BE BRAVE AND FIGHT
Battle, fight and war.... the language we use and why it matters.
I wrote this in 2015 and intend to revisit the topic. References to be further explored are the work of linguist Elena Semino (watch her here) and the 1978 essay by Susan Sontag “Illness as Methaphor (read it here ).
Cancer is battle. We fight. We look for armour. In our words, in our thoughts, our actions, our treatments. We regard cancer in terms that are not too dissimilar to warfare. I crumble, I cry, I bitch, and I moan. And I don’t really give a shit…. I am not under attack from terrorist cells. This is not a space invasion. I am my own worst enemy. I just want to live.
Words have power. They can lift you up. They can drag you down. We live in a cancer context, cultivated by medical research, personal testimonies, cancer awareness, and fundraising campaigns, wrapped in ribbons all colours of the bloody rainbow. It is not just terminology like “aggressive” tumours, “malignant” types, and subtypes that shape our mind’s eye when it comes to facing cancer. We as patients contribute too. You probably don’t want to be a passive victim at the mercy of your doctors. You want a plan, a strategy, answers, and above all a cure. You want to be actively involved. When you don’t want to be a victim, you look for language that feels empowering.
When I was diagnosed with cancer in 2011 a lot of thoughts crossed my mind. I cannot say I was on an emotional roller coaster. Not in the beginning anyway. I don’t believe I was in denial about the cancer. I just had a few unrealistic expectations of the road that lay ahead, fed by a good prognosis.
I even cracked jokes, saying my cancer was a wrong delivery from the universe: It was Saddam Hussein’s testicular cancer, dropped off in the wrong place a few decades too late. Imagine the misery the world could have been spared... I fell into the “why me, why this, why now” trap of the cancer diagnosis. As if there is such a thing as the right person or the right time to get it? When I emailed a bunch of friends and family with the news, one of them replied: ‘Oh Harvey, how inconvenient.’ It made me laugh at a time when smiles were rare.
When I was fifteen my grandfather was diagnosed with lung cancer for the second time. He spent the last months of his life in bed, spitting up the remaining bits of his lungs. He had conditioned his experience and pushed his limits constantly. When I can’t do this anymore, I will quit. Every time he hit the limit, he had set for himself, he changed his mind. Because he loved us and was willing to put up with a hell of a lot more than he had ever imagined just to stick around.
As the awkward and lost teenager that I was, I would push myself to the point of puking on my daily runs. I was in full bargaining mode. If I can run faster, if I can run further, my granddad won’t die. My pounding paces and heartbeat drumming up my prayers. Please don’t die. In the end he did. While I started smoking, he overdosed on morphine. So, when cancer came knocking on my own door, I was going to find out for myself how far I would be willing to go.
It all changed when along the way a second not so optimistic diagnosis was presented. In addition to a dangerous but treatable uterine adenoid carcinoma, a rare sarcoma subtype PEComa[i] was introduced. Benign on a cellular level, but one with unprecedented wanderlust. It had travelled microscopically but extensively to my abdominal lymph nodes. From “I am going to beat this bastard” I went to “this fucker is going to kill me and there isn’t a single thing I can do about it.”
Hearing the unpredictable nature of this type of cancer explained to me, I rested my head on my oncologist’s desk and asked him to stop talking. He still had to do the internal examination and check the scars from my surgery. It was all that I could handle.
I went home to my uncle and aunt who lived near the hospital. En route, I phoned my friends to explain what I had just been told. And I asked them the same question I asked myself. What am I going to do? They didn’t know what to say. One by one they arrived. We sat around a fire in the garden, smoked, drank, and stared at each other in stunned silence.
What do you say at moments like these?
After seeing Oprah introduce a faith healer with the words “do you believe in miracles” I grabbed my laptop and sent my doctor an email, saying ‘can we skip the miracle and make a plan.’ His response was: ‘You don’t have to believe in miracles to rely on the strength of your body.’
On the Inspire forum I joined shortly after my second diagnosis I also cheer people on, thank them for their words of wisdom, their courage. I see their courage in allowing to feel everything. Be a miserable heap of tears and snot when there is bad news or just a shitty day. Be the embodiment of reckless euphoria after a good scan. And go back and forth as often as you need to. All sides deserve to be acknowledged. Rant and rave or laugh hysterically, sit quietly. Whatever you do, stay true to yourself. Only you know how you can and want to handle this. Tell people.
