Andaiye (11 September 1942 to 31 May 2019)

Editor’s note: Andaiye has been one of the Caribbean’s leading radical political figures, social and political thinkers. In Guyana, she was a member of the Working People’s Alliance, through the period of political turbulence and antidictatorial struggle that culminated in the assassination of Walter Rodney on 13 June 1980. From the mid-1980s Andaiye’s activism was largely with women in Guyana, the Caribbean, and globally. She was one of the founders of Red Thread in 1986, a women’s organization in Guyana. Andaiye was also a member of the Caribbean Association for Feminist Research and Action since 1990, and served on its regional executive in the mid-1990s. Internationally, she was associated with the Global Women’s Strike and Women of Colour in the Global Women’s Strike.

Andaiye was working on this essay at the time of her death; we had just completed edits on her book, The Point Is to Change the World: Selected Writings by Andaiye (Pluto Press, forthcoming). She had accepted an invitation to deliver the keynote address as the honoree at the Caribbean Institute in Gender and Development at the University of the West Indies Cave Hill Campus in Barbados, even though by then she was very unwell, saying it would “require energy which I’m happy to give up provided it can be of use.” In preparing her talk, she asked: “How many people and who they would be? All female or mixed? Age range? From where in the region? What do they do – students? Grassroots workers? Professionals? What? To the extent that they know, what’s their familiarity or lack thereof with ways of feminist thinking? Anything else that would help me see them.” That was Andaiye. Wanting to see everyone, from all angles. She was thinking of preparing something on the rise of right-wing populism and its implications for the region. But she was not well enough. She had decided to write about what it meant to live with cancer for thirty years, and with her usual dry wit, said she hoped it did not come across as some kind of “fare thee well” speech. At the time she made it clear that she was not contemplating dying. I arrived in Guyana the day after she was admitted to the ICU in the hospital. She had worked out the order and had a nearly completed draft. I took a few notes as she tried to explain what was left to be done with the talk and her book. This talk is drawn from the forthcoming collection, but Andaiye incorporated material from other unpublished writings. She had continued to work in the hospital; the document we recovered on her laptop has her tracked changes, and the final timestamp is an hour before the surgical procedure from which she would ultimately not recover. Her talk, which Joy Marcus (Red Thread, Guyana) and I delivered in Barbados at the opening of the Institute in July 2019, is Andaiye’s farewell, a moving and important tribute to all the carers, alongside a keen diagnostic of how power works. As she emphasizes elsewhere, “the unwaged work of caring for people the society dismisses as most unproductive, most unable to ‘work’ (those who are immobilized by chronic illness, severely disabled, or older), starting with the work we do to care for ourselves, is the most uncounted and unvalued work of all.”

On the night that Andaiye died, we found handwritten notes in a folder at the side of her hospital bed. She had kept writing until she no longer could. Even with the help of a magnifying glass, it took Karen de Souza (also a Red Thread member and one of Andaiye’s closest friends) two full afternoons to decipher her handwriting, which by then was minute and very shaky. She had left a brief explanation for the students of why she chose to share her journey with cancer: “Tell them that what I feel most deeply is that I wrote what I think personal stories do, how the telling of them is part of moving us collectively to a deeper understanding of the world, and hopefully to a greater and greater will to change the world at every level.”

D. Alissa Trotz, Editor
Toronto, November 2019¹

***

Two things I decided when I was diagnosed: one was that I would be in charge, even when I felt I couldn’t, asking everyone around me to accept that; and the second was that I would fight as hard as I could to live as long as I could, so that if the time came that I couldn’t fight anymore I could accept that with grace. That promise to myself in some way made me feel stronger.

No one ever wants to go. The question is whether you reach the point where you can let go.
It doesn’t mean all fear and anxiety go but that there are other things as well, including the certainty that you are loved.

On International Women’s Day 1989, I was diagnosed with cancer. Later I learned that it was stage IVB diffuse large B cell lymphoma, an aggressive form of non-Hodgkin’s lymphoma (NHL). Treated with chemotherapy, by the early 1990s I was in remission. But toward the end of 2011, I was told by one of the doctors who had treated me that the protocol they used had been found to produce late effects, chief among which were three illnesses I was now suspected of having: a secondary cancer (mine was of the breast); congestive heart failure; and severe fixed obstructive lung disease. I also had a worsening of peripheral neuropathy. To quote the main character in a play called Wit by Margaret Edson which Susan Gubar cites in her memoir on surviving ovarian cancer: my treatment had imperiled my health.²

I’m making this personal story into my keynote address not to be self-indulgent, but for two reasons. The first is practical: that since I feel ill it is easier to revise something that I have already written than to start from scratch. But the second and more important reason is political: I truly believe what I wrote in the preface to a soon-to-to-be-published anthology of some of the essays, letters, presentations I’ve written by myself and with others over fifty years of activism. This is how I introduced a section I called “The Political in the Personal”:

The personal is not just personal: the story of each of us, if we tell it true, carries in it everyone’s story; and our collected stories carry in them the power relations of the whole society. The section begins with my personal story of surviving cancer (twice), key elements of which were the relationships that grew with other women involved in the same or a similar struggle, including my friend Audre Lorde. I had first experienced a special form of this kind of relationship in the women’s ward of a psychiatric hospital in the United States in the early 1970s. Class, race and gender relations were stark: almost all the inmates in the ward were working class – black, brown and white; almost all the nurses female, the guards male. How psychiatric hospitals (like prisons) are used and who is locked away in them is profoundly political. The aspect of that experience that gave me back some power in an almost completely disempowering environment was the conspiracy of mutual caring created among and by a group of us as women warehoused in a space where we knew in that way of knowing that has no words, that acting only as individuals we might be completely destroyed.

