A Working Woman’s Disease – by Philippa Brear
Glenda’s father, John Gauci, worked on Melbourne’s docks for three decades from the 1950s. Like thousands of waterfront workers around Australia at that time, he loaded and unloaded raw asbestos. On the days he handled it, John would have gone home covered in dust – his clothing saturated with fibres – not realising the danger. The likelihood is that Glenda, as a child, hugged or played with her father when he came home from work, and inhaled the toxic strands from his clothes.
Glenda was a career diplomat. The first Asian-Australian women – her mother was Japanese – appointed to ambassadorial level in the Australian diplomatic service, she had been posted to Japan and the United States during her 20-year career. But while directing Australia’s 2005 Tokyo Expo project, and commuting between Canberra and Tokyo, she began to feel unwell and uncharacteristically tired – the sort of fatigue that sleep couldn’t relieve. “I was used to being tired from work, but this was different. I couldn’t shake it off, ” she says.
In October 2004 she had a magnetic resonance imaging (MRI) scan. They gave Glenda the scan slides and told her to make an appointment to see her specialist as soon as possible. She went straight to his office and refused to leave until he saw her. “He qualified everything; I knew there was something very wrong.” He said Glenda’s situation was “really serious”. Glenda had never smoked, but she had lung cancer.
“Even before they found the tumour, I suspected I had something serious,” she says. “But I’d hoped for lymphoma or breast cancer. At least they can be treated.” Glenda made the trip to the lung unit at Melbourne’s Peter MacCallum Cancer Centre for a second opinion. After a surgical biopsy, they confirmed a new diagnosis. “A thoracic specialist in Sydney recently saw my April 2004 chest X-rays and said he could see the tumours,” Glenda says. “If it had been lung cancer, it [finding the tumours earlier] could have been the difference between life and death. But with mesothelioma, it doesn’t matter.”
Her cancer diagnosis was the start of a journey into western – and later alternative – medicine. “I’d dealt with doctors before, but nothing like this,” she says. Admitting to feeling out of her depth talking to doctors on their terms, Glenda nevertheless believes she knows enough to question everything. She says she’s tried to approach the disease like “a serious issue that requires resolution”, and take responsibility for managing it. She realises “more than ever” the importance of not being passive, and describes her dealings with medical practitioners as “relationship management”.
“I ask them why do you want to do that; how will this improve my quality of life; what is your experience of this? Unless you have ‘difficult patient’ stamped on your file, you’re not asking enough questions,” Glenda says. When she talks about “western medicine”, she points to “experimentation, theories and protocols” that may or may not work. “All of our generation was brought up to revere doctors, but it’s total bullshit,” she adds. “As soon you question them they fall apart – so much of what they do is guesswork. Every case is different.”
Glenda’s oncologist recommended chemotherapy immediately after her diagnosis. “Early on they floated the idea of a radical procedure involving a chemotherapy bath of the affected organs. But the odds weren’t good enough to even consider it.” There was also the option of more “conventional” chemotherapy. “I asked the questions – what will it do; how will it improve my situation? It sounded as if it wouldn’t improve my quality of life, so I decided to wait.” While Glenda maintains she’s not against western medicine, she wants to “do it my way”. She hasn’t ruled out chemotherapy, but she says it has to be justifiable given the other options. “It only works in 30 to 40 per cent of [mesothelioma] cases, and even then it only shrinks the tumour. It’s a temporary solution.”
In the early months after her diagnosis, Glenda looked into participating in Western
Australia-based medical trials, which a Perth-based friend had found through her own research, but they were put on hold. “Most research and clinical studies have been suspended because of lack of funds,” Glenda says.
By September 2005, nearly a year after her diagnosis, the tumour had covered 50 to 60 per cent of Glenda’s left lung. “Mesothelioma has tentacles that spread through the lung cavity. Eventually it will take it over completely,” she explains. Glenda knows mesothelioma is a terminal disease, with many people only surviving months after diagnosis. But some people have survived for years, she says.
