The Price of Experience: Writings on Living with Cancer

By Elizabeth Garrett

Writer and political activist Mike Marqusee was diagnosed with multiple myeloma, a type of blood cancer, in the summer of 2007. At first, disinclined to share his misery with others, he was reluctant to write about his illness. But he then came to realize that doing so provided a precious continuity with his life as a writer before contracting the disease, and a way of reaching out to a wider world that the illness made physically less accessible. Writing allowed him to address what he saw as a variety of insidious platitudes that surround cancer, often connected to the individualistic idea that the sufferer must be brave in battling the disease, with the inevitable corollary that those who succumb have, in some measure, brought it on themselves.

And so Marqusee begins to write about his illness. Not just his own symptoms and feelings, but the responses of friends to the news that he is ill and the way these reflect broader social attitudes towards the sick. He describes the political struggles occurring in St Bartholomew’s, the London hospital that cares for him, and the crisis in Britain’s National Health Service (NHS) more generally, at a time of harrowing cutbacks. Big Pharma, whose drugs keep Marqusee alive but are sold to the NHS at prices reflecting the power and greed of a ruthless extortionist, is the subject for particularly astringent scrutiny.

The observations about cancer in these pages are never trite or sentimental. They are acute, moving, impassioned and political. And they convey important, shared truths, both personal and social, about an illness that will affect one in three people in the course of their lives.

• Language: English
• Publisher: OR Books
• Release date: Jun 15, 2014
• ISBN: 9781939293459

Elizabeth Garrett

Mike Marqusee (1953–2015) was a journalist, political activist and author who was born in New York City, and who emigrated to Britain in 1971, where he developed a love of cricket. As well as his many books, Mike published articles in the Guardian, the Independent, the Daily Telegraph, the Observer, BBC History Magazine and India Today. He also was a columnist for the Indian newspaper The Hindu and for the British left-wing magazine Red Pepper. In 1995, Mike helped set up 'Hit Racism for Six', a campaign against racism in cricket and in 2005 was named an Honorary Faculty Fellow by the University of Brighton in recognition of his 'contribution to the development of a critically-based form of journalistic scholarship in the social, cultural and political nature of contemporary global sport.'

Book preview

ZOAS

AN INTRODUCTION

When I was diagnosed with multiple myeloma in 2007, I vowed to friends that I would not add to the surfeit of cancer confessionals. I had other topics to write about and surely nothing to add on this one, which was already extensively and expertly covered. It’s a promise I should have known I would not be able to keep.

Reconstructing the early phases of the illness-treatment (at the level of individual experience, it’s impossible to disentangle one from the other) is difficult for me. But I do remember the day I first heard the diagnosis cancer.

I had been feeling pains in my chest and lower back for months and feeling ever more unwell in an all-encompassing way I couldn’t explain, to myself or the doctors. The chest pains were confusing: located not in but over and around the heart. I had reached a stage where I was desperate for a diagnosis, any diagnosis (or so I thought).

When the GP phoned to ask me to come to the clinic to discuss my blood test results, I knew the news would not be good. I wasn’t shocked when he explained that the test revealed a high level of something called paraproteins, indicative of a malignancy. He also observed that I looked terrible, and referred me to the nearby Homerton Hospital for urgent examination.

Before we parted he wrote paraprotein down on a slip of paper. At home, I looked it up on the Internet. The connection with multiple myeloma was prominent. I had vaguely heard of this disease, but knew absolutely nothing about it. That moment marked the beginning of what became a long and continuing process of education.

Later that afternoon, at the Homerton, the examination was thorough and therefore, in a way, reassuring. My heart and lungs were fine and my blood pressure was normal. But when they prodded, as they had to, the places in my rib-cage and in my pelvis where, I later learned, the myeloma lesions had formed, the pain was acute and I had to give it voice. A strange colloquy followed. Whenever the doctor prodded a sensitive spot, I uttered a loud involuntary Ouch! Sorry! she responded apologetically. That’s okay, I reassured her. Round and round we went. Ouch! Sorry! That’s okay! The doctors made it clear that I had a very serious illness and would have to go to the haemoncology unit at Barts for specialist treatment. But, they said, I wasn’t dying from it just then, and could go home with my painkillers. Which, by this point, was all I really wanted to hear.

Throughout the day I had been wondering how and when I should tell Liz, my partner, what the last few hours had revealed. I rang her at work and said that I was at the Homerton but was okay, and I’d explain it all when we met. My tone was light, even cheerful. She agreed to meet me at the hospital so that we could go home together, and when she arrived, I suggested we sit in the hospital café, where I would fill her in on the day’s developments. I was smiling, as if it would be an amusing shaggy dog story. I started out by telling her the good news: there was nothing wrong with my heart or lungs. I look back and laugh at myself. Who was I kidding? Who was I trying to protect? It was a silly thing to do to Liz, who at first took my reassuring noises at face value. When I got to the cancer part, everything changed.

In the days that followed, my mood was volatile. At times I felt a strange calm and clarity. I walked through my neighbourhood streets, observed the distracted bustle of traffic and pedestrians, and was powerfully impressed with the idea that the larger pattern of life would go on without me. I felt sadness, but no panic. At other times, I was gripped by a cold terror. I walked down the same streets, observed the same things, but felt that larger pattern of life as a terrible condemnation, a standing rejection of my failed organism. As I passed groups of boisterous children, I was overwhelmed by a fear that I would somehow contaminate them, that they would be well advised to steer clear of me. About this time the young cricketer Stuart Broad was making a big impression for England in a series against India. The then-21-year-old all-rounder was strong, fit, and unabashedly confident in his own body. I couldn’t stand the sight of him and had to turn away from the television. He was a picture of blooming good health and future promise, both of which I had lost and would never regain. I hated him for that. For a moment I was frightened that I wouldn’t be able to watch cricket on television any more—which for me would have been an irreparable loss.

Those contrasting moods soon became less extreme, but I don’t think I’ve ever arrived