3 Nov, 08 | by BMJ Group
I have just returned from a 40-year “anniversary” with my father, who adopted me, sort of, at two. A long time ago. When Morris Minors still bootled about with wooden interiors; Chuppa Chups had not yet been invented; and the moon was still unmarked by human boots. Martin Luther King, however, was dead.
We flew to Alice Springs, in the middle of Australia (more or less) and stayed with my cousins for a couple of nights, before traveling “out bush” to camp beneath the stars on big canvas swags: huge canvas bags into which you stuff a foam mattress and bedding. They roll into enormous rolls which no swaggie of yesteryear could possibly have lugged from town to town. (Their swags were much meaner, usually consisting of a rolled up blanket or piece of canvas.) Thank heavens for utility vehicles ie open-backed trucks (‘utes’ in Aus- speak) which comfortably transports your tucker (food) box, swags, and, in my case, an enormous suitcase that looked decidedly un-bush-like, belonging more to a European hotel.
The suitcase was enormous partly because I brought every bit of thermal gear I have, as the desert is notorious for reaching 40+ degree C during the day and plummeting to freezing point at night. I still haven’t figured out why the ground doesn’t hold the heat better after the sun goes down. As it turned out, Dad had brought all HIS enormous thermals for me, and in any case most nights were mild.
The other reason is that I was lugging every bit of possible photography and camera equipment, as I’ve just found out that a friend of mine (who is, thank heavens, an experienced film maker) has won a grant to make a documentary about my living with advanced cancer. So I wanted to get footage of what it’s like camping with bags of medicine, bandages, and creams (for inflamed hands and feet), and, of course, books, the most therapeutic element.
Only problem is that I’ve never before handled a camera. So the first few tapes were full of camera shake and pictures of the inside of my backpack (when I left the camera on for the 10th time). I (or, I think, Dad, but he wouldn’t fess up) erased some footage, and my voice sounded like a cracked crow’s. Despite all that I think I managed to get a bit of OK footage, but I have a long way to go before I reach my friend’s proficiency.
The complicating factor, of course, was cancer, grrrrrrrr. I coughed every time I turned over; crawled from my little fly tent (extremely effective at protecting you from the swarms of flies – and wild bees – that we encountered everywhere we went) or moved in any other way, no matter how lightly. I was then assailed with a weird kind of arthralgia that left me almost crippled for a couple of days. Poor Dad had to transfer me from truck to mattress to chair and back again. Happily, in true Aussie fashion, at 63 he is a tall, muscle-bound man after 10 months of renovations to the house and lugging stones from various quarries to build walls and pavements in the back yard. As a student in the 60s, to earn money he helped build the Australian National University and is still proud of his mason’s skills. (He was not, however, impressed with a flock of birds with mulberry diarrhoea who alighted and relieved themselves right along the total length of his newly laid limestone paving before it was sealed.)
So, in short, lugging me about was no big deal. For him. But for me it was the ultimate in invalid status. In a large Desert Park we quickly realised that a wheelchair BUGGY was going to enable us to see the park before it closed. Otherwise we’d pretty much have to stick around the entrance, as my hips and legs had completely frozen up. It was both fun (those things are great and mildly hazardous in the wrong hands, though super slow on hills). And, of course, totally humiliating. Visitors to the park kept not-very-discreetly peering at me over their sun glasses. In true Miss Marples style I did my best to ignore them and speed past in my rather elegant scarf and hat that my aunt gave me (actually her children did; she doesn’t yet know that the hat has been recycled to me). This tactic was fine until I nearly bowled over an elderly Japanese man and missed the main pole holding up an aviary by 0.001 cm. Fortunately no damage except to my already dented ego.
We returned to Sydney to the joys of more chemo. Today was D-day. I finally got a port-catheter inserted under my clavicle, marking me as a chemo veteran. And I started again on docetaxol, an infused form of chemotherapy. My lungs have just gone awol, with nodes and fluid everywhere (am not surprised given cough). Liver is better, but not perfect and, once again, the cancer markers are going in the wrong direction.
What is this? Why are so many parts of my anatomy perfectly capable of recognising the cancer (kidneys, pancreas, spleen, etc), while others haven’t got a clue? I thought my body was one big holistic, integrated organism. Yet this represents failure of sharing of information, in my view. Liver, head, chest, skin (I have one subcutaneous lump on my right shoulder), bones, get with the programme! What is this?
This is the first time I’ve really welcomed the chemo as something I need and want. I need time to heal. And to date, chemo has given me that time. I’m very grateful to everyone involved, including the yew tree, from whose berries at least some of taxols’ potency derive.
Time to sleep. Hope the GsF kicks in and I don’t wake up with a lizard’s tongue.