When cancer and motherhood collide

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Sarah Hampson is a Globe and Mail feature writer.

We are their map; their fortified castle; where they came from and a familiar place they can return to. The mother-child relationship is founded on survival. For much of their lives, we’re governed by a visceral mother-bear instinct to help our kids thrive. So when our survival is at risk, suddenly, with a terrifying diagnosis, the world tilts.

I know this to be true because in September, 2017, after a routine mammogram, I was diagnosed at the age of 59 with Stage 3 aggressive breast cancer which had advanced to some lymph nodes. No family history. Less than six months earlier, I had had my annual check-up with my GP, including a thorough breast exam: all clear. Within three weeks of my biopsy results, I was sitting in a chemotherapy ward, offering up my veins for six rounds of powerful chemicals and a year of intravenous targeted therapy. My treatment would also include surgery and radiation.

Ask any mother with cancer, and she will likely tell you that the experience of this illness is the mother-of-all-mothering experiences, intensifying the relationship with our children as it unleashes a torrent of often contradictory impulses – we want to protect them, not burden them, to prepare them, to tell them the truth (depending on their age), to teach, to model good behaviour, to make everything feel okay, even when it might not be. But hard as it is, the new emotional territory can often invite raw, meaningful conversations that might not have happened otherwise.

In some cases, the children’s well being is all we focus on. One friend of mine, Nancy Glassco, who has endured two skirmishes with two different kinds of breast cancer in 2001 and 2011, told me, half-jokingly, that her initial reaction was “to divorce my husband so we could work on finding our children a new mother.” She has four children, who were all under the age of 13 at the time of her first diagnosis. The 60-year-old is now cancer-free – and still married.

The disease can reshape many aspects of our lives, including how we are as mothers. When Gillian Deacon was diagnosed with breast cancer for the second time in the fall of 2018, she immediately adopted the mother mode she had employed the first time around – but with one difference.

“It’s a balanced approach, straddling the line between truthful and candid and not wanting to scare them,” says the CBC Radio host, who wrote a memoir about her first cancer experience, Naked Imperfection. But with her current bout of the disease, nine and a half years after the first, she’s more willing to display her vulnerability to her three children, all boys, now 20, 18 and 16. Partly, that’s because her initial cancer involved just surgery and radiation. The new cancer has been treated with four rounds of chemotherapy, which made normalcy impossible to feign.

“I saw the fear in their eyes. It was so unusual for them to see their high-energy, high-functioning mom flattened and bald," she says. But her approach also differed from the previous time because her children were older and her illness presented a teaching opportunity. "I have been this strong, capable woman in their lives, and because they are male, I thought it was important to cultivate compassion. I have been very open with them. I give them a hug and say that I’m feeling sad if I’m having a difficult day. Emotional literacy is so important,” the 53 year-old says. (Recently finished with treatments, she is looking forward to returning to her regular life.)

It’s an odd thing, moving from healthy human to life-threatened patient. I was overwhelmed by the thought that the doctors were so keen to save my life. Who, me? I’m not sick! Really? The insidious nature of early-stage breast cancer is that you feel okay until someone tells you that a terrorist is lurking in the closet, determined to spread doom. Suddenly, I could feel the eyes of my family, my children and husband, my friends and my caregivers, upon me. And soon I was watching myself, too, as if I were a character in a movie whose narrative arc was unknown. Will she die? Look, she’s bald! Hey, nice head shape. She looks pale. Anemic. Oh dear, a respiratory viral infection has sent her to hospital again with a high fever! For the third time in a matter of two months. How will this story end? Stay tuned!

There’s a reason why people use the cliché of cancer as a journey: You can only see the step in front of you and you’re never sure where it will lead. That I am here, writing this, is proof that I reached the best destination possible. My prognosis is excellent.

But I never felt strong and courageous, as people often insisted I was. I resisted that trope of the fierce, bald, defiant cancer patient you see in medical brochures, television series and many movies: Samantha in Sex and The City throwing off her wig at a conference to the cheers of the audience. It felt similar to the prescriptive pressure of being a “have it all” working mother. So many roles for women come with cultural scripts – the devoted wife, the truth-telling political leader, the selfless mother. But I didn’t feel anything close to the bad-ass cancer patients I know or have heard about, women who lift weights while drainage tubes are still sticking out of their surgical scars. In fact, I learned that I had no control.

I submitted, that’s all. The only stand I made was to not have something called a Port-a-Cath surgically inserted in a large vein below my collar bone before my treatment started. It’s designed to make chemotherapy easier and prevent damage to the veins, but for me, the thought of it underscored the sense that my body would become nothing more than a receptacle for poison. I refused, and the veins in my arms and hands held up. In every other way, I handed over my body to the doctors much as I had handed my body over to pregnancies. It had given birth to three sons, three miracles, and now, it had given birth to a nightmare.

Strangely, it turns out that cancer and motherhood have quite a lot in common. Each changes our lives and sets us on a course that will never be exactly the same. And each forces us to count time. Months until the next scan. Weeks until the next infusion. Days until you start to feel better after chemo. It’s the same precise marking of time we did to assess the developmental milestones of our newborns. Cancer survivors routinely count the years since their diagnosis – five years out, 11 years out – in the way mothers note the ages of their children. And for cancer patients with a terminal diagnosis, the due date is when death arrives rather than birth.

