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“Writing is a way of saying things I can’t say”—therapeutic creative writing: a qualitative study of its value to people with cancer cared for in cancer and palliative healthcare
  1. G Bolton
  1. Gillie Bolton, 15C Bury Place, London, WC1A 2JB; gillie{at}gilliebolton.com

Abstract

This paper reports on a therapeutic creative writing project undertaken at King’s College London and University College Hospital London, funded by Arts Council England. The project sought to increase understanding of experiences of personal expressive and explorative writing by cancer patients receiving palliative care. Narrative methods were used to analyse and interpret patients’ written and oral (transcripts of semistructured interviews) responses, researchers’ field notes and written responses of staff. These indicated that writing: (1) facilitated patients’ ability and opportunity to discover what they thought, felt, remembered; (2) enhanced their awareness of, and ability to express, issues to which focused attention needed to be paid; and (3) offered satisfaction and fulfilment of creative expression and exploration and the production of writings which to them and close others were vital. Illuminatively drawing upon patients’ writings and responses, this paper is underpinned by discussion of therapeutic writing and its relationship to creative writing, with reference to a range of previous research.

  • therapeutic writing
  • creative writing
  • narrative and story
  • metaphor
  • arts in healthcare
  • palliative cancer care

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Now having been stretched mentally to the outer limits, I’ve realised because of my terminal position, how we worry, too much, about the future … We can only live, and should become more aware of, the moment, now! That doesn’t mean reckless and irresponsible behaviour. It means consider the value and quality of whatever you’re doing now. (Cancer patient in palliative care)

This exploratory study began a unique process of qualitative enquiry towards the “heart” of therapeutic creative writing and its value to patients in palliative care and oncology settings. It sought to gain increased understanding and clarity about their experiences of personal expressive and explorative writing, and the existential criteria they used to describe their response to it.

No art gives answers. The experience of this type of writing does, however, present deeply personally intriguing questions, the answering of which is an endless quest. More questions are thrown up, in this context the fundamental ones of life: what happens when I die? what might my bereaved relatives feel? what is wonderful in this world I am about to leave? in which way was my life meaningful? These questions, this life quest, looks inward and, involving only paper and pen, takes the palliative or cancer patient–writer no further than their bed or chair; it accords with the words of the ancient sage:

Without going outside, you may know the whole world.

Without looking through the window, you may see the ways of heaven.

The further you go the less you know. (Lao Tsu, p461)

And wisdom adapted from a saying (about travel) by the poet GK Chesterton:

The whole object of [writing] is not to set foot on foreign land; it is at last to set foot on one’s own self as a foreign land.

Patients said such things as “I have been able to reach that depth”; “it became quite purgatorial, therapeutic”. Staff commented that “for some it was a pleasant hour but for others it went much deeper. Some found a new talent for story writing, which gave them creative release and improved their self-confidence and esteem. Others discovered the value of diary writing and continued to express their feelings in writing long after the sessions. Others used the time to really tackle some of the harder issues they were facing.”

All the patients involved in the study indicated they found the therapeutic writing process beneficial, saying such things as “it made it less traumatic than it might have been otherwise.” Analysis showed that writing (1) facilitated patients’ ability and opportunity to discover what they thought, felt, remembered; (2) enhanced their awareness of, and ability to express, issues to which focused attention needed to be paid; and (3) offered satisfaction and fulfilment of creative expression and exploration and the production of writings which to them and close others were vital. The “essays” of staff members offered insight into a range of benefits to patients as well as the intrinsic value of staff writing groups.

This research began to demonstrate the value of writing to very sick people: how it can enable them to understand themselves better; think through issues, memories, feelings and thoughts more clearly and appropriately; accommodate to what is happening to them better; and communicate more effectively with significant others. They also gained the focused satisfaction of involvement in an artistic process. This not only can take their mind off present problems, anxiety, and pain, but can give a sense of achievement, and authority in a valued sphere. These writers were not, however, concerned to create artistic products; the focus of the work was on the process of doing it.

