Nothing so neat” — the Admiral, my husband, when asked if an outline of the progression of his disease was accurate
Dear friends and readers,
Last night it was the nurse Elizabeth’s second visit to my house, both semi-emergencies stemming from my husband’s afflictions from Stage 4 esophageal cancer now spread all over his liver. I realize now she had become a little irritated (I had not meant to irritate her), and the usual question came: “Have you read all these books?” She had never seen so many in one house in her life. It’s not time for quipping and I’m not quick on truly responsiveness answers, so I said “Many many of them, though not all … ” I expatiated a bit, but forgot to say I have not “got through them all” (as if that was why one owned a book, but it would be answer that might fit her preconceptions) because I reread so many. I did say I had a strong tendency to read in books, read parts of them, dip (she didn’t seem to take this in).
Well one book I have reread a number of times because I assigned it to 4 classes I taught over two semesters of Advanced Composition in the Natural Sciences and Technology is the powerful humane How We Die: Reflections on Life’s Final Chapter by Sherwin B. Nuland. I had forgotten it has two lucid compellingly readable chapters on cancer. The opening of the first tells of how cancer was first experientially understood in the 18th century by Percivall Pott (1714-88). Wikipedia offers a brief description of Pott’s important work in the area of cancer and chimney sweeps:
In 1775, Pott found an association between exposure to soot [as an irritant] and a high incidence of scrotal cancer (later found to be squamous cell carcinoma) in chimney sweeps. This was the first occupational link to cancer, and Pott was the first person to demonstrate that a malignancy could be caused by an environmental carcinogen. Pott’s early investigations contributed to the science of epidemiology and the Chimney Sweeper’s Act of 1788.
The story is also told by John L. Brown and John L. Thornton, “Percivall Pott (1714-1788) and Chimney Sweepers’ Cancer of the Scrotum, British Journal of Industrial Medicine 14:1 (1957):68-70. You’ll learn of Pott’s origins as the son of a clergyman, personal life, and his rise to prominence within the meritocracy of genteel England at the time.
But no one tells the story of Pott’s sort of findings (he looked similarly at ruptures, wounds to the head, fistulas as they were called) as well as Nuland does in these few opening paragraphs of his chapter, “The Malevolence of Cancer.” Nuland begins by quoting a startling passage about chimney sweeps’ lives from invented thoughts attributed to one in Charles Kingsley’s 1863 children’s classic, The Water Babies.
Tom was what the English gentry euphemistically called a “climbing boy.” His duties required no lengthy training there were no prerequisites for entering the profession. Most cruits took up the depressing occupation between the ages of and ten. Each day’s work was launched simply enough: “aft whimper or two, and a kick from his master, into the grate T went, and up the chimney.”
Those chimneys bore little resemblance to the straight upright 1800s, they had become more direct in their ascent than they had
been when the British surgeon Percivall Pott turned his attention
to their dangers in 1775. In Pott’s time they not only were tortuous and irregular but had an annoying habit of running in a horizontal direction for short distances before resuming their intended vertical course. The result of all the structural peregrinations was that there were plenty of nooks, crannies, and flat surfaces upon which soot would accumulate. Not only that, but a climbing boy’s squirming en route up the flue made it quite likely that he would abrade the skin surfaces on various parts of his body, especially those that projected or hung.
The word hung is used deliberately here to mean exactly what
it sounds like; more often than not, the little climbers did their
grimy work without the protection of any layer of clothing be-
tween themselves and the filthy walls along which they scrambled.
They were quite naked. There was a good and sound tricks-of-
the-trade reason for the vocational nudity, or at least the boys’
masters thought it was good and sound. The chimneys were very
narrow, measuring approximately twelve to twenty-four inches in
diameter. Why go to all the trouble of finding such small, skinny
lads if they were only going to use up valuable space by wearing
clothes? So the master sweep recruited the tiniest boys he could
find, taught them the rudiments of chimney-shinnying, and kicked
their bare, coal-blackened bottoms into the gratings each morn-
ing, shouting them up the tight, airless shafts to start the day’s
The problems were compounded by the personal habits of the
poor sweeps themselves. Coming as they did from the very lowest
stratum of the English social structure, they had never learned to
value bodily cleanliness. Moreover, many of these unfortunate lads, in spite of being exposed to such a great deal of hearth, had never known much home. There had been no loving ‘maternal
ands to guide them, or even to pull them by the ears to a warm
b. By and large, they were abandoned urchins. The tar-laden
articles remained buried in the wrinkles and folds of their scrotal skin for months at a time, relentlessly eating away at their lives while the cruelties of their masters ate away at their souls.
Pott was the most distinguished London surgeon of his generation, and he knew a great deal about the difficult life of these young sweeps. He observed that the “fate of these people seems singularly hard: in their early infancy, they are most frequently treated with great brutality, and almost starved with cold and hunger; they are thrust up narrow, and sometimes hot chimnies, where they are bruised, burned, and almost suffocated; and when they get to puberty, become peculiarly liable to a most noisome, painful, and fatal disease.” These words were written in 1775; they appeared in a brief section of a much longer article by Pott, entitled “Chirurgical observations relative to the cataract, the polypus of the nose, the cancer of the scrotum, the different kinds of ruptures and the modification of the toes and feet.”
This article contains the first description ever recorded of an occupational malignancy. The disease took years to develop,
but it sometimes began to make its appearance as early as the time
of puberty. In the first decade of the nineteenth century, it was
reported in a child of eight.
