Calendar Girls: an older cancer film story (Julie Walters and John Alderton, husband and wife to the left, he dies of cancer in the film) -2003 you could still make more or less up-beat films centering on community survival
Cancer's not a pleasant topic, but as the disease spreads across age groups and there is a real increase in mortaliy among the young and middle-aged and those who survive are ravaged for life, we ought to pay attention to how frequent is the use of cancer words in ordinary talk, what are the ways cancer is talked about and who writes the stories most of the time. I can't claim to offer anything more than one person's impression but here's what I've noticed. The metaphor's metastasis so to speak reflects the populations' awareness of this dread plague threat.
Cancer words increasingly turn up in expected and unexpected places to suggest the uncontrolled ubiquity of something frightening. The word metastasize. We are told this or that has metastasized. And the metaphor is applied to just all sorts of things deemed unpleasant, unwanted, spreading everywhere. It's used for what's regarded as malevolent: ISIS metatasizes into other countries. For what's unstoppable and dangerous: Hate groups are a cancer on the body politic of the US and Trump is developing them further.. I read that 1 in 4 families in the US now have had cancer develop in a family member. I'm not sure how wide the word family is used here. But people know it's most often a death sentence, terrifying, the techniques nauseating, painful, and often boomerang.
There's a great difference between the stories one hears from friends about themselves or people they know and what's in print. So I'll treat them separately.
First I'll go over what's in print and on the Internet where the writing is meant to be seen as of general application:
Reporters tell of price gouging going on over techniques, surgeries, drugs that can prolong life. The Washington Post (March 10, 2016) had a story about a drug Gleevec made by a company Novartis where the supposed market forces did nothing to bring the price down. Research for it was partly paid the gov't, once done the cost of making the drug itself was miniscule and the price moved from $26,400 a year to $120,000. A life expectancy of five to six years becomes a life span that approaches something regarded as normal. Nothing competes against that. The money does not necessarily have to come from the patient's pocketbook; sometimes insurance pays for it (then this increases everyone's costs but the company); but often it is charged individual and wipes out someone's savings quickly. People try for privately negotiated discounts -- that seems to mean someone successfully bargaining with a "provider." Still, it seems most people will pay whatever they have to for a decent quality of life while they are alive and more time. then the patent runs out and a patient hitherto paying $800 a month now pays $10. At the close of this story Vinay Prasad, an oncologist at Oregon Health and Science University is quoted as "critical of cancer drugs that have been approved for stopping cancers from progressing but not saving lives -- and wonders what that means for patients."
I've come across similar stories in the NYTimes. There are few stories of patients losing treatment, not able to pay, not able to come to a doctor early enough. Not enough on money as such except in books exposing the money-driven nature of how medicine is delivered. Two of the most troubling stories I've read were brief: one on PBS reports about how money for fundamental research on cancer in the NHI had been cut; another on DemocracyNow.org on how corruption and misuse of funds had been found in leading breast cancer societies: in a rare instance, Amy Goodman just read the news item and did not go on to develop it by interviewing anyone.
Doctors defend their profession, their techniques, their profits, their choices. An especially egregious example is found in the reviews of Vincent DeVita's effective muck-raking The Death of Cancer. It was attacked in the New Yorker by another doctor several months ago. Jerome Groopman opens a castigating review in the NYRB (March 10, 2016 too) by telling a story of his mother's cancer in startling language. The language he uses and what he implies shows him to be shameless in implying that cancer patients are to blame if they succumb to cancer and that doctors are the most dedicated selfless professionals in existence. His mother was 67 when she was first diagnosed with breast cancer. He tells us how she "openly told family and friends of her diagnosis," and then "fought" the cancer. She had operations to have just about everything having to do with her breasts removed and a combination of chemotherapy after that to reduce concurrence. When the cancer returned "several years later," "she knew it was incurable" but she "also knew there was hope to extend her life with treatment." She did all these and "at times was so fatigued" she couldn't do "daily chores," "could ot attend synagogue." A pious woman. It goes into remission, and then again recurs. Twelve years have passed since the initial diagnosis; now "a thoughtful and dedicated" oncologist warns her the cancer "is growing quickly and treatment options" are few. But she is not deterred. She choses a drug just approved by the FDA for pancreatic cancer, "gemcitabine" and there is "controversy over its value," how long it does prolong life. Of course she choses to take it. Another drug, Avastin, had just been approved and this same doctor who of course "was not pressing" Groopman's mother suggests she takes that too. "She very much wanted to live ,and did not believe the end was near." She just ignored "the real risks of toxicity," and guess what? she lived another 14 months. This heroic woman faced yet another recurrence, and her wonderful oncologist had for her "so-called phase 1 studies.' The tests were to see what side effects were. This time she 'arranged for hospice care at home" and "died in her own bed without pain or anxiety."
