologist’s optimism, as well as Samuel Beckett’s famous exhortation (“I can’t go on. I’ll go on”), he returned to work as a surgeon: “One part of me exulted at the prospect of ten years. Another part wished she’d said, “Going back to being a neurosurgeon is crazy for you – pick something easier.”” Returning to the operating theatre, he had to lie down during his first case, but “over the next couple of weeks, my strength continued to improve, as did my fluency and technique.” Soon, however, the stark reality of his disease caught up with him:

But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl into bed . . .

Inevitably, as his disease progressed, he knew he could no longer work as a surgeon. When a CT scan showed that his disease was advancing again, “Emma Hayward” managed to put a defiant, Churchillian spin on the situation:

“This is not the end,” she said, a line she must have used a thousand times – after all, did I not use similar speeches to my own patients? – to those seeking impossible answers. “Or even the beginning of the end. This is just the end of the beginning.”

And I felt better.

On the day he was due to attend the graduation ceremony from his residency program, Kalanithi was taken suddenly ill, and ended up in the Intensive Care Unit, where various specialists, including nephrologists, endocrinologists, intensivists and gastroenterologists squabbled over his treatment. Kalanithi refers to this as “the WICOS problem” – Who Is the Captain Of the Ship? Emma – who had been away on holiday – returned, and took over the role of captain. Having pulled her patient through this crisis, she reverted to her relentless optimism: “” You have five good years left,” she said.” Kalanithi, however, saw this wishful, magical thinking for what it was: “She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea.” He is remarkably forgiving of this fudging and fibbing, this hesitation to be brave:

There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss. Doctors, it turns out, need hope too.

“Emma Hayward”, like many American oncologists, is part conventional cancer doctor, part shaman. She seems to have been able to simultaneously believe two truths. The conventional cancer doctor part of her surely knew that Kalanithi was, at that point in his illness, unlikely to survive five months, let alone five years, yet the shaman part of her half believed the lie she was telling her patient and herself. Her no doubt well-intentioned exaggeration of Kalanithi’s survival prospects led him to take the ill-advised decision to go back to work as a surgeon, when his remaining time might have been more fruitfully spent with his family and his books.

Kalanithi muses on the nature of hope in terminal illness:

When I talked about hope, then, did I really mean “Leave some room for un-founded desire?” No. . . So did I mean “Leave some room for a statistically improbable but still plausible outcome – a survival just above the measured 95 percent confidence interval.” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

Atul Gawande wrote how the entire edifice of American cancer treatment is based on the assumption that all patients with advanced cancer are in the small, statistically favoured end of the bell-curve, the medical equivalent, he observed, “of handing out lottery tickets.” Cancer patients are routinely treated on this assumption (or hope), but are not prepared for an outcome – death −  which is overwhelmingly more likely. Optimists would cite the example of the palaeontologist and writer Stephen Jay Gould, and his famous essay, The Median is not the Message. Diagnosed with a rare form of cancer (primary peritoneal mesothelioma), Gould looked up the survival statistics, and found the median survival was just eight months. He noticed, however, that the survival bell-curve was not symmetrical, that it was right-skewed, with a small minority of long-term survivors. Gould reasoned that he might just be in this small minority: “I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment.” He was right: he survived for twenty years, dying of an unrelated cancer. I would imagine that this essay is holy scripture for American oncologists.

I am, I confess, an oncology apostate. Cancer treatment seems to offer some patients a toxic combination of false hopes and a bad death. And the oncology community itself acknowledges this. The Lancet Oncology Commission produced a  lengthy report in 2011 called Delivering Affordable Cancer Care in Developed Countries : “The medical profession and the health-care industry have created unrealistic expectations of arrest of disease and death. This set of expectations allows inappropriate application of relatively ineffective therapies . . . cancer treatment is becoming a culture of excess.”

Can we give our patients hope, yet still be honest with them? “Hope” has acquired a very narrow meaning in the cancer setting, namely, an expectation of long-term survival. But for our patients, hope can mean all sorts of things: a reassurance that they will not suffer unbearably, an opportunity to settle affairs and spend time with family, a sure knowledge that their doctor will accompany them on the road as an amicus mortis. Giving hope does not mean creating an atmosphere of histrionic pretence, an atmosphere which inevitably explodes as the end nears. Hope and honesty are not incompatible.

Unfortunately, honesty is heavily disincentivized in modern medicine. A study published in the New England Journal of Medicine in 2012 found that the less patients with advanced cancer knew about their prognosis, the happier they were with their doctors. Nearly all families, and many patients, prefer the Lie. Although he eventually realized that his oncologist was telling him what she thought he wanted to hear, Paul Kalanithi believed in, and acted on, her initial over-optimistic prognosis. If a  man as well-informed and intelligent as Kalanithi could buy the well-intentioned Lie, what hope for the “ordinary” patient?

 

Seamus O’Mahony’s book The Way We Die Now was published on May 5 by Head of Zeus.

 

The Reading Room: A review of ‘Malignant: How Cancer Becomes Us’

16 Sep, 15 | by cquigley

 

Malignant: How Cancer Becomes Us by S. Lochlann Jain. Berkeley: University of California Press, 2013.

 

Reviewed by Mary Anglin, Department of Anthropology, University of Kentucky

 

At the age of thirty-six, Lochlann Jain embarked on a journey for which neither her anthropological training nor her upbringing as “a reticent Canadian” and the daughter of a physician could fully prepare her. Diagnosed with advanced breast cancer, but only after a protracted effort to have her health concerns taken seriously, Jain next undertook an aggressive course of treatment comprised of double mastectomy, radiation, and chemotherapy. Thereafter she sought healing and “new vocabulary” through her involvement in support groups and retreats, as well as a relentless succession of funerals that attested to cancer’s gravity and the significance of community. Nonetheless, it is the ordinariness of that experience which Jain has chosen to highlight through her account of how “cancer has become a central, silent, ubiquitous player in twentieth- and twenty-first century America” (2013:5).

Cancer’s iconic status in the United States, and that of breast cancer more specifically, is exemplified by such events and textual representations as the proliferation of first-person narratives, beginning with Rose Kushner’s Breast Cancer: A Personal History and an Investigative Report (1975) and Betty Rollin’s First, You Cry (1976); President Richard Nixon’s declaration of a “war on cancer” with the National Cancer Act of 1971; the maturation of sociological and anthropological analyses of cancer, as well as those of public health and clinical researchers; and, more recently, the tipping point of saturation by cultural/commercial imagery which Barron Lerner (2010) has dubbed “pink ribbon fatigue.” From the outset, journalists like Kushner and Rollins did more than connect the personal with the political, to borrow the phrasing of the time. They altered lay and professional understandings of the disease, and inspired generations of advocacy. In a quest to separate biopsy procedures from the surgical treatment of breast cancer, for example, Kushner challenged the singular authority of the physician and championed patients’ rights to informed consent. Ten years prior, electing not to disclose her own health status lest her research findings appear biased, Rachel Carson (1962) had called attention to the dominance of the chemicals industry, as well as the magnitude and range of effects from environmental contamination. Cancer etiology turned out to be a political, as well as a scientific, question.