Each of you has experienced and sometimes organized more routine examples of such conspiracies. And yet, if I ask you what organizing experience you have you would probably either tell me “none” or recount the story of an ordinary NGO with its president and two vice presidents.

We don’t know what we do, and that is why we don’t know what we are capable of doing.

This keynote is about the power relations embedded in what we call the personal; and the invisible, unrecognized ways we most often organize against them.

***

Every cancer patient has to face decisions about treatment. A relative few question the treatment proposed by their doctor(s). For those few, the decision is whether to use conventional Western medicine alone (what’s often called, despairingly, slash, poison, or burn – surgery, chemo, or radiation), natural therapies alone, or a combination of the two. Over the years as I read more and met more people who trusted natural therapies, I came to think of Western medicine as essential for crises; and other, largely non-Western therapies as essential for healing. Based on my own experience, my reading, my observations of the experience of other cancer patients, and my discussions with proponents of non-Western therapies, I believe that cancer that is advanced, aggressive, and fast-moving requires the crisis treatment. To put it plainly, if I had known more about the side effects, including the late effects, of the combination chemotherapy, I would still have taken it, but I would have accompanied it with natural therapies from the very beginning and used them in a more disciplined way.

But what kind(s) of treatment to use is not all that cancer patients have to weigh. Assuming that the treatment prescribed is chemotherapy and that they want to use it alone or in combination with natural therapies, the issue is access, and access is determined by money. I first thought of how money determines access to conventional cancer care in 1989 when people – mainly women, many of whom I knew and some I didn’t – raised and sent me money to help pay for my treatment. I thought about it all during my treatment, and more painfully in 1990 when I learned that the drugs prescribed when I failed to go into remission after the original six cycles of combination chemotherapy would cost US$7,500 for three doses. I didn’t have it. More money was raised by people – again overwhelmingly women, almost all of whom could be defined as part of the Caribbean women’s movement – who made and organized donations (this was long before GoFundMe). At the time, Barbados, where I was being treated, provided free medical care to Barbadians, but this approach is rare in developing countries and rarer still when these countries are in the grip of the International Monetary Fund and its structural adjustment programs.

I thought of money and access yet again as my young friend, eighteen-year-old Brad de Clou, fought to survive. Brad had been diagnosed with testicular cancer at the same time that Lance Armstrong was in the news for successful treatment of the same disease. Armstrong’s recovery gave Brad hope, and while I rejoiced in his refusal to see his cancer as a death sentence, I was always conscious that he and Armstrong had access to very different resources. Armstrong had the medical care that is available in the United States to one with money and connections and fame; while Brad’s family, which was not rich, had managed to arrange for him to get his chemo in nearby Trinidad because he couldn’t get it in Guyana. He once told me about his father carrying him on his back down the plane steps when the exertion he had to endure just to access treatment left him too drained to walk. There was no question of being able to afford traveling by medical aircraft. Armstrong survived; Brad didn’t. Today, there are still countless Brads, and countless more in even worse situations than he was.

It is largely because of this issue of access that I find the claims that “we are winning the war on cancer” made The Death of Cancer by Vincent DeVita and Elizabeth DeVita-Raeburn, extravagant and myopic.³ DeVita and DeVita-Raeburn cite figures that show a decline in cancer mortality and argue that most of that decline has resulted from “the refinement and more widespread use of old technology.” Today, they write, we have surgeries that do not mutilate but are nonetheless effective; radiotherapy that no longer damages normal tissue around a tumor; and drugs that prevent the nausea and vomiting that typically accompanied chemotherapy, all of which has enabled better use of old treatments both alone and together.⁴ They suggest that progress in the war on cancer is the result of what they describe as “three paradigm shifts.”⁵ The first is the one from which my treatment derived, and so is not that recent: recognition of the capacity of combination chemotherapy to cure advanced cancer, which has led to a drop in mortality rates of leukemias and lymphomas and a birth of adjuvant chemotherapy (chemotherapy plus radiotherapy or surgery), with a resultant reduction in deaths from common cancers like breast and colon.⁴ The second relates to the success of “targeted therapy – drugs aimed at specific molecular lesions that characterize certain cancers” which has allowed the conversion of “previously fatal leukemia into a chronic disease … [and] is now being applied to common tumours like lung cancer and melanoma.”⁴ The third is the use of immunotherapy – “turning the patient’s immune system against cancer,” which “has already had a major impact on patients with advanced melanoma … and very advanced leukemias and lymphomas.”⁵ “All of these shifts,” the authors conclude, “have not only helped to cure cancer and to extend lives,” but also changed the experience of having cancer.”⁴

But when DeVita and DeVita-Raeburn make these assertions they are not speaking to the question of access. The mortality figures they cite are not disaggregated by the intersecting factors of class, place, race, sex, age, (dis)ability, or sexual or gender identity, although these shape every facet of the experience of cancer and its treatment. According to Michel Coleman, lead author of a 2008 study of comparative survival rates for four types of cancer in thirty-one countries, “Survival in the USA is high on a global scale but varies quite widely among individual states as well as between blacks and whites within the USA.”⁶ Globally, it has been shown that “an individual’s odds of surviving cancer – or even of receiving any type of treatment, including basic palliative care – are strongly correlated with where that person lives. Whereas in the USA the five-year survival rate for patients with breast cancer is 84%, in The Gambia, a country where no cancer diagnosis has a five-year survival rate higher than 22%, breast cancer survival is just 12%.”⁷ These spatial disparities are due in part “to the exponential increase in the cost of new cancer treatments and limited access to cancer therapies,” even though there are policies that could be adopted to increase access to cancer treatments in developing countries; for instance, “The cost of medication may drop by as much as 80 percent after the introduction of [generic drugs] … India, for example, is estimated to save around 800 million dollars by using generic medicines.”⁸

