In June 2014 I received a diagnosis of stage IV bowel cancer with metastatic tumours in my liver and lungs. My first reaction on hearing the diagnosis was to begin text messaging the news to my friends and family. These text messages remain in my phone, and I look over them sometimes to remind myself that yes, I do have cancer. I spoke to my mum, my sister, and my closest few friends, in shocked, monosyllabic bursts, before logging in to Facebook to announce, in a long and ugly post, the fact that the tumours in my liver, which I had already been writing about, were cancer.
From the beginning of the diagnostic process, I have used words as a tool I have to shape, frame and reframe my ideas around cancer. My cancer seems abstract to me. My diagnostic narrative is one I find I must repeat frequently in order to make it substantial. It goes like this: I suffered from mild nausea for two years, which I had attributed to a common side effect of a drug I am on, called Lamotrigine, an anticonvulsant that treats both my temporal lobe epilepsy and bipolar disorder. The nausea got worse over this two-year period, and in May 2014 my GP ordered an abdominal and pelvic ultrasound to check for upper gastrointestinal tract issues that might have been contributing. The ultrasound revealed six to eight very large tumours, including one that was ten centimetres in diameter, in my liver. According to the medical language in the paperwork, the ‘tumours’ were in fact lesions, a word more alien and mysterious than tumours, and yet somehow safer. For three weeks three doctors told me that there was almost no chance that these lesions were cancerous. After a long list of tests—two upper abdominal liver MRIs, two CT scans and an endoscopy—a biopsy was ordered to confirm the suspicion that they were a type of benign liver tumour known as a focal nodular hyperplasia (FNH).
To the surprise of everyone in my medical team, the lesions were shown to be secondary tumours, metastasised from an as yet unknown primary cancer. Further tests were required to locate the primary cancer, which the doctors suspected was either ovarian or colorectal cancer. A colonoscopy located the primary cancer, which is in my rectum. To discover the extent of the spread of the cancer, I then had a PET scan, which involves being injected with radioactive dye prior to the scan. You are told to try to avoid thinking and attempt to sleep, to prevent your brain taking up too much of the radiation. The PET scan located further secondary tumours, small enough to be called ‘spots’ by my oncologist, in my lungs. I celebrated the news of the location of the primary cancer and the diagnosis of colorectal cancer with a large meal at an expensive restaurant.
I was given a document that described the state of my bowel, illustrated with stills from the video taken of my colorectal system. It stated that the primary cancer was only three centimetres and my bowel was in no danger of an obstruction. This was the best news I had received in a month. The treatment for the cancer involved twelve to eighteen months of aggressive intervention. Twelve rounds of chemotherapy (which I am about to finish), twenty-eight sessions of radiation every day for five weeks, a procedure to remove one liver tumour in a high-risk area, followed by a full right lobe resection of my liver, a rectal resection and reconstruction, with an ileostomy to bypass my bowel while it heals, a reversal of the ileostomy, and then additional chemotherapy to ‘mop up’ anything that is left. I hope this treatment regime will buy me time—six, twelve months, before the cancer returns and we begin again. No-one can tell me whether it will come back. I started chemotherapy the day I was due to finish a tattoo that has been in progress for several years. I tell people this, in emails and online, when they ask about my cancer. It’s part of the narrative I use to describe the chain of events that saw me transition from the normal world into the alternate reality of the medical system.
I quickly had to learn the language of cancer. I didn’t know where my liver was before the scan found the tumours—I had thought it was in my lower back. When discussing my cancer with friends, it turned out that few of them knew where the liver was either. I learned what a secondary tumour was, and what primary cancer meant. I learned that although there were malignant lesions in my liver and lungs, I did not have liver cancer, or lung cancer. The cells in the tumours were not liver cells, but rectal cells that had travelled to my liver, and also my lungs, to form tumours, or lesions, and spots, or nodules. I still struggle to pronounce metastatic and to spell metastasis. I learned that primary colorectal cancer was less threatening than liver cancer. I also became strangely reluctant to call my cancer ‘rectal’ cancer. I still default to ‘colorectal’ rather than ‘rectal’, as though there is something more vile about the reality of the cancer being in my rectum. It is more revolting, more easily associated with shit and blood and mucous, which are the realities of colorectal, or bowel, cancers.