Carson’s influence yet carries forth through the work of self-styled cancer activists as well as environmentalists, public health practitioners, anthropologists, etc., to explore the systemic implications of exposure to that toxic soup: among them, a rising tide of cancer diagnoses in the late twentieth century. American biomedicine’s continued emphasis on traditional or behaviorally focused risk factors to explain the incidence of cancer has also become a topic for public debate and scholarly attention, as has the evolution of a highly powerful, lucrative arm of health care centered around cancer detection/treatment and the politically charged matter of who has access to those services. Likewise, the promotion of pink ribbon culture has received popular and academic scrutiny—not only for its infantilizing logic, but equally its place in the profitable arena of cause marketing and the displacement of attention from uncertainties that still surround breast cancer as an object of knowledge and a diagnosis.

To these discussions, Lochlann Jain brings a distinctive outlook, part anthropological and part autobiographic, which she characterizes as “living in prognosis.” To live in prognosis is to be subjected, without bidding or control, to the “rifle’s spray of statistics” that establish the odds of survival for a given disease. It is a liminal space, summoned forth by the actuality of diagnosis, which Jain (2013:45) has compared to “walking before the firing squad. I am alive. No you are dead.” That vantage point allows no room for glib optimism or the idea of survivorship as a “moral calling” except insofar as health outcomes are inexorably tied to economic factors and social valuation (2013:30-1, 57). And, finally, it is a site for the production of knowledge, most notably about the relationships—“economic, sentimental, medical, personal, ethical, institutional, statistical”—that establish cancer as a social field (2013:4).

In this remarkably forthright book, Lochlann Jain recounts various aspects of her diagnosis with, and treatment for, breast cancer that made the experience depart so vividly from official narratives of biomedical expertise and success. From each “curl of feeling,” Jain “worked [her] way backward from the discomfort to the structures that organized it” (2013:22). Foremost is her anger at the physicians who refused to order a biopsy, since she was a young adult and deemed to be at minimal risk, and her reflections on the counterfactual. “What if” her tumors had been detected sooner and at an earlier stage of disease? Did Jain’s dark complexion and identity as a lesbian have some bearing on the delay? Why wouldn’t the doctors’ errors meet the legal threshold for a “lost chance at survival,” and what does this say about patients’ rights (2013:102)? How have doubt and the absence of definitive information come to be treated as forms of knowledge that justify contemporary economic, legal, and medical institutional arrangements? What are the effects, viewed in terms of the social production and normalizing of cancer—as something that just happens?

At times, Jain’s analysis verges on polemic, as with her description of the “pervasive social taboo” against recognizing the link between environmental pollutants and cancer (2013:190). She usefully points to vested commercial interests, along with the notable failure of U.S. regulatory agencies, as a part of that silence (2013: 5-6, 188-90). Jain’s argument is less persuasive about the complicity of “many Americans”—in supporting the U.S. economy over and against potential health concerns—or the inadequacies of cancer activism (2013:185, see also pp. 86-7). How does one step outside of capitalism? Moreover, little mention is made of the campaigns of women (and men) from New York, Massachusetts, California and across the U.S., sometimes in coalition with environmental justice organizations, to “stop cancer where it starts” by promoting the precautionary principle; providing public testimony; pressing for municipal and state regulation of synthetic chemicals; and conducting research in the public interest through “laboratories of their own,” as with the Silent Spring Institute named for Carson (http://bcaction.org/; http://silentspring.org/about-us; http://www.breastcancerfund.org/clear-science/). Yet these efforts have been significant and are clearly distinguishable from corporate strategies to market sports cars or foundation fundraising activities that “drown… breast cancer in a sea of pink” (2013:86, see also pp. 67-69, 78).

Still, in the finest sense of autoethnography, Jain has created a poetic, deeply resonant portrait of her journey from the view of cancer as an exceptional state, associated with a “different genre of person,” to reflections on the grief, heartbreak and loneliness of living with—and dying from—this disease (2013:216, 220). Through the communal spaces of retreat, Jain learned about the power of self-representation and of bearing witness to the suffering of others. As she observed, “Unlike academic work, which needs to be critiqued to gain credibility and meaning, this work needed only to be heard” (2013:218). Stepping outside the discursive strategies of official accounts, Lochlann Jain has found a way to place individual and collective experiences, with their acknowledgement of sorrow and pain, back into the cultural narrative of cancer. More than elegy or memoir, Malignant provides an incisive, necessary social critique.

 

References Cited

Rachel Carson, Silent Spring. New York: Houghton Mifflin, 1962.

Rose Kushner, Breast Cancer: A Personal History and an Investigative Report. New York: Harcourt Brace Jovanovich, 1975.

Barron H. Lerner, Pink Ribbon Fatigue, The New York Times, October 11, 2010. http://well.blogs.nytimes.com/2010/10/11/pink-ribbon-fatigue/comment-page-8/?_r=0

Betty Rollin, First, You Cry. New York: The New American Library, 1976.

The Reading Room: A review of ‘Jo Spence, The Final Project’

23 Jan, 15 | by cquigley

 

Reviewed by Steven Kenny

 

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Jo Spence, The Final Project, 1991–92. © The Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

 

Jo Spence was a pioneering figure within the realms of photographic discourse, image based political activism and the application of photography as a therapeutic tool. From the early 1970s Spence worked within photographic collaborative modes, first with Terry Dennett to form the Photography Workshop Ltd and later co-establishing the Hackey Flashers and Polysnappers. Spence’s later works turned inwards, directing the gaze towards the body, and specifically her ill/diseased body, and her battles with breast cancer. Such works became charged with a context of survival and transgression, this photography ‘a response to her treatment by the medical establishment and her attempt to navigate its authority through alternative therapies’ (Vasey, s.d).

 

The Final Project is the last documentation of Jo Spence’s work. A book of eerie beauty and macabre investigation, The Final Project stands as the artist’s last photographic output before her death as a result of leukaemia in 1992. The resultant images stand as a testament of confrontation, expectation and spiritual transcendence. Within the book’s inside flap a small quote from Spence provokes thought, ‘“How do you make leukaemia visible? Well, how do you? It’s an impossibility”’. This quote particularly hit home as my uncle also died as a result of leukaemia. At the time I did not understand the condition, only hurt by its ramifications, never truly knowing its pathological effects nor its ability to conceptually redefine the body as sick and the other. The Final Project is a particularly significant book as it highlights the importance of representing the ill body, one that is affected by the invisible and the hidden. Spence’s work depicts a process of struggle, humour and later acceptance during her illness experience.