Why are the costs of (nongeneric) cancer drugs so high? The accusation that these costs are largely the result of profiteering by the pharmaceutical industry can no longer be dismissed as the contention of anti-free market elements. Increasingly, it is being made, and proven by senior health professionals. In an issue of the Journal on Oncology Practice, a group of professionals argues that the increase in cancer drug prices in the United States over the last fifteen years “represents to many cancer experts a crossing of a moral line between reasonable profits and profiteering.” Rejecting the reasons usually adduced by those who defend the high prices, they point out that the cost of taking a drug to market is as low as 10 per cent of the usually cited $1 billion-plus figure; that there appears to be monopoly pricing; and that there is no evidence that innovation in cancer research has ever been stifled by curbing profiteering and increasing affordability. Among the reasons why free market forces fail to settle drug prices at reasonable levels, they claim, are that pharmaceutical companies use a variety of strategies to delay or discourage competition by generic companies; and that US laws forbid the importation of prescription medicines from abroad, even for personal purchases, justifying this in the name of patient safety.⁹

Related points were made in a segment of 60 Minutes on a campaign by US oncologists against spiraling drug costs. In the programme, Dr Leonard Saltz, chief of gastrointestinal oncology at Memorial Sloan Kettering, one of the nation’s premier cancer centers, said that the costs of cancer drugs are so astronomical that “a cancer diagnosis is one of the leading causes of personal bankruptcy.” The term “financial toxicity” appears in the literature. Individual patients go into bankruptcy trying to deal with these prices. People resort to taking half-doses of the drug or delay refilling their prescriptions. Saltz explains that his campaign against the cost of cancer drugs started in 2012 when he compared a cancer drug already in use with one which had just been approved for treating colon cancer, and found that although both targeted the same patient population, worked essentially in the same way, and, when given as part of chemotherapy, delivered an identical result, the new drug would cost more than twice as much as the older one. Dr Hagop Kantarjian, chair of the department of leukemia at MD Anderson in Houston, reports that “high cancer drug prices are harming patients because either you come up with the money, or you die. The only drug that works,” he adds, “is a drug that a patient can afford.¹⁰

Of course, the high cost of cancer drugs poses an even deeper problem for developing countries, even for those which are not among the poorest: “Globally, annual spending on anticancer drugs is around US$100 billion, and is predicted to rise to $150 billion by 2020. In the USA, a novel anticancer drug routinely costs more than $100,000 per year of treatment. When adjusted for per capita spending power, however, drugs are most unaffordable in economically developing nations.”¹¹

Big Pharma and the profit motive rule. “Either you come up with the money, or you die.” Your money or your life.

***

Twenty-seven years after I started treatment for non-Hodgkin’s lymphoma, isn’t the kind of treatment I had history?

True, the cancer landscape has been and is being transformed in the sense that new understandings of cancer are leading to new approaches to treatment. Smaller changes are also being made. But we need to look at these developments, big and small, from the perspective of cancer patients in the poorest sectors, communities, and countries. Access to the new breakthrough treatments will be even more restricted than access to existing technology.

There is a sense of wonder among doctors about the new approaches. The print version of a New York Times Magazine article by Siddhartha Mukherjee is called “Doctor without Borders,” a name signifying the individual doctor who, with the new approaches of precision medicine, “feels parachuted onto a strange landscape, with no idea which way to go.” Carrying forward the metaphor of no borders, later in the same piece Mukherjee refers to “the mapless moment that we are now in”:

Most cancer patients are still treated with those hoary standardized protocols [i.e., the kind I had], still governed by the anatomical lumping of cancer … [i]ncreasingly, we are approaching each patient as a unique problem to solve. Toxic, indiscriminate, cell-killing drugs have given way to nimbler, finer-fingered molecules that can activate or deactivate complex pathways in cells, cut off growth factors, accelerate or decelerate the immune response or choke the supply of nutrients and oxygen. More and more, we must come up with ways to use drugs as precision tools to jam cogs and turn off selective switches in particular cancer cells. Trained to follow rules, oncologists are being asked to reinvent them.¹²

However, for most patients in the world, even in rich countries, access is far away. The additional grief about the prohibitively high prices of new drugs is that it appears that some, at least, have a lower level of toxicity than older drugs. It is reported that the two leading immunotherapy drugs have major side effects, but a new drug originally being developed as a cancer vaccine but thought to have potential as an immunotherapy treatment appears to have no side effects.¹³ In relation to targeted therapy, we are told that “because the medicines target mutations or behaviours that are specific to cancer cells (but not normal cells), many of these drugs have surprisingly minimal toxicities – a far cry from combination chemotherapies of the past.”¹⁴

A possible bright spot on the horizon is the recent announcement of the development of a vaccine for lung cancer by Cuba. It is a therapeutic vaccine, one not for prevention of cancer but for stopping the growth of a tumor. It acts as a form of immunotherapy “harnessing the body’s own immune system to fight the cancer.”¹⁵ Since Cuba’s health system is public, this opens up the possibility of an effective treatment for cancer being available to poor people in a low-income country.¹⁶

But Cuba is not today’s norm. Outside of Cuba, once we pay attention to where cancer patients are located in global power relations, once we make poverty central to the assessment of the war on cancer, it is clear that while many cancer patients in rich countries have benefitted from what DeVita and DeVita-Raeburn call “refinements” in the old technology, and a relative few have begun to benefit from the most modern, least harmful therapies, the same is simply not true for the great majority of cancer patients who live in poorer countries and communities.¹⁷ Many of them have no access to treatment at all, while others have access to treatment only with old, “unrefined” technology.

