I have never been a writer so I have taken a huge leap in writing about this journey. I don’t know what my story will say. I’d like it to depict some triumph over adversity, some courage in the face of the unknown, some optimism, some hope, some inspiring moments, and an awesome conclusion. People like to read about these qualities as they sell really well. In our house, we have all of Lance Armstrong’s books on our bookshelf, (obviously bought at full price, before he admitted to cheating) as well as many other inspirational authors from sporting circles. Unfortunately in my stories future, there might be some fear, some chaos, some anger, (although I’m not sure where it will be directed), and very likely quite a few periods of negativity. I won’t apologise when that happens. I am kind of lucky that I am not writing this blog to sell something as I know that people don’t like reading about the doom and gloom of things.
Okay, now that is out of the way, I have been mulling over some thoughts for a few weeks now. While in hospital, I started thinking about George W. Bush and the “War” rhetoric his party utilised to justify the War on Iraq; the talking up of the enemy, the existence of invisible nuclear weapons, the need to seek and destroy the evil Hussein, the necessary war on ‘terror’, and the urgent need to rally the troops and strike. This war rhetoric, swayed a lot of people.
Likewise, in Australia the rhetoric of “fear” was used by Prime Minister John Howard in his attempt to change Australian policy on refugee boat people and immigration laws. I wasn’t fooled by the rhetoric in either of these circumstances. I have spent many years studying the language we use against our misunderstood natural environments, where war and adversarial rhetoric is often used at times when Mother Nature unleashes her destructive forces. It helps to make sense of loss of life and destruction brought on by events such as tsunamis or bushfires. But I HAVE been fooled by the rhetoric of cancer. Until now.
It is pretty obvious that society’s attitude toward cancer is one of “fear” and “dread”. Cancer is thought of as an evil, hostile, invincible and formidable predator. The language of war is very dominant in cancer discourse and has been written about many times before by academics. It surrounds the way people write and talk about cancer as a society and in the private conversations in hospital rooms. I have been hearing lots of very well meaning statements, such as “You will beat this, you will conquer it, you will win this battle, you will overcome it, you will kick cancer’s arse, you will fight the good fight, if anyone can fight this and win it is you, you will slay this monster, be brave, stay strong” and so on. Words such as adversary, conquer, combat, fight, battle, beast, hideous, insidious, have been commonly used by people around me. To many people, cancer is understood in those terms.
The stigma of cancer as a disease is incredibly powerful. It is a life threatening disease and many of us have grieved over someone living with it and the loss of someone to it. But interestingly, we don’t seem to approach other diseases in this same light. For example, we don’t relate to someone who has had a heart attack with the same intensity of hatred or threat that cancer conjures up. The Australian Heart Foundation says that heart disease accounted for 15 percent of all deaths in Australia in 2010. Heart disease is hiding inside many of us. Then there is the rising threat of diabetes. My point is that people suffer from diseases all the time, and yet we don’t seek to conquer or destroy and eradicate them with the same fervour as we do with cancer. I feel this is more about the measure of human suffering than anything else. No-one likes to witness suffering.
People also lose their life in an instant or have their life irreversibly changed from events like a car crash. The ramifications of such loss extends for generations. I still wonder what my Grandfather would have been like as a person. He was killed by unlicensed, underaged and drunk teenagers before I was born. The crash inflicted life impacting injuries on my Dad who was thrown from the front passenger seat but thankfully survived. The loss and grief from Grandad’s death inflicted intergenerational economic and mental-health impacts on our family. These events happen all the time to families. But we don’t walk around viewing cars as sinister, deadly and fearsome predators, we manage the risks and we continue to get behind the wheel. Imagine if we began a campaign to promote this “war” or “fear” rhetoric for car use. Car usage would decline. People would start catching public transport or riding their bikes. Roads would be less congested. Governments might invest more seriously in public transport. Car manufacturers would go bust, car prices would plummet. The environment might benefit. Hmmm, now there is a thought! Rhetoric is very powerful when it goes unchallenged.
Before I had cancer, I understood the disease in terms of an enemy-type relationship or metaphor. I hoped I would never encounter it intimately. It repulsed me. I was hoping to avoid it. When I thought about cancer there was a little increase in my heart rate. The pit of my stomach sank a little deeper. It was a scary, feared, horrible thing. But it was rarely part of my dialogue. I liked to not give cancer too much thought.
Until very recently, I had been free of having anyone in my immediate family go through it. There was the wonderful, active, healthy, positive mum of my friend from primary school who used to take us to tennis in her green Mercedes Benz and cooked an amazing birthday chocolate cake. To this day I carry guilt for my response to her cancer, because I never understood what losing someone to cancer meant and I never expressed how sorry I was for her loss. I was too young and naive to stop and think about it. There was also the beautiful girl with the blonde hair in my year nine art class who passed away in the year after we all graduated. But I selfishly, never let it be part of my dialogue and thoughts. Until four years ago with my Dad, the many diagnoses I have learnt of since, and of course my journey with it now. Perhaps I just grew up?
