Cancer

Question 1

Importance of pathologies for understanding pain?

Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain

Answer 1

The second half of the 20th century saw major advances in the understanding, identifi- cation, and pharmaceutical management of pain in people with cancer.2 Yet, to obtain meaningful knowledge of the exceptionally subjective experience of cancer pain—to under- stand “the pain attached to being in pain”— the voice of the sufferer has also to be heard.

Question 2

The growth of pathologies, or ‘cancer narratives’

Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain

Answer 2

• ‘scarce’ in 40s/50s
• ‘growing interest’ in 60s
• 70s and 80s, expansive
• 1990s, new medium, the internet

Question 3

Why do people write pathographies?

Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain

Answer 3

• a desire to extend support to those in comparable situa- tions, ie patient’s families
• to tackle the stigma that surrounds the disease
• the desire to indicate where care can be improved or to expose unacceptable care.
• Jackie Stacey: ‘with others knowing, am I finally allowed to forget?’
• to ascribe meaning to pain and cancer

Question 4

Anne H. Hawkins’ three categories of pathographies

Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain

Answer 4

• ‘didactic’: stories of illness to help others, 1960s/70s
• ‘angry’: to ‘expose and denounce’ bad practice, dehumanising medicine
• pathographies advocating alternative modes of treatment
• “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 dis- ease, “the product of a toxic environment,”

Question 5

a changing view of the patient in pathographies of the 20th century?

Winslow, M., J. Seymour, and D. Clark, ‘Stories of Cancer Pain

Answer 5

At the start of the period, patients showed a tendency to represent themselves as ‘objects’ of medical care who had treatment ‘done’ to them

Question 6

How can pathographies help physicians who are stretched thin?

Answer 6

These narratives can be especially useful to physicians at a time when they are given less and less time to get to know their patients

Question 7

Hunsaker, Hawkins on pathographies

Answer 7

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.

Question 8

Hawkins on the value of pathography for the patient

Answer 8

‘seems to facilitate recovery: the healing of the whole person’

Question 9

Hawkins on the value of the pathography for doctors

Answer 9

• They embody the patient’s point of view on a variety of aspects of a medical experience. -
• Longitudinal view of illness as it is experienced before and after the patient encounters the physician
• info about alternative treatments
• Reveal cultural attitudes and assumptions about illness, treatment, and recovery (eg, illness as a battle or journey)

Question 10

The growth of blog pathographies?

Bingley et al., Making sense of dying

Answer 10

433 web sites and 92 published narratives

Question 11

In what ways are pathographies a limited source base?

Bingley et al., Making sense of dying

Answer 11

published literature remains largely the domain of the professional
writer, journalist or academic, with occasional examples
of doctors, nurses and others in healthcare writing about
their own experiences

lack of narratives
about facing death as a result of heart disease or stroke

Question 12

The moment of diagnosis in pathography: Rachel Clark

Bingley et al., Making sense of dying

Answer 12

Rachel Clark, diagnosed in 1995 at 25 years old
with a cancer from which she eventually died in 1998,
gives one of the more distressing accounts.42 She
discovered her diagnosis from a doctor who assumed,
wrongly, that Clark already knew. The doctor unfortunately
did not attempt to check how much Clark had
been told:

‘‘Now’’ she [the doctor] continued, ‘‘obviously the first
question you will have is how long have you got’’ she
looked directly at me ‘‘and I’m afraid I can’t tell you.’’
I was confused. What was she talking about? I looked
at my friend, her expression was one of equal
confusion. ‘‘I’m sorry’’ I started haltingly, ‘‘I don’t
understand what you mean. Do you mean how long is
it going to take until I’m better? How long the
treatment is going to take?’’ ‘‘No’’ she hesitated, ‘‘I
meant how long have you got to live’’….‘‘Please don’t go and jump off the Harbour
Bridge.’

Question 13

The moment of diagnosis: Helen Scott Davies

Bingley et al., Making sense of dying

Answer 13

Helen Scott-Davies describes the delivery of her
cancer diagnosis as ‘blunt and direct’:

The phone call eventually arrived. As I have said, I
would like to say my news was delivered with
sensitivity…No softened paths for me. He said, words to this affect (sic) ‘‘the cells are cancerous and we need to fit you in to clinic as soon as possible. My secretary will be in touch tomorrow.’’ There was
no check to see if someone was with me, someone
capable of picking me up off the floor, where my life
had just crashed to pieces. By the way, I was alone at
the time, as it happens. p. 2

Question 14

Anne Dennison, medical interaction

Bingley et al., Making sense of dying

Answer 14

(Dennison published issues of bad treatment –> relationship w. her doctor changes)

There was a relaxed friendliness, a warmth and trust between us that had been lacking before. I was partly
glad she had found out about the article but had
become rather guilty about how much I had hurt her.
Even that seemed to be healing. Towards the end of
the year I had a letter published criticising what I felt
to be a patronising series of articles about how doctors
should talk to cancer patients. I asked her whether she
had seen it and hastened to add this time it was not
intended to reflect anything about our relationship.