 

At the end of her career, Spence became too unwell to travel and work. However, the limitations imposed by physical frailty did not stop her determined and strong work ethic. During this time, Spence trawled through her vast photographic archive to create further visual documents from those that make reference to mystic realism. Her output became imbued with the anticipation of death, and as a result the imagery decoded visual artefacts of the iconography of the dead through the layering of two slides, one on top of the other. These objects, once photographed, became talismans of spiritual power, and as Louisa Lee (2013:11) comments, ‘allegorical props for representation’. The skull features consistently throughout The Final Project; in one photograph it engulfs the frame, in another the skull is depicted as a mask to be worn (see front cover above), and in others it appears to be used as an object to physically represent the artist’s presence. The skull is now a contemporary icon, a product of fascination that can be seen across various artistic forms and cultural practices. Her archive takes on its own being, and as a result comes to physically stand in for the artist; her visual history creating new histories that can be once again archived. The photographic montage can thus be seen within the book as a form of catharsis, the constructed image an item of therapeutic power with the ability to define new identities.

Pg-84

Jo Spence, The Final Project, 1991–92. © The Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

 

On examining the work throughout the book, one might conclude that such images may be associated with Sigmund Freud’s theory on the death drive, which explored the apparent conflict between not having knowledge of our inevitable experience of death, and the resurgent repetition of unconscious exploration into gaining such insight. As suggested by the author Maria Walsh (2012), ‘Art can be tied to either of these strands, depending on whether an artwork is on the side of binding the chaotic force of the death drive or repeating its disruptive impulses’. Spence’s work within this series seems to lie preciously between the two, with such works seen as a taming or normalisation of death from acceptance of its iconography, yet becoming entangled within a mode of repetition as images are repeated and spliced with others to form new variations. It must be stressed, however, that such work is not at all chaotic, but is instead peaceful, dreamlike and calmly ambivalent. Thus it becomes difficult to categorise Spence’s final work, also true for her entire lifetime output, which confidently straddles various modes of representation and classification. The work is enigmatic, a photographic force in representing the invisible and redefining the ill body in transgression.

Humour has served as an important emotional device throughout Spence’s career and artistic work, and again is of great importance within The Final Project. Melancholy juxtaposed with laughter creates a darkly humoured conflict, the work’s methodology resembling the artist’s perseverance in contrast to her deteriorating health. Humour is utilised as a concept not only to promote positivism, but also to punctuate the isolation caused by disease. The skull as motif is disseminated as a cryptic symbol of both death itself and of its subsequent control over it. Spence does not trivialise death but instead attempts to seek some comfort and emotional release from its seriousness. As Sheri Klein (2007) suggests, ‘The intent of humour is to overcome the tragic impulse so that life is bearable’. Spence does not give up, nor does she stop creating. Instead, the artist utilises photography as a method to pictorially represent her own transition. The work serves as a form of therapy, much in the same manner as her previous phototherapy work represented her battle with breast cancer. One element has importantly changed, however. Spence now begins to absent herself from the frame, and instead presents her physical self through her previous constructed representations — a body not yet affected by the disease, a historical body that can be manipulated and freely controlled.

How do we come to terms with death? Perhaps more importantly, can we ever come to terms with our own limited physicality? I believe that these are deeply subjective, complex and quite probably impossible questions to answer, but as Klein (2007) suggests ‘Humour from art, as experienced through smiling and laughing, can be a catalyst for personal and collective healing, wellbeing and improved psychological health’. From reviewing the work of Spence, one could conclude that laughter and the ability to poke fun at death might be more therapeutic than resorting to a grief state that solely focuses on inexorable loss.

GRAVEYARDSESSION

Jo Spence, The Final Project, 1991–92. © The Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

 

 

Lee, Louisa (ed.) (2013) Jo Spence: The Final Project. London: Ridinghouse.

 

References

Klein, Sheri (2007) Art and Laughter [Scribd Edition] From: www.scribd.com (Accessed on 13.01.15)

Vasey, George (s.d) Jo Spence – Biography. At: http://www.jospence.org/biography (Accessed on 13.01.15)

 Walsh, Maria (2012) Art and Psychoanalysis [Scribd Edition] From: www.scribd.com (Accessed on 13.01.15)

The Reading Room: A review of Marion Coutts’s ‘The Iceberg’

9 Jan, 15 | by cquigley

The Iceberg by Marion Coutts

Reviewed by Elizabeth Barry, Department of English and Comparative Literary Studies, University of Warwick

9781782393504

Marion Coutts’s 2014 memoir The Iceberg details the period covering her husband Tom Lubbock’s diagnosis with an aggressive brain tumour, the progress of his condition, and his death. Lubbock, art critic for The Independent newspaper, himself wrote a short memoir (Until Further Notice, I Am Alive) about his condition, and its progressive attack on his ability to speak and write. The Iceberg, then, is Coutts’s story, of her struggle to deal with the news of Lubbock’s condition, to communicate with him and help him to write, and to care both for Lubbock and their young son Ev. Eighteen months old at the time of the diagnosis, Ev bounces irrepressibly in and out of the narrative, both a solace and a terrible reminder of the future that Lubbock will not share.

This extraordinary work rejuvenates the cliché of being ‘unflinchingly honest’. Coutts does not flinch. Her style is measured and sober, her reflections a detached observation on her own pain and anger. There is no misery in this misery memoir. Into what precise genre, then, does this work fall? This seems an almost impertinent question—this is truth, it appears to us, impeccable in its clarity and honesty. The question matters, however, for the reader’s horizon of expectation. It is memoir, but shorn of a degree of narrative frame: the storytelling discourse. Coutts does not try to make sense of what is happening for us—there is no sense to be made—but gives such a lucid account of the experience and its shades of feeling that it teaches us far more than works with a more intrusive narrative shape. The work is in four sections, which cover Lubbock’s diagnosis and first surgery, the second surgery and progression of the illness, his hospitalization, move to a hospice and death, and finally a brief coda on the immediate aftermath. It is episodic in structure, but the chronology and facts of the medical biography are offered by dated ‘update’ letters, reproductions of those Coutts sent periodically to their friends. These provide, then, the frame for the story’s inherent uncertainties and shifts in feelings, balancing the more abstract passages where the experience is so huge, the change in circumstances so cataclysmic, that the categories of time and space themselves warp and threaten to eclipse the factual story. As Coutts observes at one point, “time is a material stream” (91) in this context. Attuned to the discourse of personal disclosures, medical and emotional, in this sort of life-writing, the reader can find the more philosophical reflections jarring at first, however penetrating they may be. But it becomes increasingly apparent that this jarring is precisely the point: Coutts’s means of approach to her situation (her capacity to understand it, her agency in the face of its exigencies) are damaged, as well as the reality itself.

 

Reading this account of brain disease and its effects brought to mind Catherine Malabou’s recent philosophical work, The New Wounded: From Neurosis to Brain Damage, which argues for the incompatibility of brain damage and narrative representation. Coutts reflects explicitly at one point on the brain’s plasticity, the nub of Malabou’s philosophical interest: “Plasticity. This is the environment we live in. It is volatile and dangerous” (171). Her memoir, without any excursus into theory, offers the lived experience of what Malabou posits as the “rupture of narrativity” (55) caused by brain damage. As Coutts writes on the first page of her book, Lubbock’s diagnosis “has the status of an event”, “a rupture with what went before: clean, complete” (1-2). Malabou describes the “absence of sense” that seems to attend brain injury, which “challenge[s] us to think pure, senseless danger as an unexpected event—incompatible with the possibility of being fantasized. One does not fantasize a brain injury; one cannot even represent it” (9). The sparseness and economy of Coutts’s memoir is likely her own stylistic predisposition, but it also speaks to the idea that the experience of brain disease, even at one remove, is both ineffably strange, and resolutely literal.