Communication is vital. Not just between doctors and patients, but also between all people, heart to heart. I got very lucky with Professor Verheijen, not just because of his magnificent surgical skills or exemplary bedside manner, but because he connected with me like a human being. Dealing with cancer can be a very solitary experience and the need to connect can be huge. Those who love and care for you want to be there with you as much as they can. You don’t want people to tiptoe around you, but not everything people say or don’t say helps. Sometimes it is hard to stay warm and fuzzy in the face of sheer stupidity.
As one of my friends put it: ‘We will try our best and all fail miserably in our attempts to be there for you. I accept these shortcomings. The question is, can you?’ Some friends have stayed, some have fallen by the wayside. I have shared golden blissful moments and I have drowned in unimaginable solitude. We all do what we can. It is what it is. No hard feelings. However I do believe a lot can be gained by developing a better understanding of what the cancer experience entails. It needs a more nuanced speech. Not a “united standing tall in a cancer crusade”. We are not battling a common enemy. Death is not the enemy. A lack of actual awareness is.
Language is tricky and it often fails us. As wonderful therapists like Brene Brown and Marisa Peer will point out, the words we use are pivotal in our process, whatever trauma or issue we are dealing with. When we name it wrong, we just keep adding new monkeys to are attic instead of making the old ones move on. One of the phrases coined in a now obsolete Dutch cancer campaign was “Cancer is top sport”.[ii] Well it very much isn’t. However well intended, it missed the mark clumsily and painfully. In sports you choose to compete. You train, you push yourself to the limits. When you win, you have a victory, crowned with a cup or a medal. When you lose you can sulk in the locker room, and dust yourself off. Train harder, try again. Or admit defeat and choose a different career for yourself. When it comes to cancer, it is life or death. Who loses gets to choose between a funeral and a cremation. There is simply no comparison.
In my early personal cancer awareness, I realised I had always taken offense to this perspective, even before I was diagnosed myself. Lance Armstrong was a particular pet peeve of mine. His seeming lack of gratitude or humility I found, and still find now considering the doping scandals, rather baffling. He decided to fight the cancer and he won. And yes, the heroic tales of his sportsmanship, his Livestrong foundation looked epic. But there was one inherent flaw. When you decide to win and you get to live, you are basically implying those who died are losers. They should have fought harder the way an athlete should have trained harder and performed better.
It is not that I don’t sympathise. Or that I don’t have some admiration for his achievements. I envied him in a way too. He recovered a hell of a lot quicker than I did (my cousin reassured me when I brought this up: ‘It is ok… you can win the tour the France five years from now… no pressure). I am sure he inspired many people in very positive ways, and we don’t have to throw away his legacy out with the bathwater. But it is a brittle balance between hope and luck, faith, confidence, and arrogance. And assuming that everyone will jump into fighting mode to whoop cancer’s ass as soon as it comes knocking is short-sighted and limiting.
It is difficult to do it right. It is so personal how you want to deal with your experiences, if and how you wish to talk about them. Assumptions usually make matters worse. People seem to assume that when you get cancer you will have to fight. There is no other option. I don´t know where that comes from. Is battle our only answer to a perceived helplessness in the apparent random nature of our fate? Acceptance is not the same as quiet resignation.
It is not either / or. A fight implies two opposite camps. An enemy. A winner and a loser. A hero and a villain. It is a dual terminology that serves no one. Just as much as benign and malignant mean zero. I have had a benign cancer that loves to roam and wander. The problem is that being benign it is not very impressed by radiation or chemo. So if it decides to set up camp somewhere the knife can’t reach I am screwed. Then you are better off with a malignant bugger you can blast to oblivion. But don’t underestimate the damage it does. Nobody wants their devastated bodies turned into a toxic wasteland. People are being treated for cancers caused by their previous treatments.