The World Health Organization in 1948 defined health as “a state of complete physical, mental, and social well-being and not merely the absence of disease”. Mental and social well-being, and therefore health, would seem to be enhanced by exploring and examining personal material privately (alone with writing rather than talking to another person); expressing and communicating personal material both through the medium of writing (saying things in writing that can’t be spoken) and using the writing as a stimulus and aid to talking to appropriate others; and experiencing the pleasure and intense involvement that only a creative activity can bring. Other research27 (and see below) indicates that deeply expressive and explorative writing can ease symptoms because the psychological and the physical are so closely linked (this relates to the well-known placebo phenomenon). Extracts from patients’ writings, interview transcripts, and essays and from staff essays and researchers’ fieldnotes illuminate the following examination of cancer patients’ writing and how they reported its meaning to them.

THERAPEUTIC CREATIVE WRITING: A DEFINITION

Therapeutic writing employs processes of personal, explorative and expressive writing, which might also be creative or literary. Patients or clients are offered guidance and inspiration by a clinician or creative writer and support in choosing subject and form. Each writer works according to personal interests, concerns, wants and needs. Authority and control always reside with the writer. The emphasis is on processes, to create material of satisfaction and interest to the writer, and possibly a few close individuals. Occasionally there is no final product. Literary writing, on the other hand, is oriented towards a literature product of as high a quality as possible (eg, poetry, fiction, drama), generally aimed at an unknown readership.

Therapeutic writing can be the initial stage of literary writing, ensuing stages of literary crafting, redrafting and editing being focused towards publication. Expressions of private experience are crafted into a public text. The reader of published literature is primarily interested not in the writer, but in what the writer has to say. A reader of therapeutic writing, on the other hand, is principally interested in the writers, their confidential private expression and their personal development.

CREATIVE WRITING AS THERAPY

People very often don’t know what they are troubled by. Some are aware they are unsettled or anxious; others experience physical symptoms. Our minds have a way of storing our most troubling or distressing memories or thoughts in such a way they are very difficult to access. This enables everyday living to take place relatively unhindered. But the material has not gone away; it is still there, causing sleeplessness, headaches, worsened symptoms, background unexplained anxiety and so on.

Some people do know what is troubling them but find it very difficult to express it to anyone in a helpful way. The bigger the problematic issue, the more the difficulty in expressing it, and the more it needs expressing, often repetitively. Friends and relatives can only listen to so much, and psychotherapeutic time is limited and costly. Writing can be done alone with only paper and pen; sessions with a professional work on material written in the patient’s own time. No one doubts the beneficial effects of the talking cure. The writing cure8 9 can be an adjunct to psychotherapy or can be used as an extremely effective, relatively cheap and straightforward artistic form of expression and exploration. Research and my experience (see below) indicate that it has the power to take the writer very quickly to the heart of what they need to reflect upon.

The role of narrative

Illness and dying bring pain, disfigurement, disorientation, lack of mobility or sense impairment; moreover, people have to readjust their notion of who they are, what their primary relationships are, where and how they might live, what—if at all—their work might be, what their hobbies are and what their hopes and fears are for their lives. Their sense of the story of their lives has been disrupted; they have to work hard to develop a new, appropriate, yet satisfying story, instead of dwelling in a depressing sense of destruction.10 11 Even the dying have to have a sense of the trajectory of their life, even if it is much shortened. And if they can come to have a satisfying life story, then their dying will be gentler for them and enhance the lives of their loved ones and those who care for them professionally. This re-creation can be as much to deal with as the medical problem itself. Writing to help prepare for death has good precedence: “Montaigne [wrote] to heal himself, and those who attend to his Essays, of the pain and fear of dying” (p105).12

Involvement in artistic processes can offer primary support in the rewriting of a hopeful, helpful life-towards-death narrative. Writing offers reflective processes upon memories, hopes, fears, anxieties and angers, without tackling these emotional states head on; it can be enjoyable, life-affirming and confidence-enhancing. Image such as metaphor is used, as are characterisation and plot. Such writing enables deep emotional, spiritual and psychological work, especially when supported by an experienced arts therapist or writer-in-health. Writings also create a record for loved ones: “Art is the closest you can get to immortality.”13

