Cathy Clark remembers the day her son, Josh, was diagnosed with cancer for the third time.
They had been in and out of treatment for the past five years. Josh was first diagnosed in 2013, when his doctor sent him for an x-ray following a suspected chest infection. It was thymoma, a rare type of cancer affecting the thymus, an organ in the lymphatic system located behind the breast bone. Within three weeks of finding the tumours, Josh lost 50% of his right lung, and on his 22nd birthday started 36 consecutive rounds of chemotherapy.
The cancer went into remission, but returned in 2014, now with a secondary tumour in his neck. This time, the chemo had only a 50% chance of working – luckily, it did.
So when a routine scan at Chris O’Brien Lifehouse in November 2016 revealed that the three tumours in his left lung had grown again, Cathy and her husband Steve were both prepared for and devastated by the news.
“My husband and I were walking through the lobby and I was crying, and my husband looked very teary,” says Cathy. “And this lady walked up to us asked us if we were okay.” Cathy said no. “And she just pulled us aside, sat us down, and we told her the whole story.”
Gail O’Brien AO: Patient Advocate
Although a total stranger to Cathy at the time, the woman was Gail O’Brien, wife of the late Chris O’Brien and soon to become the official patient advocate at Chris O’Brien Lifehouse.
In 2016, Gail had a thriving practice as a physiotherapist. A board member at Chris O’Brien Lifehouse, Gail was closely involved in the broader vision of the hospital, but it wasn’t until a few months later that she would take up the full time patient advocate role.
“I had actually never heard of that title before,” says Gail. We are sitting in her fifth-floor office, Gail with a mug of tea in hand. “I was very happy in my role as a physiotherapist, but as soon as the CEO Eileen asked me to be the patient advocate here, I didn’t even have to think for a second.”
Slight and soft-spoken, Gail’s manner is gentle. Alongside that kindness, however, is a surprising strength – a strength that carried her through the death of her husband, the sudden undiagnosed epilepsy which claimed her oldest son’s life, and her daughter’s diagnosis with papillary thyroid cancer.
“I have done so much of my own healing, and I suppose my search for meaning has translated into this place,” she says. “Maybe this role is a chance to talk about what I’ve learned.”
As to what the job entails – it’s impossible to summarise, says Gail. Every day is different, according to every patient’s needs.
Often, as with Cathy on that day in 2016, it’s as simple as offering a sympathetic ear.
“As a mother, I would have done anything in the world for it to be me and not my son,” says Cathy. To meet someone who had walked the same path with her own family was a huge comfort. “I can’t tell you how much it helped me to be able to talk to another mum,” she says.
Gail’s support took a weight off Josh’s shoulders too. “For me, when I was going through it all, I wasn’t worried about myself – I knew I would be okay. My biggest worry was always my family,” says Josh. “When Gail would come up and visit, it gave Mum an outlet, gave her someone to talk to and took a lot of pressure off her. Gail helps more than she knows.”
Young family and a worrying diagnosis
Sometimes, the job requires a delicate negotiation between the medical team’s recommendations and a patient’s wishes.
Parents Michelle and Jeevan Witt had enough on their hands, with two children under three and the youngest not sleeping. When nine-month-old Isaac accidentally head-butted Michelle in the cheek while breastfeeding, the pain was far worse than she expected. It subsided quickly, but Michelle thought she’d better see a dentist.
A check-up revealed no obvious damage, but the dentist recommended she go for a scan for a tiny, painless lump that had recently appeared on her gum. It was the Easter long weekend, and all the medical centres were closed.
“I ended up going that night to RPA emergency for the scan,” says Michelle. “I felt silly, I felt like I only had a head cold, but my mum was worried and offered to babysit so I could go. Looking back, I’m glad she encouraged me, because that’s where they found a part of my jaw missing where an unknown tumour was destroying the inside of my face.”
The emergency doctor at RPA wrote a possible diagnosis on her medical report, advised not to google it, and referred her to Lifehouse.
Four weeks later, bone biopsy results confirmed it was an ameloblastoma: a rare, benign but aggressive tumour that had eaten away part of her upper jaw. It occurs in approximately one in 2 million people, and of those, most get it in their lower jaw.
“The disease was a total unknown to us,” says Michelle.