I did not want to be victimised and feel helpless. My feeble attempts to regain control however were mostly just funny and not very effective. When the treatment plan still included a rather gruesome regime of chemo, I had cut off all my hair in preparation. The chemo was going to strip me of it within a week anyway, so I might as well have it over and done with. Luckily my friend refused to shave it all off, and just cropped it really short. When told chemo was off the table as PEComa had crashed the party, my first response was: ‘But I already cut off my hair.’ ‘Yes, I see’, my oncologist replied. ‘But that is not a good enough reason to give you chemo that will now kill you, not save your baby maker’. The pixie hairdo turned out to be a blessing in disguise, as personal grooming wasn’t a top priority post-surgery. The practical benefits however didn’t outweigh the disillusion and the loss of my dignity. Or the loss of my fertility.
Be strong. People said. I felt weak. I had suffered through two surgeries, had been in agony from a post-surgical infection in between that nearly killed me. I was strung out on morphine and antibiotics and after about a month of 24/7 puking, I weighed almost nothing. They were threatening to tube-feed me. When one of my nurses in the hospital forced me to have a shower at ten in the evening after a particularly rough day I broke down. She just said: “Woman, if you have to walk down this path, and from where I am standing it doesn’t look like you have a choice, you might as well do it with your head held high.” She handed me the shampoo, ordered me to wash my short hair, while she changed my bed. I felt furious. But I washed my hair.
There is no dignity in dying. We all do at some point.
I got commended for staying calm, almost stoic at times. This was back when I had not had any actual surgery yet and drew my courage from false expectations. I fully intended to save my uterus and join the 95% percent who survived this. And have babies. I was going to beat it and have it all. I never allowed for a detour. My so-called courage was completely conditional. When it all went to hell, people started using terms such as brave. Inspirational. I had done a 180. Stared death in the face and was ready to let go. One of my friends even cynically suggested I could become a guru, when floored on another friend’s sofa I summed up life in fatalist acceptance: “I did my best, my whole life, but I still lost it all.” That’s the spirit!
If it is not scary it is not brave. Cancer is pretty bloody terrifying, so it takes all you have not to throw yourself out of the window or in front of a train. Which sounds ironic because you actually don’t want to die. But I also didn’t want to have to be brave. I wanted to sob and hide under the duvet. I wanted it all to magically go away. ‘The gloves are off… you and me outside… [iii] No thanks. I had no wish to fight. I was going to sit this battle out, not get involved. Like I had been handed tickets to a fight between Gandhi and Mike Tyson, changed my mind, walked out of the room, and said, ‘just let me know who won, hey?’ But you can’t walk out on your own life. You cannot walk out on your body. You cannot walk away from cancer.
I remember one instance when I was sitting outside a café in Amsterdam and one of my friends phoned to check in on me. It was a sun-soaked scene at a random street terrace, and one of my darker moments. ‘Fuck this. My whole life has felt like string of mad battles. Not a big fan of this thing called life as it is. And now I am expected to bloody fight for it?’ I didn’t want to. It seemed like a cruel joke. I really, really didn’t. All I wanted was a way out. Instead, I found a way through.
I started a collection of painkillers and sleeping meds in the small drawer of my bedside table. Nobody ever checked. When I was sent home from the hospital, still lugging around a pee bag on my leg attached to a supra pub catheter, I was pretty much ready to call it quits. Night after night I would lie in bed crying, thinking about where and when to kill myself. I wanted it all to stop. The insecurity of what was ahead. No faith in the future. Not able to accept what had happened, deal with what I had lost. It was a desperate time. I had feverish debates with my dad, who didn’t believe I didn’t want to go on. He had seen me get fired up discussing my scenario with the doctors, acting as an unrelenting advocate for my cause. Asking all the questions, voicing all my fears, my anger.
He had seen me through the worst of it and wasn’t ready to give up on me. He understood I needed to say it, I even needed to consider suicide, in order to find my way. Denying my despair only fed it. Letting it run over me like a tsunami, is what eventually turned the tide for me. When I allowed myself the space to be so incredibly pissed off with life, with fate, with God or who and whatever, I found the space to move towards acceptance. And I started to change my thinking. What if I just waited it out? No pressure, no expectations. Just moment to moment, breath to breath.
The law of energy means where you channel it, it grows. If you believe that anger and rage will stagnate your recovery, make your cancer worse, or cause a recurrence you will come to fear your rage. If rage is a release, it might ease the pressure by venting it. If fear paralyses you to the point there is little point in living, you don’t need to end it. You need to face your fear. And fear can turn into clarity and overwhelming awareness. You take nothing for granted, when you are teetering on the edge.