Glenda recounts an October 2005 meeting with her oncologist, adding she’s dubbed it the “bumblebee session”. According to engineers, the oncologist told her, a bumblebee shouldn’t be able to fly, but it does. Given the size of her tumour, Glenda should have been in considerable pain and incapacitated, but she wasn’t; she was only taking “two Panadols” a day. “Hence, the bumblebee comparison,” she says. “Then he said looking at the tumour is like looking at a tricycle – it depends on what part you look at. At that point I just told him to shut up.”
In hindsight, Glenda realises it took resolve to reject medical advice. A friend told her saying no to chemotherapy was “a big call”. “It was only when I stopped and thought about it from that perspective that the significance of my decision occurred to me.”
From the time of her diagnosis, Glenda has been “gobsmacked and furious” at the behaviour of many doctors and their “arrogance, condescension and lack of professionalism and compassion”. She was not well prepared for the surgical biopsy of her tumour, she says, and nobody warned her about its after- or side-effects. “It is an invasive procedure, and not without risks.” But she praises other medical professionals she’s encountered, such as nurses and radiographers, and singles out one doctor, a thoracic specialist in Sydney, whom she describes as “compassionate and caring”. “Being a bit broad- and open-minded can only help you do what you do better. It’s a shame doctors aren’t more like that,” says Glenda.
Since her diagnosis Glenda believes she’s done a lot to resolve the “outstanding issues” in her life. She thinks that because she’s still in pain, there are things she has yet to confront, although she doesn’t necessarily know what they are – she expects to find out as she works her way through them. “It’s like peeling back the layers of the onion,” she says.
“I don’t know how differently I could’ve handled my life. I’m a 100-per cent-or-nothing
person.” She wonders if entering the workforce in an era of more family-friendly
employment practices and employers who espouse work-life balance might have made a difference. “Ten years ago my identity was based around my career. I was consumed by it and I loved it. But since the diagnosis everything’s changed. Of course the children were always important, but now they take absolute priority. After them come the rest of the family and myself.”
“I had no problem saying goodbye to work,” says Glenda. “Even if I’d wanted to continue, I couldn’t have because my energy levels had plummeted …These days I couldn’t work like I used to for more than a few hours without collapsing.”
Today Glenda isn’t coughing, and she can relax on my back verandah in Melbourne in the summer sun. She’s wearing a new season bohemian-style embroidered black and white skirt. She’s allowed herself to tan a little, something she always used to avoid. “I’m better than I was in September . I was exhausted after my birthday party – it took a month to get back to where I was.”
“Panadol” is still enough to control her pain, which “throbs but isn’t sharp”, but Glenda says she feels “a heaviness” on the left side of her chest. “When I’m not in pain, I think about all the things I can do. But when it comes back, it’s hard to summon the energy to go to the loo.” During the first year she thought about all the things she wanted to deal with because she thought “it might be the end”. Now she’s thinking about moving house because they don’t have a bathroom on the same level as the living area. “Down the track, I won’t be able to use the stairs,” she explains.
Glenda says she’s been “flying blind” with the treatment regime she’s put together in the 14 months since her diagnosis. “But something in it has worked, and it’s given me the reassurance and confidence to continue on this path,” she says. “My survival is due to a complete change in my attitude to life. Stopping work made a big difference, and I don’t get bogged down analysing things any more.” Glenda still practises yoga, has weekly massage, and meditates, but she’s stopped acupuncture and homoeopathy because they weren’t helping control her pain. Her oncologist says her left lung is not functioning and she is “living off the right lung”, but she thinks her left lung still works after she has a yoga session.
Glenda’s focus has shifted to what she calls “the medium term”. She’s thinking about writing, and has already drafted a children’s book about a boy searching for happiness, which he discovers is inside him. But she feels “nervous and lacking in confidence” about taking on other writing projects, although she would like to write her own story. She says she sets herself milestones, and they are “powerful motivators”. Glenda believes the diagnosis of mesothelioma marked the end of one part of her life and the beginning of another, and says there is something she needs to do, or something waiting to be done. She has to plan for “the next phase” of her life. “When your time is limited, you want to spend it productively and positively; you don’t focus on the negative.”
Glenda doesn’t condemn anybody for her predicament – except the companies that mined, manufactured and sold asbestos. “Here we have companies doing unthinkably bad things and getting away with it. And a whole lot of innocent people suffer as a result.”