There is no doubt that Pott was describing a fatal malignancy
that we would nowadays call squamous cell carcinoma. What he observed in the scrotums of his young patients was “a superficial,
painful, ragged, ill-looking sore, with hard and rising edges: the
trade call it the soot-wart … It makes its way up the spermatic
process into the abdomen. When arrived within the abdomen, it affects some of the viscera, and then very soon becomes painfully destructive.
Pott well knew that the scrotal cancer, except in the few cases when it was surgically excised at very early stage, killed every one of its victims.
Nuland goes on to describe the horrifically assaultive procedures used on boys “in whom the ulcerating process was limited still to one side” (202-4, in 1995 Vintage ed). Our own are often as aggressive, only we have substitutes for outright fire and we use clean knives and anesthesia for most major and minor procedures. Putting an IV in someone is however deemed so small it’s more dangerous to anesthetize someone than do it directly; its pain and difficulty is testified to by the reality nurses like to leave the IV in too long for convenience as well as not to have to hurt the patient (as too many IVs begin indeed to hurt).
For those interested in the way Jane Austen died, there are a couple of paragraphs on Hodgkin’s disease. It’s a cancer of the lymphoma and these science has made some real progress in curing. You’d think not since the cancer is distributed around the body, bu the way it’s distributed and its responsiveness to specific programs of chemo and supervoltage X-rays results in cures for 95% of people. Until 30 years ago like Jane Austen virtually every patient with this one died (p. 219)
Well in re-reading these two chapters, I re-learned much about cancer from a new frame of mind: actual experience of watching my husband who has esophageal cancer which has metatasized. I am struck by how it begins with a process of ulceration: my husband suffered badly from acid reflux disease for many years; smoking is a form of continual chronic irritant; harsh chemicals no matter how invisible coursing through the body irritate it. I took a vow to stop one of my behaviors which is a continual corrosive.
I also learned something I had not taken into consideration sufficiently because no one talked to me from this point of view. It seems that removal of the primary tumor does not stop metatasis. I did not know that. No wonder it seemed to me the other non-leading physicians seemed to think we should do chemotherapy and radiation first; the surgeon in love with his profession and knife rushed to operate. He talked of his fear of leakage as we waited for Jim to recover from the chemo and radiation and the radiation doctor agreed that was a real problem. Leakage across boundaires within the body causes serious complications. (Maybe this operation ought not to be done, but then what to do about this primary tumor. It must come out too.) Looking for this problem of metatasis which comes from nothing apparently there any more (but deeper invisible processes which the scans done never caught) for the first time I found confirmation of this reality not explicitly stated but assumed in an wikipedia article on metatasis.
So one can take it personally — and it’s meant that way.
This particular case I’m zeroing on on is matched by many other similar discussions in the book, so the book is a short encyclopedia of sorts. It’s important for its explanations of six major diseases frequently suffered by US people, especially in old age; for its central idea of how in most cases the person who dies slowly will die from a lack of oxygen to the heart (“The Strangled Heart”), how often the description of the cause of death neglects this. We should not neglect how little good information most of us have about our bodily processes and sickness and death.
It is also centrally an argument against substituting scientific procedures for humane treatment: the way we die now often does the latter. See “Wit: on the borders of decency.”
Its relevance to the 18th century is Nuland de-mythologizes death — which in the 18th century had begun to be studied in the modern way as at the same time it gained whole new mythologies with the changes in attitudes towards religion (see Aries’s The Hour of Our Death). Two more of the chapters begin with an 18th century doctor (Wm Osler in “Accidents, Suicide and Euthanasia”) or philosopher (Thomas Browne in “Doors to Death of the Aged.” Johnson is quoted but once though and someone looking for specifics for a history of medicine in the 18th century would do better with Roy Porter, e.g., Mind-Forged Manacles: A history of Madness in England from Restoration to Regency and The Greatest Benefit to Society: A Medical history of Humanity.
But it’s essential reading because we not only rarely cite the cause of death in obituaries and work in social customs to keep the mourning process out of sight and to a minimum, except for those in the medical profession we stay (I did too) away from information about fatal and debilitating diseases which might disturb or frighten us until we are forced to take some or a great deal in by someone near us or ourselves becoming very ill. Nor know the history of diseases whose original understanding is often a key to ourselves trying to (let us say ) avoid this or that fate.
Nuland like a few of the scholars of 18th century is beyond this an eloquent writer and humane perceptive man, and I can do no better than let him speak for himself:
I cannot say it was a major hit with my students; after two terms, I decided not enough people in the room read enough of it through. Those who complained it was morbid gave away they had not opened it. A reviewer on Amazon urges other readers not to be afraid of reading it. Apparently this lack of enthusiasm was shared by reviewers at the time: they treat the book with more than a slight edge of distancing humor, complain about its “lack of focus,” over-emphasize the story element. At best they can find it to be an argument against scientific medicine which prolongs life at the expense of the person who is given what he or she needs: validation, recognition, love, kindness. This by Joseph Adelson in Commentary is among the best: “a messy business.” Morris Dickstein is condescending: let’s not get over-emotional here, just what many are in no danger of doing when it comes to death unless it’s that of someone dear to them or their own.
In the 18th and 19th centuries both to their credit people got over-emotional openly. And even today it seems “the universal suffrage of mankind” has won over for How We Die for a while, as the book is still in print in English with a new preface, has been translated into 29 languages, is much read, and in bits listened to. It fills a need no one else acknowledges.