A lot depends on perspective. When does living with cancer become dying from cancer, or is there no tipping point? Taking responsibility for your own health, by doing your research, looking after yourself is lovely and pro-active. But it doesn’t mean it is your fault if in the end it might not be enough to get you to live longer. It might help you live better though, while you are still here. But then maybe ignoring it and just get on with it until you drop may also work for you. The same way I don’t know if smoking a cigarette after cancer is incredibly cynical or very life affirming…
Some cancers are known to be caused by toxins, so many others are a mystery. How random is it? What does it say about the state of the world, our general wellbeing or our personal spiritual quests? When you get two of them at the same time, is that bad luck or really bad karma? My oncologist was so taken aback by having to tell me I had two cancers he said: “the chances of you winning the national lottery, are considerably higher.” So I now play the lottery too.
Cancer seems to have acquired a different status from other life threatening conditions, which like the general media representation of terrorism involves a lot of fear mongering. Cancer causes severe anxiety and some say the fear it instils is disproportionate. But then there are also voices saying caution is needed in our optimism of beating cancer once and for all in the near future. We have a long rocky road ahead of us. So it is hard to distinguish between a realistic fear of an actual threat and needless anxiety for something that may never happen. They require different tactics.
I talked with a friend who had a bad heart attack, but who had been told his health was back to normal now. He had no fear of it happening again. Cancer feels like an alien invasion. Your body betrays you, you feel let down and disappointed. You have a relationship of distrust. And with a high rate of recurrence it is very hard to rebuild that trust.
I was handed this book early on after surgery, called Ally, the autobiography of an immune cell.[iv] It paints a lovely picture of an exhausted little white blood cell that is trying to activate all the vital organs to do their job. They are all too battered and bruised and none of them join in. Instead of giving in to defeat and despair, the little cell decides to just do the best he can. He gets rid of as many cancerous cells he can manage and ends up inspiring the rest of the system to get to work too.
There is a very perky young Christian preacher who turned the word brave into short code for Breathe, Remember, Ask, Visualise and Elevate[v]. I started visualising giant greedy gluttonous white blood cells devouring cancer cells. Their insatiable, incessant cancer snacking to an imagined soundtrack of pops and burps cracked me up. Of course I will never know for sure if it did anything else for me, but it made me giggle. Laughing helped me breathe. It made it lighter for me. More bearable.
One of my friends made a beautiful statement, saying: ‘Your body has the same rights and obligations as anyone else’s. You have had the scans and the biopsies. There is no cancer in your body. The first debt you owe life is to be healthy. So live healthy. Body, mind and soul. I want to believe this and largely live by it. I meditate to Deepak Chopra, attend weekly yoga classes at the local cancer walk in centre and pay a fortune for supplements. I pray. I try to rebuild my body and my life and accept that however anarchist, those tiny little lethal buggers they had to cut out, were mine. It were elements of my system that lost the plot. My uterus that went ape shit and created not one but two cancers.
I felt somehow disappointed in myself when cancer came knocking. I thought I had worked stuff through on all levels, in therapy, exercise, diet. But at a closer inspection that wasn’t true. I was stuck in “trying too hard and doing my best” my whole life. Putting immense pressure on myself in all facets of life. Which didn’t lead to a balanced outlook or healthy lifestyle. I was mostly stressed, depressed and spreading myself incredibly thin. Only to then resort to binge health crazes to counteract this, hoping for a revolution.
But I never got to the root. Cancer does offer you a rather cruel magnifying glass to take a closer look at yourself. I am happier with myself now than I have ever been before, and some very “brave” people around me have said they also prefer me now. I have dealt with some issues and still have a list to tackle, and I hope I have the time to do so. That I can keep my cells happy and healthy from now on. And vice versa.
I am still on the fence when it comes to the power of positive thinking, prayer or organic protein, as I haven’t worked out yet why two-year-olds die from leukemia and babies are born with untreatable brain tumours. And until I figure it out, I will walk the line of gratitude, compassion, and a rather basic bewildering awe of life in general. And of my battered body, which after three years still surprises me by improving and gaining strength. The resilience is as mystifying as the vulnerability. Because people around me have died from cancer and are still dying. It wasn’t because they didn’t fight hard enough. And it absolutely sucks that they are gone. There was a time where I believed they would say goodbye to me first, not the other way around. So far I have survived against the odds, and all I want to say is thank you. You may be able to cheat your way to a tour victory, but you can’t cheat your way out of cancer.
