Cancer Flashcards

Question

Bingley and others (2006), medial interaction

Answer 1

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.

Answer 2

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.

Answer 3

sample of 63 narratives was purposively selected for in depth analysis

Answer 4

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

Answer 5

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

Answer 6

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

Answer 7

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.

Answer 8

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.

Answer 9

she wrote to transform her brother’s death into something more than the end of his life

Answer 10

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.

Answer 11

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

Answer 12

Gabrielle: Your project gives me permission to think, write and talk about Steve and this is an unexpected comfort.

Answer 13

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’

Answer 14

‘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)

Answer 15

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.

Answer 16

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

Answer 17

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

Answer 18

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

Answer 19

this is where value of first hand accounts lie. Narratives recount truth as the individual understands it

Answer 20

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

Answer 21

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

Answer 22

1960s = period of growing disclosure

Answer 23

nurse Nessa Coyle observes: “It can lead patients to desire death and family and caregivers to feel that death would indeed be a blessing

Answer 24

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.

Answer 25

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

Answer 26

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.

Answer 27

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

Answer 28

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

Answer 29

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

Answer 30

for a hastening of | patient autonomy.

Answer 31

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.

Answer 32

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).

Answer 33

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.

Answer 34

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

Answer 35

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.

Answer 36

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).

Answer 37

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 the population, it made good sense for newspapers to offer personal and subjective accounts of the events

Answer 38

Participation in a late-modern, civilized society entails the virtual rebuffing of any issues suggestive of an animal nature

Answer 39

challenges current cultural representations of life with cancer, which typically present individuals happy to conform to idealized and sanitized versions of dying

Answer 40

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?

Answer 41

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.

Answer 42

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.

Answer 43

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’.

Answer 44

partial and selective, promoting an idealized vision of the positive aspects of dying while glossing over any possible discord

Answer 45

- 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.

Answer 46

do not include the very poor; indeed, most are middle class.

Answer 47

- 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.

Answer 48

- "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,"

Answer 49

- 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

Answer 50

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.

Answer 51

-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

Answer 52

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.

Answer 53

... 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.

Answer 54

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.

Answer 55

1. realize that contrary to their initial expectations, they have stayed very much alive during and in spite of disease. 2. 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.

Answer 56

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.

Answer 57

desire to recognize and be recognized by others

Answer 58

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.

Answer 59

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.

Answer 60

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

Answer 61

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

Answer 62

Once I knew the bladder cancer was on the prowl I began researching everything I could find out about it. Information was and continued to be my way of dealing with the uncertainty research into BCG treatments hooked up to a morphine drip that he could boost w a button in his hand but he was not aware enough to do so. Shaking badly and I knew it was bc he was in too much pain I called for a nurse and explained this was what happened to John when the pain got too much for his body managed all of John's drug doses on spreadsheets We are managing. We figured out the routine It's now second nature that I notice the slightest change in John The breakthrough meds are the painkiller 'shots' I can give John as he needs them I have built up reliable knowledge of all the oral meds Deep down I know that no one will give themselves so completely to John's care as I do My spreadsheet and I are in control of all the scary meds, which I dish out four times a day plus all the breakthrough injections make the most of appointments with your medical team The more aware you are of the changing condition, the more clearly you articulate your updates and questions, and the easier it is for the medical team to help you Type up a sheet summarising key med hist, current medications and treatments, the contact details of your oncologist and local GP. Keep this updated Make sure hosps know what's going on

Answer 63

Hosps are alien environment for the novice patient not helped by the fact that the med profession seem to work in hostile silos one consultant - 'this ignorant man'. Quickly showed he'd not bothered to read John's notes post-op I want to scream at the doctors. He Is in agony, not able to tell you Why do they not see the person? Why do they look at me like I'ma piece of shit Anger at the arrogant prick of a doctor who dared to snigger in his reply - 'well what do you expect' - when John said he was still in too much pain Hospital wards are not a place of real recovery. The noises of other patients' sickness, emergencies, machines and nurses, slowly scratch away at your mind, provoke your senses until you want to scream out loud to get out

Answer 64

for now I was absorbing the fallout and trying not to take the mood swings and verbal aggression personally. It wore me down 2007 - rebelled against his bullying and resented the situation I was in Burning myself out completely trying to look after John and protect my career in the last two years of John's life, possibly longer, I could only really relax when I was with him and knew he was ok. It was oft an exhausting pull against my own welfare I'm throwing up, when it's convenient, and shaking a lot contracted skin cancer diagnosed w ME

Answer 65

knew they were just doing a job. A job that involves too many patients, too few beds, too few staff, long hours and mostly not a lot of thanks I saw the challenges they (medical professionals) face within a hospital system that tries its best but often fails to feel human

Answer 66

) I found the waiting rooms and wards humbling. My visits made me deeply thankful for what I had and inspired me to see life more simply On one visit, we sat close to young twins, I guess four or five year olds, and their parents. John was brought to tears; he couldn't understand how children could have this disease