I learned about the language of staging cancer, that what I had assumed to be stage III for some time was stage IV—advanced cancer—and that this was bad news for my chances of completely removing the cancer from my body and for survival in the short and long term. My body was divided and defined by terminology that was new to me, by the black and white images of organs that were debated and dissected by my medical team, which comprises seven specialists working to contain my cancer as much as possible for as long as possible. The numbers that determine the operability of my liver are more real to me than my liver itself because those numbers represent a tangible goal. It is liver failure that will kill me if the cancer cannot be removed soon. But the surgery on my liver carries a 15 per cent mortality rate, an extremely high risk. I could choose surgery or begin palliative care. Even if successful, the resection may buy me only a few years. The cancer is incurable. It is a choice between possible death in the next few months with the resection, or certain death in two or three years without. I have chosen the resection.
Thanks to a Twitter initiative called #bloginjune, which aims to encourage library and information management workers to write a blog entry every day for a month, I have been blogging about what I at first called ‘the curious incident of the tumours in my liver’ even before I received my diagnosis. Blogging took up a substantial part of my day and became a time in which I attempted to shape my cancer into a narrative that gave it meaning. There were days when I would spend my writing time coming to grips with new words and terms, finding a way to understand them and how they related to me and my body.
There are words that come along with a cancer diagnosis, ones that are hard to use, hard to write about. A cancer diagnosis ushers you into a world complete with its own language and customs, one that outsiders, people who do not need to understand the weight of the word cancer, simply cannot enter. It’s an idea Susan Sontag captured perfectly in her description of ‘the kingdom of the sick’. The words those of us who are in that kingdom need to use to understand and frame our illnesses are often complicated, and easily misunderstood without significant scientific literacy. The words others use, the words imposed on us from outside, can be affirmative or infuriating. The kingdom of the sick is filled with this new language, these new places.
I dislike writing certain words that abound in the kingdom of the (cancer) sick for reasons I still cannot articulate. I don’t like chemotherapy, chemo brain, or chemo. They are harsh words with baggage. But it could be something as irrational as disliking the way the letters look. I remember a lifelong terror of the word oncology and shuddering as I walked past it in hospitals. Oncology no longer frightens me as a word, but chemo leaves me uneasy in a way that radiation, surgery, ileostomy, resection and ablation do not. These are all invasive procedures, but the words just feel better to me.
Cancer is the most obvious of these ‘difficult’ words. When I tell people I have cancer, or write the sentence, or choose to have it in my Twitter and Instagram biographies, I am aware that it has all the connotations that distinguish the dominant cancer narratives, the ones I expected to encounter on starting treatment. Vomit, hair loss, gaunt faces, abject terror, decay, death, pain, suffering. Romantic scenes in a daytime TV movie of a thin beautiful woman seated on the beach, a white flowing dress, no hair, a single tear on her face as she stares into the ocean, thinking of her gentle death to come. The enemy invading the flesh. I prefer to view the cancer as an unfortunate accident. I resent my cancer less than I resent bad ex-lovers, because my cancer means me no harm.
My cancer is as much a part of me as my hand, or my brain. These are the ideas that comfort me, and so I reject the dominant ‘battle’ narrative around cancer. Fighting cancer seems pointless, as to do that is simply fighting my own body. I do what the doctors tell me to do. The medical process is passive, filled with sitting in waiting rooms, reclining in chemotherapy day wards, lying down for yet another CT scan. When I am writing about my experience I worry that someone else with cancer, who has a different narrative to mine, will take offence at how I write about my more passive view. These are the considerations that come with writing openly about cancer—you worry about how your words might affect those reading what you write, those who might happen upon your internal monologue splattered across a public forum.
