Cancer didn’t arrive in my life with any fanfare. It slowly took hold, then steadily tightened its grip.
“And you definitely do have lymphoma,” said the doctor one day, sometime at the beginning of this year or the end of last, so seemingly innocuous that I can’t remember the exact moment or formulation. It was just the latest development in a long diagnostic process.
It began with some odd blood test results in pregnancy nine years ago. After further inconclusive tests, as I cradled my newborn daughter, a specialist declared excitedly that he had solved the riddle and predicted an auto-immune condition in the next 10 years.
I thought he was a bit eccentric and lacking in social skills. Turns out he was right.
‘Didn’t have time to think about it’
Fast forward five or so years to my posting as ABC Europe Correspondent. I was tired of people telling me how tired I looked, but I couldn’t argue with the assessment.
I woke up every day with puffy and itchy eyes, looking like I’d partied into the wee hours, but I was working hard, had two kids and was getting older. Middle-age really does suck, I thought.
But there were the ongoing problems I had swallowing some foods without feeling like I was in danger of choking and the sense that the lymph nodes under my chin were always swollen.
I began a series of tests in London, but we moved back to Australia before we got to the bottom of it.
Cancer was mentioned as a possibility at the time, as was the auto-immune condition Sjogren’s, which was eventually diagnosed in mid-2017.
Sjogren’s brings a higher risk of non-Hodgkin’s lymphoma, a cancer of the lymphatic system which begins in the white blood cells.
It took another half year and an acute incident with my spleen before lymphoma was finally confirmed.
It was around the time my Dad died and my son was starting high school. I was changing departments again, going back to shift-work.
I was busy and emotionally drained. I honestly felt like I didn’t have time to think much about it.
Wanting to sleep in the street
In what I saw as a cruel coincidence, a couch was positioned just behind where I sat at work as the nausea and fatigue really escalated. Upstairs in the edit booth was another, bigger, couch I fantasised about.
On particularly bad days I would gaze over at the meeting room, wondering if anyone would notice if I crawled under the desk and lay down for 20 minutes.
Fatigue, I discovered, is not really about sleepiness. Napping would stave off the crushing feeling of not being able to keep my head upright.
But I’d soon feel just as sluggish as I had before.
Thinking straight became a constant challenge — I imagined the thoughts were having to tunnel through a dense fog in my brain.
Exercise became almost impossible. I went from being just one of the slowest at my run club to being lapped by the slowest runner.
“Come on, you can go faster!”, one of the enthusiastic club members shouted as I trudged past.
“I really can’t”, my body screamed.
I’ve jogged regularly for more than 20 years. It’s how I mull over the day’s events, check out new cities, think of lines I should have used in my stories, get perspective on my personal life. It’s my place, and I couldn’t do it anymore.
Then I was in Brisbane a few months ago filming what I hoped would be an inspiring story about a young man with autism. It was my job to carry a bag with lighting equipment.
I was dizzy and felt close to vomiting. I just wanted to lie down in the street and rest. The scene still flashes occasionally across my mind.
It was the moment I knew I was truly broken.
‘You look weird’
Throughout this period there were all manner of tests, scans and biopsies, resulting in the final decision to move to treatment.
“You’ll definitely lose your hair”, the nurse says gently.
It’s hard to describe just how stressful losing your hair is. It’s the public manifestation of what is going on inside and it means you’re no longer in control of the message.
Showering and blow-drying become the hair equivalent of a blood bath. No matter how many hairs you sweep off the bathroom floor, more appear instantly.
“Has someone had a hair cut in here?”, my son asks one day.
I take to popping my glasses on my head when walking around to try and hide the balding patches. “You look weird”, my daughter’s friend says one day.
I decide it’s time to bite the bullet and switch to a wig.
I’ve resolved that when this moment comes I’ll put news of my cancer diagnosis on Facebook. Telling people individually has been exhausting.
Making my illness public property
Nothing prepares me for the outpouring of love and support it is met with. It’s an intense weekend emotionally, reading and responding to messages from those far and near.
