Cancer Flashcards
Timmerman (2011), cancer memoirs
Some commentators have dismissed the recent proliferation of cancer memoirs as an expression of sentimentality, but even cultural historians trained to steer clear of essentialism may do well to recognize that those facing the inevitable reality of death have tended to look at life differently, searching for meanings and aspects of their biographies addressing the ‘why me’ question, be this in the Victorian period or the early twenty-first century.
Arnold-Forster (2016), Johnstone, Baines, 2015
claim that in the early
years of the twentieth century, leukaemia would not have been described as a cancer by researchers or clinicians. While it is beyond the scope of their book, in the nineteenth century the disease was defined by its materiality and could only be treated by surgical methods
they argue that in the 1930s the category was subdivided. Childhood cancer was
made substantively different from adult afflictions, but still recognizably the same
disease with the same name
In post-war Britain the number of cases of acute leukaemia in children
rose substantially
Not only were more children being accurately diagnosed after the Second World War, but also the introduction of antibiotics likely affected the incidence of leukaemia, as children who might have otherwise been killed
by infection were now surviving infancy.
also, a ‘real’ increase, caused by pregnant women receiving X-rays
Arnold-Forster (2016), 20th C disease
cancer is conceived of as a twentiethcentury
disease. Running through popular perceptions of cancer, as well as academic histories,
is an association between the disease and modern life
widely held and persistent belief that cancer only emerges onto the stage in the mid-twentieth century.
This emergence is understood as political and social – that is, when cancer was supposedly
first subjected to public programmes of research, provided with large-scale fundraising
plans and debated in Parliament. It is also understood as epidemiological: cancer
is, for many, an unintended consequence of modern styles of living and post-industrial
life.
Arnold-Forster (2016), key recurring theme
is cancer’s burden on society increasing, or are ‘cancer epidemics’ the product of improved diagnosis, increased hospitalization,
longer life expectancies and the reduction of infant mortality
Arnold-Forster (2016), what does modern life mean?
Is it accurate diagnosis, is it effective public and preventive health, is it pharmacological advance, is it improved life expectancy, or is it increased environmental toxicity?
Arnold-Forster (2016), Skuse (2015)
She argues that cancer
was made into a knowable ‘object’ through its discursive connection to the crab
cancer’s relation to the early modern gendered body
was made, in part, through its metaphorical links to generation and reproduction.
Not only did the disease appear to manifest most frequently in female sex-specific organs – breasts and uteruses – cancer tumours’ semi-sentient status also shared much with the nascent life of conception and pregnancy.
Skuse covers the period between 1580 and 1720, and argues that cancer was
prominent in life and medical discourse in early modern England.
challenges the association between cancer and modern life
Toon (2014), Through the Night
BBC1, early December 1975
the story of a young working-class woman with breast cancer and her encounters with the medical establishment.
estimated 11 mil viewers
teleplay’s airing, and the media debates that followed, thus illustrate a crucial shift in the history of cancer in
Britain, a shift that made sufferers’ experiences of cancer and its treatment a central element in representations of the disease.
Toon (2014), TTN = radical
explicitly encouraged viewers to see cancer treatment—and medical care in general—
through the patient’s eyes.
But not a challenge to medicine’s authority, but a call
for doctors, nurses and hospitals to reform themselves and deliver care more humanely
Toon (2014), cancer in the British media before the late 1960s
nation’s newspapers, magazines, and radio and television programmes generally presented cancer as a diffuse scourge to be conquered by science, charity and the state, and their discussions of cancer usually highlighted biomedical research news or announced new equipment and facilities
Toon (2014), newspapers and magazines early 1960s
began to trumpet early detection of cervical cancer
through smears, feeding a vocal campaign by women’s groups to make screening a national priority
even these - little to say about treatment/ everyday experience
Toon (2014), Caroline Nicholson and rising attention to breast cancer experiences
1968, briefly discussed her
own experience with breast cancer in the Guardian.