The day I was diagnosed with cancer, I wrote a blog entry in an attempt to express how I felt. As a lifelong hypochondriac who was convinced I had cancer, to learn that I now did have it was the realisation of my greatest fear. As a thirty-year-old with a possibly terminal illness, I struggled from the beginning with how to talk about death—how to make jokes about it, and how to be serious. How do I express my grief and reinterpret my own life? I am an oversharer by nature, and worry about how to mitigate the reader’s pain when they encounter the more confronting parts of my blog.
I decided to include a list of topics at the start of each blog post—needles, blood, shit, death—so that people who didn’t want to read it were able to look away. These could be considered trigger warnings, but needles might not be a ‘trigger’ so much as something that makes the reader feel really uncomfortable, and I acknowledge that someone close to me may not want to read a 1000-word essay outlining my bowel movements for the last forty-eight hours. So I have come to self-censor to a degree, particularly in the more public places where I write about cancer and when dealing with the most private aspects of my illness—the way it prompts memories and makes me want to correct wrongs with people from my past, and how it affects my relationship with my body.
I am discovering my natural tendency towards oversharing does have its limits, and I find it interesting to see where those limits lie. Writing about shit—which is, unsurprisingly, a subject that frequently arises when dealing with bowel cancer—is something I feel is important to do. After all, it is through checking your shit for early warning signs that you may be able to prevent finding yourself in my situation. Bowel cancer is very treatable, and often curable in people who catch it in the early stages. Writing about sex and cancer, however, has been almost impossible for me. That is, in part, because of the nature of my audience, which I know includes many colleagues and managers in my workplace, and because my desire to keep face apparently kicks in when I write about sex in a way it doesn’t when I write about other intimate subjects.
It is both remarkable and special to me that people choose to read about my cancer, but it is also somewhat perplexing. At times I feel a sense of duty to keep updating, which becomes harder and harder as my chemotherapy continues. This is not because I have become sicker, but because the chemotherapy has become far less challenging as my treatment has continued. The nausea that has been the background to my life for the past two years has gone, my liver function borders on normal, the persistent pain in my ribcage from the tumours pushing it out of alignment has stopped, and my red blood count is better than it has been in years. The tumours in my liver have shrunk to the point of operability, and my lung spots have disappeared from view on the scans. Treatment remains, as always, dull. But dullness and boredom are harder to articulate than abject terror and fear of death, or even the list of side effects I thought I had experienced.
The first three months of my treatment were accompanied by a particularly noxious cold. That cold was worse than the chemotherapy. How do I write about cancer treatment as a positive experience that gave me so much of my life back, albeit in a very different form—a life now centred around hospital trips and the excitement of catching up with my favourite nurses? I feel overwhelmed with guilt when I try to write about it, because of the many people who may read it and who find chemotherapy to be the most daunting and ugly experience of their lives. I am also aware that the cancer aspect of my life is now far less interesting to read about. I am aware of my desire to please my audience with tales of dramatic discomfort, rather than the reality of my current condition, in which I am troubled only by exhaustion, nose bleeds, a week of nausea and the growing fog of chemotherapy-related brain damage and memory loss.
Blogging has been a major part of my life since I was sixteen and I have kept numerous blogs on different subjects in the intervening years. But none of those blogs had the audience of my current blog, my cancer blog. Before its current incarnation it was about my balcony garden. It was photos of plants and vegetables growing in small spaces, posts about pest control and discussions on thinning seedlings. Only when diagnosed with a life-threatening illness did my blog become interesting.