Then Monday morning rolls around and I recognise with a sinking feeling that I have to move from the virtual world to the real one wearing the damn wig.
I’ve made myself and my illness public property. There is no going back.
People are invariably incredibly kind. They tell you the stories of friends who’ve made it and instinctively shield you from tales of those that did not. And that’s probably a good thing.
Last month my childhood friend in Scotland died from cancer, a fact I am still struggling to process. News about the Australian golfer Jarrod Lyle hits me hard, a father of two young girls whose career and illness I have not followed until now.
Recently, my partner shaved off a large part of what was left of my hair, making me look less mad professor, more failed punk.
It’s sort of funny, but sort of heartbreaking and I’m fighting back tears as he does it, when a news alert pops up on my phone announcing US Senator John McCain has died from a brain tumour. I dwell for too long on this news, too.
I’m close to half a century, a decent innings
There is, however, much to be grateful for.
The chance of survival with lymphoma, the sixth most commonly diagnosed cancer, is pretty good: 76 per cent at the five-year mark in Australia.
I often feel unworthy of the attention I’m now getting because I feel I’m relatively OK. I’m also the best part of 50. If this takes over, I’m close to a half century, a decent innings.
Above all, this is not happening to my children and I’ve been fortunate enough to have children before treatment messed with my fertility.
Oh, how you Google when you start chemotherapy!
Every night I’m punching words into the search engine alongside “lymphoma” or “chemo”. I take a brief hiatus after “sunken eyes” suggests this may be a sign of impending death. Once, when I’m just so sick of all the symptoms I’m experiencing that are indeed associated with lymphoma or chemotherapy, I randomly start typing some in as an experiment; “chemo itchy elbows”, or “chemo cold feet”. There’s about a 50 per cent strike rate.
Cancer isn’t a ‘battle’ for me
“It’s about the stories we tell ourselves”, a friend says one day. I think about this a lot. Mine won’t be about the woman who “beat cancer”. While the battle narrative clearly inspires a lot of people, it doesn’t quite resonate for me.
Perhaps it’s because there is no one tumour site, the cancer is spread throughout my lymphatic system. Perhaps it’s because I don’t want a fight on my hands — things are tough enough already.
It’s also because there’s a certain fatalism within me. This now is part of me and always will be. It’s not really known what causes the cancer. I’m not sure it’s backed by science, but I think this may have always been part of my make-up and now it’s unleashed its fury.
For me, it’s about balance, about living well with cancer.
I have joined the ranks of the beanied and the bruised and I’m ok with that. In a strange way I feel myself breathing easier, relaxing, when I sit down with them in the waiting room.
These, now, are my people too. The Greeks, the Chinese, Thais, Scots, we’re all here, waiting and wondering.
These drugs sure are powerful
I’ve had four rounds of chemotherapy so far. These drugs sure are powerful.
I don’t feel great in the days immediately following chemo — tired and yet wired on steroids, and queasy at the same time. But on the whole I often feel better now than I have done in years. By the end of week two of the three-weekly treatment cycle, I can occasionally forget I have cancer.
I’ve started riding my bike again and jogging. On the outside you’d see me as plodding and puffing, barely making headway. On the inside I’m flying high, soaring above the water on the bay run near my home.
When I get to the end I feel like a million dollars. I know this may be a temporary respite, but boy does it feel good.
Hope is the only important word
World Lymphoma Awareness Day falls this weekend. As a journalist, I’d normally be reluctant to mark these days. As a cancer patient I find it means something.
I’ve been informed and comforted by the accounts of many people with cancer in my late-night internet sessions. I hope some of them will find something to relate to here. I share your pain, your worry, your TIREDNESS.
There’s a quote from the surgeon and cancer specialist Chris O’Brien in the foyer of the Lifehouse building he conceived of before his death from a brain tumour in 2009. It reads:
“There is really only one important word and that word is hope.”
That seems about as good a place to start as any.
Barbara is a senior journalist with ABC News and former ABC Europe correspondent. Twitter: @abcbarbm