The healing arts

Art—the use of the imagination—that magical quality which marks us out as different from all other living beings, can help us to achieve increased communication, self-understanding and well-being,1420 alleviate stress and anxiety,7 18 and dramatically support positive self image;21 and it can have significant therapeutic effects.22 This power of the imagination and art has been known about and harnessed for thousands of years. At the temple and hospice of Asklepios in ancient Greece, for example, patients watched plays (Greek plays, written in poetry, were high art and communicated deep psychological, cultural and political insight). Aristotle wrote about this (see below). Asklepian patients also undertook healing work based on the images given to them in dreams. This tradition continues. John Kani, coauthor of Siswe Bansi is dead, said “theatre is a weapon of change”.23 The writing of his play Nothing but the truth enabled him to forgive himself for hating perpetrators of apartheid atrocities and his brother’s murderers. His daughter only understood about the fight against apartheid when she saw the play. The editor of the British Medical Journal recommended that a percentage of the NHS budget should be spent on the arts.24

The relationship of therapeutic writing to creative or literary writing

The first notes or draft of much writing and some of the redrafting stages, of poetry in particular, are deeply personally expressive. The value of a piece of writing depends upon how successfully it expresses experiences and observations from the writer’s exterior environment (such as nature), or their interior (memories, dreams, reflections). The writer’s internal critic often needs to be disabled, as it always strives to keep exploration and expression at a superficial, safe level.

The different branches of literature have bodies of rules and forms (sonnet, for example), as does everyday written language (syntax; letter-writing form), to ensure as effective communication as possible. These therapeutic writers were given permission to ignore all these rules, or to use as many of them as they wished in whatever way they wished, sometimes following suggestions from the facilitator. There is no need for rules, as this type of writing is usually intended for a tiny audience, often only of one—the writer, whose understanding can leap over idiosyncrasies. Blog writing, which could reach audiences of millions (but is probably only read by a handful of sympathetic people) is usually also written in a personal, non-rule-directed form. Strict form, such as the sonnet in poetry, can, however, also be extremely therapeutic.9

Literary published writers often use the initial stages of writing to help with self-understanding: “we write before knowing what to say and how to say it, and in order to find out, if possible” (p119)25; others have more to say about this 17 2630. Such exploratory writings are redrafted and edited to create publishable material. Therapeutic writers also sometimes undertake these later stages as the writing moves towards publication.

PREVIOUS RESEARCH

Research has shown that personally disclosive writing, undertaken under trial conditions with fit individuals, is associated with benefits to mood and quality of life,31 and with patients is associated with benefits such as an increase in immune function.35 An editorial concerning JM Smyth’s 1999 research stated, “Were the authors to have provided similar outcome evidence about a new drug, it likely would be in widespread use within a short time. Why? We would think we understood the “mechanism” (whether we did or not) and there would be a mediating industry to promote its use”.32 Such studies of writing interventions have typically asked subjects to write about a traumatic or stressful event in their lives in a research, rather than therapeutic, setting,5 6 33 an approach that is not considered appropriate for, or useful to, patients in palliative care or oncology patients.

Previous qualitative research with depressed primary care patients,34 hospice patients7 and counselling clients3538 gave similar results to this study. Research with women with breast cancer indicated positive effects.39 40 Considerable research has been undertaken with a wide range of patient and subject groups, including the positive effect of writing on the success of young romantic relationships.41 Pennebaker and Chung have undertaken an overview of current research.42 Poetry writing is used in cancer and chronic illness,4346 and haiku writing in palliative care in Japan.47 Schwartz and David48 tell us:

Clinicians have noted that [cancer] patients [during their last year of life] do not discuss their dying unless they are given a context in which to do so,49 and that when patients are given opportunities to shift their focus to inner life concerns—existential and relational concerns—then a sense of preparedness for coping with mortality may enhance emotional well-being during this poignant period.50 51 When cancer patients focus on the medical at the exclusion of other facets of their lives, we believe that they miss critical opportunities to address the emotional and existential issues that would lead to intimacy with loved ones and closure. These issues are critical to improving quality of life at the end of life and in fact have recently been documented as being core attributes to a “good death” experience for 81–90% of patients.52 In the spirit of facilitating this process, we have developed a written expression intervention that seeks to provide patients with a vehicle for processing the emotional and existential issues that arise in the face of the later stages of a terminal illness.

Although the intervention described here was appropriately facilitative, in-depth and creative, and was clearly valuable to the patients, this was a quantitative study on such a tiny sample (12 patients) that the outcomes are not useful. Qualitative data, such as patients’ personal response, were sadly not obtained.