The fact that Cuba is an exception to the profit-driven approach to the care of patients with cancer, and other illnesses, explains why so many people with cancer face, at best, the same choices I faced twenty-seven years ago.
***

During the nearly three decades since I had treatment for NHL, I’ve been close to many people who’ve died of cancer – the youngest, eighteen-year-old Brad, the most recent, forty-nine-year-old Garth, just two years older than I was when first diagnosed with cancer – so I know that being an embattled survivor means that I am one of the “lucky ones.” S, a younger family friend successfully treated for Hodgkin’s lymphoma around the same time I was treated for NHL, responded to my complaints about my treatment’s late effects by saying quietly, “but the problem is that without the chemo we would probably both have died.” I want to put the problem another way: for me, the problem is that the choice the medical system offered me and still offers too many others was between what Gubar calls, in relation to the unremitting horrors of her treatment for ovarian cancer “technologies and protocols that salvage … cancer patients’ lives by stunning, hurting or harming us,” and death.¹⁸ Even though at the time I never questioned for one minute that chemotherapy was my only chance of cure, it felt as though it was killing me. We patients sometimes spoke of this to each other; I doubt that any of us ever said it to our doctors. I don’t think I did. There is something wrong in how we are thinking about healing if we are finding our way through the battlefield, which is where the protocol with which I was treated was discovered, as Mukherjee describes in the encyclopedic history The Emperor of All Maladies: A Biography of Cancer.¹⁹

In her memoir, Gubar does not blame individual medical professionals for what she endured. She coined the word “loconocology” to describe “the double binds into which current protocols put medical practitioners and their patients,” adding, “Physicians fully realize that standard treatments trigger destructive effects, but there is no alternative available to them.”²⁰ The skill, professionalism and kindness of an individual doctor,²¹ nurse, or lab technician can only reduce the pain of patients’ experience of the war on cancer; they cannot alter the reality that once it uses the weapons it still uses, it is necessarily a war in our bodies.

While I was in treatment I’d tried to keep a diary but couldn’t. In the years following this, I spoke about cancer in newspaper columns, speeches, a conference presentation or two, interviews, and tributes to friends who’ve died of cancer. I joined with others to organize a Cancer Society and a Cancer Survivors Action Group in Guyana, and, with three women from other parts of the region, discussed forming a region-wide network of women cancer survivors.²² I didn’t write the story of my treatment because I didn’t yet see the value in reliving what had been a brutal experience. But once it was confirmed that the breast cancer and heart and lung disease were effects of the treatment I had decades before,²³ there was no way I could continue to evade the questions that had been at the back of my mind for many years and faced with advocates of alternative treatments for cancer – “Can what I feel be effects of chemotherapy after all this time?” “Should I have refused the chemotherapy?” Now I had to research the treatment, to understand where it came from, and to ask how anything so life-threatening, discovered on a literal battlefield, became a cure for life-threatening cancer; and I had to record what I’d found, how the treatment had affected me, and what I’d learned from the whole experience about the power relations that worked for and against my survival.

***

Many factors shape, even determine, survival from cancer – where your cancer began and how advanced it was when diagnosed; whether effective treatment has been discovered for that cancer; access to testing and treatment, meaning the availability of those services and the means to pay for them. Luck. I want to discuss two others, one which works against survival and one which works powerfully in its favor.

First, the one which I truly believe inhibits survival. For the great majority of cancer patients, a central part of the work of surviving is holding your own against the power of a medical system and culture which at best underestimate, at worst take advantage of your relative powerlessness. This imbalance affects most people who are sick, I think, but especially those of us whose illnesses leave us physically and emotionally empty. In relation to cancer (and other illnesses like HIV), a part of what disempowers the patient in the first place is how the disease is perceived.

Up to today, there are communities and countries where what Susan Sontag wrote about cancer in 1988 remains true: that it doesn’t just provoke fear of a dreaded disease; it provokes dread of something unfathomable: it is treated as “an evil, invincible predator, not just a disease.”²⁴ People who live in places where cancer has come to be treated as just a serious illness may be as puzzled at the thought of cancer being seen as a predator, as an African American girl I heard of in the 1970s was puzzled by the story of Rosa Parks. “Why would they expect her to sit in the back of the bus?” she asked. It wasn’t that racism was dead in the United States by the 1970s; it was that the struggle led by Black people had changed it, and that its earlier faces were unrecognizable to a new generation. But people for whom “culturally, everything has changed” in relation to cancer are a small minority. The face of cancer remains unchanged for millions. The cancer environment in which they struggle to survive is not dissimilar to the one I encountered nearly three decades ago. As late as 1989 when I was diagnosed people still didn’t say cancer; they said “the big C.” With very few exceptions, friends and family who were told of my illness initially responded with such fear that it fell to me to console them and, often, I was the only one who would name the disease. When I was first in hospital in Barbados, my aunt came into my room on tiptoe although she could see I was awake, and whispered when she spoke, as decent people did in the presence of death. Inside my immediate family it didn’t help that our one direct personal experience of cancer at that time was my mother’s sister, in her thirties, dying not long after she was diagnosed with leukemia – another cancer which, like lymphoma, is not located in any one organ and leaves you to imagine it crawling around inside your body and making it shrink mysteriously.

So it was that in 1989 when I went for my first meeting with the haematologist/oncologist in Barbados who was to treat me, I took six women colleagues with me (I had been doing a part-time consultancy with the Women and Development Unit of the School of Continuing Studies, University of the West Indies, since 1987). They were there to ask the questions I was too exhausted and afraid to think of and to remind me later what the answers were. But more importantly, they were there because I needed some power on my side of the doctor’s desk. This is not a comment on the doctor whom I didn’t know then but grew to like, but on that built-in imbalance of power between doctors and patients, particularly patients whose lives are literally in doctors’ hands.