Since my diagnosis, I have experienced this “dread”. I even created my own fictional ‘Dread Dragon’ character in my head to help me deal with it. My diagnosis was a moment of profound fear of uncertainty. I stopped living for a few weeks until I got a grip on it. This common flight or fight response to cancer equated to the war experiences of soldiers on a battlefield, pumped full of adrenaline. It is used all the time, except this time, there is me at the centre of ground zero or in the trenches, and the cancer is the invader of my body. The treatment will be to search for it, locate it, destroy it and eradicate it. This use of the war metaphor for people with cancer serves as an good motivator for many. Preparing people for the “battle” ahead.
However, I don’t believe the war metaphor should be accepted as the only way to make sense of cancer. Describing cancer as a battle to be overcome just doesn’t resonate with me, it doesn’t motivate me at all. I am not being enlisted in a war. My body created the cancer inside me which is fed by my hormones, so why would I enlist a battle against myself? My body isn’t a battlefield, it has been doing a good job of hiding the cancer. My bloodwork is normal. I had no symptoms apart from finding a lump.
Don’t be alarmed by reading of my of lack of desire to be at ‘war’ and ‘fight’. It doesn’t mean I won’t do everything I can to get well. But when I don’t identify with the language used by people around me, or in literature and media, it momentarily makes me feel a bit of a failure. A bit negative. Almost like I have given up and am willing it to take over me. Essentially it restricts how I can think about it and express MY experience. If this is how I feel then perhaps many others have also felt this way? Men and women who get cancer, might not identify so strongly with this cancer-war metaphor either and they might not be able to express themselves, they might feel defeated by it, by cancer. Anything which restricts ones ability to articulate what they think or feel is a bad thing in my books.
So, how can anyone with metastatic cancer read Lance Armstrong’s story of conquering the disease and feel anything but hopeless and demoralised? Do those who live ‘fight’ harder than those who have died. Did my Dad not ‘fight’ hard enough? Of course he did! It’s just that this war metaphor set him up to fail because he believed that he “failed” his body, he was defeated the moment cancer stuck up its finger at the chemotherapy and radiotherapy and the terrible surgeries he had to endure. In his mind, I am sure he felt betrayed, by the treatments and the doctors because none of it had worked. Everything he went through was in vain.
There is no rhyme nor reason to who survives cancer. Surviving it doesn’t make you ‘better’ than those who don’t. I believe it is a matter of luck. And yet, everywhere messages persist which tell people with cancer to keep fighting, be positive, be brave, be strong, like they have total control over the outcome. Like members of an army, they are expected to fight, be strong if not for themselves, at least for their country or loved ones. But how demoralising must it be to be losing a battle you don’t have a lot of control over?
The breast cancer forums I read daily, are full of wonderful women. None who chose this disease. Every week, there is a RIP message for someone who has died or ‘lost their battle to cancer”. I also did not ask for breast cancer. I would have preferred some other means for gaining a greater sense of spiritual growth, and to be fair, I was already on the path to this before this landed in January. It would have been great if my first blog was on the crazy role of parenting or something. But here it is. A blog about CANCER!
I am not going to “fight” cancer. I have spent enough of my life fighting and stressing over things and being on the defensive. It is time I relaxed a bit, breathed deeply and visualized colour and light taking over the darkness. Making it shrink as the shadows do, as the sun rises to midday.
If we strip cancer back of all this emotion what is it? As a noun, it is simply “a disease caused by an uncontrolled division of abnormal cells in a part of the body”, or “a malignant growth or tumor resulting from such a division of cells.” I find it much easier to think of cancer on these terms. There is no emotion here. It is what it is.
Tonight, I have vented enough about the dominant cancer rhetoric. To that I say, rhetoric, schmetoric ha ha! So here are some alternative metaphors for describing and understanding what the cancer experience might look like…
As a journey
The metaphor of a journey is one of the easiest for me to get my head around, moving though experiences. Starting, travelling somewhere, growing, progressing, getting richer from the experience, reflecting on where I have been and where I am going. Thinking about where it might be taking me. This journey metaphor provides quite a good framework for thinking about my cancer experience. People might ask me things like “Hows your journey going? Rather than making battle statements.
As a roller coaster
I have often used the roller coaster metaphor throughout the ups and downs of my life, where life climbs and ascends sometimes at rapid pace, full of joy and despair, full or shocks and surprises. But high and lows are frequent. Spontaneous rolls and twists, leaving the stomach behind on the last bend. Fits of screams sometimes laughter sometimes terror.
As a running race
You would think that being a runner, I would identify with language around this but it doesn’t really fit either. Warming up, pacing myself, winding up my competitors, reeling them in, victoriously crossing the finish line and winning! This doesn’t motivate me either and this is amazing because I have been told a zillion times over throughout my life that I am highly competitive.
As an artist’s colour palette
For myself, an alternate view might be to think of the cancer in colour terms, like the colours of an artists palette. I often think of cancer in terms of colour. To me, cancer is black. It is the darkest colour on a colour palette next to an artists easel. It is wanting to rid my body of blackness. So this experience will be about bringing colour into my life. Blackness also symbolises a dark emotional place for me (unlike the colour blue which is symbolic of blue moods and is often associated with depression). My goal throughout this cancer experience is to focus on brightness and lightness. A little abstract, but this is how I see it.
I am interested to hear about other ideas for metaphors to describe and understand the cancer experience. At this early stage, I am not sure about the metaphors I will identify most strongly with. But what is already clear to me, is that you won’t see my name on the conscription list any time soon.