We are not told how much all this cost; how she had the connections for this; what were the side effects? Groopman's doctors continually keep the other patients he tells of "completely informed." After that opening and his pious descriptions of fellow doctors I would not trust anything this reviewer-doctor would write, no matter how high his prestige.
It seems DiVita who was finally kicked out of his job at Sloane Kettering (so has a grudge it's implied) had some early success in fighting cancer has written a book exposing how the various cancer societies and groups work to protect their profession by insisting on doctors following rigid protocols which prevent further discoveries, by not sharing information across hospitals and companies. Groopman points out how another researcher, Tom Frei, who used preliminary data and employed agents not approved of by the FDA created a program which was "an unmitigated disaster." Groopman moves back and forth to suggest there are people who challenge authority and conventional thnking and DiVita does not do them justice. The thrust of his review is the usual one: cancer are so many, so complicated, and mutate in so many ways that they are "nefarious," and like a Proteus at the seashore. That is why so many treatments fail and fall short. Not that doctors or drug companies or establishments are to blame. He talks a good line at the close about how we need to help underserved and poor populations and have to have reliable therapies everyone turns to. Nowhere does he offer any suggestions for how such help will reach such people.
TV programs like a three hour show on PBS last year have doctors who provide accurate statistics: most people die, though nowadays with these fierce drugs and savage operations life is prolonged somewhat. The stories focused on are however usually on someone who is in a permanent state of remission or whose life has now been prolonged by decades. You have to pay attention to realize what's emphasized and dramatized remains an exception.
There are all the court cases of individual and class action suit (much harder to do because of supreme court decisions. Politicians taking money from corporations have "sovereign immunity" as in Flint, Michigan. We have the pollution of our air, water, food, chemicals we use for our hair, for grass, companies for growing agricultural, for altering products to "look" better; everywhere polluted and now fracking is direct. One court case the local people won but the company will be back. A state govenor stops it (Cuomo) but the companies wait and when he's gone come back to fight. A billionaire who made fantastic sums went bankrupt the other day and killed himelf by smashing himself in his car against a cement wall; the car went up in flames. Obama applies brakes as he does in the wild worlds of the middle east. We will miss him badly when he's gone.
Most cartoons about cancer are not funny: this is among the less objectionable types: among Jim's last words to me, when he thought he might have to go into hospice care in an institutional setting: "don't let them hurt me." You see that pictured here:
The book to read is Joseph Epstein's The Politics of Cancer, revisited. It’s the aim of his book once again to argue that if we had the political will, took organized action, spent money and time and research in the right directions, we could do a lot to control and prevent this epidemic from increasing, indeed begin to diminish it. He opens by making the first necessary argument: it’ll be said the reason so many people die from cancer is they are not dying from degenerative diseases of poverty, hard work, bad diet, infection and so on. Not so. The numbers of people getting cancer have multiplied frighteningly since the beginning of the 20th century; as of the writing of his book 53 million people in the US will develop some form of cancer, 20% of the US population die from it, 5 times higher than the total US military deaths in all the Vietnam and Korean years combined.
Four axioms: cancer is caused mainly by exposure to chemical or physical agents in the environment; more carcinogens present, the greater exposure, and the greater chance of developing cancer; there is no safe level of exposure; other factors include genetic, endocrine, immunological, viral, biochemical, and possibly psychological. The change from the 19th century which has led to the poisoning of our environment is strongly in the area of petrochemical carcinogens. Organic and exotic chemicals and pesticides flood our environments. They are non- or poorly degradable; synthetic ones, insecticides.
Epidemiology studies are problematical because it is difficult to identify in a precise way statistical requirements across groups of people; an additional problem is the latency factor: decades later one can develop a cancer, but what we find are myriad ways investigating cancer risks so as to avoid regulations of carcinogens and toxic chemicals, ways of evasion: too short a period of time is common.