THE WRITERS IN THE STUDY, AND THE CIRCUMSTANCES OF THEIR WRITING

The study involved 13 teenage cancer patients and 11 cancer patients receiving community palliative care (aged 40 years and older) who undertook different sorts of writing in a range of settings. They wrote stories (fictional and semifictional), poetry, personal journal entries, autobiographical accounts, descriptions of their homes, wards, and experiences of cancer and treatment, and so on. I worked with them in workshop settings (up to eight teenage cancer patients in the dayroom of the Teenage Cancer Trust Unit), individually at the bedside, in their homes (community patients), and in the Unit dayroom. A considerable bulk of the writing was undertaken alone and read to me later. Involvement in the project was entirely optional. Authority and control over each piece of writing resided with each writer, who gave signed consent to involvement in the study and to publication of their writings and interview transcripts. Those who undertook three pieces of writing were invited to write an evaluative essay What this writing has meant to me and to be interviewed by a voluntary experienced research interviewer; interviews were transcribed.

My content analysis of patient essays, writing and interview transcripts gave significant elements concerning the personal value or impact of the writing processes. I then studied these alongside my field notes for themes and narrative lines that explicitly or implicitly seemed to offer insight into the therapeutic writing process: how it had been used by the patient and its possible functions and effects. The analytic and interpretative focus was consistently the personal and developmental: many of the pieces had artistic value, but that is another line of enquiry. Following an initial sensitisation process, the project steering group discussed data analysis in order to bring wider perspectives.

Two staff writing groups, one in each setting, offered staff experiential knowledge and understanding of the processes. One member of staff in each setting was invited to write an essay What this writing meant to my patients and colleagues, to give professional background in the report.

All this material was collected with a view to discovering the value, to patients, of writing: benefits, disadvantages and harms associated with therapeutic writing in these settings. The enquiry process was based on narrative approaches.53 54 Narrative analysis has been seen as an empowering social science methodology, paying attention to subjects’ articulation of their own viewpoints and evaluative standards. It focuses upon how the past shapes perceptions of the present, how the present shapes perceptions of the past and how both shape perceptions of the future.55 56 All the material was scrutinised for either expressed or implicit value and function. Elements and interpretations, which I drew from the four forms of data, were in turn scrutinised, examined and discussed by the research steering group.

The research steering and management groups met regularly. They supported, advised and oversaw the project. They included two medical (clinical) academics with experience of medical humanities and the healing arts, an experienced academic medical qualitative researcher, a professor of higher education, a literature officer from the Arts Council England, and me.

Carried out at King’s College London University, Medicine and the Arts (English Department), the fieldwork was undertaken at Camden PCT Community Palliative Care Unit and the Myerstein Institute of Oncology, University College London Hospital, specifically the Teenage Cancer Trust Unit. Ethics approval was gained from the local research ethics committees responsible for research in the care settings. Honorary contracts were obtained for researcher and interviewer from the health trusts concerned.

THE STUDY: HOW THE CANCER PATIENTS EXPERIENCED WRITING

A particular quality of explorative and expressive writing is that it is private: “not really for anyone else other than yourself”, as one patient put it. Personal writing is tentative: “If it’s written only for the self, then it can be un-said”, said in different ways, or deleted and the opposite tried instead. Its impermanence is an essential element: this is process work, not writing for a literary product, though the artifact in progress can be extremely important to the writer.

An expression of the otherwise inexpressible seems to be enabled. The quietness of writing, and there being no immediate listener, unlike the case with speech, seems to make it conducive. “Writing is a way of saying things I can’t say. I do it when I’m on my own, and as a way of coping with being down. I know I mustn’t give in to being down and give in to the cancer and writing helps.”

The content is generally spontaneous and written “in a fairly haphazard, unstructured kind of way”. “I write without pre-censoring what I will say”, with “recklessness, in a moment of madness”.

These very sick or terminally ill people said they had a “mass of jumbled thoughts and feelings”. Writing in this way can help to “put it in some sort of order”. It gets these “things which swirl around my head” “outside” where “it will be easier to deal with”, “instead of just keeping them like bottled up”.

