19 March 201513 July 2016 Main Posts / Culture / Reflection / Science Our bodies, our lives Elizabeth Caplice The discussion about treatment paths for people with cancer has again flared up. This is because of the sad death of Jessica Ainscough, the author of The Wellness Warrior and vocal advocate of complementary and alternative medicine (CAM) for cancer patients, and the drama surrounding Belle Gibson, who may, or may not have cancer, but did make a lot of money off her suggestions around diet and lifestyle. However, notably absent from this conversation are responses and reflections by people with cancer. Doctors write articles, and journalists and opinion writers weigh in on what we cancer patients must be thinking in our sickened haze. However, our views on how our lives are negotiated around our damaged and pathologised bodies seem to be completely silenced. I have stage IV colorectal cancer. I was diagnosed when I had just turned 30, in June 2014. The cancer had metastasized to my liver and lungs. My prognosis is guarded, unknown – the insurance claim paperwork filled in by my doctor crossed out the tick boxes next to ‘terminal’ because no one knows if I am terminally ill. Everything in my life is now negotiated around the reality of the cancer in my body, and the intensive, invasive and at times utterly dehumanising process of treatment. From the start, I have followed the medical instructions laid out by my integrated medical team of 9 different doctors, all working together to maximise my health outcomes, and provide me with as much quality of life for as long as possible. I have oncologists and surgeons and psychiatrists and organ specialists who, together, have years of experience in managing my type of cancer. Cancer seems to infantilise the patient in the eyes of people who live without chronic illness. We suddenly turn from cognisant individuals able to make important life choices, to people who need to be spoken to carefully, cautiously, and often condescendingly. Our bodies are broken, and our lives now must be dedicated to existing as cancer patients, held gently by the system and dialogue around what it is to have your own cells turn against you. The decisions you make as a cancer patient in regards to your treatment somehow seem to extend beyond yourself. Every other person you encounter has a story, or a recommendation, or a study they read that they insist you read. Cancer invites this in a way that a lot of other illness don’t. I have had a seemingly endless stream of extremely well-meaning advice sent my way since diagnosis from people who do not have cancer. Ainscough’s work was one of the books I was recommended. As with all of these recommendations, I always google them straight away, looking for debunks and essays why what they say is, or is not, correct. It is because I am innately sceptical of anything that goes outside of my oncologist’s recommendations. At the same time, if the advice is offered with respect, I don’t actually mind, and I’ve had friends offer genuinely interesting scientific studies which, though I may only partly understand, have given me at least something to hope for. In my non-cancer life, I work as an archivist, and my master’s degree is in information management. As a result, I’ve learned to know what I know, and more importantly, what I do not. I know a lot about some very specific areas of interest, like contemporary art, and mid twentieth century Japanese novels. I do not, however, know very much about cancer, and treatment paths, and how to decode an academic paper about oncology research. This I think is one of the key traps: not knowing what you don’t know. Every time I see someone posting about cannabis as the ‘cure’ for cancer, or a juice diet, or, my personal favourite, a peer reviewed article that is supposed to say that chemotherapy is more likely to kill you than save you, all I see is an overwhelming lack of respect for those people who have dedicated their lives to saving other people from as much suffering as is possible. The idea that, for some dark reason, my medical team are hiding the cure for cancer so they can continue to profit off my misery sickens me. What perhaps bothers me just as much is the arrogant assumption that someone who is neither a doctor, nor a research scientist, somehow has understanding and comprehension that a doctor or scientist who has dedicated their life to learning about, understanding, and treating cancer, does not. The capacity to google an article and post it on Facebook does not suddenly make people specialists. As well as the endless lists of books and cures, the arguments against ‘big pharma’ always end up happening. How ‘big pharma’ are out to kill us, because a cure for cancer is going to lose them money – which is idiotic on so many levels it’s hard to know where to start. Cancer is not one illness. It is a condition that manifests in each person who has cancer in a different, complicated way. Saying there is a cure for cancer is as wrong-headed as suggesting there is a cure for viruses. A cure for cancer, were it somehow to exist, would also bring in an utterly remarkable amount of money. The ‘big pharma’ conspiracy also completely ignores the fact that ‘big complementary and alternative medicine’ also exists as an industry. The idea of complementary medicine as a benign, cheaper alternative to the evil of ‘big pharma’ seems to miss the simple fact that vitamins and books telling you how to make kale smoothies also cost money, and earn money. However, as a cancer patient, I have found myself incredibly vulnerable to every piece of unscientific rot that’s been flung my way. Each quick solution, each easy way out of the years of treatment I need to prolong my life, gives me a sense of hope. The idea that, on the internet, there’s some piece of advice that I have found, and I have chosen to do autonomously, restores just for a moment a sense of empowerment in what is a deeply passive, disempowering situation. My favourite example of this was when I read an article about the link between Berberine and the uptake of Irinotecan. Berberine is found in plants, including Goldenseal, which is fairly readily available in health food stores. Irinotecan was one of the chemotherapy drugs used in my first line treatment, as a part of a protocol of drugs known as FOLFIRI with Avastin. Through my extensive evening of google searches, I learned that Berberine has been, in a few studies, proven to increase the uptake of Irinotecan in the body. I called my colorectal care coordination nurse with the exciting news of Berberine’s exceptional properties, asking if I could take it. I got a returned phone call the next day, with her stating in a patient, bemused flat tone of voice: ‘I asked Y — [my oncologist] about it. He said no. The Irinotecan is working well enough as it is. If there’s more being taken up by your liver, it will damage it.’ There was a similar conversation around aspirin which, though may have some evidence of preventing recurrences of tumours in the bowel, is also a blood thinner which is problematic when taking drugs that break down small veins. They did consent to me taking an extra dose of Vitamin D and probiotics, patiently explaining that there was not enough clinical evidence to support them as definitely helpful, but they weren’t going to harm me. My partner has an excellent line she would give me, when, earlier in treatment, I was more eagerly grabbing at straws. She would explain that my oncologist, with his years of study and dedication, was more likely to have read and understood these journal articles than I, and if it would help, he would have put me on those drugs. My oncologist and medical team are endlessly generous with their time, and have done everything they can to keep an extremely anxious person like myself as close to stable as possible. That is almost a full time job in and of itself, without the balancing act of surgeries, chemotherapy protocols, and radiation. Cancer treatment is largely passive: you do what you are told, when you are told. I take advice painfully, literally sometimes – my surgeon told me to go for a walk every day to get fit, so I started an intensive cardiac programme with an exercise physiologist. It’s often said that cancer is a mental battle as much as a physical one. I think this is particularly true for those of us with poor prognosis. You are bargaining your life, each day, on the words that your doctors tell you. There is no choice but to trust them. I have sympathy for those people who, out of desperation and perhaps without the scientific literacy to discern between evidence and someone’s decision to start living off green juices painted as a cure, go down these strange paths of alternative cures. It is also important to remember how outright unpleasant cancer treatment can be. When I see, yet again, another voice deriding someone’s decision to eschew medicine for CAM, I wonder for a moment how they presume to understand what it is to be told that you have cancer. Not a friend. Not a family member. To be told, yourself, that you have cancer. I found out the tumours in my liver were secondary bowel tumours while sitting in an overstuffed lounge chair in my apartment. My liver specialist called me late one afternoon, hoping my partner would be there so I wouldn’t be on my own. Sadly, I was alone. She gently asked me if I was sitting down, and I knew that whatever they had found, the news was bad. I swore and broke down into tears, and couldn’t speak as she explained the next steps, the beginning of the rest of my life as a person with advanced, incurable cancer. I wonder how they presume to understand treatment, as your hair falls out, and your life is suspended, scan to scan, waiting to see if the chemotherapy is working. The idea that there is a solution in a simple set of rules that you have chosen, that you feel you understand, is a tempting, empty promise. Unless you have sat in that place, and had the life sentence of cancer handed down, there is no way you can understand how it feels. I sat in my oncology appointment as a kind, softly spoken man told me that they couldn’t promise me I would be alive in two years. He showed me images of my strange, vile body, my internal organs lighting up like sick Christmas trees from the cancer in the scan. He told me that a scan found spots scattered extensively throughout both of my lungs, presumed cancer. And he outlined what the next two years of my life would look like. I had a port inserted in my chest, with a tube running into my heart to pump the chemotherapy through me without needing to access the veins on my arms. I had 12 cycles – which is 6 months – of fortnightly chemotherapy. I had a fever that lasted for months, and have had countless visits to the emergency room. The radiation on my pelvis has left me with a burn that blistered on my backside, and swung me into a medically induced menopause. Most of my liver is being re-sected, my rectum removed, and I will be defecating into a bag for the next six months while I endure more chemotherapy. My cancer is a life sentence. Treatment is unlikely to stop, and I’ll probably remain on chemotherapy at a low dose for the rest of my life. My chances of living five years are very, very slim. When an article in a major newspaper, or a recently published book suggests that there is another way, there is suddenly hope that there is an easy way out of this treatment cycle of hell. ‘Cancer can be cured with juice and coffee enemas and beach yoga and acupuncture and Chinese herbs.’ A newspaper feels like an authority. A book published by a major publishing house, even more so. There’s a strange and sadly incorrect assumption that the media has the public’s best interests at heart, rather than a desire to tell the best, most fantastic story and to earn as many clicks on their website as possible. Publishing companies don’t care about treating cancer.They care about sales. The fact that Bella Gibson’s apparent cancer story was never really investigated, despite the many inconsistencies regarding how cancer operates and the photos of her body which is blissfully free of the scars it would carry if she’d had major heart surgery clearly indicates that the publishing world doesn’t have an interest in providing medical assistance to sick people. It is easy to forget this when you are desperate for any solution, any sort of hope, that one day you will not have cancer. It is easy to believe the lies, under a sad and broken veil of hope. In the coverage and discussions, our voices are unheard, our lived experience silenced from a discussion that impacts our lives in a way that journalists and think-piece writers and even doctors cannot understand. I struggle sometimes when I hear stories of people with cancer that most likely would be cured if only they followed the treatment regime suggested by their doctors who make the decision to follow a CAM remedy. Not even your doctor will judge you though. On my first appointment my nurse told me stories of people who chose to refuse therapy, and somehow live, or who have a radical response to chemotherapy. I am now lucky enough to be in that position. My most recent PET scan (a scan using radioactive iodine which highlights cancer in the body) showed a dramatic response to the six months of chemotherapy. We are largely invisible though, and as much as people can judge whatever decision we make about our treatment, and our care, it is our bodies, and our lives that pay the price of whatever treatment path we choose. Elizabeth Caplice Elizabeth Caplice works at the National Library of Australia as an archivist, and has written for Overland, Meanjin, Feminartsy and The Lifted Brow. She blogs at sky between branches and has strong feelings about subject headings, craft and Star Trek. More by Elizabeth Caplice Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places. If you like this piece, or support Overland’s work in general, please subscribe or donate. 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