Yet, compared to the other patients with whom I was treated, I had a lot of potential power on my side. My parents were both medical people: my father first a dispenser/nurse then a doctor, my mother a nurse. I had not only spent about seven years of my life living in the compound of the public hospital where my father worked and interacted with his colleagues and friends, but by the time I got cancer had been sick fairly often and had spent time with doctors and other medical professionals, including in hospitals. I knew the culture. Moreover, I had organized with others, working to win economic, social, and political rights for over twenty-five years, and had a developed sense of entitlement – that is, a belief that people (including me) are entitled to services including health care. Even with all this, the size of the physical and emotional onslaught that cancer and its treatment inflicted on me was so enormous that I often felt powerless in the face of medical professionals and institutions.

I had several experiences of this, including one that began when I saw a strange rash on my cheek which I later learned was herpes zoster. Before me, another patient who was being treated for non-Hodgkin’s at the same time also developed the herpes zoster rash. When I advised her to call the doctors, she said she would tell them at her next appointment, that she didn’t want to “bother them.” That was her general attitude to doctors – that they were busy people whom we shouldn’t “bother.” It is not stretching things too far to say that this is one of the reasons that she died; she never “bothered” her doctors with what she felt. I was less intimidated by our doctors than she was, but I was intimidated. When my rash came out, unlike her, I called in. But when the junior doctor who answered the phone said that my clinic day was imminent and it would be checked then, I retreated. It was no thanks to me that I was seen as urgently as I needed to be; the junior doctor called back and reported that the senior doctor, on hearing what I was complaining of, had said that I should come to the hospital right away, prepared to stay in.

I felt even more intimidated in the loneliness of the isolation ward. Sometime after I was put on a continuous drip my arm began to hurt. I don’t know that the pain was unbearable but I know that on that day, in that environment, in that state of weakness, I could not bear it. I asked the nurses to put the needle into another vein; they said a doctor had to decide. I asked for a doctor to be called; they said none was available. I was insistent enough that one was called at her home but I could tell from the nurse’s responses that she was saying she couldn’t come; I subsided. The rational side of me accepted that she had a life; the frightened patient in me had no room for rationality. I don’t know how long I was alone in this state; you exaggerate it, measure it by the size of your fear. Eventually, thinking only to avoid more pain, when the nurses came to inject more of whatever they were treating me with into the drip I said no, and learned by accident that at least in that hospital ward, refusing treatment was an infallible way to summon doctors: two arrived almost immediately and asked me solicitously whether I was refusing treatment and if so, why. The needle was adjusted. I understood the need for me to be in isolation. I did not and do not accept that there is no alternative to ignoring a patient’s terrors.

While the imbalance of power is not only between doctor and patient but between the patient and the institution of medicine, the doctor-patient relationship is key. Atul Gawande identifies three types: the interpretive (shared decision-making between doctor and patient); the paternalistic (the doctor has the knowledge and experience to decide what’s best for the patient); and the informative (the doctor provides the knowledge and skills, the patient makes the decisions).²⁵ I’ve experienced all three, but I believe that all of them can be deformed by the unequal relations of power between the doctor and the patient.

Doctors’ power derives from our acceptance that they possess the knowledge that will determine our fate, and this is all the more true when their approach to medicine is purely as science, not also as art; I learned from my father that medicine was largely art. The more typical approach leads to a tendency not to deal with the patient’s whole body and mind, and a frequent rejection of non-Western therapies. I know there are exceptions but what I’m describing is what I’ve experienced as the general rule.

The over-specialization which characterizes modern medicine became a particular problem for me as the several late effects of my treatment for NHL developed and I needed more help connecting if and how they influenced each other. But the problem was there even while I was being treated only for NHL, expressed in gaps ranging from an absence of nutrition counseling to an absence of emotional counseling. There was no integrative care. Whether doctors practice the interpretive, paternalistic, or informative doctor-patient relationship, their angle of vision is too often their specialty and they limit themselves to the information that falls within it. The (specialist) textbook rather than the (whole) patient is the main guide. This order clearly needs to be reversed. The single-minded reliance on scientific evidence can blind doctors to the evidence patients provide from their lived experience of both illness and its treatment. I have seldom found any Western-trained doctors, no matter how well they interacted with me, truly open to all I was reporting on my experience when the report did not fit neatly – or at all – into what the science says.

Medicine as science is about general truths; medicine as art, I think, about hearing the patient’s specific truth. When I was being treated for NHL there was a woman in treatment with me, Marva, who was the same age, and had the same cancer, at the same stage. We were very alike in those essential ways. But we were also very unalike, above all in life experiences and belief systems. Those differences were fundamental to how we thought and felt and what we understood about our (shared) disease and how we interacted with our (shared) doctors – how we heard them, how we spoke to them, how they heard us. And we were very very different on the life-and-death question of in whose hands we believed our chances of survival lay.

Medicine as art requires awareness that differences matter.

I’ve found doctors’ lack of openness to patient’s experience when the experience went against the science particularly true in relation to the use of non-Western therapies, even as complements to Western medicine. Most Western-trained doctors I know dismiss and disparage alternative and complementary therapies as not scientifically proven or unsound, sometimes illogical, sometimes dangerous – even when they have a long and proud history of use, including by doctors trained in both Western and non-Western therapies in a country like India. Other people I know, including cancer patients, swear by alternative and complementary cancer medicines, some dismissing conventional cancer drugs as ineffective and destructive products of a cancer industry whose priority is making profits, at whatever cost to patients.