Often these works stand in a relation of contrast. Coutts’s work acts as a riposte to Malabou’s construction of the brain injured subject as a victim of unthinkable and unspeakable psychic pain, who is unrecognizably transformed. Lubbock’s diagnosis is an event, a rupture, but there is one continuity. The family keeps its shape and character: “Our unit stands” (2). Lubbock is not an isolated individual, a victim, but part of an extended organism that can weather collectively what might destroy its members divided. The family challenges Malabou’s downbeat reflections, providing a salutary example of the idea of a ‘new normal’. This, a concept prevalent in qualitative approaches to oncology and in particular to brain cancer (Schmer (2008) and Cavers (2012)), sees a changed normality elaborated by patient and caregivers which accommodates the disease, neither denying it nor allowing it completely to displace the existing world of the family or its environment. This couple’s ‘new normal’ (worked at tirelessly and resourcefully by Coutts herself) preserves key tenets of their former life, principally the pleasures of food, friendship and a communion with the outdoors, and the satisfactions of work. Lubbock is also far from a wounded being by nature or choice. His experience becomes literally unspeakable as he loses language, but he is lucid (and cheerful) within these limitations until the very end, thought seemingly preserved even when language is severely compromised. He faces the ordeal not only with fortitude but a kind of exhilaration: this is the world, the world is precious, we are together and we are still here. As Coutts reflects relatively late in the narrative, Lubbock’s condition, even in robbing him as a writer of his defining personal and professional capacity, does not change his personality: “The humour in his voice is undiminished. It fizzes through his words like soda. Illness has left his character simply intact” (212). Malabou’s emphasis on absolute narrative rupture is belied by these stories of everyday continuity and preservation.

Malabou is critical of the neurological narratives of Oliver Sacks, who (in his own words) makes his brain injured protagonists “heroes, victims, martyrs, warriors”. Coutts’s work eschews any of these narrative temptations and, perhaps because Lubbock wrote his own equally painstaking account of events, there is relatively little of his perspective in her work. This scrupulous refusal to put words in his mouth, so to speak, becomes less a choice as his condition progresses and more a reflection of his growing “introspecti[on]” (165). For these reasons, then, this can only be Coutts’s story. On the other hand, hers is for this space of time a story almost wholly determined by his—a tension that Coutts explores without sentiment or self-pity in all its wonder (the new chapter in their close and loving union) and its suffocation. At many moments the inseparability of the wonder and the terror of this period is felt in her narrative: “It is the dead, the straight dead of night and I have brought my subject and my object, the one who all this is about to the hospital” (190).

The chronological structure of Coutts’s memoir deliberately precludes a narrative trajectory of heroic conflict or martyrdom, although the inexhaustible probing of the nature of her experience speaks to a far more considered endeavour than a mere chronicle or diary. Reflections on narrativity themselves punctuate the work: the limitation of the brain surgeon’s interest to fact denies the family’s “narrative, […] how this thing affects us in daily life” (95); the possible trajectories of the illness proliferate and present a maze of possible futures, “a blizzard of lines” (53); perforce Coutts leaves “white spaces” where her account of Lubbock’s pain should be (“I cannot write on pain so pain does not get written down. It is blank” (255)). These considerations take on a still more poignant form when she talks about their son and the necessity—and challenge—of constructing a “version of our narrative” that he can understand: “There will be no happy end, no moral neatness, no rhyme. […] I feel that two adults must be intelligent and brave enough to come up with something here, some version of a story to help Ev negotiate it. So far I am wrong” (164).

There is little retrospect in the work: this is not a “version of a story” but the hammering out (and often discarding) of words that can never keep up with the exhausting newness of the situation.   There are some lyrical affordances for Coutts and her reader, however; some hard-won moments of communion with the natural and social world when she can reach out to existing metaphors and conventions rather than having to coin her own. Time passing is marked in places not only by a development in Lubbock’s condition but also by the change of seasons. These stages are put into moving connection or counterpoint. Sometimes both at once. The uplift of Spring at the beginning of the second section coincides with a surprising move from darkness to light—decline to reprieve, bad news to good. Spring coincides with the tumour starting, like the nature around them, to “[grow] again”. There is a parallel development that is more positive, however: “Spring. Magnolia soulangeana opens its bells and we are well. Normality is gifted in the form of steroids” (91). The juxtaposition of the natural flowering and the chemically induced “normality” is ironic. This normality, rather than the new normality of cancer, is a simulacrum of the old, a “false peak” which takes them in. And yet this temporary happiness is genuine. The narrative witnesses itself having it both ways: in retrospect, this good news will have proved an illusion (“we are taken in, of course we are”). On the other hand, the relatively flat episodic structure of the narrative takes on a new and moving significance: the writing lives predominantly in the present tense, in a series of moments that have the potential to obliterate what has been and what is to come, and offer an epicurean freedom from fear. “We are as ever in the moment and we are well—so we are forever well. […] We splash about like birds in a birdbath” (91).

While time has become more material in the train of this illness, space has become less so, culminating in the narrator’s loss of purchase on her location at Lubbock’s death: “the action is familiar but not the place. We have stopped being anywhere at all. We are way outside, out of culture, place, gender.” This is, however, a source of peace rather than distress. “I do not know where we are but I feel very sure of myself here.” While space is dissolving, time is “refreshing itself”. In surrendering to time, space disappears from view—but Coutts can at last relinquish the fight and bow to this force, and there is no little comfort in this. “Time is the fundament we have never left, so powerful is its agency and pull, so direct and strange. There is nowhere in the world like it” (291). The end is good: a peaceful sleep for Lubbock, and in a sense one for Coutts too. When death ends a long illness, with its exhausting demands on the carer and its treacherous shocks and feints, it is well known that relief can accompany grief. There is, undoubtedly, this, but also something more than this, here. Coutts also awakes into the narrative at this end point, releasing Lubbock to death and taking his place as her own subject and object (“Go. I am not anything. Go. I am”). He has “[left] us standing” (294), as she says in the last entry, a black pun but also an uplifting statement of fact.

 

The Iceberg by Marion Coutts.