Question 15

Discussions of death in pathographies - counter argument to medicalisation?

Bingley et al., Making sense of dying

Answer 15

‘In almost all narratives, the discussion of death, where
present, is a deeply personal one, rarely described as
involving any professional medical interaction.’

…the very individual spiritual perspectives…

Question 16

The therapeutic aspect of pathographies?

Bingley et al., Making sense of dying

Answer 16

The narrative itself becomes an ally with which the narrator
is able to communicate freely, without judgement and
without fears of upsetting family or friends.

writing allows the narrator to work out feelings without risking the social isolation that can result from constantly verbalizing anxieties to distressed friends and relatives.

Question 17

Frank on the value of Pathographies

Frank, A. W., ‘Reclaiming an Orphan Genre: The First-Person Narrative of Illness’, Literature and Medicine, 13 (1994)

Answer 17

a voice of experience rather than the expression of a medical gaze

Question 18

Roy porter on historical distortion and medical history from below

ROY PORTER, ‘The Patient’s View’

Answer 18

it takes two to make a medical encounter -
the sick person as well as the doctor…medical history ought centrally to be about the two-way encounters between doctors and patients.

Question 19

Roy Porter on why the suffer’s role in the history of medicine has been ignored

ROY PORTER, ‘The Patient’s View’

Answer 19

we lack a historical atlas of sickness experience and response, graduated by age, gender, class, religious faith, and other significant variables.

Question 20

What does Roy Porter advocate for medical history from below?

ROY PORTER, ‘The Patient’s View’

Answer 20

we also need, as a counterweight, a patient-oriented history, or, to be precise, in the first instance a sick people’s or sufferers’ history

It can’t be done, critics might reply. You can only know about the sick through doctors’ eyes, their case histories and hospital records…Yet there is no reason why the history of the sick should prove any more
intractable than… any other sort of history “from below. ‘

Question 21

What can pathographies reveal about medicalisation, according to Roy Porter?

ROY PORTER, ‘The Patient’s View’

Answer 21

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.

Question 22

Really crap John Diamond review in the BMJ which exemplifies exactly why we need medical history from below…

Answer 22

what qualifies his book in particular as a medical classic? Although he was not medical, what he did was to crystallise several truths about what it means to be a physician: essentially that patients place a huge amount of trust in us, and we have the capacity to harm as well as help them. He may have written for his own catharsis, but his legacy is to reinforce for the rest of us our sense of the privileges and weaknesses of medicine.

Question 23

J. O’Neill, A Peaceful Death

Answer 23

staff were unaccustomed to dealing with many dying patients…Overall, the medical staff, with exceptions, communicated poorly…parsimonious in their prescription of symptom relieving medication

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.

Question 24

John Diamond

Answer 24

• ‘My cancer was, said Mr Mady on the phone that night, a squamous cell carcinoma…Not knowing about the 57 varieties, all I heard was that I had cancer.’

Question 25

Cancer is Pants

Answer 25

• Blog by a mother of four, Louise, who had breast cancer that metastasised to her liver.
• Details interactions with ‘wonderful’ oncologist
• Documents the impact on her family unit at different levels (her husband, her elder and younger children
• Multi-media (uses youtube)
• Details alternative treatments (Dendritic Cell Therapy, Germany)

Question 26

Susan Sontag, AIDS as a Metaphor

On cancer stigma

Answer 26

• ‘having cancer has been experienced by many as shameful, therefore something to conceal, and also unjust, a betrayal by one’s body…(it) is sometimes understood as the fault of someone who has indulged in “unsafe” behaviour…punishment for living unhealthy lives.