Answer 67

John had proved what a survivor he was have to write this for me and for John and to show that, no matter how relentless and powerful your opponent's attack is, there remains an even stronger will to survive, to love and to live When you think it's the end, when you feel deep inside that you can take no more, there still exists the opportunity to experience something beautiful, to find meaning and peace (52) that is what we gained, while in this stinking swamp, something enlightening and profound I was fighting for John he was a man of dignity and self-control In 'advice' section, Rose says - Dismiss the notion of 'fighting' the cancer Accept that there is something in the house to work around

Answer 68

book's name - our lessons in cancer, life, love and loss If there is one piece of advice I give to other people who are struggling to break free from the grasp of cancer it's to get help where you can whole section on advice e.g. accept help that is there soon as you can - Maggie's, Marie Curie, Macmillan

Answer 69

Frustration of physical impact of operation another operation. John's resilience At least in nature the kill is for a reason and it's usually fast. There is no sense, no need for this (John had to return to hospice ward having just built up strength to head home)

Answer 70

By this stage we had become used to pain medications and the benefits and drawbacks of morphine It was necessary (54) helped him do washing and dressing he was desperately upset at his lack of independence after the hip operation It is not right (process of having to go through chemo). But what is the alternative.

Answer 71

honouring John's mindset, we attended the evening wedding reception of the daughter of our neighbours Bill and Ann on Sat 27 Sept Enough morphine, a stiff drink and sheer determination allowed a man who should have been in a hosp bed to turn up and congratulate the happy couple nad their parents John making Claire laugh about licking a battery - John defs here with us again (130) suite overlooking the Old Course felt to John like a dream come true 35th birthday - John happy and pain-free (131) this was defining moment A joy deep in my soul that can never be taken from me John was exhilarated after the tour. No amount of hardcore drugs could mask his delight thankful the meds are balanced enough to deal w some of the pain while retaining John's awareness Your clear eyes, your sharp mind, your dry humour, all died before you did, muffled out gradually by the drugs. But really they gave us those days, weeks, months where you were present

Answer 72

This is a safe place. The building, its energy, its people hug you gently I wish we had gone much earlier than we did knowing this and that we had Maggie's on our side allowed us to get back on our feet. Instead of cancer ruling our lives it would be a part of our lives that we would work around Maggie's Centre for first time since end of Jan. Comforting Maggie's Centre = only place I feel normal I can ask questions at Maggie's Centre which I don't feel comfortable asking anywhere else E.g. How will John actually die? I have chosen to support Maggie's Cancer Caring Centres and Marie Curie Cancer Care by making a donation from the sale of each book - and with my words of gratitude, which really do not go far enough to convey how truly remarkable and crucial both organisations are

Answer 73

I have tried many times to articulate how it feels to watch someone you love in unimaginable pain and be unable to stop it. No words fully capture the revulsion of it, the callousness of it: the way it consumes the person it attacks until they are ina semi-conscious battle to crawl out of their own body

Answer 74

Writing doesn't tell me how to feel, to just keep going, to be positive. It doesn't try to answer something that can't be understood or justified or made softer, it is black and white, it is where I am

Answer 75

Today angry at how much pain he's in and lvls of meds making him feel out of it. Lose acute mental awareness worse than physical independence. He can't remember the pain before the operation, how desperate he - all of us - became. His anger comes at me

Answer 76

We do not accept a timescale of days or weeks. There are things still to say, still to do. John, I know, will not set his soul free until he has done these things I realise how lucky we are to have been given this time I went to the bereavement group at the hospice. It was tough, again made me consider the difference between losing someone suddenly or in a slow way. I am thankful we had time to find our peace, to say and do what we needed to, but I will always carry the weight of your long fight with the pain. If you had did suddenly you would have done so in the strong, fierce way that was you, but then you would not have had a chance to pass on your love and words to those around you Our time was long, bringing knowledge and understanding. I can't imagine the shock if I lost you more suddenly

Answer 77

I'm glad that John and I and these guardians from the hospice are all working to get John home Nurses are going to train me up on how to give John some of his meds before he is allowed to come home My relief, my support, my foundation come from the nurses They are here w John and me at our most vulnerable, sharing our tears and our laughter I know that only the hospice can administer and change the drugs in the way and with the frequency that John now needs to find his mental independence Be open minded about the hospice I found enormous (198) relief once we were under the care of the hospice - a place filled with light and peace where the doctors and nurses had the expertise and authority to administer medication to finally bring John's pain and symptoms under control

Answer 78

Today rly accepted John going to die (Thur 30 July 2009) John's wonderful oncologist of 11 yrs needed to say it b4 we believed it Conversation between two exceptional, strong and v good men

Answer 79

Our return home is as tough a slog as life in the hospital or hospice Bedding reeks of chemicals and sickness, (137) it's the smell of cancer in our safe home bedroom - always my favourite room but it seemed somehow 'medical' and sad to me, I needed to give it new life

Answer 80

My relief, my support, my foundation come from the nurses They are here w John and me at our most vulnerable, sharing our tears and our laughter Maggie's - support in week three the doc said enough was enough and to keep ppl away. To be honest we have no choice I have made myself worryingly unwell trying to keep everyone happy John wants to be at home, he needs me to be able to care for him Our close friends get it but others don't , they are too consumed with their own emotional needs, feelings of guilt, to see they are suffocating us. What matters now is John, the kids and the friends and family he wants close to him To be really honest, dealing with everyone else is the worst bit of this

Answer 81

John doesn't want to die in the house where we can't control things as well, where there is likely to be more pain, trauma

Answer 82

Your clear eyes, your sharp mind, your dry humour, all died before you did

Answer 83

Let's be honest, in our society we are not v open about cancer

Answer 84

When I began piecing together the full story my memory did not gift me all the medical detail I desired, so sincere thanks to Duncan McLaren and Elliot Longworth for helping to fill the gaps.