Published by Atlantic Books, 2014

 

References

Debbie Cavers et al, ‘Social, Psychological and Existential Well-Being in Patients with Glioma and their Caregivers’, Canadian Medical Association Journal, vol. 184, no. 7 (2012), 373-382

Tom Lubbock, Until Further Notice, I Am Alive (London: Granta, 2012)

Catherine Malabou, The New Wounded: From Neurosis to Brain Damage (Forms of Living), trans. Steven Miller (Bronx, NY: Fordham University Press, 2012)

Oliver Sacks, The Man Who Mistook His Wife for a Hat (New York: Summit Books, 1985)

Carol Schmer et al, ‘When a Family Member Has a Malignant Brain Tumour: The Caregiver Perspective’, Journal of Neuroscience Nursing, vol. 40, no. 2 (2008), 78-84

 

The Reading Room: A review of Matilda Tristram’s ‘Probably Nothing’

11 Dec, 14 | by cquigley

 

Probably Nothing: A diary of not-your-average nine months

Matilda Tristram

Reviewed by Nicola Streeten

Probably Nothing

 

Aged 31 and four months pregnant, Matilda Tristram was presented with an agonising dilemma following a diagnosis of stage three bowel cancer. In May 2013, The Guardian newspaper featured an interview with Matilda Tristram (Williams, 2014). It included an excerpt from what was to become her graphic memoir. The examples were small comic panels she drew as a way of telling people she knew what she was going through. The dilemma she faced was this: if she had chemotherapy it may save her life but may also cause miscarriage or damage to the baby. If she aborted the pregnancy and had chemotherapy, it may leave her infertile. If she didn’t have the cancer treatment she would be likely to die. My memory of The Guardian article is that the drawings were in black and white, which they weren’t. However, the situation was rather colourless.

Fast forward to 2014. Penguin has published Tristram’s full story, Probably Nothing: A diary of not-your-average nine months in full colour (Tristram, 2014). Tristram is well and glowing; the baby is alive and thriving. Curiosity lures the reader. How did she make the decision? Was it all straightforward? And the biggest question, how did she mentally and physically deal with such a rollercoaster ride through adversity? For me, the curiosity comes from knowing that a similar thing could happen to any of us or our loved ones and we may learn how to respond from reading Matilda Tristram’s diary. This is the pull of the graphic memoir, especially around subjects of illness and/or trauma. The drawing style Tristram has used is easy on the eye, encouraging the reader to engage directly with the narrative. Her deceptively simple drawings convey immediacy, as if it is happening right now. It is a diary, as the title asserts, and the drawings call to mind the styles of other graphic memoirs, such as Engelberg’s, Cancer Made Me A Shallower Person (2006) and Matsumoto’s My Diary (2008). The reader is there next to Tristram, invited into the intimacy of her experience for the duration.

Is it just another cancer memoir? It is another cancer memoir, but not just another. There are so many different types of cancer, with no two experiences or drawn interpretations the same and Probably Nothing offers a rich addition to the growing genre of graphic medicine literature. Tristram’s use of colour is striking. Speaking at Laydeez do comics (2014) she explained that initially she drew all the work in black line only. She was reluctant to add colour later, because she felt it would make it a bit less true or less real, but she is pleased with the result. The other two memoirs referenced here used the starkness of the black line. There is something about the use of watercolour wash in Probably Nothing that adds to the air of not really knowing what will happen next. The colour is allowed to bleed into the paper without control. In much the same way, the lives in the narrative unfold without control. The colour is not the loud, bright, bubble-gum positive outlook of Marisa Acocella Marchetto’s Cancer Vixen: A True Story (2009), which conveys a message of I will survive. In Tristram’s work, the colour seems rather to signify a quietly positive approach, an attitude of hopeful for the best but accepting of reality. The full colour and high quality production connotes comic as art. Matilda Tristram continues to work as an artist, trained in animation at the Royal College of Art, and lecturing at Kingston University. The publication clearly distances itself from an association with mainstream Superhero comics.

The drawing style is inviting for a non-comics audience, but I was not able to read it in one sitting. It is too relentless. I do not mean relentless in its gloom and trauma, for it is a story told with humour and lightness. It is tempting to use the term boring, but boring in a Mike Leigh film kind of way, in other words boring is not the right word either. It is to do with the disappointing reality of reality. As a reader, perhaps as a human, I cannot be alone in my hopefulness for a magic answer to life’s ills and pains. It is therefore constantly disappointing to find that there is no quick and easy solution. The message for me, if there was one, from Tristram’s narrative of her experience, is to take life little steps at a time in the face of adversity. There is a focus on the day to day, hour to hour– the importance and meaningfulness of the domestic. It is her use of humour that brings these details to life. The relationships with her partner and family are conveyed succinctly. For example, her mum falls asleep regularly in the waiting rooms, which is delightfully charming and funny. When they spend the day wandering round shops together, it is normal and unremarkable. Then Matilda notices the shop assistant noticing her colostomy bag. It is the noticing of the noticing in these instances that creates the gentle humour throughout the narrative. The attention to food also elevates the mundane. The reader experiences a stew or cheese on toast as more delicious than an everyday supper or lunch would normally be.

Every page has sixteen small panels and text is contained under the panels rather than integrated with the image, as is the more common comics convention. Sometimes the panels are slightly irregular, other times in uniform lines. But the 16 panel pages repeat and continue, as time does. Hilary Chute notes that trauma is often understood as repetition, which is what she says comics do so powerfully through the visual repetition. She endorses Cathy Caruth’s notion that “to be traumatized is precisely to be possessed by an image or an event” (Caruth quoted in Chute, 2010:183) It is Tristram’s repetition of the format of small panels of images and the repetition of herself within them which makes the comics form so successful in her presentation of her experience. It is her use of humour that makes this work not boring and not just another cancer memoir but a memorable, educational and moving story.

References

Acocella Marchetto, Marisa (2009) Cancer Vixen: A True Story New York: Pantheon Books

Chute, Hilary L. (2010) Graphic Women: Life Narrative & Contemporary Comics. New York: Columbia University Press

Engelberg, Miriam (2006) Cancer Made Me A Shallower Person. New York: Harper Collins

Matsumoto, Mio (2008) My Diary. London: Jonathan Cape

Tristram, Matilda (2014) Probably Nothing: A diary of not-your-average nine months. London: Viking, Penguin Books

Tristram, Matilda (2014) Laydeez do Comics, Foyles Bookshop, London. 15 September 2014

Williams, Zoe (2014) I Discovered I had colon cancer while I was pregnant. The Guardian [Online] 18 May 2013. Available at: http://www.theguardian.com/lifeandstyle/2013/may/18/discovered-colon-cancer-while-pregnant (Accessed on: 29 November 2014)

 

Nicola Streeten is an anthropologist-turned-illustrator and comics scholar, and the author of the graphic memoir Billy, Me and You (2011, Myriad Editions).

 

The Artist in Theatre: On the Primacy of the Subjective Narrative by Jac Saorsa

8 Jul, 14 | by BMJ

Drawing Women’s Cancer explores the lived experience of gynaecological illness through a unique interrelation between art and medical science. Based in Cardiff and supported by Cardiff University and Cardiff and Vale University Health Board, the project began in 2012 as a collaboration between myself and Amanda Tristram, gynaecological surgeon. Since then it has produced two major exhibitions and several presentations both national and international.