1973, Nova featured a lengthy investigative piece by Nicholson, who interwove her own and other women’s personal experiences into
her review of treatment trends at home and abroad
The next month leading weekly Woman’s Own took the subject to a much broader audience, devoting several pages to a personal narrative by the American child actress-turned-diplomat Shirley Temple Black, reprinted from the US woman’s magazine McCalls
Toon (2014), TTN background
- written by Griffiths based on observing experience of his wife Jan - social worker - undergoing breast cancer treatment
Toon (2014), Through the Night, key storyline events
- surgeon Seal performs combined biopsy-mastectomy w/o Christine having understood that this was a possibility
- C locks self in toilet stall - Nobody says anything. They treat you as if you were already dead. The specialist, he never even looked at me, let alone spoke
-Pearce, trying to talk her out: we have lost all idea of you as a whole, human being, with a
past, a personality, dependents, needs, hopes, wishes. Our power is strongest when you are dependent upon it. We invite you to behave as the sum of your symptoms. And on the whole you are pleased to oblige
Toon (2014), med reviews of TTN script before production
reviewers included, for example, John Wakefield,
who led the Christie Hospital, Manchester’s pioneering Social Research Department, and the Health Education Council’s A. Dalzell-Ward.
All commentators commended the script, agreeing that while TTN depicted many uncomplimentary examples of careless practice and bureaucratic mistakes, such practices and mistakes were, sadly, accurate depictions of the realities of hospital care
surgeon Wheeler, pointed out that doctors were aware that they were legally bound to make sure patients
understood consent forms
Griffiths and the production team held firm, bc hurried presentation of modified consent form was what had actually happened
All these commentators commended the script, agreeing that while TTN depicted many uncomplimentary examples of careless practice and bureaucratic mistakes, such practices and mistakes were, sadly, accurate depictions of the realities of hospital care
In fact,
medical professionals and
health educators hoping to change practices around cancer treatment threw their
support behind the production of the play, as it provided them with more ammunition
Toon (2014), Peter Maguire
Published in the Nursing
Mirror and later in the BMJ, the work done by Maguire and his colleagues was amongst the earliest British research to consider how counselling and aftercare could improve women’s experiences of mastectomy
One widow remembered
that At night another doctor asked me to sign a form agreeing to the operation…just a vague possibility of further surgery…but he thought it most unlikely. He inferred it was just a formality…but I couldn’t sleep. I hadn’t thought I’d need a big operation. No one had told me anything
Maguire’s later work argued strongly for specialist nurses providing aftercare and counselling to mastectomy patients.
Toon (2014), audience response to TTN
BBC’s Audience Research Department, surveyed sample of viewers
Many viewers cited by the audience researchers stressed how ‘real’, how true to life the play’s depiction
of Christine’s experience seemed to them, with several respondents even ‘confirming, from their own experience, the accuracy of the picture’.
Toon (2014), Agony aunt Marie Proops, Sunday Mirror
letters to her:
even amongst those who had had positive experiences of treatment, the majority believed that Christine’s ostensibly fictional experience was entirely possible in real life.
Glamorgan woman
wrote that she had been reassured that the consent form was ‘just a formality, and that her lump couldn’t be anything serious’ but then awoke in the ward to find her breast gone.
Proops and those who wrote to her sustained a largely positive attitude towards
breast cancer treatment generally—or at least about the treatment’s ultimate medical value and their own abilities to eventually adjust to it.
One Birmingham woman - To every woman I say, go as soon as possible, have no fears at all. To lose a breast
is better than losing your life.’
Toon (2014), Tonight discussion aired after TTN
Griffiths noted that even if Christine’s experience in hospital had been bad, she was better off for having received treatment.
Toon (2014), BBC survey questionnaire after TTN
showed that a greater percentage of those who viewed both TTN and The Changing Face of Medicine rated themselves as ‘more
worried’ about cancer than those who had only seen the documentary
Bingley and others (2006), rise in cancer illness narratives in English
last half century - combination
of technological revolution and changes in medical
treatment and expectation around survival have fuelled
an unprecedented increase in written narratives of illness and facing death.
exponential growth w rise of internet
Academic interest has been prompted by the volume of
‘illness narratives’ in the public domain. These narratives, defined as ‘pathographies’ by Anne Hunsaker Hawkins (controversially because the narrators never refer to their
writings in these terms),are ‘book-length narratives about the author’s illness’.