I didn’t come to the question of the pros and cons of different approaches with any clear views or beliefs, much less dogma. At the time I started treatment for NHL I knew little or nothing about the use of alternative or complementary therapies in major illnesses. I hadn’t yet read Audre Lorde’s Cancer Journal or any other narrative by a cancer patient who’d used any of these therapies (Lorde 1980, 1988).²⁶ I assumed Western medicine as a given. In my home, bush medicine (plants or herbs), though not disparaged, was left for my grandmother to prescribe for problems like period pain; not for a life-threatening disease. But since I did have at least that limited experience of using something other than conventional medicine to reduce pain and discomfort, from about midway in the treatment I decided that I couldn’t bear much more chemotherapy unless I found ways to mitigate its negative side effects. Friends searched for and found a Western-trained doctor in Barbados who’d also studied Chinese herbal medicine. I chose a doctor trained in Western medicine so that he could take the drugs I was using into account. Having listened carefully to my report and posing several questions he selected and prescribed some herbs. After taking them for a short while I felt better, less battered, and was not swayed from this by my knowledge that most doctors I knew would dismiss my response as a placebo effect. I continued to see this doctor.

In addition to the Chinese herbs, I pursued other ways to give my body some ease. For example, I wanted to try meditation but at first found it impossible; my mind was too agitated to begin. Then the friend of a friend made a tape which worked – her words carrying me without steering me to a sense of being bathed in color – not as she expected, blue, which is known as the color of (other people’s) healing, but the shades of deep pink and peach with flashes of burnt orange which are the colors of the sky when the sun in Guyana is rising or setting over the Atlantic, and which have always made me feel at peace. With my mind stilled, I could meditate, at least a bit.

Later, after the mastectomy in 2012, the oncologist to whom I was referred for management of my case, on reading the file on the treatment of my NHL said that he was glad that I’d had a mastectomy (rather than a lumpectomy) and that my cancer was found early because he would not have wanted to recommend further chemotherapy given the nature and quantity of the drugs that I’d already had. If he had so recommended I would have fought him but I was grateful not to have to fight, or to argue the efficacy of a mastectomy followed by homeopathy, as I’d decided on.²⁷ From about 2000, I started to use homeopathic remedies more consistently, increasingly attracted to it and to other complementary therapies whose approaches, though varied, were all noninvasive.

To recap: my first cancer, NHL, was diagnosed at stage IVB; advanced and aggressive, it was treated aggressively with chemotherapy alone until I allied the chemotherapy with Chinese herbal medicine and other non-Western therapies like meditation. My second experience was of breast cancer, which was diagnosed at stage 2; caught early, it was treated with surgery which I allied with homeopathic remedies. My biggest self-criticism is that on neither occasion did I ensure that I did the complementary therapies in a truly informed and systematic way. However, on both occasions I was guided by qualified and experienced practitioners.

***

The treatment of patients with illnesses that are physically and/or emotionally disabling requires an abundance of unwaged caring labor. This is the second issue I want to discuss, and specifically how powerfully it can work in favor of survival. While details of what each of us needs will differ (for example, I needed certain kinds of practical help only because I was being treated away from where I usually lived), every such patient needs emotional and practical support. Once this is seen as integral to survival, the collaborations that need to be established in the particular environment where the patient is being treated will become clear, such as with families, friends, or groups of various kinds including cancer survivors’ groups. This is something that our medical systems need to take on board. For one thing, people in poor communities, even where cancer is still seen as a predator to be feared, often have access to networks of support, but to the extent that they get in the way of the “work” of the medical system (especially hospital wards) they are not welcomed, much less encouraged.

Particularly during the two crisis periods – 1989/90 and 2011/12 – the loss of power I felt, and the imbalance of power between me and the medical professionals and institutions, was in part redressed by personal and political friends and “family” who came with me to and from Barbados and to and from visits to doctors, hospitals, and labs. They made me welcome to stay with them in their homes or lent me their homes to stay in. Drove me around or arranged for others to drive me around. Made my bed. Washed my hair. Took photographs so I could see later how far I’d come. Left me alone or kept me company as I needed. Supplied me with special foods and complementary remedies and nutritional supplements and advice and books. Cooked for me (one friend grumbling all the while about “women’s work,” which made me laugh) or corralled or paid others to cook for me. Raised money or gave me their money.²⁸ In one case in 1989/90, employed me to do writing jobs with long deadlines which I could complete by working on my good days. It was redressed (in large part) by women, some of them strangers, who organized medical help for me in countries where I was a stranger. Who mobilized what they called an international healing circle of women in my support one day in 1989/90. By those persons who came together in nightly gatherings to eat, talk, argue, and drink wine (sometimes while I slept) at the home that had been made available to me and my friends/carers in 2011/12. Who sent emails or earlier, cards (“We never met but I met so-and-so at a conference and she told me about you so I’m writing to say…”). Who phoned, visited, and prayed (one woman told me laughingly in 1989 what a fraud I was because while I didn’t pray myself, I was willing to use other people’s prayers). Who made me laugh even when they didn’t mean to, like the one who, searching for how to help me build confidence that I could beat NHL, urged me to take a herb which another woman she knew with cancer had taken. Me: “And how is she now?” She: “Oh, she’s dead.” That carried me for days.

During 1989/90, the best bulwark against isolation and fear was often to nurture the community that Lorde called “sister survivors.” I’ve mentioned Marva already, the woman who, like me, had NHL and with whom I became friends. Marva became an almost daily telephone companion. Together with Jenny, a teenage girl whose chronic illness since childhood had made her far older than her years, we formed a small community. Like women and girls who, living in the same house, find their periods synchronizing, Marva, Jenny, and I would find ourselves admitted to hospital at the same time. There, more than once we saw the same group of night-shift nurses who greeted the second and third one of us to arrive with a “soon as we saw the first one (or two) we knew you were coming!” and put us in beds from which we could see and speak to each other. Mercifully, they didn’t have the attitude to patients that was displayed in what I once heard another nurse say to her colleague one morning, “So many patients came in last night I didn’t get to do my work,” meaning, record-keeping. They didn’t see our interaction as making work for them. They saw that we helped bear each other up. Once, Jenny and I stayed half-lying in our beds all night talking to Marva as she fought her pain and frustration as one doctor after another attempted to find a vein that hadn’t collapsed to restart her IV, and when – sometime in the morning hours – one succeeded in getting a needle into a vein in her foot, as we all finally turned to go to sleep Marva said quietly, “thank you for watching with me through the night.”