Answer 85

but John, upon discovering Rose's letters, insisted she publish what she had written about him

Answer 86

It's not a cancer story, it's a love story. With some cancer.

Answer 87

We listen as the heart monitor jumps and make jokes about helping Aaron take a dump in the bedpan “They think it’s small” “Your brain?” “The tumor.” “You’ll be okay.” “I will, I will.”

Answer 88

of Aaron - Before every brain surgery, every chemo treatment, every MRI, he was as constant as the North Star, and I have navigated these choppy waters by his steadfast light. He has complained less about brain cancer than I have about when my phone corrects “gave” to “have"

Answer 89

Accept that someday, you will die Have health insurance. No matter what. Yes, it’s expensive. You know what is more expensive than paying for COBRA before the insurance kicks in at your new job? PAYING FOR BRAIN SURGERY. Fill out a health care directive. Is it fun to run through all of the decisions that may need to be made about your healthcare if you’re reduced to a pile of unresponsive bones in a hospital bed? Of course it is! I’m lying Establish a power of attorney. Who do you want to delete embarrassing emails and throw away the Box of Secrets you keep hidden in your closet when you’re gone?

Answer 90

7-hour throat op, removing part of Diamond's tongue - docs and med student friend - good thing, primary site for him, not gd news - won't be able to speak

Answer 91

odds of being cured were originally pitched at 92% docs too optimistic

Answer 92

hosp - stir crazy after 8 hour tongue/ jaw op

Answer 93

speech therapist - voice of one who does the continuity announcements for some heavenly radio station, nad who is going to teach me how to speak again jokes about how becoming old - will be mugged on way to doc's surgery

Answer 94

bedroom and bathroom and office, all of which are littered with the impedimenta of my new medical routines I have little-old-man things I have to do each day with orange rubber bulbs, and special stiff brushes dripping pungent pink cleaning fluids Three times a day I potter around the bathroom like a little old man, squeezing bulbs, an dcleaning tubes and sluicing parts of my body out and taking pills against pain and swelling and infection and which lie in dozens of bottles piled about the place

Answer 95

in not being able to talk, I am not me

Answer 96

consultant, Peter Rhys-Evans - gave news white-faced, nervous, eyes downcast imagined I'd feel terrified, but was sad most of all. Have been going through standard denial/ anger/ bargaining w God/ acceptance since 1st cancer diagnosis

Answer 97

attacks idea there is a 'confessional industry' of cancer sufferers' stories

Answer 98

plastic surgery to replace tongue. Diamond under impression this wld replace function as well as appearance. this not the case

Answer 99

couldn't conceive of state of tonguelessness trying to figure out best way for ppl to be around him no such thing as right way, only right ppl

Answer 100

many ppl offering their country homes as places for him and fam to stay. has close friends w similar facils

Answer 101

thanks to christians for all the bibles | I remain secular Jew

Answer 102

darling I know just how it feels (frustration w this)

Answer 103

ordinary day-to-day illnesses - diagnosis, treatment, get better chemo - no sense of med doing me any good, every sense of it making hard time harder

Answer 104

told in remission, tumours shrinking, longer to live - thought I was dying quickly now dying... more slowly?

Answer 105

w cigarette in hand, feel some part of me has survived the dehumanising treatments of the past 2 yrs

Answer 106

one great pride - there are now med schools where they use book I wrote about being cancerous to give apprentice docs some idea of what it's like to be a patient

Answer 107

critics of medicalization such as Ariès stress that the ‘cellular discipline’ of medicalized environments removed dying patients’ autonomy and comfortable home-based living patterns.

Answer 108

Illich postulates that medicine’s inherent tendency to consider patients as technical problems reached its apogee in the mid-twentieth-century hospital. Callousness became routine, justified as ‘scientific detachment’.

Answer 109

emphasis upon eliminating pain removed society’s appreciation for the age-old ‘art of suffering’, leaving dying people with no meaningful cultural tools through which to interpret and thus handle their pain

Answer 110

Except for the death of statesmen, society has banished death The worst torment was the lie, the lie that for some reason was accepted by everyone, that he was only sick, and not dying (comes in late 19th C) Hidden death in the hospital, which began v discreetly in the 1930s and 40s and became widespread after 1950 Hidden death in the hospital, which began v discreetly in the 1930s and 40s and became widespread after 1950 Hosp has offered fams a place where they can hide the unseemly (571) invalid whom neither the world nor they can endure Hosp no longer merely place where one is cured or where one dies bc of a therapeutic failure; it is the scene of the normal death, expected and accepted by medical personnel if death too noticeable, dramatic, noisy, dignified most especially, it arouses in staff an emotion quite incompatible w their professional life, still less w hosp routine