Narratives about ‘dying-of-cancer’ are a recent phenomenon, only starting to emerge as a distinct genre in the 1970s.3,6 Up to this time, a writer might make
mention of a final illness at the end of an autobiography, but examples of specifically writing about dying / as the
main purpose for writing the text / are rare
many published illness narratives are written by those already skilled in the medium of language.
Bingley and others (2006), non-cancer illness narratives
lack of narratives about facing death as a result of heart disease or stroke
may be due to the fact that people either die immediately, are severely disabled by the effects of the stroke, or they are very old and affected by multiple ailments which
compromise expression or confidence in writing
diagnosis stories, in particular of neurological, organ failure and heart failure, tend to focus less on the circumstances around the diagnosis than those of cancer narratives
Bingley and others (2006), four recurrent themes in illness narratives
- the moment of diagnosis
- the story of subsequent treatment and sufferings
- the experience of medical interaction
- the self as an individual; with an independent life and
relationships when outside the world of medical
interaction
Bingley and others (2006), stories of diagnosis
probs most written about
Almost all narratives record that the diagnosis had been preceded by suspicions over many months or weeks
Jo Hatton found to have terminal heart disease aged 14 years old, as a result of congenital heart defects, was left to guess the truth of her fatal prognosis for weeks until she finally demanded that her mother tell her what
doctors had told both parents, but refused to discuss with her
Helen Scott-Davies describes the delivery of her cancer diagnosis as ‘blunt and direct’
Every cancer text, from the 1950s to 2004, tells a litany of missed or wrong diagnosis, in some cases spanning more than 3 years.
Bingley and others (2006), body image
Anne Charlesworth, in the last stages of cancer, writes in her poem The polar bear at Chester zoo comparing her situation locked in a sick body to the situation of the polar bear locked in the zoo.
Hair loss due to chemotherapy was a major concern for cancer sufferers, most likely to be discussed by
women.
Rachel Clark - found myself staring into the eyes of a creature who would not have looked out of place on the set of ‘Star Trek’. I was horrified. Before this point I had known I
was ill but now I looked ill.
Bingley and others (2006), medial interaction
Some narrators, such as Anne Dennison in 1995,51 Ruth Picardie in 1998, and Helen Scott-Davies in 2004,
write very forcefully to illustrate bad practice in the form of insensitive, at times callous, interactions they experienced with doctors, nurses or other medical personnel.
Bingley and others (2006), symptom control
so much of the illness story is based around accounts of physical and mental suffering
Managing to maintain autonomy, physical control and mental clarity were central to all narrators
1957, Charles Wertenbaker was driven to seek out extra morphine himself, as his doctor was only allowed to administer a relatively small, and hopelessly insufficient, dose.
By 1981, Philip Toynbee
was comforted to read in a book that his symptoms from
terminal cancer would be easy to control and he did
indeed find some effective relief
Arthur Ashe in 1993, Derek Jarman in 2000 and Oscar Moore in 1996 describe a state of quite extraordinarily horrible and multiple suffering as they die of AIDS
Lynn Simonds in 1979, and Sadie Dunnet in 1973 describe a considerably less ‘messy’ dying as they succumb to brain tumours.
Bingley and others (2006), methodology
sample of 63 narratives was purposively selected for in depth analysis
Bingley and others (2006), professional med and discussions of death
In almost all narratives, the discussion of death, where
present, is a deeply personal one, rarely described as
involving any professional medical interaction. Instead,
medical interaction about the reality of facing death is
often described in terms of the place and time of
diagnosis and is quite separate from the narrator’s
writing about their thoughts and processing of the fact
of death
Bingley and others (2006), the act of narrative writing
therapeutic
purpose is to organize and make sense of traumatic experiences
Pennebaker - Writing acts as an emotional expression affording relief (at times only subtle) from the depressive effects of suppressing feelings about death and dying
Bingley and others (2006), Jackie Stacey
wrote a ‘cultural study of cancer’ from a feminist cultural perspective, in response to her diagnosis with a large teratoma, which she was fortunate to survive.