Question 27

Alana Skruce, Constructions of Cancer in Early Modern England

• Malignancy and spread

Answer 27

• the terrifying ability of
  cancers to spread through the body or recur after their apparent cure.
• Mr. Samuel Smith, one of the Surgeons of
  St Thomas’s Hospital in Southwark, who at the cutting off of a large Cancerated Breast, had (after the Breast was off) a Curiosity to taste the Juice… (he fell) into a Consumption, or wasting pining Condition, attended with several other ill Symptoms, which in a few Months after killed him, the Taste thereof never going off from his Tongue to his dying Hour;
• several sixteenth- and seventeenth-century medical practitioners used the terms ‘infection’ or ‘contagion’ in a more casual sense as shorthand for cancer’s potential or actual spread… (a tumour) might also be imagined as driving the intrapersonal spread of disease, so that a cancerous tumour ‘infected’ adjacent parts of the body

Question 28

Alana Skruce, Constructions of Cancer in Early Modern England

• The etymology of ‘cancer’ and its significance

Answer 28

‘cancer’, ‘canker’, ‘kanker’ and
‘chancre’ – derive from the same etymological root: the Greek ‘karkinos’
( Καρκιυός), or ‘crab’.

it implied that cancerous tumours should be viewed as ontologically independent of the body in which they occurred.

Question 29

Alana Skruce, Constructions of Cancer in Early Modern England

What was particular about cancer diagnosis in early modern England?

Answer 29

it is clear that the vast majority of all
diagnosed cancers were on or near the surface of the body, in the breasts,
face and skin.

Despite (and sometimes because of) the best efforts of surgeons, physicians, apothecaries and empirics, most cases of cancer in the early modern period would, like this one, end in death.

Question 30

Skruce - what caused cancer in Early modern England?

Alana Skruce, Constructions of Cancer in Early Modern England

Answer 30

medical practitioners emphasised the provenance
of cancer as humoral. More specifically, the disease was believed
to arise from the much-maligned substance of black bile, or melancholy,
which turned into atrabilis under certain circumstances

In the period
under my examination, only a handful of medical writers offered real
alternatives to neo-Galenic theories of cancer’s cause

Question 31

Palliative efforts in Early Modern England?

Alana Skruce, Constructions of Cancer in Early Modern England

Answer 31

• Palliative cures were typically based upon
  cooling, analgesic remedies for consumption or topical application,
  often containing ingredients such as plantain, nightshade, scabious and
  rose
• opiates such as laudanum, which despite their addictive properties could offer ‘very great comfort’ to patients in the last stages of disease
• Palliative care did not attract the same level of attention as was given to descriptions of, and ‘cures’ for, cancer. Moreover, it was not usually specific to cancer. Given the number of morbid diseases to which one might fall victim during the sixteenth, seventeenth and eighteenth centuries…

Question 32

Kay and Bonnder on the significance of pathographies, and magazine-based pathographies

Answer 32

The expansion of the genre may be seen as
part of recent contestations over the right of
patients to be publicly heard within biomedical
discourse. This genre tends to “privilege the
phenomenological, the subjective, the experiential
side of illness” (Hawkins, 1992, p. 174).
In quite complex ways, it echoes discursive
shifts away from reliance on medical institutions
and towards personal responsibility for
health and well-being

We would argue that magazines, operating as they
do as an integral part of so many women’s
lives, extend these benefits to a broader readership.

Question 33

Autopathography: the patient’s tale
Jeffrey K Aronson,

Key points

Answer 33

The traditional case history stifles the patient’s own narrative, but increasingly patients are writing their own narratives (autopathographies or “patients’ tales”)

An analysis of about 270 book length tales, most written in the past 20 years, shows that more men than women write about their illnesses and that they describe serious, dramatic, or fashionable illnesses—mostly cancers and neurological problems

They write out of a desire to help other patients to come to terms with their own illnesses, to obtain catharsis, to educate and criticise carers, and to make money

Almost all patients’ tales contain denial: ignoring or misattributing symptoms, causes, or the effects of therapy; deliberately hiding the illness from others; and organic denial (anosognosia)

Reading patients’ tales can help doctors understand their patients better and teach them things they won’t learn from textbooks

Question 34

Criticisms of Susan Sontag

Who’s afraid of Susan Sontag? Or, the myths and metaphors of cancer reconsidered. CLOW

Answer 34

RichardJ. Evans, author of Death in Hamburg, criticized her confidence in modern
medicine as ‘at best simplistic, at worst naive’

By the time she fell ill in the 1970s, the metaphors of cancer
were already firmly in place, having been forged in the early decades of the twentieth
century when neoplastic diseases first assumed alarming proportions. - OR EVEN EARLIER? C.F SKRUCE

Sontag’s account of the cancer experience is clearly overdrawn:

• Neoplastic diseases did not inevitably reduce patients to a state of silence or disgrace, any more than
  they consistently daunted doctors or the reading public.
• Rituals and euphemisms did not necessarily render sufferers mute or helpless: in many cases, they helped
  patients, families, friends, and physicians to cope with a devastating disease.