The tumour required a 12-hour surgery called a fibula free flap maxillectomy, in which the affected jaw bone, part of the roof of the mouth and ten upper teeth were removed, followed by reconstruction using bone, skin, and muscle from her left leg. The couple had no idea if she would be able to talk, eat, smile or walk normally again.
It was during this period of uncertainty that they first met Gail.
“Right from the beginning she was a calming presence,” says Jeevan. “From that first call, the first thing I remember is just being calmed and supported. I could tell immediately that she was a positive, strong person.”
The surgery was successful, but recovery was tough and slow. Michelle spent two weeks in the ward learning how to walk and eat again. Suffering from low haemoglobin, Michelle required a blood transfusion, and with a nasogastric feeding tube in place, she struggled to sleep.
“It was Gail who suggested natural therapies such as massage, art therapy, mindfulness and meditation,” says Jeevan. Michelle was offered strong sleep medication, but felt apprehensive about taking it.
“Gail was very diplomatic, liaising between her staff and patients,” says Jeevan. “She never told us not to take the medication, only that there was another option. That was empowering for us, because we realised that we didn’t need to say yes to everything that’s offered, and that we could try other things.”
Michelle credits the ability to sleep naturally as a big part of her recovery. Most of all, though, she says it’s been a team effort.
“So many people came together to help us out. Our caring family, friends, and neighbours all helped in countless ways, including offers of babysitting, housework, cooking meals, prayers and positive attitudes.”
She’s also quick to thank all the staff at Lifehouse, including her surgical team, led by Professor Jonathan Clark, Associate Professor Sydney Ch’ng, and prosthodontist Doctor Suhas Deshpande (based at Westmead).
A year later, she’s back being a busy mum to her kids, and working part time as a waste management officer.
“We’re really thankful for everything Gail built at Lifehouse and her ongoing part in that,” says Michelle. “We’ve been really blessed to have her on our team.”
A heavy burden worn lightly
Gail’s job is full of positive stories like these.
As we speak, a bunch of flowers sits on her desk, delivered while she was away seeing to another patient. The phone rings – it’s a man who she’d spoken to earlier that week, currently undergoing radiation therapy downstairs. He wants to donate some money to the hospital.
For all the positive outcomes, however, it’s impossible to talk about cancer without acknowledging the fear, grief and sadness that the disease also brings.
For Gail, working every day with these extremes of human emotion, the role can sometimes be exhausting.
“By the weekend, I know I need a break. I live in a suburb that has a lot of nature around it, and I walk in the bush which is incredibly healing,” she says.
Overall, she feels lucky to be able to do what she does.
“I think having someone to be there for patients is important because cancer can be very lonely,” says Gail.
“A lot of my job is about giving people hope and empathy as somebody who has also walked that path.”
Lee-Ann Cipri’s cancer journey is just beginning.
On a whim, Lee-Ann decided to visit a psychic. When the reading was over, the woman called her back and told her there was something not quite right.
“It was playing on my mind for two weeks, and I thought I’d better go and see a doctor. But what would I say? Hi, I feel great, but can I get a test done because my psychic said to?”
She’s glad she did. Because of a family history of cancer – her mum, aunt and niece had all had various forms – the doctor suggested a mammogram and ultrasound. The ultrasound picked up a tiny blip, which turned out to be breast cancer.
Lee-Ann had Gail’s number, tucked away from when they’d met at a work function years before. Within half an hour of calling, Gail had organised surgery for Lee-Ann, and matched her up with Professor Sanjay Warrier, a breast surgeon at Chris O’Brien Lifehouse.
Now, as Lee-Ann prepares to start radiotherapy, her outlook is positive.
“I feel so lucky,” says Lee-Ann. “Professor Warrier said it would probably have been about two years before I could feel my tumour, because the one I had was very slow growing. And who knows what position I would have been in two years from now.”
“I think the psychic was the best $30 I ever spent.”
For Cathy Clark, too, her relationship with Lifehouse continues.
Josh is now in remission, but his younger brother Jonah has been diagnosed with the same cancer – with tumours in the exact same places.
Now, they return every six months for check-ups. Knowing what the surgeons at Chris O’Brien Lifehouse have done for her older son, Cathy is optimistic about Jonah.
And she and Gail have become firm friends.
“Chris may be the face of Lifehouse, but Gail is the beating heart that keeps this place alive,” she says. “We are blessed to have her.”