Acc to Stacey, the cancer narrative written by the patient tells us of ‘heroic struggles’, ‘stories of transformation’ and
stories of cancer as a ‘positive source of self-knowledge’.
When the person has died ‘the story told is one of loss and of pain, but also tends to be a celebration of their courage and dignity’
Underlying the various illness narratives, Stacey argues,
lies a need for the continuing construction of self:
Thus, the illness narrative
provides a forum and arena for continual creation and recreation of self in any number of different contexts
Grinyer (2006), Plummer (2001), life stories
the telling of life stories has become such a ‘voluminous
business’ that it could be argued that we live in an auto/biographical society where autobiography is becoming ubiquitous in everyday life in a variety of forms from TV talk shows to CVs.
Grinyer (2006), talking about death
Despite Hawkins’s (1990) claim that we are ‘obsessed with death’, there may still be a cultural resistance to talking about it.
Klass et al. (1996) report that a father whose son
had been dead for 10 years said that early in his grief people seemed afraid
to talk to him about his son
ability to talk about death is still unacceptable for many.
long after it is no longer considered appropriate to talk about the death, the bereaved parent may still need an outlet in order to retain the lost loved one, and
writing may be the only option.
Grinyer (2006), Davis (1999), perpetuating memory
she wrote to transform her brother’s death into something more than the end of his life
Grinyer (2006), Klass et al. (1996), grief
part of the resolution of grief is ‘making the pain count for something’. One of the ways this can be achieved is through helping others.
Grinyer (2006), methodology
narratives that form the basis of this paper are written by the parents of
young adults with cancer – most of their sons and daughters died from the
illness
Grinyer (2006), ppl needing excuse to write about loved ones’ illness experiences
Gabrielle: Your project gives me permission to think, write and talk about Steve and this is an unexpected
comfort.
Grinyer (2006), importance of helping others for the bereaved
decision to submit the writing to the research project was motivated by the belief that the writing may help others, thus ‘making the loss count’
Grinyer (2006), Peretz (1970)
‘Bereavement may be viewed as an illness’ since it represents an altered state of feeling, thought and behaviour
(Thus, in some senses, the parents in Grinyer’s study were also telling the story of their own ‘illness)
Grinyer (2006), follow-up
Results from the follow-up suggest that participation
was primarily viewed as positive and beneficial by the parents.
Despite the pain involved in committing the story to paper, the longerterm effect – on reflection – was regarded positively
Two parallel events are occurring in such activity. The first is the act of writing, which may in itself be experienced as therapeutic; the second is
the perpetuation of the story of the lost loved one while paying tribute to their memory.
Winslow, Seymour, Clark (2005), methodology
67 published narratives were included in this analysis and were selected, as far as possible, to represent diverse experiences of cancer pain in a range of international contexts.
subselection of 17 is discussed in this report
Winslow, Seymour, Clark (2005), rise of cancer narratives
early 1940s and 1950s, personal cancer narratives proved scarce
1960s witnessed growing interest in the publication of cancer narratives;
Thereafter, narratives of cancer are increasingly in evidence
Winslow, Seymour, Clark (2005), Hinton 1971, cautionary note on reliability of studies of patient testimony
attempts to collect such material ran the risk of producing highly selected or
misleading information, and the value of this information in terms of scientific reliability or validity was questionable.
however ‘imperfect knowledge’ = preferable to evasive silences
Winslow, Seymour, Clark (2005), ‘imperfect knowledge’
this is where value of first hand accounts lie.
Narratives recount truth as the individual understands it
Winslow, Seymour, Clark (2005), importance of personal narrative
need to attach meaning to cancer and to pain.
one way to achieve this can be through the formation of a personal, non-medical narrative about the cause and course of the disease.