Answer 111

Shutters were closed in the bedroom of the dying man, candles were lit, holy water was sprinkled; the house filled with grave and whispering neighbours, relatives, and friends After death, notice of bereavement was posted on the door Period of mourning was filled with visits: visits of the family to the cemetery and visits of relatives and friends to the family The social group had been stricken by death, and it had reacted collectively, starting with the immediate family and extending to a wider circle of relatives and acquaintances Death of each person was a public event that moved, literally and figuratively, society as a whole Not only an individual who was disappearing, but society itself had been wounded and had to be healed

Answer 112

by the 1880s, going to a doc has become a necessary and import step, which it was not 50 yrs before In the novels of Balzac the doc plays and import social and moral role Prescribes treatments but does not cure patients; helps them to die Foresees natural course of things that it is not his responsibility to alter

Answer 113

during second half of the nineteenth century, death ceases to be always seen as beautiful and is sometimes even depicted as disgusting Death no longer inspires fear solely bc of its absolute negativity - it also turns the stomach, like any nauseating spectacle It becomes improper, like the biological acts of man, the secretions of the human body No longer acceptable for strangers to come into a room that smells of urine, sweat, and gangrene

Answer 114

Burden of care and unpleasantness had once been shared by a whole little society of neighbours and friends, which was more extended among the lower classes and in the country but continued to exist in m-c circles as well This little circle of participation steadily contracted until it was limited to the closest relatives or even to the couple, to the exclusion of children The community in the traditional sense of the word no longer exists. It has been replaced by an enormous mass of atomized individuals

Answer 115

burial ceased to be familiar sight. Among those interviewed, 70% had not attended funeral in 5 yrs Children have been excluded from death The tears of the bereaved have become comparable to the excretions of the diseased - Both are distasteful. Death has been banished

Answer 116

1. Changes that occurred in early stages of dying - patient kept in ignorance and isolation 2. 20th C, beginning in WW1 - taboo against mourning and everything in public life that reminded one of death, at least the so-called natural (i.e. nonviolent) death 3. Remained only the scene of farewells, which retained traditional characteristics. After WWII even this disappeared, owing to complete medicalization of death

Answer 117

Dying man given food and water intravenously, thus sparing him the discomfort of thirst. Tube runs from mouth to pump that drains his mucus and prevents him from choking Sedatives administered by docs and nurses All this is well known today and explains the pitiful and henceforth classic image of the dying man w tubes all over his body

Answer 118

What today we call the good death used to be the accursed death - death that gives no warning Today, w advances in med, such an easy death has become rare patient is rebellious and aggressive, or accepts death, concentrates on it and turns to wall, loses interest in world around him, cuts off communication w it. Docs and nurses reject this rejection, which denies their existence and discourages their efforts. In it they recognize the hated image of death as a phenomenon of nature, whereas they had turned it into an accident of illness that must be brought under control

Answer 119

Death no longer belongs to the dying man, who is first irresponsible, later unconscious, nor to the fam, who are convinced of their inadequacy.

Answer 120

in the US in the past few yrs a complete reversal of attitudes has been taking place. Change imposed on the medical fraternity by a group of psychologists, sociologists and psychiatrists who became aware of the pitiful situation of the dying and decided to defy the taboo Kübler-Ross New trend, born of pity for the alienated dying, was directed toward the amelioration of the actual process of death by restoring to the dying man his forgotten dignity desire to divulge things having to do w death and to speak about them naturally instead of hiding them But difference not as great as it appears - the exhibition serves the same purpose as the silence of the taboo: to stifle emotion, to desensitize behaviour. The audacity of Dying more effective than shame of the taboo. Succeeds even better in ruling out poss of communication; it succeeds even better in ruling out all poss of communication; it ensures the most perfect isolation for the dying

Answer 121

Most recent model of death is assoc w the medicalization of soc, that is, with the segment of industrial soc in which the power of technology has been most widely accepted and is still least contested. For the first time, ppl are questioning the unconditional benevolence of this power

Answer 122

model of the invisible death is most solidly repd in the 20th C in the US and England - there it has become established, bc there it has found the conditions most favourable to its development Continental Europe = bastion of resistance Parts of Eng still free of taboo at the time of Gorer's investigation ``` Greater working-class resistance to the invisible death - more emph on traditional death Vestiges in lower classes of (595) traditional death ```

Answer 123

I am not a nurse and, emphatically, I do not care about health

Answer 124

medicine as a paradigm for any mega- technique that promises to transform the conditio humana, I examined it as a model for any enterprise claiming, in effect, to abolish the need for the art of suffering by a technically engineered pursuit of happiness.

