A Working Woman’s Disease – by Philippa Brear
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.”
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.