A personal narrative thus becomes an active way of dealing with disease, of taking some control and of generating a coping strategy
Winslow, Seymour, Clark (2005), pain
Edna Kaehele’s Living with Cancer, written in the early 1950s in the U.S., describes how her pain was generated by her fear of physical suffering. So that her ‘greatest agony’ arose from
waiting for ‘unbearable pain’ to begin
problem of obtaining satisfactory pain relief in hospital strengthened Linda Evans’s resolve to
care for her husband at home and he was discharged
with a generous supply of palfium tablets. She came to know intuitively when and
how to help with the pain:
I knew the pain I knew when the pain was bad and when it was less bad, simply by being
with him, I intended to use this knowledge in administering the drugs. It was a much better guide than a treatment card that said
four hourly or two hourly as necessary
Winslow, Seymour, Clark (2005), talking about death
1960s = period of growing disclosure
Winslow, Seymour, Clark (2005), devastating effect of severe pain on sufferers
nurse Nessa Coyle observes: “It can lead patients to desire death and family and caregivers to feel that death would indeed be a blessing
Winslow, Seymour, Clark (2005), heroin as analgesic US
Heroin is about four times as powerful an analgesic as the synthetic pain-killer now in
use in most American hospitals. It is used
regularly as a pain-killer in England, where it is the official pharmacopoeia of medication.
Federal law prohibits its being prescribed here, on the theory that it might spread the plague of heroin addicts.
Winslow, Seymour, Clark (2005), John Costello
In Britain in 1990, John Costello, a registered
nurse, published an account of caring for his terminally ill father. He compared the
quality of his father’s last days with those of his mother who had died in hospital of cancer,
seven years previously. The memory of her pain, and particularly her fear of pain, motivated the family to care for their father at home,
where they successfully controlled his pain with
morphine and codamol
Winslow, Seymour, Clark (2005), O’Neill, poor palliative care
Writing in the British Medical Journal in 1999, Joseph O’Neill, a palliative care physician, relates his father-in-law’s experience of prostate cancer in 1993.
Overall, the medical staff, with exceptions, communicated poorly, spent little time at the
bedside, and were extremely parsimonious in their prescription of symptom relieving medication, despite having been told that both my wife and I had over four year’s experience in palliative medicine between us
On one occasion it required a confrontational meeting with the ward sister and junior doctor to have a small dose of a pain killer prescribed for breakthrough pain. A wait of several hours for an analgesic dose to be administered for acute pain was not uncommon.
What lessons did we learn from the experience? Firstly, listen and communicate. Listen to the dying patients and their families. At no stage during my father in law’s final hospital stay did a doctor sit down and discuss his condition with us, to find out what he and we did or did not want at the end of his illness.
Winslow, Seymour, Clark (2005), study with terminally ill people in East London
in the early 1990s, by Michael Young and Lesley
Cullen
A number of those taking part reported tolerating their pain and using smaller
doses of pain-killers than prescribed, simply in
order to maintain a greater sense of personal control:
When it gets to a certain pitch I fall back on it [pain relief].
Controlling pain in this context is seen as an expression of independence
Winslow, Seymour, Clark (2005), transformation in way cancer patients’ voices are presented
At the start of the
period, patients showed a tendency to represent
themselves as ‘objects’ of medical care who had
treatment ‘done’ to them
Winslow, Seymour, Clark (2005), the Zorzas and hospices
Towards the end of the 1970s in Britain, Victor and Rosemary Zorza revealed that deficiencies in hospital pain management were continuing. Their daughter’s pain had spiralled out
of control in hospital and at home and they feared that she faced an agonizing death. Their discovery of hospice care with its emphasis on
regular medication to anticipate pain, coupled
with care of the whole person in mind and body, stabilized the situation and facilitated a peaceful death
Winslow, Seymour, Clark (2005), common thread connecting most narratives
for a hastening of
patient autonomy.
Armstrong-Coster (2005), illness narratives and good death model
For the most part, these texts
tend to comply optimistically with the spirit of Ku¨ bler-Ross’s good death model (1995), presenting a chief protagonist who is usually depicted as acquiring real psychological growth as a result of his/her illness experiences.
Armstrong-Coster (2005), harsh reality of the dying experience - sanitised in K-R and illness narratives
Empirical evidence (Armstrong-Coster, 2001, 2002, 2004), however, reveals that, for many, far from being the final growth stage of life (Kübler-Ross, 1975), dying is instead a time marked by gruelling physical and psychological pain, compounded by the
loss of dignity and autonomy
Dying is, for many, sadly not at all what media wld have us believe
demands of this marketing context colour how these books are framed, functioning effectively to blur the stark realities and issues involved in dying and highlighting the more abstract, moderate
and acceptable concerns.
importance of humour as a sanitising tool - e.g. Diamond, Picardie
Rage and anger seldom appear in pathographies.
