Revealed in the Wound

DOI: 10.1200/JCO.2013.52.3837 On a cold June morning in 2009, I watched a nurse clean the fungating mass of a patient—let us call her Ellen—in a Botswana cancer ward. By this point, I had spent long periods working as an ethnographer in this, the only dedicated cancer ward in the country, located in the public tertiary hospital in the nation’s capital. I had seen the awful things unchecked cancer can do to the human body, and I had witnessed a great deal of wound care. There is a cancer epidemic rapidly emerging across southern Africa, part of the larger cancer pandemic throughout the global south, and this 20-bed ward and its associated clinic handled a relatively large volume of patients, many of whom had advanced disease. Ellen’s breast was barely recognizable amid the raw flesh, with long pieces of slough hanging from it in sheets. And it smelled. Terribly. She had been visiting her local clinic regularly to have the wound cleaned. But, given their almost total lack of training in cancer, the clinic staff had been far too timid with the task. Susan, the nurse, glanced at me and remarked somewhatrhetorically, “Howcanthey leavesomuchslough on it when they dress the wound?” And a community clinic, unlike the cancer ward, would not have stocked the pethidine (Demerol) to give Ellen to help make the cleaningmorebearable.Thepainwasunmistakable, as Susan noted. “Some things are just so unfair—how cansomeonesuffer likethis? It isclearlyquitepainful to clean.” She began by opening the sterile dressing pack, and then slicing off the long sheets of dead tissue with a razor, cutting into it bit by bit, with precision and care. Ellen,whowas inhermid50s, satwearingaheadscarf and a denim skirt, her chest bare. She sat as calmly as she could manage, but still she kept wincing. She could not decide if she should look at what Susan was doing or not. So she kept looking and then turning away again, wincing, but not crying out. This is typical in Botswana, where patients rarely vocalize severe pain unless directly asked or until the pain reaches truly unbearable proportions that begin to distort consciousness. But it was clearly uncomfortable, and throughout the procedure Susan did her job well by acknowledging the pain, saying, “Sorry Mama, sorry, sorry Mama,” apologizing to and comforting her patient all at once. Susan wiped saline into the wound, “I can’t clean too deep,” she explained to me, “but we want it clean. The smell is intense and this is not good for the patient.” Then she wrapped Ellen’s chest in betadine-soaked gauze and fashioned a bandage that also doubled as a sling to support this millstone of a tumor. Wrapped in clean bandages, Ellen would now rejoin her sister, who had accompanied her that day. They still had to wait for several hours in the queue for chemotherapy before returning home. The treatment is palliative, as is the scheduled toilet mastectomy. But, likeSusan’swork, it isvital.PalliativecarewillhelpEllen and her relatives to sustain her humanity throughout the protracted process of dying; it will blunt her pain and decay. Susan recognized this in the care she put into cleaning and dressing Ellen’s wound. She knew that thesmellofnecroticfleshposedasignificantproblem for Ellen and her family. “People try not to segregate the sick, but sometimes they are cooking in that same room or sleeping in one room together, and that is difficult.” Sometimes it is the distinctive smell of advanced cancer that prompts the initial treatment, when family members tell their loved one, “I am sorry mydear,butwecannolongereat together likethis.We must go and do something about the smell.” Ellen’s case is far from unique. Over my time working as an ethnographer in southern Africa, I have seen countless toilet mastectomies, but only two lumpectomies. And it is not only patients with breast cancer who arrive in the ward and receive their initial diagnosis when their cancer is already far advanced. Giventhe lackofbothpublichealthcampaignsaround cancerandtheattendant imaging,aswell as the laboratory services necessary to support screening and early detection—indeed, given the relative scarcity of cancer care in general—it is not surprising that so many patients arrive at an oncology setting only after their disease has already progressed to such a troubling state. Ellen was lucky to be in one of the very few countries on the continent where oncology is provided as part of a system of universal health care. Botswana is a middle-income country with only about 2 million citizens and a relatively robust system of social services. This includes an extensive network of primary care clinics and hospitals that feed into the nation’s two public referral hospitals. Across the region, as in much of the global south, most patients simply cannot afford to seek oncologic care for which they must pay out of pocket. Decisions to purchase cancer care are part of a JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 31 NUMBER 29 OCTOBER 1