2012-07-23_1343069179

The original version of this post was published three years ago on an old blog and I’ve expanded it a little. It’s now 12 years later and I’m still healthy and er, here.  If I’m ever tempted to wallow in January blues, I think of this same month in 2003 and am grateful I’m not back there. Happy new year.

Today as I drove my daughter to crèche, I found myself driving behind a hearse. It was carrying not one, but two coffins, a doubly sobering symbol of the end of life. One box looked bigger, bulkier, and together I wondered if this was a couple, or a family. Perhaps there was some comfort in lying side-by-side, wooden coffins like parallel sleepers on the road to who knows where. Hearses always rattle my nerves. Something about their respectable low-engine hum and black sleekness ping my sense of mortality. Five minutes later, clutching my daughter’s hand and pushing ourselves into the slanting wind, I heard a funeral bell tolling. Not one coffin, but two. One funereal reminder, and then another. There is mirroring and doubles in many ghost stories, and what could have been mine started on the very same date of January 5th.

Nine years ago, before I ever imagined I would battle a windswept Wednesday holding the pale pink hand of my little girl, something nearly took it all away. The day started with an ambulance visit and a pain in my lung that required no-fingers-on-buzzers (“Correct! That DVT in your leg HAS traveled into your lung! Bonus point if you can spell “pulmonary embolism” Ding!). Eight hours later came the diagnosis from a blonde, empathetic haemotologist who was about my own age. A sentence that begins “Well it’s not good news…” never pulls itself out of its negative tailspin. Blasts. Irregularity. Leukemia. The only person I had ever known who had had it, was treated in Jervis Street, when it was a crumbling hospital and not the consumerist shrine it is today. My father had been taken there with a ruptured ulcer when my mother was pregnant with me. Only for the fact that he worked on Gardiner Street, and the hospital was nearby, he’d have died. Fate and death are combative adversaries in my family, circling and eyeing each other up.

I was moved to what I know is a cancer ward. There was a bed shortage, and I had to share a room with a man in his 30s. He was kind, respectful of space, and I had yet to realise what the green cover on his swaying bag of drip fluid meant (spoiler: chemo). Having to tell other people was worse than any of it, that day. My parents’ arrival on the hospital ward was imminent. Fearing my mother’s reaction, I bottled it and asked a nurse to tell them the news. In the end, my husband did, at a meeting where the doctors put my survival rate at 15-20%. When my parents had been given tea, biscuits and crumpled tissues, the same nurse brought them in to see me. This was one of those rare and genuine blackout moments. One where your brain presumably finds the experience so traumatic that it shuts everything down. A bit like Alec Guinness successfully turning off the Tractor Beam in Star Wars (a device which could forcibly capture enemies, hey look, another cancer metaphor!). I didn’t remember what happened, until my mother told me months, or possibly years later, but she insists on this version. There was a curtain – peach, jade, pastel-patterned as they always are. When her tear-stained face appeared around this curtain, I piped up with forced cheeriness: “I’m not going to die, I’m going to write a book!” I have no idea where those words come from. Or where any of the words or thoughts or feelings that crowded my head did in those first few days. I do remember calling my brother 11,000 miles away and listening to him sob down the phone.

There was a lung clot, a leg clot and the leukemia. The weeks that followed brought viral pneumonia, loss of vision, jaundice, no appetite, not being allowed to eat anything fresh in case of infection, confinement in a room that had an antechamber for people to wash their hands and don masks before they came in to see me. There was a 24-hour morphine line into my stomach to stop the chest pain so that I would breath properly and my lungs wouldn’t collapse. It made me veer between shamen-esque visionary who had solved the meaning of life (my dad said that one night, I raved and philosophised wildly, and had it all figured out), to weeping lunatic. Sleep was broken by the clicks and beeps of various whirring machines, and drip changes, and constant blood tests on veins that started to fail me. I rose several times a night for ablutions that required peeing into the cardboard equivalent of a measuring jug to make sure all the chemotherapy was being flushed out. The three-line Hickman tube in my chest was a necessary open wound that made me feel – and look – like the Borg. Yes, another sci-fi reference, but illness is another planet. A galaxy that makes you feel far, far away. I had abdicated my “dual citizenship” of the kingdom of the well and the kingdom of the sick that Susan Sontag wrote about.

My book loving side took note of all the new words. Obs. Methotrexate, Hickman. “Peripheral” blood cells. Mercaptopurine. INR. ATRA. Coag. Cultures (plural). A phlebotomist would fill four or five vials (called vacuettes) with my blood. NB: If I ever form a Phil Spector-style girl group, I’m calling them “The Vacuettes”. It was both a good and bad thing that this was a time before smartphones and 100% connectivity. Whenever I was allowed home from hospital, I would google occasionally, and discover most people died from this strain of leukemia by bleeding on the brain. I stopped googling.

The treatment – what else is there to say? – was utterly grim and relentless. Six months of intensive chemo followed, most of this spent in hospital. I was told that I would be given a “revolutionary” drug called ATRA, whose components included Vitamin A and arsenic. It was created by in a Chinese scientist, who I searched for online and nearly emailed once. The cosmetic side effects were fine. My teen years involved several shaved head episodes, but now my expensive highlights were tumbling out slowly, so I took the razor to them. After the first night, where I vomited every time the nurse gave me IV bags of blood or platelets, there had to be resolve. Some parts were worse than the treatment: eyesight problems that made reading impossible; the long days on an isolation ward; the ability to eat only crackers and cheese; my brother in Australia phoning all the time, heartbroken and feeling remote. Kraftwerk announced a tour and played Australia first. He held up his phone at a gig thousands of kilometres away so that I could hear and it was a rare moment of joy.

Remission – that wonderful green light – kicked in reasonably quickly, followed by two years of obligatory maintenance treatment. Finally, in October 2005, I was free of all drugs. One year later, I was pregnant with my son. My daughter followed 16-and-a-half months after his birth and I know I am beyond lucky. Every January 5th makes me feel that even more. Today is also the anniversary of my grandfather’s death. A kind, funny man who had been an army chef, he used to tell me that if anyone saw my grandmother’s ghost, it would be me (I did, but that’s another story). But death to him wasn’t frightening, nor were people who were no longer with us. He would mysteriously say: “You should be more afraid of the living than of the dead”. And he’s right. It’s the living – usually our finicky, griping selves – who stop us from stepping up, from taking chances, from doing whatever it is we really want to do. It’s been nine years, and I am well and happy. I still have to make good on that promise I made my mother to write a book. But words – those elusive, arbitrary jumbles of syntax – got me through that day, and the next day, and illness, like life, is putting one step, or word, in front of the other and moving forward.

 

 

 

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