By: Leslie Scrivener – Toronto Star Feature Writer
It’s a busy weekday morning as Jackie Smith boards the subway at High Park station.
She’s on her way to Sunnybrook’s Odette Cancer Centre. She’ll have five minutes of what’s known as palliative radiation, then make the return trip home.
“It’s crowded. No one is standing to give me a seat. I’m dying, but I must look okay.”
“You don’t think this is how people behave — carry on, take the subway —when they are dying.
“But they do. It’s surreal.”
The radiation she receives will not cure the aggressive breast cancer that has invaded the lining of her brain, but it will reduce the symptoms and lead to a more gentle death.
She will get more and more sleepy. It’s already started. The naps that eluded her all her life now take up hours every day.
Jackie, a close friend since journalism school, where she outshone the rest of us, has things to say in the last months of her life:
If you’re sick, don’t be passive. Educate yourself, learn about your disease, and act on the information.
She has triple negative breast cancer, which affects about 20 per cent of breast cancer patients and has a lower survival rate than most. Early relapse is common. A tumour was removed from her brain in October. In February, she learned she had leptomeningeal cancer, which occurs in only 5 per cent of breast cancer patients.
Parts of health-care system are “unresponsive,” Jackie says. You have to advocate for yourself so you don’t get lost in it. When a 2009 mammogram showed asymmetry in her left breast, a nurse practitioner told her, “They are looking too hard,” and arranged a follow-up in three months.
Waiting was too stressful. Jackie asked a knowledgeable friend to recommend a good breast-care centre for a repeat mammogram and ultrasound and got it immediately. She had a lumpectomy and was told repeatedly that she was cured.
Now she knows there is no cure. She doesn’t want any more treatment. Nor does she want to wrestle with the health care system to get it. She has opted out of what she calls “death-denying culture.”
She says: “I was sick of everything. And no matter what they did I wasn’t going to get any better. I might get a couple of months, and I was interested in enjoying the life I had, not sitting in a doctor’s office.” Besides, it was exhausting.
Jackie has always had strong opinions. Her fierce outspokenness is often admirable, but has sometimes been problem in the many jobs she had. She’s been a nurse in Australia, where she grew up, a journalist — she wrote about women’s issues for the Star in the 1980s — managed communications for Toronto Public Health, studied bioethics, wrote op-ed columns, and taught ethics and philosophy at Ryerson. Since most of her working life had been in the health-care system, she has always believed there was a better way to care for others.
“She is a crusader for anyone who needs a hand,” says her friend Anne Hillmer, who worked with her at public health.
A few weeks ago, she was on the streetcar with two nursing-school friends who travelled from Australia to see her, a last visit. A TTC driver barked at a confused passenger: “Don’t you speak English?”
Jackie’s outrage flared. “I’m sure you don’t mean this,” she began, getting up a head of steam, “but speaking English is not a requirement for riding the streetcar.” This led to an argument. A supervisor was called in who said to Jackie, “You are right.” The driver’s behaviour was “so un-Torontonian” she says.
Now, at 65, she sees the end of life but has not stopped living. She listens to Vivaldi and Puccini and Tchaikovsky. She regretted that she’d never taken the time to share her pleasure in music with her only child, Daniel Miller, who is 26. Recently, they’ve been to concerts at Roy Thomson Hall and Trinity-St. Paul’s. A few weeks ago, he thanked her for introducing him to this world. “It’s like a gift,” she says.
The moment he learned his mother had breast cancer, Daniel was stricken with worry and flew home from his summer tree-planting job. It meant everything to have him with her, and he stayed through Jackie’s surgery and chemo. The mother/son dynamic gradually changed. “Now, instead of being the caregiver, I have become dependent and I can rely on him to take care of finances and look after me.”
She sees friends every day. There are some 40 who bring meals and drive to the country, go to the symphony or have dinner with her. Her brother and sister-in-law came from Adelaide, Australia, to spend time with her. There were hours lost in the drama of Downton Abbey. She loves the feel of the spring sun on her face. The CBC is on most of the day, a marvellous link to the world of ideas, since her vision is now impaired. Her brain is working fine.
She hasn’t hesitated to talk about the end of life. She mixes empathy with her frankness. “This must be so hard for you,” she said to me a few days after the radiation oncologist laid it all out for her.
Occasionally she’s melancholy. During Thanksgiving dinner, she stepped away for a minute. When asked if anything was wrong, she said, “I was just thinking that next year you will all be here and I won’t.”
But she’s not afraid of the end, at least not yet, she says. “There’s a strange calmness about her,” observes Hillmer.
“Of all things that move man, one of the principal ones is his terror of death,” cultural anthropologist Ernest Becker wrote in his 1974 Pulitzer Prize-winning The Denial of Death. So much human activity is to defy death, he writes. We create lives that will have some lasting worth or meaning, whether in the legacy of children or creating things that reflect enduring human values, so “that they outlive or outshine death.”