Drawing Women’s Cancer project builds on the premise that philosophy, medical science and visual art all involve an inclusive, and often passionate form of ‘seeing’, and that they are brought into mutual relation through the equally inclusive concept of language. The concept of inclusivity here emphasises the idea that although language is the root and branch of dialogue, and indeed of narrative, neither of these phenomena are necessarily bound to the word.

As an artist and a writer, my concept of language constitutes far more than simply words, and as such it is the language of practice – and its corollary, process – that most concerns me. Consequently I understand both dialogue and narrative as practices and processes in their own right, both ‘creative’ and both profoundly and intimately immersed in experience, wherein language is evident and influential in all its forms. The Drawing Women’s Cancer project, which constitutes an in-depth exploration of experience, is therefore fundamentally and methodologically driven by a hermeneutic approach that embraces a multidisciplinary concept of language in order to delve deeply into areas of subjectivity that can often be felt impossible to express in verbal form.

Narrative language is a vital part of Drawing Women’s Cancer wherein personal narratives as related to me and transcribed either verbatim or in note form provide the foundation for the research as a whole. These are the bedrock of the experimental approach and, together with written narratives that reflect my own feelings about my encounters with women patients, and my experiences in theatre, they underpin the combination, the conceptual superimposition of word and image, verbal and visual, that is engendered through the creative process – itself unashamedly steeped in subjective experience. The creative process thus reflects and perpetuates the dialogical process that characterises my conversations with patients in a continuing dialogue between myself and drawings as I work on them. At the same time the process also responds to a further dialogue, one that speaks to my experience of the ‘Others’ experience of illness. Narrative here shakes off the strait jacket of monologue. It refuses to be confined to any prescribed spatial and temporal dimension. Narrative here becomes polyvocal and takes primacy as the vehicle by which the project as a whole continues and extends.

When a drawing is complete the story is far from over, indeed it has only just begun, and a drawing’s inherent communicative force lies in its capacity as an autonomous art object to maintain a dialogical character even beyond the relationship with its creator. As a work of art a drawing can simultaneously express and provoke emotional significance in an inter-subjective relation with the viewer, who in turn can creates his or her own narrative on ‘seeing’ in it the voices of those suffering the impact of illness, and this leads, ultimately, to the instantiation of what I want to call the meta-language, a form of communication beyond dialogue, beyond narrative and even beyond itself in terms of the expression of subjectivity. It is on the basis of narrative then, and its dialogical implications, that creative representations of the lived experience of gynaecological cancer can open up a ‘discursive space’ wherein a deeper understanding of the relation between a disease diagnosis and the overall existential impact of illness can potentially stimulate further conversations between patient and physician, between patients and their carers, and within the public arena in terms of awareness and acceptability.

So, in the true spirit of interdisciplinary practice in the Medical Humanities the Drawing Women’s Cancer project offers a direct challenge to the rationale of an uncompromising ‘art-science’ dichotomy by demonstrating that, in practice, neither can be disassociated from our understanding of humanity and the manner in which, as human beings, we engage or disengage with the society in which we are a ‘person’. Art, medical science and philosophy are all inescapably entangled here in a web of our own being and are constituent parts of the same overall human project, but visual art perhaps has the more obvious capacity to ‘bear witness’ to the trials that are often borne in the pursuance of being…in our physical enactment and psychological representation of life. Drawing Women’s Cancer is not only about disease, or medical intervention, or suffering, or the impact of illness; it is about all of these things. It is about, as Radley notes, what it feels like when ‘all sense of normality, and all the expectations of a future that accompany good health, suddenly become less real’. It is about the experience of illness, where that experience overrides all others. It is about creating a language that has the power to speak, not necessarily for the women whose personal stories are taken as the point of departure, but rather because of them, so that they may return.

For the rest of this post I would like to offer one of my own written narratives, an account of a recent opportunity to witness a gynae-oncological operation. I have attended various operations during the course of the project and all of the women who have allowed me to witness this part of their experience do so with the conviction that it will help me understand more profoundly what they are going through. Having, to borrow a term from legal channels, an ‘appropriate adult’ seems also to help sometimes as they try to deal with the natural anxieties that such an experience brings on.

Body in Flux

The image accompanying this post is a painting rather than a drawing. It is an ‘autoethnographic’ image that represents a similar operation to the one that the narrative below refers to. It serves, I hope, to demonstrate how visual language, even where there is no attempt to necessarily create an objective representation of the scene, can nevertheless communicate autonomous and coherent expressions of profound experience.

The painting is called Body in Flux. The narrative is called, simply, The Op.

Twenty minutes ago I was talking with her while she waited to be called down to theatre. She had smiled at me but it was a weak, anxious smile and there was fear in her eyes. We had a brief conversation – she seemed to appreciate the company. Hers is a difficult history, when she began to notice something was wrong she had tried to ignore the symptoms, ‘for the children’. She convinced herself it was just something minor, no need for a doctor, but she got tired of pretending she was OK and in the end she did go for help. As she lives in West Wales, she went to the local hospital and to her relief they told her there that it was nothing serious after all – ‘just abnormal cells’, nothing too much to worry about. They did however organise an appointment for here at the clinic here in Cardiff, for a biopsy. This was unusual, and even though they said not to worry, she did anyway. She worried about being in the city, she worried about her two small children at home, she worried she might die.

It is cervical cancer, quite advanced. She is to undergo a radical hysterectomy. The whole of her uterus and the surrounding tissue, the cervix and the upper part of her vagina are to be removed. The ovaries too, probably.

Reality hit hard a few weeks after the biopsy. It came suddenly, in a phone call. It was the shock! The word ‘cancer’ still makes her cry. She has no partner. She said she wasn’t ‘active in that way’ – not for ages – so she hadn’t been for Pap test for years. She had thought there was no need. She said she felt ‘stupid’ now. She is a primary school teacher; they had called her on her mobile as she was walking the kids to the classroom. They had the results of the biopsy. They told her that she had a tumour, that she had cancer. Now, here, waiting to go down to theatre, her eyes well up as she whispers the word. ‘It was the shock’, she says.

She is asleep now under the lights in the theatre. The lights are not harsh, just very strong. The huge circular structures from which they descend are acutely and disturbingly present, not just here in the room, but even more powerfully in my memory. The monstrous size of them and the pitiless, piercing illumination they provide still haunts me, despite my efforts to exorcise the horror of my own experience in the weeks that followed in paint on canvas.

I am anxious then, for her, for me, for us both. This operation is one that remains very close to the surface of my own consciousness and my presence here has psychological connotations that I cannot ignore or supplant with more rational thought, so deeply are they rooted. This is a test then to the personal limit of my focus on subjective experience. Amanda, the surgeon, knows this. She asked me when we arranged this visit, “Are you going to be OK with this one?” I felt the same way I did when she asked the very first question, the one that kick-started the whole Drawing Women’s Cancer project; she had said “Can you draw what it feels like to have gynaecological cancer rather than just what it looks like?” I knew then that I wanted to try.