Answer 125

Conceiving living beings as immune systems provides the pseudo-legitimation of reducing a human being to ‘a life’ upon which ethics committees can pass judgments. In a world made up of systems, the immune system replaces what was formerly called an individual or person. late twentieth century practises its necromancy by giving substance to system concepts, and by reducing persons born for suffering and delight to provisionally self-sustaining information loops (didn't know this when wrote med nemesis)

Answer 126

medical establishment has become a major threat to health Doctor-inflicted pain and infirmity have always been a part of medical practice. Professional callousness, negligence, and sheer incompetence are age-old forms of malpractice. With the transformation of the doctor from an artisan exercising a skill on personally known individuals into a technician applying scientific rules to classes of patients, malpractice acquired an anonymous, almost respectable status.63 What had formerly been considered an abuse of confidence and a moral fault can now be rationalized into the occasional breakdown of equipment and operators. In a complex technological hospital, negligence becomes "random human error" or "system breakdown," callousness becomes "scientific detachment, The religious use of medical technique has come to prevail over its technical purpose, and the line separating the physician from the mortician has been blurred clinical iatrogenesis, which results when organic coping capacity is replaced by heteronomous management social iatrogenesis, in which the environment is deprived of those conditions that endow individuals, families, and neighborhoods with control over their own internal states and over their milieu. cultural iatrogenesis - Culture makes pain tolerable by integrating it into a meaningful setting; cosmopolitan civilization detaches pain from any subjective or intersubjective context in order to annihilate it. Culture makes pain tolerable by interpreting its necessity; only pain perceived as curable is intolerable.

Answer 127

The demand for old-age care has increased, not just because there are more old people who survive, but also because there are more people who state their claim that their old age should be cured.

Answer 128

Only the very rich and the very independent can choose to avoid that medicalization of the end to which the poor must submit and which becomes increasingly intense and universal as the society they live in becomes richer

Answer 129

Hospital death is now endemic.199 In the last twenty-five years the percentage of Americans who die in a hospital has grown by a third Death without medical presence becomes synonymous with romantic pigheadedness, privilege, or disaster. The cost of a citizen's last days has increased by an estimated 1,200 percent, much faster than that of over-all health care Several unexamined expectations are interwoven in the cultural orientation towards death in the wards. People think that hospitalization will reduce their pain or that they will probably live longer in the hospital. Neither is likely to be true. Of those admitted with a fatal condition to the average British clinic, 10 percent died on the day of arrival, 30 percent within a week, 75 percent within a month, and 97 percent within three months But by staying at home they avoid the exile, loneliness, and indignities which, in all but exceptional hospitals, await them

Answer 130

Patients who have severe pains over months or years, which narcotics could make tolerable, are as likely to be refused medication in the hospital as at home, lest they form a habit in their incurable but not directly fatal condition. cultural iatrogenesis Pain has become a political issue which gives rise to a snowballing demand on the part of anesthesia consumers for artificially induced insensibility, unawareness, and even unconsciousness. Man has not only evolved with the ability to suffer his pain, but also with the skills to manage it:35 poppy growing36 during the middle Stone Age probably preceded the planting of grains The new experience that has replaced dignified suffering is artificially prolonged, opaque, depersonalized maintenance. Increasingly, pain-killing turns people into unfeeling spectators of their own decaying selves.

Answer 131

Like any other growth industry, the health system directs its products where demand seems unlimited: into defense against death. Now an increasing portion of all pain is man-made, a side-effect of strategies for industrial expansion. Our new image of death also befits the industrial ethos. What need is there to worry about a murderous environment when doctors are industrially equipped to act as life-savers! Industrial hubris has destroyed the mythical framework of limits to irrational fantasies, has made technical answers to mad dreams seem rational, and has turned the pursuit of destructive values into a conspiracy between purveyor and client Beyond a certain level of industrial hubris, nemesis must set in, because progress, like the broom of the sorcerer's apprentice, can no longer be turned off. Defenders of industrial progress are either blind or corrupt if they pretend that they can calculate the price of progress

Answer 132

hosp = cathedral Public fascination with high-technology care and death can be understood as a deep-seated need for the engineering of miracles. Intensive care is but the culmination of a public worship organized around a medical priesthood struggling against deat

Answer 133

Medicalization constitutes a prolific bureaucratic program based on the denial of each man's need to deal with pain, sickness, and death Medicalization deprives any culture of the integration of its program for dealing with pain. An advanced industrial society is sick-making because it disables people from coping with their environment and, when they break down, substitutes a "clinical," or therapeutic, prosthesis for the broken relationships

Answer 134

first orientation is treatment, not healing

Answer 135

he age of hospital medicine, which from rise to fall lasted no more than a century and a half, is coming to an end.27 Clinical measurement has been diffused throughout society. Society has become a clinic, and all citizens have become patients whose blood pressure is constantly being watched and regulated to fall "within" normal limits. The acute problems of manpower, money, access, and control that beset hospitals everywhere can be interpreted as symptoms of a new crisis in the concept of disease two solutions: first solution is a further sickening medicalization of health care, expanding still further the clinical control of the medical profession over the ambulatory population. The second is a critical, scientifically sound demedicalization of the concept of disease

Answer 136

The good death has irrevocably become that of the standard consumer of medical care growth of hospital-based medicine inevitably constitutes a form of imperialist intervention. A sociopolitical image of death is imposed; people are deprived of their traditional vision of what constitutes health and death.

Answer 137

Now the doctor rather than the patient struggles with death.