It’s a heroic struggle we all engage in, whether by great leaders or peasants wresting a living from the land.
We transfer that sense of the heroic to those who are dying. We use the vocabulary of war and heroism. We “battle” cancer. We die after “a courageous struggle.” We are valiant. We are brave. We fight to the end.
Jackie read a newspaper story recently by a woman who wrote that all she could say about cancer is that she endured it. This made sense to Jackie. “I’m not interested in fighting this,” she says. “Actually I’ve never been in the battle. And because of that I’m having a better quality of life. I don’t have to fight to get appointments to get MRIs.”
At the beginning of her illness, she called one hospital three times to try to book a mammogram. She was told they’d lost the appointment book. After she got headaches last July — a sign the cancer had likely spread to her brain — it took two weeks to see an oncologist and another 11 days to get an MRI, at 4 a.m.
Knowing the course of the disease she was pretty sure she had a brain tumour. “I felt lost and abandoned by the system.”
Jackie says we live in a “cure culture. We can fix everything. We have all this science at our command, but still have these terrible diseases.”
One of her doctors — some of them seem to be incurable optimists — told her, “We’ll get you through this.” She pauses. “And I still have this thing weaseling its way through my brain.”
This thing is what writer Christopher Hitchens, who died last year, described the alien inside him. “Alive as long as I am — its only purpose is to kill me.”
There’s a 5- to 20-per-cent chance that when a brain tumour is removed in surgery — Jackie’s was removed in October — cells can escape and seed elsewhere in the brain.
The cancer in the lining of her brain has affected her peripheral vision. Once she lost her way in High Park, where she had jogged and walked for 30 years. Always physically strong — Jackie worked out at least an hour a day — she felt an unaccustomed vulnerability navigating streets that were so familiar.
She put up signs at home on the stairs: watch the step, watch your head.
Poor eyesight led to comical moments. Jackie wore someone else’s runners home after a swim at her local community centre. Staff cheerfully steered her out of the men’s change room.
She couldn’t read books anymore. But a few weeks ago, she found there was a correction in her vision and she could at least read the newspapers.
Once the spread of her cancer was detected in February, Jackie started a 10-day course of palliative whole-brain radiation. The treatment halted the tumour’s invasion of the cranial nerves affecting vision and the ability to swallow. Without the radiation, she might have experienced pain and seizures. The treatment “puts the brakes on that discomfort and (is) designed for end-of-life symptom relief,” says Jackie’s physician at Sunnybrook, Dr. Arjun Sahgal, an international leader in the field of brain and spine radiation.
Still, there are symptoms. Half of her face feels frozen, Jackie says. She taps her head — her hair is gone and she wears soft cotton caps. It feels thick, she says, “like a Munster head.” It’s difficult to chew, too.
The sleepiness she’s now feeling is one of the delayed side effects of radiation.
So what else do you do when you know you have a few months to live? Taxes. Go to the dentist — “I’m going to die with clean teeth,” Jackie says. She has visited palliative-care centres with friends. Everyone cried. She was glad Daniel, her son, was a little late for the tour and didn’t see how upset everyone was.
One of Jackie’s favourite expressions is “what a nightmare,” which she applied widely, to bureaucratic entanglements or faithless boyfriends. Weirdly, now that she’s in a true nightmare, we don’t hear it anymore. “I know it’s going to happen, but it seems unreal.”
She’s visited weekly by a palliative-care doctor and nurse. Even for the professionals, it’s difficult to know exactly what to say to a dying woman. One, hoping to be helpful, said to her “we’re all dying.”
“She’s nice but it’s not very helpful when your time is so short,” says Jackie. “It would be better to say, ‘It’s terrible, it’s awful and we’ll do everything we can to make it peaceful and better for you.”
How do you speak to a friend who’s dying? Truthfully, deeply, unsparingly and all the time. Jackie was never much for greeting friends with hugs or pecks on the cheek. Last week we clung to each other at the door. We looked into one another’s eyes and held on tight. We say, “I love you” when we say goodbye.
She called at work the other day to say she’s figured everything out. She’d been thinking when she couldn’t sleep in the middle of the night.
She’d often talked about the separation that immigrants, even those who speak English, feel. “I’ve lived in all these countries and what makes a place your home? I’ve had all these jobs and it all comes together. All the people I’ve met are helping me now. My friends and my family have come from Australia.
“It’s the connections and people you care for and who care for you. I have the benefit of all those I have met along the way and at the end they are there for you.”
It’s so terrible, she says. “And I’m so fortunate.”
STORIES WRITTEN BY JACKIE SMITH
June 10, 2002: At one extreme, we have frail, elderly people…
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