When Claire Simpson turned 50 in early 2020, she received a letter telling her to get a mammogram. Then the pandemic hit, and Victoria went into lockdown.
“Like many people, I put it off until we were coming out of that lockdown, but by then it was September and I couldn’t get an appointment until December,” she says.
In February 2021 she was diagnosed with breast cancer and had a mastectomy. Tests showed she was positive for the aggressive HER2 receptor, so she began 12 weeks of chemotherapy as well as a treatment called Herceptin, which she received an IV infusion of every three weeks.
Simpson says the delay in screening “really, really delayed diagnosis for me, by a good six months”.
“I can’t help but feel that [an earlier screening] could have probably saved me from having to have chemotherapy and this Herceptin infusion therapy that I’m having,” she says.
Her last Herceptin treatment was last Wednesday. She has been living in self-imposed lockdown, terrified as the Omicron wave built that she would have to isolate due to Covid and disrupt her treatment. That self-imposed isolation will continue until her final surgery, an elective operation scheduled for mid-year.
Navigating a cancer diagnosis in a pandemic requires a particular level of fortitude. Family and friends are not allowed to sit with you for hours in hospital, and two years of staggered lockdowns have interrupted travel and important get-togethers. Activities which may be low-risk for others – like going to the supermarket in a mask or attending a picnic – become high risk.
While the Omicron variant is less severe, high rates of infection in the eastern states have had a significant impact on the healthcare workforce, interrupting continuity of care and straining already overloaded systems.
Fear of contracting Covid also means many people are avoiding going to their GP or putting off essential screening, as Simpson did.
Cancer screening dropped by 10% in Victoria alone in the first year of the pandemic. In 2021, referrals to the Peter MacCallum Cancer Centre, a leading treatment and research facility in Melbourne, were down 40%.
“That is certainly going to bounce back at some point,” says Prof Sherene Loi, an oncologist and researcher at Peter MacCallum. “It is potentially going to be a real problem in a few years’ time. At the moment we have a lot of very young cancer diagnoses, a lot of breast cancer … we are just flat chat.”
Loi has so far avoided having to isolate as a close contact, but her colleagues have been less lucky.
“There’s lots of staff shortages, there’s lots of staff being furloughed because of their children coming home and giving them Covid,” she says. “When I came back from holidays, I was pretty much the only one in clinic. It’s very, very busy and crazy from a staff shortage point of view and constantly trying to replace staff.
“And the patients are definitely more anxious in this wave because there’s so much more Covid around – they’re anxious about what’s going to happen when they get Covid, and whether they will get the right treatment, and having to reorganise scans and chemo.”
Despite the “disorganisation and chaos”, Loi says, surgeries and traditional therapies like chemotherapy have continued. The impact has been on new therapies and clinical trials, particularly for people with terminal cancer.
“I don’t think anyone’s care has been compromised,” she says. “But from my point of view, doing research and clinical trials and drug development, a lot of people have probably missed out on that because we haven’t had the resources to do more innovative stuff that could make a difference.”
For most patients, Loi says, the main impact has been having to attend treatment alone.
Simpson’s mother also had breast cancer; she celebrated 10 years cancer-free just before Simpson was diagnosed. Not being able to have her support in hospital for the latter half of her chemotherapy, which coincided with the Delta lockdown, was difficult.
“It’s quite isolating to go through something like that without being able to have support people with you,” she says. “I also live alone, so I’m going home to an empty house as well.”
Another woman, who asked that her name not be used, was diagnosed with breast cancer last May and had to ask a friend to drive her up to three hours for treatment only to walk into the hospital alone. She recalls sitting alongside a teenage girl, also alone, who cried throughout the two-hour chemotherapy session. “It is uncomfortable, it is difficult, but you don’t have to look far to find people who are doing it worse,” she says.
The 58-year-old was diagnosed after a routine mammogram, then had three rounds of surgery including a mastectomy, then four rounds of chemotherapy and three weeks of radiotherapy.
Her radiotherapy coincided with the Omicron wave, with her last session on 25 January.
The weekend before she was due to finish radiotherapy, a member of her household was identified as a close contact. She had spent the week at Inala House, an accommodation service for cancer patients in Tamworth, but usually went home on the weekends.
“I didn’t want to go home and risk not being able to finish my treatment,” she says. Inala House was able to provide weekend accommodation at short notice. “It’s just one less thing that you have to worry about, if you know that you have your accommodation,” she says.
Philip Lipscombe spent most of the last two years in self-imposed lockdown, and now fears the isolation more than the virus. Christmas 2020 was the hardest. Sydney’s northern beaches, where Lipscombe lives, was locked down just before the holidays, so he had to spend it alone.
“I sat at home here and pulled a chicken to bits on my own, and that was Christmas,” he says. “And I mean, there is no point to life unless it’s got a little bit of quality.”
The 76-year-old has been living with pancreatic cancer for eight years. He was originally told he would be lucky to live a few months, after surgery to remove most of his pancreas and 18 rounds of chemotherapy. It was a long, hard battle, and left him with two lesions on the bottom of his lungs, a timebomb that will one day go off.
So when the pandemic first struck he was very careful. He avoided the shops, relying on meals on wheels and local group Golden Days to deliver essentials, and spent hours in the garden trying to pass the time.
“I don’t think there was a weed that was game enough to show its face in that period of time,” he says. “I was very lonely, though, for human contact, because the only contact I really had was by phone.”
Lipscombe now goes out two to three days a week with Easylink, a community organisation in the northern beaches which provides social outings and a medical shuttle service. On Wednesday they went for lunch at a football club, on Thursday they had a mystery picnic. He’s made friends on the buses, and the social outing is worth the risk of catching Omicron – all passengers are masked and triple-vaccinated, and most outings are outdoors.
“I am a social person – I did 30 years on a post office counter talking to people every day,” he says. “I realised that I probably will get it – hopefully only a mild version probably, but my body, I’m in hopes, will be able to cope with that.”
Lipscombe says he feels for those who have received a new diagnosis in the pandemic and are undergoing treatment without a loved one to hold their hand.
He advises anyone who has been recently diagnosed to contact the Cancer Council about joining a support group. He has attended fortnightly support group sessions for pancreatic cancer for seven years.
Calls to the Cancer Council’s support line increased in January, says Amanda Piper from Cancer Council Victoria.
“We’re fortunate that we’ve got vaccinations in place for many people, and that’s an added layer of protection,” she says.
“But people are fatigued. Cancer treatment takes a long time – people can sometimes undergo treatment for a year or more. It’s difficult to suggest that it’s that it’s worse now [than during lockdown] but it’s still hard. And people need support during this time.”
If you need help, you can phone the Cancer Council support line on 13 11 20 or Lifeline on 13 11 14
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