Answer 138

cannot fully understand the deeply rooted structure of our social organization unless we see in it a multifaceted exorcism of all forms of evil death. Our major institutions constitute a gigantic defense program waging war on behalf of "humanity" against death-dealing agencies and classes

Answer 139

stereotypical images of home may distort the assessment of the extension of health care services into the home. , in my interviews with providers, I was told of instances where procedures that were previously restricted to the hospital, such as giving narcotic analgesics by "IV push1 1 0", were performed in the home by highly skilled "crisis management" nurses. Haddad (1992) warns that the transfer of such procedures and the associated technology into the home can increase caregiver burden as family members are expected to assess when such procedures are needed or are faced with performing them transformed the home setting into one that was infused with the influences of biomedicine. When palliative care is provided at home, the home is often re-created into a hospital-like setting. Homes become reconstructed as sites for health care provision and caregivers reinvent themselves to become "nurse-caregivers". Care at home is profoundly shaped by the influence of biomedical models of health care;

Answer 140

The biomedical model has been viewed as incompatible with palliative care because it focuses on cure, is heavily influenced by the Cartesian dualistic worldview 1 0 9 , and ignores the philosophical and existential issues involved in dying and death (Capra, 1982; Dudgeon; Schipper, 1991). Biomedical approaches are underpinned by an assumption that health care professionals (mainly physicians) hold legitimate authority and expertise over patients and families In contrast, palliative care approaches are based on a fundamental belief that the patient and family are experts with regard to what constitutes their own health and the philosophies inherent in palliative care reflect the value of attending to each of the physical, psychosocial, and spiritual domains of care The goals of mainstream health care that focus on cure, treatment, and cost efficiencies are incongruent with the goals of palliative care that focus on comfort, support, and care effectiveness. These philosophical divisions have created tensions that thwart the progress of palliative care development in the health region

Answer 141

increasing emphasis on the development of knowledge that is valued by mainstream biomedicine is one factor that has contributed to the medicalization of palliative care (James & Field, 1992) and, therefore, the medicalization of home-based palliative care.

Answer 142

Miniaturized or simpli- fied ventilators, drug and nutrition infusion devices, various monitors, and other hospital equipment are making this shift from hospital to home feasible illnesses and treatments can make familiar domes- tic settings alien, or they can confuse family roles and foster mutual decep- tion, detachment, and resentment, even (or especially) in well-ordered families ill- ness and treatment can transform even spacious quarters and caring family relationships into hospital-like conditions. Rooms may lose their comforting familiarity, and families may lose their familial intimacies and mutual trust . Illness may produce unexpected changes not just in family relationships, but in the very experience of familiar home spaces. Unlocked or open doors that diminish privacy are just one of the ways in which rooms are transformed by illness and ther- apeutic equipment. Familiar colors and sounds may become abrasive, stairs too steep, shelves too high, rugs treacherous. Likewise, any physical changes (drawn curtains, rented hospital beds and bathtub rails) may transform former places of rest and pleasure into confining, repugnant clinical spaces, not only for a patient but also for cohabitants who continue to share those altered spaces, often resentfully For some patients there may be more subtle considerations related to their conceptions of home and the lingering effects of home death on family survivors who continue to live there Removing all physical traces of a last illness may seem disre- spectful; hence a home or room may retain its hospital aura

Answer 143

Home is commonly conceived and experienced as a place of security, comfort, privacy, and liberty to be oneself. By contrast, the hospital is often thought of and experienced as a place of insecurity, discomfort, intrusion M-c ideal of home widely shared, even by solitary dwellers and collective groups. For ex- ample, urban "homeless" people re-create minimal homes out of scrap materials in abandoned railway tun- nels, concealed bridge niche

Answer 144

tions hospitals may often allow pa- tients greater autonomy than home and may better preserve family rela- tionships than would home care hospitals may prove more hospitable and homelike than some patients' homes. I have in mind not just those homes whose conditions contribute to disease, injury, or exhaustion. More generally, ill- ness and treatment can transform even spacious quarters and caring family relationships into hospital-like conditions patients may have a greater sense of privacy in a hospital, not less. In a hospital, other- wise highly personal matters may be depersonalized or impersonalized. Despite constant hospital traffic and intrusions, patients may quickly be- come used to exposing their bodies or bowel movements to professional caretakers. Such indifference with family intimates may be harder to achieve, especially in rooms once pri- vate but now invaded at will by family and professional caretakers. dying is often ago- nizing or messy, and consequently, patients may prefer the help of im- personal professionals to that of fam- ily members

Answer 145

hospitals (such as Beth Israel, New York) have refitted floors with family rooms, mi- crowave kitchens, soft lighting and home furnishings. Hospital carts and equipment are kept out of sight, hours of testing are limited, meal and medication schedules are flexible, and patients are encouraged to read and talk to nurses and a pharmacist about their illnesses and therapies. "Care companions" and children are welcome visitors.

Answer 146

The elderly often have no home to which they can return to die. Having outlived spouses and lived alone, or in commercial residences with medical supervision, they may have no place that feels like home

Answer 147

Far from living in 'death denying' soc, open awareness and acknowl od dying is a script partic suited to the (611) conditions of late modernity, where the project of self-awareness is a central pre-occupation Heroic self-affirmation is a script available for many dying ppl, suggesting that death is far from the meaningless event depicted by those who have promoted the denial of death thesis

Answer 148

dominance of the discourse on awareness poses problems for individs whose dyign can't be scripted into the drama Cancer and aids death most amenable for inclusion In these deaths, dramatic moments of truth are reached and either confronted or avoided, and the joint facing of death practised by ppl w these diseases and their companions is cast as 'dying w dignity' Extreme old age, demented and institutionalised - less opportunity to strike a heroic pose - more frequently portrayed as dribbling, undignified figures waiting for death as release from life. The lives and deaths of these individs have become the horror stories of our time.