Many people felt the process “unburdened” them: “what’s within me is externalised, is deposited outside myself”; “words on a page are one of the dustbin men”. All these expressions give a sense of service rendered by the writing: dustbin men remove unwanted waste; an un-carryable load is taken away. These writers and others filled in more about how writing then deals with this “burden” or “dustbin material”: one said it “took me some way towards purging it and integrating it into my life”. “Purging” and “integrating it into my life” might seem to be opposite, but I think this writer meant similar to those who said, “once it’s outside its easier to deal with”, and “I do find it easier to talk about it now”. It seems that writing can purge (unburden, release from being bottled, empty from the dustbin) this personal material from an inaccessible internal lodging, to where it can be dealt with, talked about and reflected upon. Then it could be repositioned “in some sort of order”. These people did not read each other’s essays or interview transcripts on how they felt about the writing, so it’s interesting that so many expressed themselves in such similar metaphors.

This writing was not easy: it was a deeply emotional journey for each writer. Such thoughts, feelings, and memories were not lightly given to the “dustbin men”: “the writing process allowed me to discover the things that were still problems and unresolved issues in my mind … [it] brought a lot of simmering and difficult emotions to the surface.” Yet these writers felt it was worth it, the same person finishing his essay with “so its been a good experience for me”, and another wrote, “writing is a safe vehicle for recklessness.” Aristotle speaks of watching a poetic tragedy on the stage “producing through the pity and fear caused, a catharsis of those emotions” (p10; 49b27).57 One of the writers spoke of their writing as cathartic, and two others as purgative (the literal translation of cathartic). The cathartic stage of experiencing these extremely painful feelings, and the ensuing stages of reflecting upon the emotions, memories and thoughts and facing the situation, were all powerfully disturbing and painful. People need support both when undergoing them and also to reach therapeutic acceptance.

A very young teenage cancer patient, an asylum seeker who lost all her family except for her sister, started writing about her home and family memories. She dissolved in tears, and was prevented from continuing by a medical intervention. On a subsequent occasion her eyes followed me round the ward until I hesitantly went to her to ask if she’d like to try again. Her eyes brightened. Despite poor English and desperate tears, she started again with the same words and wrote her heartrending piece. It begins: “In my house in Angola we had a lot of beautiful flowers because my mum said the flowers bring peace at home, and she liked that so much.” Her essay about the writing was merely: “I like doing it a lot. I like to remember. I like to think about it.”

To balance this, a further common theme was how the very creative process made for pride and enhanced self-respect and confidence: “I’m proud and stimulated by some of the things I’ve written”; “It’s something I have done myself. No-one can correct me. It’s mine. It doesn’t matter if it’s right or wrong.”

A staff member who contributed to the qualitative data wrote:

As for the work with patients I thought it was fantastic on so many levels. Having someone new, who was so confident in what they were doing, became a feature of the week that many patients looked forward to. The writing sessions were a welcome addition to the routine of activities and were offered in a very approachable way that many patients felt able to try. In at least one instance a patient had not been able to verbalise his feelings but found he could express them in writing and went on to use art as well. It was deeply personal and private for him and I believe he was much more at peace for it. For others it highlighted issues that they perhaps were not aware were as important as they were ie, when describing characters in a story one patient always seemed to concentrate on the girls hair. The patient had thought she herself was fine about her own hair loss and the stories raised it as an issue for her that she was then able to talk about and accept better. The writing definitely affected other activities such as the patient group, patients who had written together talked much more easily together than they had previously.

The great thing about the writing is that the writer is in control every step of the way. It was presented in a non-threatening and non-pushy way, which helped everyone to feel safe.

I found the whole experience enriching and enormously positive. The writing is a hugely powerful tool, which enables people to get in touch with themselves at a level that is much deeper than many were expecting. (Staff member, web logging (blogging))

A cancer patient in palliative care emailed me after I’d visited:

A few ideas came into my head the moment you walked out the door last week. I finished up writing something. It just all came out as one fat lump. First-draft. Finished. I put it straight onto my website.

TERMINAL. 11/3/04.

Have I been abandoned,

Or in the scheme of things, just set free,

Like cherry tree blossom on the air,

Or a leaf dropped upon

The turbulent surface of a stream.

Its not that my doctors don’t care.

What more can they do.

