Caplice article
Type
Reflection
Category
Culture
Science

Our bodies, our lives

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.

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.

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

Comments

  1. Thank you so much, Elizabeth, for this beautifully written, fiery piece. What you say is so important, I’m very grateful that you wrote it and hope it finds a wide audience. And I’m so happy to hear your recent PET scan showed you’ve responded well to chemo. All the best with it.

    And thank you Overland, as ever, for making a place for it.

    • thank you so much. i’m really glad Overland gave it a home.

      i’m up for the start of surgery next week, so i’ll need all the luck i can get. x

  2. Wow. This is a story that needs to be heard and you have told it brilliantly. Thank you and good luck.

  3. Wow! What a wonderful piece Elizabeth. Thank you so much for sharing your experiences. Best of luck xxx

  4. After reading your essay, I instantly thought, “What a courageous woman!” And then reflected on why I thought this. It is like a heavy coat you must wear, however you never chose this option. I found a definition for courage; the quality of mind or spirit that enables a person to face difficulty. I admire this immensely, as I know for many including myself that this trait would not be so obvious. Keep smiling, keep living, keep inspiring, keep writing, keep loving and keep being courageous; because you are bringing out the best of who you are, to all of us. Thank you xox

  5. Thank you for this powerful and important piece. As someone whose job is, in part, to take on the pedallers of false hope and shonky cures it is important to be reminded that my contempt for those who decieve should never include judgement of those who choose to follow an alternative path to mainstream medicine.

    And absolutely best wishes for the surgery and what comes after.

  6. thank you for writing this piece Elizabeth and best wishes for the surgery and your continuing journey on this unknown road. xx

  7. Thank you for letting us in, Elizabeth. I have lost a number of friends to various forms of cancer. Your writing has given me new insights and a profound new depth of understanding. I wish you well.
    Blessings
    Anne

  8. Thank you so much for sharing your story. I wish you and your family success in your treatment. I too found small hope in my husband’s recent struggle with the food related complementary options. They were something I could do.

  9. Dear Elizabeth, so much of what you wrote resonated, both on a personal level having stage 4 rectal cancer at 32 and also thoughts towards and experiences alternate medicine. I have to disclose that I do work in the pharmaceutical industry, but hey if there were any secret cures out there I bet pharmacy would find a way to make money from them and produce them on a large scale foreveryone. I do think alternate medicine offers wellness and that’s important. But I do strongly believe in hard evidence. I remember being quite insulted when someone gave me copy of a Liz Hayes book – you can heal your cancer by postive thinking!?!
    I have been lucky as I only had one small liver met which could be resected and I’m all clear 6 years later (thanks to chemo, avastin, and alternate therapies to complement pharma).
    My thoughts are with you. Continue to control what you can in this difficult journey- your attitude.
    Kath

  10. as a biomedical research scientist, I just have to say……what a superb and deeply insightful price of writing. Thank you. What a bugger cancer is.

  11. like Vic , I’m a biomedical scientist and just wanted to say your article is very heart wrenching, yet thoughtful and insightful. Thanks for sharing.. Really hoping the best for you.

  12. What a wonderfully truthful insight into a small piece of what you are going through. Having been diagnosed with both ovarian and uterine cancer back in 2013 I have since struggled with being spoken to like a child or even worse spoken to (mostly from people I considered as close friends) about the poor long term outcome. I am still exactly the same person as I was the day before I was diagnosed, a lot more battered bruised and missing bits but still the same person. i just want to scream sometimes and say look at me, talk to me not my disease.

    Sadly I have found that it is much easier to lie when people ask how I am – as 99% of people just ask that question and move on to the next question. In other words – I don’t really want to know but I have to ask. So instead of being able to open up and say actually today I feel like shite – I answer with I’m great thanks.

    Elizabeth all the very best with the operation and the many next rounds of treatment to come. Fortunately you sound like you have a wonderful partner who is there for you. All the best.

  13. Wonderful piece – you are right on so many accounts.
    Human imagination is more constrained than we care to admit: no one can feel what it’s like to have a cancer diagnosis except a person who gets one. Far be it from anyone else to judge treatments, reactions, etc.
    Blessings to you from across the globe! I hope many people read your wise, strong words. Stay hopeful!