Little or no material describing cancer experiences as source of negative emotions
media, like the hospice movement, overwhelmingly project the positive
For society to continue, it would seem that the moral framework must be maintained at all times (Frank, 1995).
Armstrong-Coster (2005), Hudsaker Hawkins’ (1993)
the proliferation of illness narratives witnessed today mirrors contemporary society and is consequently:
appropriate to a more materialistic culture where the physical replaces the spiritual as a central concern, where the physician replaces the clergyman as the agent in the healing process, and where scientific laws replace religious dogma.
Armstrong-Coster (2005), similarities between past illness narratives and those more recently published
hundred and fifty years separate the texts of Alexandrine’s letter and Picardie’s emails etc
Both Alexandrine and Picardie acknowledge their awareness of the fact that they are dying and share this with their respective female friends. Alexandrine entreats her friend to ‘pray for me often when I am in purgatory’ and Picardie discloses how she ‘can’t face any more treatment’. The value that individuals draw from social support would seem not to have been eroded
both missives resonate with hope.Just as Alexandrine’s religion and culture have
inculcated her with the belief in life after death, so too has Picardie’s late twentieth-century
culture infused her with the concept of death as being, if not inescapable, then at least, to a temporary extent, avoidable
Armstrong-Coster (2005), John Diamond interviews
writing therapeutic in two ways
- helping to comprehend
- touring incidents into journalistic rather than life challenges - easier to deal w
getting thousands of letters from other cancer patients and their friends and families
some had ‘always regretted that their spouses or whoever had never been able to talk about what the illness was doing to them’.
as a result of presenting his
cancer experiences in his weekly column, he had even been approached by medical staff, who had read his work, asking if they could: use the columns in the information packs they gave to their patients
I refused – and still do – to pretend that cancer has made me a ‘better’ person. I still prop up the bar, still bitch about colleagues, still flirt with strange women.
Armstrong-Coster (2005), shift in med profession talking about death
recently been a radical change in the medical profession’s inclination to inform patients of their prognosis (Seale, 1998). This escalation in openness means that, as individuals find themselves suddenly challenged with issues relating to their own mortality, their psychological and philosophical attitudes may be examined and adjusted in that new light (Armstrong-Coster, 2004).
Armstrong-Coster (2005), John Diamond justifying writing about cancer experiences
Defending not only his own right to turn his personal illness experiences into a
newspaper column but also championing the entitlement of others to do so, Diamond met the accusation that this genre of work was introspective and confessional and, therefore, not worth reporting. He argued that, as cancer affects such a significant proportion of thepopulation, it made good sense for newspapers to offer personal and subjective accounts of
the events
Armstrong-Coster (2005), Elias 1982, late modern life
Participation in a late-modern, civilized society entails the virtual rebuffing of any issues suggestive of an animal nature
Armstrong-Coster (2005), significance of Diamond’s writing
challenges current cultural representations of life with cancer, which typically present individuals happy to conform to idealized and sanitized versions of dying
Armstrong-Coster (2005), passage in Diamond’s book
describing a night he spent in hospital, he writes:
I was going stir crazy. I wasn’t sleeping, couldn’t talk, couldn’t think. I would lie there watching 3 a.m. turn into 4 and into 5 and then 6 . . . and I would seethe. . . . At five in the
morning of that fifth day I lost it. . . . When the nurse popped her head round to check on me I exploded. Why had I not been given any painkillers?
Armstrong-Coster (2005), Diamond’s wife, Nigella
British You Magazine:
I sometimes feel this huge disconnection between how things are perceived and how things were,’ Nigella says. The ‘‘horrific’’ nature of his cancer has been diluted, she suggests, as has the strain. . . . She believes now that John’s column became a mechanism for denial
‘There was a very, very deep anger, which didn’t always come out in his
writing. I think this was a huge burden for him and a huge burden for Nigella,’ Dominic Lawson said in his oration.