It has been said that a human being can bear almost anything as long as there is some kind of promise of perspective. Faith and hope come in when you have to grin and bear it when there is none. The way we talk about things is largely fuelled by what we believe or want to believe. Will fighting help us discover the causes of cancer faster and better? Will it help find a cure, today, tomorrow? Or does it just take the sting out of an awkward conversation? Cancer is not just the individual experience, it is the collective consciousness of what we “rightfully expect”. The suspension of disbelief that is fed to extend that if we postpone death long enough, it may eventually be cancelled all together? Well guess what. If cancer doesn’t kill me, something else will. And in the meantime I fully intend to live.
In September 2013 I participated in a joint exhibition on cancer with a group of artists. I summed up my cancer culture issues in three T shirts (amongst other slightly more subtle works) where I stitched the words “Tumour Humour”, “I heart Cancer”, and “Cancer Whore” in a textile pathology print. The last one needs some explaining for the non-Dutch folk. In the Netherlands we have the pleasant habit of using horrible diseases such as typhoid, cholera, and cancer as random swear words. About a week after I was diagnosed, I had dinner with friends in an Italian restaurant in Amsterdam. I decided to walk home and encountered a group of bored boys, who tried to grab my attention. I ignored them, as I was talking with my dad on the phone. When they started yelling at me “cancer whore”, I just froze. It still gets me when I hear someone say it or I come across it spray painted on a wall somewhere. At the exhibition I owned it, dressing up as Cancer Barbie, in a dress I designed covered in Pink Ribbons (breast cancer) and Black Moustaches (prostate cancer) handing out pink sugar glazed cookies.
We need metaphors to explain and understand and metaphors hold more drama. Cancer does tend to change life quite dramatically. Or end it tragically. Applying the language of actual warfare as is our daily experience on a global scale, is that useful? I still don’t believe in fighting. Just don’t give up. There is a difference. Just as I believe that violence stems from a lack of love, I believe my body will respond best to being nurtured, not attacked. And I don’t need people to stand up with me against cancer. I don’t need you to be my battle buddy. I also don’t need you to donate cash to medical research on my behalf. (PEComa is too rare. There are about three of us, well a few more, and unfortunately still counting. The best chance we currently have is a single sarcoma scientist who I hope will make it his life mission to fix it[vi].) Invest in my life. Live it alongside me.
When I asked one of my friends if he would be with me when I die, he joked: ‘On one condition…. We go on holiday first.’ We did end up in Sicily together and as yet I haven’t died, so we will have to see if he holds up his end of the bargain when the time comes. But it did show me, after having him clear up my puke and sleeping next to me in a hospital room so I wasn’t alone; friendship, life, cancer… you have to take it all as it comes and take it unconditionally.
When people ask me if I am ok I tend to get lost in a long ramble, explaining the finer details of my particular brand of cancer, the rarity and rate of recurrence. When all I really want to say is: “Yes, I am doing great thanks.” I remember the first time I said I had cancer instead of have. Because after a string of clear scans and a bad biopsy scare, I still feel I am tempting fate by using past tense pre-emptively. But I am doing great. Even on the days I feel like shit. Because I am alive.
[i] http://omicsonline.org/searchresult.php?keyword=%20PEComa
[ii] http://www.thepostonline.nl/2011/06/02/kanker-is-topsport/
[iii] http://raceforlife.cancerresearchuk.org/index.html
[iv] http://henkfransen.nl/boeken/
[v] http://elevationchurch.org/sermons/how-to-be-brave
[vi] http://jco.ascopubs.org/content/28/5/835.short?rss=1
This essay was written, based on my own experiences and inspired by
http://www.bbc.co.uk/programmes/p01lf8vh
http://www.volkskrant.nl/leven/kanker-en-de-terreur-van-het-positieve-denken~a3072353/
http://www.edgehill.ac.uk/psychology/2014/11/06/metaphors-wrong-way-talk-cancer/