leukaemia and me: a love story.
One afternoon I was pretending to work in café when it occurred to me that I bitterly missed having blood cancer. A realisation of this magnitude warrants a thorough revision of the understanding of your character. How could anyone of sound mind miss the years of physical, emotional, and social pain that accompanies the dreaded diagnosis?
I grew up in the 1990s — an era where an actor could not hope to be worthy of an Oscar without first dying of cancer on the silver screen. No story of cancer ever told did not involve the death of the patient. It became completely implausible in the minds of the public at large that anyone could expect to survive such a diagnosis. No — the role of the cancer patient is to die so as to educate the supporting cast as to how one is to “truly live” by delivering some poignant speeches set to an impeccable score. Whether scientifically founded or not, cancer became a death sentence in the minds of all, and we began to live in fear of the dreaded “C” word.
Flash forward 25 years and you find yourself living in a society that is wholly unprepared for cancer patients to actually survive. This is particularly true of the (relatively) young and innocent ingenues who could not possibly hope to live through the first draft. The fear of cancer is no longer supported by the statistics, with 1 out of 2 people being diagnosed with cancer before their 85th birthday[1], it has become an all too common an affliction. There is a 69% survival rate of 5 years across the board and fatalities have dropped by more than 24% since the 1980s[2]. The distinction for cases such as mine though, is that it seems that most of the people who will develop cancer do so in their older age. In fact, from my time spent waiting in hospital it became quite clear that having cancer can even lend itself to a healthy social life for some older patients. Notwithstanding, young people developing cancer and then dying dramatically remains a firm Hollywood trope to this day.
Young people do still die of cancer. It is as tragic and heartbreaking as the films that have preceded them. Perhaps that’s why we all pretend that everything about having cancer is horrible — we want to pay respect to those who do not survive. Imposter syndrome is rife within the community and the emotional toll is great. I was told often by nurses that I had the “good” Leukaemia and that if they had to have it then I had the one that they would want — the “it” diagnosis if you will. This robbed me of the right to feel shitty about it for a long time. I wasn’t allowed to feel bad about the significant physical trauma that I experienced over the subsequent 6 weeks that I spent in hospital trying not to die. I felt guilty for entering remission so quickly and felt myself to be “other” amongst the nearby cancer patients battling for their lives. I was not the only one who felt that they didn’t have the right to complain. At a blood cancer survivor brunch, I met a young woman who had recently been diagnosed with “chronic” leukaemia who broke down crying over her eggs because she felt that she didn’t have the right to be there amongst the “acute” crowd. The human species is truly and wonderfully bizarre.
I don’t want this tale to be read as a recommendation — this is not a review for TripAdvisor, and you should not try this at home. Living through the treatment protocol for blood cancer is traumatic in every way that something can be traumatic. You are destroyed and completely rebuilt anew. Your sense of who you are, what you are, and what you care about is irreparably altered and the business of grappling with that has been (and will continue to be) years in the making. It is only attributable to the time and space since the trauma that I am able to recognise the things about it that I am grieving.
I have often proclaimed that getting cancer was the best thing that ever happened to me. It is a sentiment that I hold onto to this day and which only seems to deepen in its sincerity. Perhaps once it was a silver lining to hang onto, but it has become a truth that rests in my (completely rebuilt) heart. In the beginning, I was grateful for the perspective that such an event gave me about how I was living my life. However, with little opportunity to put these lessons into practice, the problems began when I re-entered the realm of the living.
How I long for my cancer card. I used it to get out of all sorts of awful adult life things that we have to deal with. I didn’t have to worry about anything but staying alive and getting through the day and it was an exquisite relief. It has taught me that I am truly appalling at taking a break unless taking a break is accomplishing something. It has also taught me that I am truly amazing at pretending to chill. Even when I am doing nothing, I am doing something or feeling bad about not doing something and all of this is running around and around endlessly in my noggin’. This never ever ever turns off, no matter what I am doing. That was, until cancer came along and gave me a well-earned break from myself.
It wasn’t just the chemo fog slowing my mind down and hampering my memory, it was the social excuse and validation that it gave me to put it all down. Our social climate is bleak, unforgiving, and rife with the “should”. You should be able to do well at school and go to university and work over 60 hours a week and make a certain amount of money per year and go to the gym regularly and maintain relationships with millions of people and drink heavily on the weekends while looking amazing in your perfect contouring and brand new dress and heels and do self-care and cook from scratch and meal prep and balance your macronutrients and do your laundry in a timely manner and get married before 30 and have 2.4 children and buy property and avocado toast and basically trade in your youth and sanity for a neat box that they may even put a bow on for you if you’re good. Probably to keep you inside while you thank them for it.
I had a fully-fledged gold card subscription to the “should”. It was comforting being told what to do because making decisions for yourself is exhausting and terrifying. Armed with my cancer card I had a constant excuse from it all and it was a blessed relief. I could breathe! Well, when I wasn’t coughing up blood and mucus, and shouldering a whole bunch of trauma, but as for the social stuff — I was sweet. I had completely checked out.
When my hair grew back and I had rebuilt my muscles (so walking was no longer perilous) and I regained the ability to stay awake for an entire day (massive bragging rights), my cancer card started to lose its potency. The “should” started banging on my door wanting to collect and I had to face it down for myself. Cancel my subscription and payment source (just to be safe). It’s not as simple as that though — although no one has ever described cancelling a subscription as easy, but it’s not as simple as making one big decision. It’s many choices — big and small — made daily. It is a commitment to doing things differently without my get out of jail free card.
Living through blood cancer is really hard but living in a world that wants to box you up is harder. As much as I would love to run away into the sunset, just my cancer card and me, this love story has no happy ending (Thank f*ck — I really like being alive. Most of the time.). Life just is until it isn’t. Its entirely up to you to decide how you want to spend it — with or without the “should” — pick your poison (For the sake of clarity — NOT recommending chemo here).
[1]https://canceraustralia.gov.au/affected-cancer/what-cancer/cancer-australia-statistics, data supplied by the Australian Institute of Health and Welfare.
[2] See above