Armstrong-Coster (2005), Seale (1998)
as a result of Glaser and Strauss’s (1964, 1965) work on awareness contexts, in late modern society, heroism has not disappeared but has modified its form, opening up the role to embrace the idea of ‘ordinary heroes’ and so making it potentially
achievable to all through their dying. Seale cites the dying self as being: engaged in a heroic drama, involving the facing of inner danger, engagement in an
arduous search, defiant displays of courage, and the demonstration of the (once ‘manly’) virtues of compassion.
Armstrong-Coster (2005), threat of cancer to the mind
The change in identity that accompanies dying is related not only to corporeal aspects but also to those of the mind. This can result in unpredictable mood swings and switches
Diamond - I realised what was happening when one
day Nigella said something with which I agreed and to which I meant to respond
‘Absolutely!’ But the word which came out was ‘Yes’… the John Diamond who says ‘yes’ is a different person from the one who says ‘absolutely’.
Armstrong-Coster (2005), Froggatt 1997 hospice literature
partial and selective, promoting an idealized vision of the positive aspects of dying while glossing over any possible discord
Hawkins (1999), roles of illness narratives
- guidebooks to the medical experience itself, shaping a reader’s expectations about the course of an illness and its treatment.
- gold mine of patient attitudes and assumptions regarding all aspects of illness.
- Writing about an illness experience is a kind of psychic rebuilding that involves finding patterns, imposing order, and, for many, discovering meaning.
Hawkins (1999), authors of ‘pathographies’
do not include the very poor; indeed, most are middle class.
Hawkins (1999), why do ppl write pathographies?
- in earlier times, sickness was considered an integral and inseparable part of living and dying. Thus sickness took its place in an individual’s memoir alongside other experiences in life.
- sense Of depersonalization that many feel about medical treatment today. By writing pathographies, patients not only restore the experiential dimension to illness and treatment but also place the ill person at the very center of that experience.
Hawkins (1999), four types of pathography
- “didactic pathographies.”
motivated by the explicit wish to help others. Often they blend practical information with a personal
account
-“angry pathographies.”
Authors of these are motivated by a strong need, based on personal experience, to point out deficiencies in various
aspects of patient care.
- “alternatives pathography,”: search for alternative meds
- “ecopathography,” links a personal experience of illness with larger environmental, political, or cultural problems. In these books, illness (usually AIDS, certain cancers, or chronic fatigue syndrome) is perceived as cultural disease, “the product of a toxic environment,”
Frank (1994), three narrative tensions in illness narratives
- telling private experience in public voice
- author must strive to keep her voice paramount among medical versions of what is happening to her.
- tension between illness that occasions the narrative and the life-outside illness still being lived
In all three tensions the contemporary writer of illness narratives struggles to sustain a voice
Frank (1994), culture in flux
Cultural preference for third-person accounts
suggests that norms of respecting the privacy of the ill have more to do with protecting those who do not want to hear too much. But the proliferation of first-person illness narratives suggests cultural preferences are in flux, if not yet changed.
Frank (1994), three voices of illness in illness narratives
-restitution story.
Desire to have hlth restored. search for a proper diagnosis, optimal treatment, and cure.
Ill person only mute object in this story, not protagonist - so this voice not dominant in most illness narratives.
Realm of the Imaginary - ill person is expected to recognize himself in images of health. The physician is
a central contributor to these images,
-chaotic voice.
incapable of storytelling. The losses, the pain, the incoherence of suffering become overpowering.
Any telling can only point toward what happened in the vaguest terms. Order of the Real (Lacan) - mute. Can’t speak when actually in state of chaos. Authentic speech of the chaotic narrative is the scream, and beyond that, only silence.
-quest narrative
dominant voice in most illness narratives.
Speaks from Symbolic - myth. mixed gains - negative, can here experience lack and split between the self we feel
ourselves to be and the image or signification in which this self is formed
Ill people tell primarily quest stories, with voices of restitution and chaos entering the narrative mix, confounding it, forcing the voice of the quest to find itself again
Frank (1994), the quest narrative
three stages:
-the call.