Marva and I were both forty-seven or forty-eight years old then, but no matter how old you are, when you’re in pain and alone at night there are monsters in the dark.

Part of what we fortified ourselves with was laughter. After Marva and I both had the high dose methotrexate and leukovorin rescue to bomb us both into remission, we knew that the hair that had begun to grow back after the first six cycles of treatment and that we had been carefully tending would fall out. Unable to bear waiting for the inevitable, I got rid of mine in one go by running my finger backward from my front hairline to the back. All of it came out without my even pulling at it. I wanted to cry, ’till Marva laughed, boasting that she was keeping her hair on by covering it with a shower cap. Then she took the cap off and every single hair came off with it. Only my laughter stopped her tears.

The heart of the tribute I wrote for Lorde when she died – a tribute that I wrote quickly, almost without conscious thought, as though what I was vomiting up this time was the poison of grief – was the recounting of an exchange we once had about lost teeth which started with me frozen with depression and ended with me shaking with laughter.²⁹ Survival work. As with Marva and me, it was because we were both residents in what Sontag calls “the kingdom of the sick,”³⁰ that we were able to laugh at each other and laugh at ourselves with each other over losses, some, or all of which we each suffered, that were a daily threat to our spirits: losses of hair, weight, teeth, skin tone; of attractiveness, sexual confidence, independence, privacy, and dignity. I have since had pieces of that relationship with other women with cancer, and with a few men and one youth with cancer, relationships where the terrors of advanced cancer and its treatment formed a bridge across our other-life differences which we crossed with survival work. The downside is the unbearable pain you feel if they die, as almost all do. When I went to see Marva near the end of her life she looked angry that she was dying while I was not, and I grieved.

It’s not only raising a child that takes a village. My survival has been due also to my brother Abbyssinian’s extraordinary, daily support for the whole year I was treated for NHL: support that ranged from the practical (cooking and cleaning and washing clothes to accompanying me when I went for treatment to wiping up vomit) to the emotional (knowing when and how to provide silent sympathy, and never, ever behaving as though my illness gave him grief that it was my job to assuage). It has been due, too, to the daily physical and emotional housework I’ve done for myself. And it has been due to the not always day-to-day but always life-giving caring work of a wider community of mainly (though not only) women across all these years.

Postscript

Some years ago I saw a report in the Guardian on an experiment in a town in the United Kingdom called Frome. A general practitioner named Helen Kingston had launched the Compassionate Frome project in 2013 as an answer to the problem of “patients who seemed defeated by the medicalisation of their lives.” The project established a directory of agencies and community groups, identified gaps, and filled them with new groups for people with particular conditions. It employed “health connectors” to help people plan their care, and trained voluntary “community connectors” to help their patients find the support they needed. The writer, George Monbiot, commented that the approach used by the project “could, if the results stand up, be one of the most dramatic medical breakthroughs of recent decades,” transforming treatment regimes, saving lives, and saving health costs, and called the approach not a drug, a device, a surgical procedure, but “a newfangled intervention called community.” The provisional data, Monbiot noted, appeared to show that when isolated people who have health problems are supported by community groups and volunteers, the number of emergency admissions to hospital falls spectacularly. Monbiot concluded with the observation that the results of the Frome trial should not surprise given “a famous paper published in PLOS Medicine in 2010 which reviewed 148 studies, involving three hundred thousand people, and discovered that those with strong social relationships had a 50 per cent lower chance of death across the average study period (7.5 years) than those with weak connections.”³¹

A conspiracy of mutual caring. It takes a village.