I could turn, stretch out my arms

And say “don’t leave me on my own,

I’m ill and feel secure with you there”.

But I’m the one going to die.

The one bringing tears to the eyes of children.

So in an effort to understand

Why we finish up alone,

I must rationalise my fears

And become strong.

Blogs go out to an audience of anyone, as this writer made clear on his website: “After starting to tell you about the problems of my early teens, I feel a great relief. Some of the pressure, the need to spill more of the beans has gone, but there is more that needs to be said. Those events had a negative effect on me and the way I’ve lived my life.” By “tell” he means post on the web. “You” is his audience out there—strangers as well as known people such as family, friends and me. The web might be public, but it is also impermanent. Such personal writing is open to being rewritten, re-thought through. This plastic quality is an essential therapeutic element: “there’s always an option to un-write.”

Poetry

The writing above, which “just all came out as one fat lump. First-draft. Finished”, came out in poetic form. It often does. First-draft. Finished poetry seems to be conducive to people exploring vital existential thoughts, feelings and experiences. Quick and succinct, poetry does not need to have the bulky prose structure of sentences, paragraphs and reaching the right-hand page margin; and it can leap from one idea or image to another. This speed of first draft composition, which can enable a grasping of psychologically elusive but vital images, thoughts, feelings, experiences, is not specific to therapeutic writers. Here Seamus Heaney writes of the process of another great poet:

… Czesław Miłosz’s frequent claim that his poems were dictated by a daimon, that he was merely a “secretary”. Which was another way of saying that he had learned to write fast, to allow the associative jumps to be taken at a hurdler’s pace. 58

Poetry is not always the right medium for the expression of strong experience such as bereavement. Here is poet Mark Doty explaining why he wrote Heaven’s Coast59 in prose. “Poetry was too tight, too contained for the amount of emotion I had to express when Wally died. I wallowed in sentences, they were deeply satisfying” (personal communication).

Poetry, furthermore, importantly uses image as a medium of expression and mode of exploration.60 Are cherry blossom or autumn leaves abandoned when they fall, or are they a free beautiful gift from nature? “Like cherry tree blossom on the air, /Or a leaf dropped upon/The turbulent surface of a stream.” If the first stanza was only the first two lines: “Have I been abandoned, /Or in the scheme of things, just set free”, without the blossom, leaf and stream images, it would be not nearly so significant or memorable. In poetry, a writer can introduce the idea of turbulence with all its attendant emotions, by inserting the one single powerful word in the right place. Without the word “turbulent”, these lines would have far less power.

The poem below, by a 14-year-old cancer patient, is full of image, with a story just beginning at the end. Note how the writer moves from the outside cold and dreary images to the hopeful, joyful inside. I am reminded of another patient, who wrote that writing helped him to “consider the value and quality of whatever you’re doing now”.

Darkness, cold weather, damp and dreary

Sleet and rain

Cold toes and feet

Brown and green trees in thick deep and white snow

Owls deer and foxes

Christmas carols and bells

The colour of tinsel

The smell and taste of Christmas cooking

Drinks of all sorts

Tommy wears a red Christmas hat

with a white bobble on the end

a shirt, a jumper, brown trousers and trainers

His job is to set up the Christmas tree

Putting up the actual tree, the lights

Putting presents under the tree.

Story

Writing seems to enable the creation and telling of valuable stories, either to the self or to others. Stories are our human filing system: we don’t store data as in a computer, we story it. Once storied, complex events can take on an appearance of greater coherence and comprehensibility.61

Everyone has some sort of story of their life. They feel they know who they are and where they came from and have some account of where they think they are going. Illness, terminal diagnosis or bereavement can inevitably make this previously workable story no longer functional, or even broken.11 “I might never see my grandchildren”, for example. Previous hopes and fears, plans and aspirations can become irrelevant.10 11 Considering the story of their life, in a form which includes the illness, bereavement or possibility of death or disablement, can enable people to make greater sense of their new lives.6264

Fiction or autobiography

Many of the people I worked with wrote about events in their lives, seeking to make some sort of sense in the writing. One patient wrote about the death of his mother, comparing it with his own experience of cancer, and trying to work out the significance of her dying of the same disease while he was so very ill himself. Here is an extract from my field notes:

[The patient] said he used the writing to help him to regain a hold on reality. He felt he’d lost the plot in his life, was identifying too closely and muddlingly with other people he knew with cancer. He found it very useful when I suggested that the illness has made him lose the plot of his life, by disrupting it so thoroughly. I suggested he’s writing to “heal his story”.10 11 He found this metaphor very useful.