A mid-19th century of a depiction of a woman in last stages of TB: by William Windus, the people writing in newspapers professed themselves to be so shocked; the castigation alost ruined his career. The title: Too Late
Then there is an endless stream of poignant individualized stories published. Of young children; of adolescents. Sometimes they are by and about the person who is dying or has died young, and how he or she bucked up under this terrific pressure -- usually this is by someone in his or her fifties. All about hope, meant to inspire us, how others have come through for the person. Again from the Washington Past: Jonathan Stern is dying of brain seizures, and has been taking experimental treatments after which he has 8 months further to live. He can't get up to use a bathroom without exhausting himself. But his story is about all the miracles he experienced. How his brain seizures at first saved his life. Then it was miraculous he was able to have surgery and so now is not blind or paralyzed. His wife's job has gone to pot. Daily blasts of radiation led to miracle 3 was about how an excruciating pain in his leg did not lead to DVT: you see he kept his legs elevated and prayed very hard. Since then no blood clots. He is writing so his "moonshot" experience can help others. What terrible suffering this man has undergone; the only way this man can deal with his hideous misery is to assert versions of the world is beautiful.
And of course there is the endless stream of celebrities dying, often obeying the taboo and not telling it was cancer but it's obvious. Alan Rickman and David Bowie are the most recent victims who come to mind.
Some memoirs are about the partner who is caring for the cancer patient. How they struggle to do tasks they never did alone before, to take care of the person and yet keep their job. How nothing is done to help them at all. These stories are usually not written by the person who is the caretaker; a reporter, a family member, sometimes the dying patient.
The meditative memoir on dying itself where an attempt at truth is made. Alexandra Butler has the same kind of brain tumor Jonathan Sterne started out with; which Groopman brings up: glioblastoma, it's untreatable (it's what Ted Kennedy and Joe Biden's son died of). The disease wrecks her life, romance, an original aspirations for her life, but according to Terri Apter, a reviewer in the Times Literary Supplement," she nonetheless achieves "a remarkably original account of family, love and death; Walking the Night Road. It reminds me of cant at funerals.
It's against all the euphemisms Jenny Diski has managed to write of her experience of terminal cancer for nearly 2 years in the London Review of Books and DiVita's book stand out. I regret to say the stories about drugs and price-gouging for care, being excluded, are often buried deep in newspapers and don't turn up in mainstream periodical publications like the NYRB much. NYRB, TLS cover the sentimental self-compensatory memoirs.
From Breaking Bad: Syklar (Anne Gunn) pressuring Walter White (Bryan Cranston) to submit to the horrendously expensive chemotherapy techniques
Last what we are told by friends, families through gossip which does not make magazines because (as I know from my experience of being asked to tell my life story as an adjunct in academia) what's demanded first is can you tell your story in a upbeat way.
Friends' stories and those friends tell of others. These are kept hidden and silent because people are embarrassed and repressed. The social code is to be upbeat and talk about fighting. When the person dies, those left talk about him or her as bravely doing all he or she could do as if he or she was in charge. But if you then get details you find out the cancer was in charge and the doctors uncertain, trying shows of force, not knowing what will be the result which is often counterproductive. Doctors behave indifferently. Diagnoses are often wrong and the person's cancer is ignored until it's too late. Insurance companies intervene to refuse to pay for this or that expensive treatment. Last night a friend told me of someone who collapsed two years ago, who was at first refused an MRI; when finally this was allowed, it was late in the cancer. Given chemotherapy the poor man could not execrete on his own, was in terrible pain. His wife persuaded him to stop and try non-traditional medicine. It at least did not hurt him.His office gave him a farewell party to which he came a ghastly version of himself. His friends tried to visit him in hospital a few days later and discovered he was dead. The staff appeared indifferent. I remember how indifferent the staff appeared to my husband, Jim once his cancer metatatasized into his cancer. He was forced to wait long hours for painful blood tests and treatment; the doctor forced him to be wheeled into the doctors's office and spoke to him bluntly and without tact. The only kindness he ever had was from nurses. Not from hospice until I found one male nurse who at least stayed on the edge of decency and provided round the clock service the last three days.I'm told some hospices don't even provide that.
These real stories don't make the public media. Nor those of people who simply refuse treatment and die quickly. Maybe they have a good vacation and last weeks before the thing begins to devour them. Groopman would despise them.
Recent remake of Breaking Bad: title Metastasis - the American version one of the most important mini-series of the decade won prizes repeatedly and is now re-made European style
When will anything fundamental be done to help people? when will they begin organizing against this ceaseless exploitation, moral and social and emotional policing, price gouging; when will more conventional outlets begin to allow the publication of truthful accounts of cancer (the LRB does some of this now, to be fair)? We are told of people organizing against our polluted environment, to try to stop further pollution and often the reality is a undeniable increase in cancers but no one connects the dots to make a national or international movement.