1. Editor’s note: Thanks to Halimah Deshong and Tonya Haynes for the invitation to Andaiye, and to Peggy Antrobus, M. Jacqui Alexander, Honor Ford-Smith, Carol Lawes, Joy Marcus, and Maya Trotz for their presence in Barbados and for support in completing the edits on Andaiye’s unfinished talk. Thanks in particular to Roberta Clarke, M. Jacqui Alexander, Yanique Hume for introducing me to Dr. Joy St. John, Dr. Sophia George, and Dr. Glennis Andall-Brereton, and who answered questions on cancer prevalence and mortality in the Caribbean, data Andaiye had not managed to locate in time to incorporate into her talk. [↩]
2. Susan Gubar, Memoirs of a Debulked Woman: Enduring Ovarian Cancer (New York and London: W.W. Norton, 2012), 3. The original is in the present tense: “My treatment imperils my health.” [↩]
3. Vincent DeVita and Elizabeth DeVita-Raeburn, The Death of Cancer (New York: Sarah Crichton Books, Farrar, Strauss and Giroux, 2015), 245. [↩]
4. Ibid. [↩] [↩] [↩] [↩]
5. Ibid., 246. [↩] [↩]
6. Cited in Kathleen Doheny, “Cancer Survival Rates Vary by Country,” WebMD, 2008, https://www.webmd.com/cancer/news/20080716/cancer-survival-rates-vary-by-country#1. [↩]
7. R. Sankaranarayanan, R. Swaminathan, H. Brenner, K. Chen, Kee Seng Chia, Jian Guo Chen, et al., “Cancer Survival in Africa, Asia, and Central America: A Population-Based Study,” in The Lancet 11, no. 2 (2010): 165–7. Editor’s note: For a recent study that finds that socioeconomic inequality is widening the gap in cancer mortality rates in US states, “with residents of the poorest counties experiencing an increasingly disproportionate burden of the most preventable cancers” (30), see Rebecca L. Siegel et al., “Cancer Statistics 2019,” CA Cancer J Clin 69 (2019): 7–34. Figures in the Caribbean are difficult to find. A recent survey of ninety-two publications on breast cancer among Caribbean women pointed out that there is insufficient disaggregation and in particular documentation on the impact of socioeconomic inequalities on health outcomes. See Camille Ragin et al., “Breast Cancer Research in the Caribbean: Analysis of Reports from 1995–2017,” Journal of Global Oncology 4 (2018): 1–21. Estimates of global cancer incidence and mortality for 2018 can be found at the interactive Global Cancer Observatory web-based platform, although the International Agency for Research on Cancer (World Health Organisation) notes, “the current limitations in the quality and coverage of cancer data, particularly in low- and middle-income countries.” The cancer registries from which data for South America and the Caribbean was compiled only listed Cuba, Guadeloupe, Jamaica, Martinique, and Puerto Rico from the Caribbean. See J. Ferlay, M. Colombet, I. Soerjomataram, C. Mathers, D.M. Parkin, M. Piñeros, A. Znaor, and F. Bray, “Estimating the Global Cancer Incidence and Mortality in 2018: GLOBOCAN Sources and Methods,” International Journal of Cancer 144 (2019): 1941–1953, a href=”http://gco.iarc.fr/today/data/methods/GLOBOCAN2018_annexes.pdf”>http://gco.iarc.fr/today/data/methods/GLOBOCAN2018_annexes.pdf. In correspondence with Dr St John and Dr Andall-Brereton of the Caribbean Public Health Agency, Dr Andall-Brereton notes that, “We are working with the Caribbean countries to improve the quality of cancer registry data in the region, so that in future we can have reliable data on cancer incidence for our Caribbean Member States to support evidence-based decision making for cancer prevention and control.” [↩]
8. Gilberto de Lima Lopes, cited in Laura Watermeyer, “High Cancer Drug Prices Are Keeping Even Old Treatments Out of Patients’ Hands in Countries Like South Africa, Brazil and India,” The South African Health News Service, 30 October 2013. [↩]
9. Hagop Kantarjian, David Steensma, Judit Rius Sanjuan, Adam Elshaug, and Donald Light, “High Cancer Drug Prices in the United States: Reasons and Proposed Solutions,” Journal of Oncology Practice 10, no. 4 (2014): e208–e211. [↩]
10. 60 Minutes, “The Cost of Cancer Drugs and the Campaign of US Oncologists Spiralling Drug Costs,” October 2014. [↩]
11. Vinay Prasad, Kevin De Jesus, and Sham Mailankody, “The High Price of Anticancer Drugs: Origins, Implications, Barriers, Solutions,” Nature Reviews Clinical Oncology 14 (2017): 381–90, doi:10.1038/nrclinonc.2017.31. [↩]
12. Siddharta Mukherjee, “Doctor Without Borders,” in “The Anatomy of Cancer: A Special Report,” New York Times Magazine, 15 May 2016, 45. [↩]
13. Sarah Boseley, “What Is Immunotherapy?,” Guardian, 6 September 2016.
    Mukherjee, “Doctor Without Borders,” 46. [↩]
14. Mukherjee, “Doctor Without Borders,” 46. [↩]
15. Samantha Bresnahan, “Cuban Researchers Battle Lung Cancer with a Vaccine,” in “Vital + Signs/Dr Sanjay Gupta,” CNN, 2016. [↩]
16. I found no information on vaccine side effects. Generally, immunotherapy drugs have been toxic, but a new drug (IMM-101) appears to have no side effects. See Boseley, “What Is Immunotherapy.” [↩]
17. DeVita and DeVita-Raeburn, The Death of Cancer, 245. [↩]
18. Gubar, Memoirs, 255. [↩]
19. The story of how nitrogen mustard, a derivative of mustard gas, came to be used in the treatment of leukemias and lymphomas epitomises what Mukherjee calls “the connection between the chemical warfare of the battlefields and chemical warfare in the body.” Siddharta Mukherjee, The Emperor of All Maladies: A Biography of Cancer (New York: Scribner, 2010), 92. [↩]
20. Gubar, Memoirs, 240. [↩]
21. As part of that kindness, some of the doctors who treated me across the thirty years since I was diagnosed with NHL did so without charge. [↩]
22. The Cancer Society and Cancer Survivors Action Group are defunct, although some members have gone on to other cancer-related organizing; the idea of the region-wide network was abandoned after the death of two of the women concerned. [↩]
23. While the diseases were confirmed in early 2012 it’s not clear when they started, especially the congestive heart failure and the lung disease. In relation to the latter, one doctor told me that I have both chronic obstructive pulmonary disease and lung fibrosis. [↩]
24. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus and Giroux, 1988), 7. [↩]
25. Atul Gawande, Being Mortal: Illness, Medicine and What Matters in the End (London:
    Profile Books in association with Welcome Collection, 2014), 199–201. [↩]
26. Audre Lorde, The Cancer Journals (San Francisco: Spinsters/Aunt Lute, 1980); and Audre Lorde, A Burst of Light (Ithaca, New York: Firebrand Books Lorde, 1988). [↩]
27. For the background to this see Dr A.U. Ramakrishnan and Catherine R. Coulter, A Homeopathic Approach to Cancer (Berkeley Spring, West Virginia: Ninth House Publishing, 2001), 196. [↩]
28. This was years before the concept of crowdfunding was born. [↩]
29. Andaiye, “Andaiye, For Remembrance, for Audre Lorde,” in Gloria I. Joseph, ed., The Wind Is Spirit: The Life, Love and Legacy of Audre Lorde (Villarosa Media, 2016; originally published by the Caribbean Association for Feminist Research and Action). [↩]
30. Sontag, Illness as Metaphor. [↩]
31. George Monbiot, “The Town That’s Found a Potent Cure for Illness – Community,” Guardian, 21 February 2018. [↩]