Answer 149

Earlybirdme - My Husband Died 5 weeks ago - HELP eyes have not been dry since Wonderous - me and many others here we know exactly where yu are. Open yur heart here wenever yu feel like it. It really duz help. orchardmead30 - I don"t know what I would have done with out this site. Every one is so caring

Answer 150

Smitheat - My mum who is 79 years old was recently diagnosed with cancer but they are unsure if the primary cancer is Ovarian or Bowl. Her personality has completely changed. She knows who we all are and what's going on around her but just doesn't seem to be engaging anymore. Today was completely different. She wouldn't even get washed and dressed and was very quiet. Niobe - husband of 36 years has been living with cancer and the results of surgery for nearly five years. I hope that you can give and receive love between you this Christmas. What I have learnt and strongly believe, is that we have to give the sufferers what they want, not we think they should want BryonyO - It doesn’t surprise me that after a day of hairdresser and visitors your Mum was quiet the next day. I’d avoid putting two things into the same week. I usually aim for a days gap in between days where we do something.

Answer 151

hope58 - Lonely and empty I feel like a burden. I need pushed around. I can't work. I can't do things in used to do easily. Anyone else got a cloud? Lady Pepys - Halt! I know it seems obvious but call your doctor. Or call Samaritans or a friend. Or the Macmillan helpline You describe yourself as a 'burden'. On what grounds? That you involuntarily became ill? I'd bet my bottom dollar nobody else sees you that way. And there you are doing practical things, planning ahead, thinking of your wife and son. Please remember that everybody here is with you.

Answer 152

following on from TB as the disease experienced as ruthless, secret invasion - role it will keep until its etiology one day becomes as clear and its treatment as effective as those of TB have become

Answer 153

Any disease that is treated as mystery and acutely enough feared will be felt to be morally, if not literally, contagious. Thus, surprisingly large num of ppl w cancer find themselves being shunned by relatives and friends and are the object of practices of decontamination by mems of their household, as if cancer were infectious

Answer 154

Strenuous conventions of concealment of cancer France and Italy - still the rule for docs to communicate cancer diagnosis to patient's fam, not patient America - much more candour. But country's largest cancer hospital mails routine communications and bills to outpatients in envelopes that do not reveal the sender, on assumption that the illness may be a secret from their families All this lying to and by cancer patients is measure of how much harder it has become in advanced industrial societies to come to terms w death death now offensively meaningless, so disease widely considered a synonym for death is experienced as something to hide cancer patients lied to bc cancer felt to be obscene - ill-omened, abominable, repugnant to the senses (nothing of this taboo in cardiac disease)

Answer 155

earliest literal definition - a growth, lump or protuberance TB also once considered a type of abnormal extrusion. etymology - bump, swelling Thus, from late antiquity until quite recently, TB was, typologically, cancer only w the microscope was it poss to grasp the distinctiveness of cancer - a type of cellular activity

Answer 156

- disease of growth, abnormal - main symptoms invisible - de-sexualising - degeneration, tissues turning into something hard - demonic pregnancy - invasion by alien cells - works slowly, insidiously - not so much disease of time as disease of space (cancer 'spreads' or 'proliferates') - excruciatingly painful - wretched death - disease of repression - some ppl believe liberated sexual life staves of cancer. Also steady repression of feeling seen to cause the disease - obliteration of consciousness. You are being replaced by nonyou - your multiplying cells - oft experienced as a form of demonic possession

Answer 157

'this unholy granite substance in my breast'

Answer 158

Nobody conceives of cancer the way TB was thought of - as a decorative, oft lyrical death. Cancer is a rare and still scandalous subject for poetry; and it seems unimaginable to aestheticise the disease Cancer generally thought an inappropriate disease for romantic character, in contrast to TB, perhaps bc unromantic depression has supplanted the romantic notion of melancholy cancer was never viewed other than as a scourge

Answer 159

Both the myth about TB and current myth about cancer propose one is responsible for one's disease - disease as expression of character medieval - disease tied to notion of moral pollution, and ppl looked for scapegoat external to the stricken community Modern diseases - scapegoat not so easily separated from the patient

Answer 160

growing literature and body of research about emotional causes of cancer many cancer patients depressed - gives example of two-thirds or three-fifths contemp cancer personality - forlorn, self-hating, emotionally inert

Answer 161

described overcrowded lives, burdened w work and fam obligations and bereavements thought to get the disease as result of hyperactivity and hyperintensity seemed full of emotions that had to be damped down Boston doctor 1885 - advised those who have apparently benign tumours in the breast of the advantage of being cheerful manic-depressive character type

Answer 162

powerful means of placing the blame on the ill

Answer 163

described in images summing up negative behaviour of twentieth-century homo economicus - abnormal growth, repression of energy - i.e. refusal to consume or spend Contrast w TB, described in images of negative behaviour of 19th-C homo economicus - consumption, wasting, squandering of vitality

