Mum was doing well then: alert, feeling okay, in good spirits. We regarded her stay as a private-health-funded hotel room while B and I prepared our new home for Mum to join us. I was organising Karuna, a Buddhist hospice service that provided outreach to the north side of Brisbane, to assist us in caring for Mum there in our home. I was also organising the transport of her possessions from her house in Lismore, which we’d sold.
The drive between Brisbane and John Flynn was about an hour and a half one way. Mum was relaxed with the professional nurses and doctors in a way she couldn’t be with me as her carer. The meals, though not brilliant, were delivered routinely. At the end institutionalisation wasn’t such a negative for a woman who had more important things to worry about, like living within a dying body without being in extremis. My mother could ‘relax’ knowing she was medically contained. When I was caring for her full time, she’d have to remind me if I’d missed one of her pain medications through exhaustion, as there was no one else overseeing the schedule.
My own treatment was also made easier by the help I received from others. My fourth chemo session went smoothly and I handled the post-chemo body meltdown well. I wished that this would be the case for my remaining chemo regimen, but it wasn’t.
My fifth chemo session was hell. Everything seemed to go awry. Good friends, Sara and Ian, from over the border in Mullumbimby, were with us to care for Celso, so B could care for me. They were classical musicians, book and language lovers with a compassion for others not found in many people. They had formed friendships with Iranian and Afghan refugees, and they’d visited their friends’ families in Iran and provided financial assistance to mothers left behind in Afghanistan.
They were with us for the four days. They did the night shift with Celso so B and I could rest. But come Sunday, things weren’t looking so good for Celso. He was red-faced with a fever, he had diarrhoea and did a lot of vomiting, and he was floppy. The locum was concerned about swine flu (again), which was still running its course through Queensland, alongside another animal virus, the deadly Hendra virus.
Both my son and I were put on Tamiflu antibiotics, which were nasty for the stomach, until we could get checked by our GP. B didn’t get the Tamiflu, though he was quickly sick too. By the time the virus really kicked in we were up like ghouls bumping around the house throughout the entire night. B was in the toilet with the flu or whatever it was, bent over. I tried to help him by getting some water, so I tiptoed into the kitchen to get a glass, past Sara asleep on her made-up bed on the dining room floor. I fumbled around in the cupboard and smashed a champagne glass.
Sara was up.
Then Ian was up, changing my son’s diarrhoea nappies. Celso was up too. He had a fever, was projectile vomiting like his father – and crotchety. When Celso got tired or wasn’t happy he rubbed at his eyes and at the tape on his face, which held his tube in. His scratching led to him pulling part of his tube out. After this occurred, all adults were up trying to settle Celso, putting his tube back down, and fixing his tape to his skin. Ian and Sara had to supervise both my partner’s and son’s health and check they weren’t getting worse. Later on when our friends returned home they too got a dose of the norovirus.
Come the following Tuesday our son was hospitalised for two days at the Royal Children’s Hospital. I couldn’t go near him because of my low immunity, though I had the G-CSF injections on board forcing my bones to generate more white blood cells. B was exhausted and close to collapse. We had nannies, paid for by the Mater’s Chicks in Pink, stay overnight with him at the hospital so B could get some sleep. Our son was put on electrolytes and made a quick recovery.
But even those dark days passed. One morning the week after, I heard B call to me from the dining room. Can you get a bib? I’m trying to tempt Celso with some yoghurt.
I was bent over putting on pyjama bottoms in our bedroom. I grabbed a pin-bib and hobbled out. Leant over B and tried to fit it around his neck. B gave me an Is this a joke? look.
The bib reached his ears. Oops, you’re not Celso. I turned around and fitted Celso with it instead. He beamed up at me and gurgled. Even through his physical difficulties Celso was such a sweet little boy.
He didn’t appear to notice his mother no longer had hair or wore blue cotton beanies. He’d walk over to yellow ducks I’d lined up on the coffee table and swat them off – laughing open-mouthed with delight. He knew how to do joy: staring out at the world around him with fingers outstretched to touch something new – sucking into his world the day’s rays and all its looming oddities.
Various doctors from psychiatrists to oncologists have talked about how cancer patients find the end of chemotherapy treatment the hardest part of it. When the cancer-kicking drugs are over, you are faced with life post-treatment and a new horizon with questions: Will my cancer return? Am I cured? Am I safe?
No one can answer these. The only comfort of chemotherapy is that you’re protected from carcinoma attacking your body, with a Molotov cocktail of drugs ready to smite any raised malignant head. There is security in chemotherapy.
The day after I finished my treatment I lay on my bed at home and took in the room’s dimensions: three metres by four. The blind’s