I have been living with bipolar, which has been effectively managed and in remission for the last two years, and an atypical form of temporal lobe epilepsy that causes hallucinations and religious-like euphoria, since my late teens. Cancer treatment, for me, is nothing compared with the process of cycling through psychiatric drugs with their intense side effects. The language around mental illness is far less sympathetic and, it seems, far less interesting. I try not to be enslaved by the egotistical interest in blog statistics, but I find interesting patterns. The more miserable and cancerous the title, the more hits I receive. When I write about mental illness in relation to my cancer, the hits drop significantly. Cancer, it seems, is more interesting to read about than bipolar 1 and temporal lobe epilepsy. Or perhaps it’s just that my writing and reflections on cancer are more compelling and coherent than posts written in the middle of a bipolar mania. In many ways the bipolar, were it to come out of remission, would pose as great a threat to my life as the lesions in my liver. Yet to talk and read about it seems somehow crass and uncomfortable.
I use hashtags on Twitter and Instagram when I write about cancer. I have a few I use the most—#cancerselfie, #cancerfitness, #cancerfashion, #cancerisboring, #inspirationalcancerhero and the currently fashionable #blessed. They make people laugh, and I often laugh at them myself. It is more for my own amusement, but I can’t deny that I also do this for the audience. I have a modest number of Twitter followers—around 540. Many of them are colleagues from the broader library, archives and information-management sector, where we mix personal conversation with professional observation. The experience of cancer, and writing candidly about it on Twitter, has strengthened many of these friendships, which exist entirely on Twitter.
When I moved from Brisbane to Canberra in 2008, Facebook was my lifeline to the friends I left behind and I have continued to use it as the platform has changed during those years—from a place where close friends and I would make plans and talk explicitly about our lives on each other’s public walls, to a general place where you add people you meet in cafés, colleagues and family members. I used Facebook as a crutch during the first months of diagnosis. Emotionally and mentally I was broken and I needed to be held up. The support I have received through social media was, and still is, one of the things that has made cancer easier for me. I never knew until my diagnosis how many people cared about me, and discovering that was one of the most important experiences of my life. I spoke often and openly about my experiences, and I received support from the large proportion of people in my extended network of Facebook friends who also have cancer, or have had it.
But in the last month or so something has changed in the way I use Facebook: I struggle to write there, and I feel heavy when I log on and read the updates and arguments, photos and ads. This feeling is apparently not uncommon for people with cancer and other chronic illnesses. I can no longer handle the onslaught of other people’s words in that space—they seem disconnected and abstract, and are surrounded mostly with arguments about politics. Perhaps it ties into the reality of my cancer narrative becoming more boring, and my struggle to find interesting words to describe the land of the sick. Similarly, I am using my blog less. I half-write posts and then question their relevance, their importance, and whether I really need to share what I have written.
I have been sending extensive if intermittent emails to close friends in other states. It is in these that I am most intimate, most angry, most sad, and most full of the desire to express my love for the people closest to me. I have written rather than spoken to people about these things because I still find the intimacy and false sense of permanence that writing carries to be easier than expressing these sentiments aloud. This writing also gives me a sense of immortality in the face of my own upcoming death.
Memory affects how I use language. I cannot remember words after I speak them, but I can remember them when I type them. This is why, I think, I take such comfort in written language. I may struggle to form the word mango with my mouth, to create the sounds, to link the smell of that yellow, large egg-shaped fruit that rots on the side of the road all summer in Queensland with the movement of my tongue, but the letters m-a-n-g-o are somehow more forthcoming. My poor spelling has haunted me, yet I recall words, oddly spelt and constantly corrected by Google searches, faster when writing than I do when speaking. It has become harder for me to talk to people whom I see rarely but who read my blog or communicate with me on Twitter or whom I regularly email, because I forget what I have already told them in writing.
Stephen J. Gould wrote about the nature of variance in cancer—how the reality of your condition and your chances of survival lie not in the mean, or the median, but rather in the gaps and spaces that surround our understanding of disease, in the variation and unpredictability of the numbers and statistics that are central to the experience of cancer, and in the endless unpredictability of any individual body. I have tried to express this in my own writing, a sort of therapy to convince myself that any of the statistics I have seen by accident do not define my future. I have asked my medical team not to give me any statistics, and they have all said that I most likely lie in the variance and that the numbers are meaningless. I inhabit a liminal space and I write about it so I can feel solid.