Jonathon, the surgeon working with Amanda, reaches up to angle the bulbs. They are covered in their own protective ‘gloves’ so that he doesn’t burn his hands. His hands are so very important. I stand behind Amanda who is pushing paper wadding into the vagina – ‘packing’ it so that it doesn’t ‘move’ during the operation. There is so much paper left over on the floor between her feet. It is to ‘protect the excess’. The pushing, packing, continues and she says, “I pushed too hard once. I was in training and I was so scared of the consultant… we noticed that there was a lot of blood just dripping out onto the floor!”

Amanda goes to a side room to attend to the paperwork and Jonathon is left to make the first cut. Firm and certain. Vertical, from the navel to the pubic bone. He draws the diatherm slowly, painfully, through the skin of the belly and it trembles around the small part of it that is taut and stretched between his fingers. “A cut needs tension”. I am surprised that he uses a diatherm for this initial cut, deep and long as it had to be, so I ask. “Yes”, he replies, “it’s the way we do it now, but some surgeons do still use a scalpel.”

The edges of the cut sizzle and blacken. Smoke and the acrid smell of burnt flesh arise from the wound that becomes bigger, deeper as he works. He cuts down, confidently and deftly through layers of fat. My artist’s eye focuses on how the colours that move through the wound, from the skin, through the fat, to the fleshy muscle, are aesthetically beautiful in harmonious juxtaposition. First the hues of red: crimson, napthol, and the brightest perylene mingle with tiny glimpses of green and blue, the colours of shadows on the flesh, and then on through the spectrum of yellow, from the deepest cadmium to the palest, ‘prettiest’ lemon, the colours of the daffodils that are blooming outside and carry so much significance here in Wales. Cenhinen (kenHINen) means leek in Welsh, while cenhinen pedr means daffodil, or St Peter’s leek. Over the years the two became confused until the daffodil was finally adopted as a second national emblem of Wales. The cenhinen pedr then are blooming today, even as the wound is opened and the fat gives way and melts under the surgeon’s hand.

I think of Chroma, in which Derek Jarman, painter and filmmaker, extends Melville’s view that we ‘learn’ colour whilst not necessarily understanding it. It is understanding that I am seeking here, in subjective form, and in the wound as I watch it open, the red of the initial cut becomes Jarman’s ‘moment in time…quickly spent. An explosion of intensity.’ Further on, as the diatherm moves down through the soft tissuethe red ‘burns itself. Disappears like fiery sparks into the gathering shadow’. Jarman imagined four stages distinguishable in alchemy: the blackening of MELANOSIS, the whitening of LEUCOSIS, the yellowing of XANTHOSIS and the reddening of IOSIS. For me they appear here, but in a different order as I watch the diatherm cut beyond borders, deeper into the body, opening up and invading its private, once autonomous spaces. I feel the sting, but as Jarman says, Painters use red like spice’.

Amanda is back. She brings more even wadding to ‘mop up the excess’. The excess: ‘an amount of something that is more than necessary, than is permitted, or is desirable’. Excess here then, even beyond the metastasising cancer that in itself is excess to the normal cell structure.

I stand on a stool, watching as Jonathon cuts deeper into the muscle. The rectus abdominis yields to the unrelenting diatherm and allows him access to the peritoneum and the abdominal cavity. There it is, the uterus, itself now become ‘excess’. Amanda holds it in her hand. “Look” she says as she gently lifts it towards me, “and here are the ovaries”.

Fat, organs, tissue, all spill over the edges of the now gaping wound. Colours mingle at all levels of the ‘warm’ scale. I am shocked – no, not shocked – more bemused to witness what appears as a mess, a fluid ‘jumble’ of organs that belies the naïve impression that I now realize I have always held that inside we are very orderly and self-contained. Art takes precedence over science here as the boundary between order and disorder becomes confused. Either way the relationship between the two is here emphatically demonstrated through the idea of structure, the structure of the body in this case, which becomes simultaneous with function through the overall concept of process.

Jonathon and Amanda push the organs around with their hands, bullying them into compliance as they try to force them into the chest and pelvic cavities in order to isolate the uterus. But the organs keep spilling back out as if defending, even nurturing the one that is the object of attention. Yet more wadding is pushed in to hold back the tide, up into to the chest and down into the pelvis. Finally, with his arm up to the elbow inside the passive form Jonathon, like Canute, pushes and shoves with a physical force that promises a painful recovery. I am stunned by the seeming violence of it all, the brutality, the deeply and bloodily visceral reality of scene. The edges of the wound are pulled wider open with clamps that grasp the bloodied flesh and become bloodied in their turn. Now, the diatherm, held lightly first in Jonathon’s hand, then in Amanda’s probes and cuts on respective sides of the pelvic cavity, now an empty space devoid of organs and ‘excess’, save the hapless uterus, the one, which is soon to become the other. It sits isolated, bounded by smooth, ‘slippery’ walls that shine and appear translucent and yet opaque at the same time. It looks so small, so vulnerable under the threat of the diatherm, and the ovaries, white and tiny, are hiding, sheltering, in the darkness of the void.

The violence of the procedure is salutary in terms of my understanding. The pushing, the shoving, the manipulation of the bodily structures and organs, bloodied tools that are first discarded, then retrieved, then put into service to cut, to staple, to open and to close, all this is played out in front of me in sanguine ritual. The same blood pools in the crevices on the body and on the floor at Amanda’s feet, small bits of the flesh that it once made red are thrown up onto the green sheet, or down onto the floor. This is not clean, not clinical; this is raw, visceral, almost primeval. It feels… it feels. This is the unadulterated, non-sugar-coated authenticity of surgery; the cutting, the slicing, the pushing and the pulling, the packing, the mopping up… and it is all the raw bloodiness of real flesh, real wounds; nature rent and protesting. The body, once a closed space of quietude and privacy, now wide open, stretched, clamped and ‘mined’ for the tumours that threaten its very existence as they create of the acting Self (that part of being human which here, in this theatre, is absent) Sontag’s ‘non-self’.

I draw nearer to see as best I can while careful to avoid any contact with the green sheet that protects the human being who has become subject to – or is it object to –this therapeutic violation. Standing beside Amanda, I have a clear view of how she works, now with force, now with gentleness, but always with dominance. The body submits. Once the surface and the underlying defences have been breached there is little to resist the relentless subjugation of its autonomy. The chest is rising and falling gently however, normality and regularity at least in this respect confirmed by the anesthetist who watches the fluctuations of his parallel and multi-coloured digital lines.

Carefully now, the surgeons begin to work more slowly and delicately. Brutality is replaced – in the details – by the sensitivity that must dictate the smallest and most intimate of incisions. They need to explore, to single out the pelvic lymph nodes, the arteries the nerves. They are suspicious. The cancer may not have settled only in the cervix, there may be subsidiaries, so, like Selzer’s ‘predators’ on the prowl they move quietly, deliberately, stalking the prey, the obscure ‘lumps’ of flesh that have become firm to the touch and thus differentiated from the soft masses within which they hide.