Glenda’s tumour is pressing on her larynx, and her voice has shifted up an octave and lost its resonance. She sounds like a woman of 77, not 47. Curled up on her sofa in her tracksuit, she nurses a warm lavender-scented cushion, and late autumn sun streams through her townhouse courtyard and through the front window into her lounge room. It’s May 2006, the day before Mother’s Day.
The last few months have been difficult. “I took on projects like getting the house painted and planning an overseas trip, but it was at the expense of my health,” Glenda says. She believes she got distracted from her priorities, and her commitment to her regime suffered. “I lost the focus and discipline I had last year.” When she looks back, she considers her feelings changed during February and March. “I almost felt resigned, like things would take their course.” She still meditated but didn’t do it with the same dedication. “I was going through the motions,” Glenda says.
Glenda’s latest scans showed her tumour continues to grow slowly, and the cancer has spread to her right lung. Fluid had accumulated, putting pressure on her left lung and heart. “It [swelling from the fluid] actually started pushing my thorax to the right,” she says. “My body was literally out of alignment.”
In April Glenda had one litre of fluid drained from her left lung. “I’m much more comfortable since that,” she says. “The pain was awful; like nothing I’ve experienced. I sat up some nights between doses of painkillers and thought some very dark thoughts. Part of me was saying now you’ve tidied things up you can just let go.” She says she’s decided people don’t die of cancer – they die from pain.
Glenda agreed to drainage on the basis that it is not as interventionist as other treatment options. Because cancer cells can escape to other parts of the body via the drainage point, however, radiotherapy is routinely administered after the procedure. She refused it. “I didn’t want radiotherapy because of the side-effects,” she says. “The fluid will build up again, but it could take months.” Glenda talks in months now. At the start of the year she was taking Panadol to manage her pain. Now she combines it with Oxycontin, a narcotic.
“My oncologist says I should start chemo while I still have the strength. He wants to do two courses, and it’s now or never,” she says. Glenda says her family and friends are encouraging her to do it, but she’s decided against chemotherapy. “I’ve seen its devastating effects. There’s barely a mesothelioma sufferer who’s had chemotherapy who’s still alive.”
Glenda would rather have her immune system fighting the disease than coping with chemotherapy. The toxicity of the drugs concerns her because she’s so small – down to 38 kilograms from her former weight range of 43 to 45 kilograms. “If I were 80 kilos, there would be more of me to sustain it [chemotherapy],” she says. “But I don’t think my body would manage.”
There’s a one-in-three chance of success with chemotherapy, according to her oncologist, and those odds are not sufficiently attractive for Glenda. “Plus, success is only winding back the clock maybe six to 12 months – to where I was last year,” she says. “I would rather stick with what I have now, and manage it my own way. At least it’s me who’s making the decisions.” Either way, Glenda knows her future is “fraught with uncertainty”. She says a good day is “waking up”.
Glenda says she’s glad her father isn’t alive to see her suffering with a disease she probably developed because of him. “It’s not his fault, and it would have been terrible for him to see this,” she says. “I feel sorry for the fathers and husbands out there … who caused the mesothelioma and have to nurse [sufferers] until they die.”
Glenda officially retired from the diplomatic service on 12 April 2006. They offered her a formal send-off, but she turned them down. “At the time, I just didn’t have the energy,” she says. On the day she retired, Glenda says the family was absorbed in the logistics: was the car ready to be returned; had she handed in her mobile phone? “I don’t think they fully appreciated what an awful jolt it was for me. It was a wrenching day; the end of something incredibly important to me.” Glenda walked to the local shops and bought herself a bunch of flowers.
“In the end, what can you do? I have the probable reason I got this disease, but that doesn’t make a difference to how I approach its management.” The key, Glenda says, lies in the big picture. “It’s so unfair that the moral recklessness of a company can cause this to happen when it need not have happened. That makes me angry, and I’m still very angry. It shouldn’t have happened, and the lesson is it must never happen again,” she says. “We must never let history repeat itself.”
Glenda died on 23 August 2006, aged 47.