Recognizing symptom as start of journey. Issue is not restitution but working out the changes illness brings. These changes occur in the
course of trials, including the sufferings of surgery and stigma.
-the road of trials.
Trials are not minimized, but they are progressively understood as teaching something and thus they gain meaning.
-the return.
The boon granted at the end of the trials of illness is generally an enhanced subjectivity, extending toward others specifically and toward life generally
the quest voice alone is capable of sustained storytelling.
Frank (1994), foundation for illness narrative…
… and what I suggest makes some narratives more enduring than others, is the capacity to reflect on
one’s own lack.
specific lack initially experienced in surgeries and treatments ultimately gives way to the existential lack entailed in confronting one’s own mortality.
But as this lack is told it is reflexively converted. Lack becomes… at least a basis of social exchange
the author’s recognition of his lack demands the reader’s complementary
recognition of the lack they share as fellow human sufferers
narrative thus becomes a communal sharing of lack
desire of the illness narrative is for this communal sharing.
The silence that covers the scandals of illness, fragmentation, and suffering
is subverted.
The name-of-the-author becomes a demand for others’ names, adding their mutual acknowledgment of limit and lack.
Frank (1994), absence
In Parsons’s sick role, to be ill is to be absent.
illness is a more general absence from the social presence that health
takes for granted and this absence is the reflexive ground of the illness narrative. The text is an attempt to fill in absence. What the ill person is absent from, ultimately, is the plenitude of health. But then this absence turns inside out: this plenitude of health is revealed as an illusion, and illness brings its own boon.
Frank (1994), Authors of illness narratives come to two complementary recognitions
- realize that contrary to their initial expectations, they have stayed very much alive during and in spite of disease.
- they come to regard the “healthy” world with some suspicion. Health = imaginary, and healthy people will do anything to
preserve their identification with this image. The ill are often the brunt
of those self-preserving actions.
Frank (1994), why are illness narratives of value to persons experiencing illness?
for exactly the reasons many physicians dismiss these narratives: they are
simply anecdotes, stories often heard before, merely a distraction from the real work of medicine.
Frank (1994), what do illness narratives signify?
desire to recognize and be recognized by others
Frank (1994), palliative care
The one medical practice that does systematically recognize desire is palliative care.
Here the ill person acknowledges he is dying. The physician acknowledges that she can do nothing to stop death and offers this
reciprocal lack as grounding of a promise to stay and help as she can. That moment of mutual acknowledgment may represent the purest
instance of care found in medicine.
Porter (1985)
we need ‘a patient-oriented history’/ sufferers’ history
must not sentimentalize victimhood as if suffering were beautiful
must avoid rendering suffering as if ‘world we have lost’ were some sort of macrobiotic Golden Age
We need to question medical history’s preoccupying concern with cures
patients have by no means
been so passive as the various “medicalization” theories of Foucault and
Illich might lead us to believe.
Porter (1985), medicalization theory
Medicalization theory harbors another insidious assumption, the implication that the rise of medical power is in some sense ineluctable and unilinear, the ghost train speeding down the old Whiggish mainline from magic to medicine.
But a people’s history of health will show something much less monolithic…sufferers are fertile in their resources, and that feedback processes sometimes mean that medicalization boomerangs back on the faculty, as patients borrow the doctors’ lines
Rose Clark, Cellmates: our lessons in cancer, life, and loss (2013), appreciation for med personnel
Acknowledgements -
1st = Duncan McLaren, John’s oncologist
2nd = Marie Fallon, head of palliative care
This was what I wanted, needed, to hear - that we would soon be in the safe and knowledgeable hands of Duncan
We were in the right place, with the best person. Relief
In our journey through the alien workings of the medical world John and I were fortunate enough to deal with well-respected but personable consultants and doctors.
We appreciated their warmth as well as their expertise
Trusted Duncan, admired how he chose to treat John
They eased the pain, stopped the trauma. They cleaned him out and established a new cocktail of meds which worked
Professor Fallon - always fully aware of John as person not just drug recipient
Marie Curie places a nurse with us overnight to allow me to rest