And so they delve with life-preserving precision into the depths of the body, first one side then the other, moving slowly, constantly aware of how far they can to go before breaching a physical boundary impossible to cross with any hope of returning. The main tumour will be taken coldly and cleanly with the uterus, an eradication of the very taproot of the cancer’s existence, but its morbid potentiality may lie in the lymph nodes. Carefully then they search, steadily and without pity, isolating, feeling, cutting, debating, and moving on. They take various samples, all of which ‘feel’ benign, and then, there it is. A tiny lump of bloody flesh is dropped into a plastic vial and a phone call is made. This sample they are not so sure of, they need to do a ‘frozen section’. The operation has to be delayed while they await the result of the analysis because, they tell me, if it is positive there’s no point in going on. I feel suddenly cold although it is very warm in the theatre. They switch off the lights.

She is under anaesthetic for eight hours. I have to leave, and Amanda does another operation, the next lady on the list, while her first lies covered with the wound open but packed with the endless wadding paper while the sample is sent to the lab. I receive a text later in the evening. The sample was negative and they completed the hysterectomy. They left one ovary.

 

Jac Saorsa

July 2014

Guest Blog Post by Poet and Writer, Clare Best, Part 2: On Scars and Memories

21 Apr, 14 | by Deborah Bowman

Guest blog for BMJ Medical Humanities by Clare Best

 

Recently I’ve been thinking about cutting/editing and scars/memories. In two linked pieces for the BMJ Medical Humanities blog, I take a look at my own relationship first with knives and cutting and then with scars and memories.

 

Part two: Scars and memories

 

If I, as a former artist-craftswoman and as a writer and editor, am some kind of surgeon, then surgeons are also editors and writers. They arrange and rearrange our anatomies, cutting away what is not healthy, what is no longer required, repairing what is not working as it should. They invent and create new mechanisms and implant them into our bodies. The aim of most surgery, it seems to me, is to alleviate suffering and allow bodies and human beings to function as fully as possible. Surgeons facilitate – as far as they are able to – our wholeness. Our bodies, subjected to their hand work, become altered and edited versions of our earlier, or first draft, selves. Surgery is one agency in the mutability of human experience.

 

My own body has been revised and edited in many ways, as of course have all human bodies – by growth, by accidents, by disease, by ageing and even by self-harm, as well as by surgery of various kinds. In my case, the most dramatic revision and editing happened in 2006 when I underwent elective double mastectomy as a way of reducing my risk of contracting a hereditary breast cancer in my mother’s family.

 

I have written elsewhere about the decision-making journey leading to my surgery, as well as about the creative processes that sustained me before, during and after surgery – the creative processes which later developed into the project Self-portrait without Breasts (http://selfportraitwithoutbreasts.wordpress.com). Here, I want to think about scarring as evidence and reminder of trauma and loss. And I want to raise questions about the ways in which scars are read and interpreted – both as signs of surgery and as memorial sites.

 

The surgeon who operated on my mother was a kind and gentle man who nonetheless believed in radical mastectomy, which involved removing not only all the breast tissue but also much of the underlying muscle of the chest wall, and all the lymph nodes. Considering that the particularly aggressive nature of inherited breast cancer was not recognised in the 1970s (when my mother’s cancer was first found) she was lucky to encounter a surgeon who believed in this approach. Her radical mastectomies five years apart, following multiple primary tumours in both breasts, almost certainly gave her the additional twenty-five years of life she enjoyed until she died in her early seventies. But the resulting scars, both visible and invisible, were terrible to her. She never wanted them to be known about, let alone witnessed. She and I were very close, and yet throughout the many times I nursed her, and right up to the end of her life, she made enormous efforts to keep her morbidly scarred torso and upper arms from my sight. I saw the scars only twice, on both occasions by accident.

 

My mother was not unique in her shame and suffering. Although we now find it hard to imagine a world in which the words ‘breast cancer’ were unspeakable, that was the world my mother, and countless other women, inhabited. With the prominent outer features of their gender and sexuality invaded by disease and/or surgically removed, women with breast cancer struggled to maintain a sense of identity. But by the same token there was no language in which to talk about their loss and fear, and the scars had to remain unseen, both literally and metaphorically.

 

So taboo was this disease, in the world and in our family, that when my first cousin was diagnosed with aggressive ductal carcinoma in the mid-1990s, she had no knowledge of her aunt’s (my mother’s) experiences, even though her own mother (my mother’ sister) had also developed breast cancer. It was only when my cousin and I began to correspond about our mothers’ breast cancers that the extent of the deeper family scarring became visible and tangible. We began to read the scars and interpret our own situation, the risks we faced. We could also finally perceive the scars in our mothers’ generation as the memorial sites they were – places where loss and pain should have been respected, remembered and properly grieved, instead of turned away from and covered up.

 

The good news is that the current climate around surgical scarring is much more open. This has to be a very positive change for individuals and for society. Some of the mainstream breast cancer charities such as Breast Cancer Care are now running campaigns that address body image issues with photographs of women at ease with, and baring, their scars. The recent Under the Red Dress project has drawn a groundswell of support for making scars visible, even legible, and the project clearly links that legibility with raising awareness of breast cancer. My own work explores and extends the ways we tell the stories of our bodies; in speaking out through poetry and photographs, I speak for other women in my family and beyond.

 

But there is more work to be done. If scars are both evidence of cutting/editing and sites of memory, we are presently at risk of overemphasising the evidence whilst sometimes failing to properly acknowledge the memories. A recent statement from Judy Kneece, sent around social networking sites by the (American) National Breast Cancer Foundation, asserts that ‘Breast cancer has invaded my body, but it need not invade my spirit. There may be scars on my chest, but there need not be scars in my heart.’ Apart from the use of the stale military terminology by which all experiences of cancer seem to be set up as battles to be lost or won, the core of the message is, I think, distressing in its denial of the need to admit inner wounding and thereby begin to integrate trauma and loss. Of course the scars are in the heart as well as on the chest – how could it be otherwise, and what is wrong with that?

 

We should seek to accept the hand work – the cutting – where it is necessary, and treat with tenderness and care the consequent scars and the memories they represent. Surely this honouring of the memory as well as the scar, the material edited as well as the knife and the cut, makes the move towards true healing both more imperative and more likely.

 

Clare Best is a poet and writer with particular interests in writing body and landscape. Her poems are widely published in magazines including The Rialto, The London Magazine, Magma, Resurgence, Agenda and The Warwick Review. A chapbook, Treasure Ground (HappenStance 2009), resulted from her residency at Woodlands Organic Farm on the Lincolnshire fens. Breastless – poems from the sequence Self-portrait without Breasts with photographs by Laura Stevens – came out with Pighog in 2011, and Clare’s first full collection, Excisions (Waterloo Press 2011) was shortlisted for the Seamus Heaney Centre Award. She teaches Creative Writing for Brighton University and the Open University, and lives in Lewes, Sussex.

www.clarebest.co.uk

http://selfportraitwithoutbreasts.wordpress.com

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