Answer 164

understanding of cancer supports brutal notions of treatments common cancer patient witticism - treatment is worse than the disease controlling metaphors in descriptions of cancer drawn from warfare cancer cells are 'invasive' 'colonize' body's 'defenses' (military metaphor originated w bacteriology 1880)

Answer 165

Cancer not just disease ushered in by Industrial Revolution and certainly more than the sin of capitalism mistaken feeling that cancer distinctively 'modern' disease

Answer 166

before, city understood as cancer-causing (carcinogenic) environment, city was seen as itself a cancer Frank Lloyd Wright, The Living City (1958) - compared the healthy city of earlier times w the modern city

Answer 167

19th c - became more virulent, preposterous, demagogic disease became synonym of whatever was 'unnatural'

Answer 168

decade since I wrote Illness and Metaphor and was cured of my own cancer, confounding docs' pessimism, attitudes about cancer have evolved Getting cancer not quite as much of stigma word cancer uttered more freely brutal announcement to the patient now common in the US more and more is it virtue in our soc to speak of what supposed not to be named change also from fear of lawsuits cancer no longer the most feared disease - this AIDS seems that societies need to have one illness which becomes ident w evil, but hard to be obsessed w more than one

Answer 169

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.

Answer 170

433 web sites and 92 published narratives

Answer 171

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

Answer 172

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.’

Answer 173

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

Answer 174

(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.

Answer 175

'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...

Answer 176

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.

Answer 177

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.'

Answer 178

- 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)

Answer 179

Post-op Finally, the pain team prescribed Entonox, which I can tell you has been my best friend over the past couple weeks. It genuinely has made, coupled with copious amount of oxycodone, the past couple of weeks bearable, because I can tell you it has been a fucking painful sixteen days and something was needed to take the edge off.

Answer 180

DISCLAIMER - BETH IS NOT NECESSARILY DYING. SHE IS UNDERGOING TREATMENT My name is Beth and I am 21 years old. Earlier this year, after months of suffering with worsening sciatica, I was diagnosed with cancer, specifically a malignant peripheral neural sheath tumour (MPNST), a rare form of soft tissue sarcoma. It had been growing in a bone cavity at the base of my spine, along my sciatic nerve. Tumour Has It is my blog, and it will serve as my outlet during the incredibly

Answer 181

Thanks for coming to Tumour Has It! I apologise if you have accidentally landed here as a fan of Adele

Answer 182

I have just finished my third year studying Physics in central London, one of my favourite cities. I love to dance, run and sing either Seal, Chaka Khan or Shaggy in the shower.

Answer 183

I just wanted to add, as a little aside and hopefully a reassurance to anyone awaiting an MRI, the following words: nerves were entirely uncalled for yes the MRI machine was incredibly loud and yes, it was a little boring (although I fell asleep in my first MRI and have continued to do so in every single one since), but every radiographer I have come across, and I have come across a lot, have been amongst the most lovely, caring, accommodating medical staff I have met, and have never failed to make me feel safe, even immediately after I have received incredibly bad news

Answer 184

Following a conversation a couple of days ago about my blog and my experiences, I felt I really needed to write this post. The particular person I spoke to raised some incredibly good points (kudos to them) and after our discussion I took this message away: that because I was retelling my story, and was talking about it in hindsight, I seemed incredibly upbeat about everything and could be in danger of failing to convey across how I truly felt at the time. This is completely true. Right now, as I said in my first ever post, I am in a better position than I was in May. in May, my entire life was painful. I would wake up in the morning and be sorry that I had woken up. This was normally at 6 or 7. I would crawl out of bed, no matter the time because it was too painful to lie there. I would load up on codeine and Pregabalin and if it was a good day try to make it to my revision lectures, taking the bus as I was physically unable to cycle. Getting to the bus stop was a mission, as I would have to stop multiple times to catch my breath due to the panic attacks I was experiencing every few minutes.

Answer 185

The codeine I was waiting on has been delivered, and since they couldn’t find my drugs chart they brought me a doctor who could write me a new one. He was friendly and he made me feel safe.

Answer 186

Cancer is still a scare word. People will more readily talk of sex than of cancer. Actually to use the word, particularly to speak it, causes shock commensurate w the consignment of the sufferer to eternal damnation

Answer 187

dispelling taboo I have never felt ill, I have not even had any pain either from the operation or from the X-ray treatment. I didn't have to stop work Modern anaesthetics and surgery are such that I was able to go straight from hospital on the fourth day after the operation to do a broadcast

Answer 188

my surgeon: not only is he superb at his job but he is good with small children. C's child - what colour will it (the cancer lump) be surgeon - what colour would you like it to be? child - yellow surgeon - then it will be yellow This earned her (child's) total trust which was a great boon over the in-patient period

Answer 189

it's good luck if you get sent to the right hospital some hosps treat people, not just bits of them, and so they spread the deep X-ray treatment out over several weeks, whereas others push you through in three to five weeks which fries you and makes daily dressings necessary. As there is seldom any med justification for this it seems unnecessarily cruel would like to think my overall luck was not exceptional; I am sure it cannot be unique