  14. This is a wonderful piece of writing. I supported both my mother and my young daughter through diagnosis and treatment of rare cancers, and this brought back that roller coaster we travelled on through advice, alternatives, and hope. Even as a medical researcher myself it was confronting and often very confusing. But I know it’s different again to be the one who is told they have a terminal disease. Thank you for sharing your stories. I wish you much happiness and good luck with the surgery. Xx

  15. I remember the day u were born your parents and sister were so happy so was iiam a friend to your parents for over 37 years and have followed your life story all the time I even remember when u were on tv as a beautiful young girl thought u might b the next Nicole kidman to hear u were so sick was soul destroying to me and your parents I hope and pray your op tomorrow goes well all my love maree xx

  16. Thank you for sharing this story Elizabeth. My brother is an oncologist and I know he sometimes finds it v distressing when patients make a decision to leave behind conventional treatment in favour of alternative therapies, especially when their cancer is very treatable through oncological/radiological etc methods. I will share your story with him x

  17. Dear Elizabeth,
    I’m completely humbled by hearing your story and very sad news. I was watching the 7:30 report and reconsied your face from QUT, Visual Art. My thoughts are with you and will continue to stay strong. Take care
    Liz Clout

  18. Thank you so much for writing this and articulating everything that I’ve not been able to say out loud. I’m here in Chicago, stage 4 breast cancer with mets to lung, liver, and bones. This piece brought tears to my eyes – I am sharing it with all the people in my life who need to read it, which are many. Sending you all the good juju for your treatment, you will stay in my thoughts. xx

  19. I can relate I had stage four cancer and they say I am cured.
    I am six years in remission and I still smoke. Total mind F%#@.
    I was certain I would die so why quit was the thinking at the time.

    Life never goes back to the way it was prior to cancer.
    My doctors told me not to research on the internet and I raced home to do just that.
    Everyone had an article or story or thing you must read.
    My doctor had a weird habit of smiling when I would gag on the camera they shoved up my nose and down my throat.

    I was so certain I would die I never planned on living.
    I had basal cell cancer of the throat.
    I followed the doctors advice but the night before the surgery to remove the cancer I had this brainstorm about taking mushrooms and so I took them. I was still feeling them when I went in for surgery and was terrified.
    Inner torture of tell them versus not telling them. I chose not telling them.
    Somehow everything turned out okay.
    Except I still smoke and have no desire to work anymore.
    Everything you said is true.
    I disliked the feeling of the radioactive iodine scan to the point of it makes me cry.
    My first chemo put me in the emergency room and they thought my brain was bleeding.
    Problem was to know for sure requires a bone marrow test that I declined.
    I had to feed myself through a tube inserted into my stomach….blah blah
    take care you never know

  20. I have just been told that recent blood tests do not seem good. I know the feeling regarding well meaning people making meaningless platitudes regarding the future. It is only the individual cancer patient who knows how it feels. Up one day down the next. The worst for me is being prepared for death only to be led to believe there is hope then again being told there is none and having to go through the cycle of preparing for death again. I console myself in the fact that we are all going to die of something eventually.

    • Sorry to have sounded so morbid in my last post.

      Your article pushed a few of my buttons.

      It was very well written.

      Good luck for the future and take each day as it comes.

      Good luck.

  21. Hi Elizabeth
    I was diagnosed with base of tongue cancer on 1/12/14
    I refused chemo and radiation.
    I was diagnosed cancer free on 8/5/15 by taking natural products.
    I live in Sydney my number is [redacted] if I can help you please give me call any time.
    Kind regards
    Henry

  22. Liz,
    I only found out 2 days ago from a colleague of yours at the NLA that you are ill. I remember you from uni. After all of these years I still remember your beautiful personality. You made such a wonderful lasting impression on me. Your are a beautiful human being and I’m so sorry to hear of your ill health. You are an amazing woman that has opened you heart amd life to the world. Your message needs to be heard. You will remain in my thoughts and prayers. Sincerely, maureen

Leave a Reply

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>