Some write fiction. The only poem one patient wrote for this research was the one just quoted. All the rest of his writing was fiction. Here is the final section of a story about a 5-year-old protagonist:

The other children that he had made friends with on the ward were very friendly and talkative. They knew each other for about a year now, and they were ready to do anything for each other because they had gone through so much together, experienced so many pains together.

The next day the organisers introduced a singer who brings the children some presents. He sings pop music, and he’s been on Top of the Pops. His songs have been number 1. He also does many charity events, concerts, and he loves children. With him he brings copies of his albums with diskmans—one for everyone. And autographed pictures, and photographs and things like that. All the children are really excited when he sings live for them.

He has heard about Ben’s sleeping problem and he tells him that everything will be ok. He tells him to listen to his music and that’ll help him sleep. He tells him to just think of ideas at night for stories—could be anything—adventure, fantasy, horror—like the story they heard read at night. And he tells him that the ones he wants to remember maybe he can write them in his diary or something the next day. He suggests Ben might write a diary about what’s been happening.

Ben is amazed at what the superstar is telling him and he is surprised at how much the guy knows about him and his life.

In the common room after hearing the story all the children and the nurses say goodnight to each other with hugs and kisses and retire to their beds.

As Ben wasn’t sleepy he reflected back on the words of the superstar. And he decided to write a diary.

Firstly he wrote about his parents and his family being there for him all the time. He dedicated a number of pages to his kittens for being there no matter what happened, even when he was in trouble.

We wrote about all of his friends, his superstar, all that had happened on the first day. He wrote about the nurses taking care of him well, activities taking place, and what he planned to do ahead.

He writes a couple of lines about the surroundings and the countryside.

He thinks he can cope with it now, and people have comforted him and told him of techniques he can use.

He came back to the present and dreaded the moments when his parents would leave him.

He lifted up his diskman, put the headphones in his ears and slowly closed his eyes.

I quote from my research field notes:

[The patient], an extremely polite, serious charming 14 year old, whose school work was nearly always scientific. Yet this long story was written on several occasions. His little protagonist is very young, yet he bravely tackles his fear and isolation in the story situation (one similar to the writer’s cancer ward). And he is helped by an authority figure—a pop star. He used his little character’s struggles and life successes to say things to himself. A 5 year old can be frightened, and accept such help. [The patient] can accept it on the 5 year old character’s behalf.

[The patient] was always very definite about his stories. I made an error once in typing because I couldn’t read the writing. He very politely told me he must have said it wrong before, but what he meant was … He then repeated exactly what he’d written the week before. Yet despite this clarity and certainty, he often used the provisional tense—maybe the character did certain things. Does he live his life in maybe? The pop star is the wise person who knows Ben inside, and can offer wise advice. The pop star knowing about Ben’s sleeping problem came quite out of the blue; the story shifted emphasis and importance from then.

This young fiction writer was using his story to hear the strong wise authority figure in his own head: the pop star is his own wise strong self.

CONCLUSIONS

These palliative care and cancer patients expressed the ways in which therapeutic creative writing can be beneficial for exploration and expression of personal thoughts, feelings and experiences. Such areas can normally be difficult to access and painful to communicate. The patients found useful (a) the processes of writing and (b) talking about their writing to me—the writing therapist researcher—and to others such as relatives and clinical staff. Engaging in writing processes similar to the initial stages of literary writing, as well as talking about their writing, provided essential reflection at a significant stage of their lives.

Acknowledgments

Deep thanks are due to the patients who so generously gave their time and fragile energy; to the staff who were so supportive despite their onerous and deeply caring work; to University College Hospital London Myerstein Institute of Oncology and Teenage Cancer Trust Unit, Camden Palliative Care Unit, King’s College London Department of English and Arts Council England for enabling this study into a vital unresearched area; and finally, and vitally, to the members of the research steering group.

REFERENCES

Footnotes

  • Funding: Funded by the Arts Council England.

  • Competing interests: None declared.

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