No wonder many women are obsessed with their bodies. They are capable of so much: intricate molecular mysteries. When pregnant, our bodies can knit together a human being while we blithely watch television. Having cancer is like living with a difficult teenager – you’re often worried about what he will do next. With my diagnosis, I became a frightened hostage inside a body with a will of its own, and that sense of powerlessness was never more obvious than in my relationship with my children, now all grown up.

“Please get a grip,” my eldest son, who is 33, said to me. It was the day after the first consultation with the surgeon, and I was being inundated with calls about appointments for scans – of my heart, my bones, my abdomen, my lungs, my pelvis. Surely, this meant the doctors were thinking the cancer was more gruesome than first thought, I fretted.

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This son is a doctor, which made my diagnosis and treatment more emotionally challenging for him but easier for me as he insisted on being closely involved. He explained that this was normal work-up so doctors can assess whether the cancer has spread and if my heart was strong enough for chemo. The nurse had said the same thing, but comments fly in one ear and out the other when you’re overwhelmed by a crisis. “And this is not just about you,” he said gently. “It involves all of us.” I went upstairs to my room, closed the door and lay down on my bed, left to contemplate my behaviour.

The care dynamic in my family had flipped – an abrupt inversion. Suddenly, I was the child. And frankly – not always, but often – I allowed myself to be somewhat infantilized. I didn’t weep uncontrollably – there was one big spontaneous cry by myself in our little city garden – but I retreated, like a shy child at an adult party. It wasn’t that I was feeling sorry for myself. I just didn’t feel chatty or social. In the haze of chemo drugs, I couldn’t easily engage with people. I let others take the lead as I ruminated about my ordeal, folding in on myself like a tent.

It wasn’t something I was accustomed to doing. I had steered my children through a difficult divorce from their father 17 years ago. He had chosen to remain at the periphery of their lives, which meant I had to step into its centre: create stability, emotional and financial. Nine years after that divorce, I remarried – my lovely husband, Mark, was the final chapter of my divorce memoir, Happily Ever After Marriage, who arrived too late for publication! He and my children took me to the endless doctor and hospital appointments, sometimes taking turns but always, when it was an important or difficult one, all four of them would be in attendance, an imposing, encircling wall.

“The love that my kids feed me, fill me with all the time…“ Ms. Deacon told me, trailing off, shaking her head a bit as she searched for words. “It’s like this inflatable chariot that carries you through the crap of this twisty, dark river you’re going along which buffers you from the sharp edges,” she said after a moment’s reflection.

And that’s the thing, isn’t it? We want to know that our children will show up to help us when we’re weak and needy. As champions of self-sacrifice, often taken for granted, mothers have good reason to doubt the love at times when children rebel, blurt mean things, act like teenage jerks. Mother’s Day can often feel like a forced display of love with the Hallmark cards, the obligatory flowers.

“It was a few days after my diagnosis, and I hadn’t told my kids yet,” explains Charlene Gilmour, who is the mother of two children, age 18 and 20. “My teenage son was in the basement texting me about what he wanted to eat for dinner. ‘I want this and I want that.’ And so I texted him, saying, ‘Can you come upstairs please?’ He did, and I said to him that I had to tell him something, and I just blurted out, ‘I have breast cancer!’ I told him that he has to think of others, not just himself. And then I cried. And he cried. And he immediately started clearing stuff off the table and putting away dishes,” she says.

Not that compliance with household chores lasted, Ms. Gilmour points out. Ms. Deacon also says that her boys were not always as helpful around the house as she thought they might be. “I remember thinking, ‘Oh, they will totally want to be angels. Make their beds. Clean up.' No, that didn’t happen,” she explains, laughing. And once the storm of my treatments came to an end and the prognosis turned sunny, my boys turned their full attention back to their daily lives. Which is as it should be. What cancer does, though, is uncover the oceanic love from and for our children that is often subterranean, not expressed easily or daily, the depth of which is unknown even sometimes to the people involved. Ms. Deacon tells me that there were days in the winter when her two boys who are still living at home – the eldest is at university out of town – couldn’t bear to leave her alone. “Maybe they needed to be in our nest with me, not to be nursemaids necessarily but to be present,” she says. Her youngest would often come home from a sports event and say, “I got extra points for you."

"Their very existence is the one dark piece I cannot get right within all this,” Nina Riggs writes about her three boys in The Bright Hour: A Memoir Of Living and Dying, which described her life with metastatic breast cancer. “I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.” Ms. Riggs, an American writer and poet, died in 2017 at the age 40, shortly before her memoir was published.

Metastatic or Stage 4 breast cancer ushers in a completely new level of acute existential anxiety. It is a terminal diagnosis. The patient will die from the disease – the question is simply when. That state of being is hard to imagine; impossible to imagine, in fact. In memoirs such as Before I Say Goodbye by Ruth Picardie, a mother of two-year-old twins, who died when she was 33, the heartbreak is almost unbearable. In the back of the book are letters she wrote to her children.

I have had many conversations with my friend Margaret, who presented with Stage 4 breast cancer three years ago. The 50-something mother of young teenage children asked that I don’t use her last name for privacy reasons. She and I often talk about the “vast delusion" the popular culture encourages by promoting material things as a measure of happiness and success. She tells me about the small, beautiful instances of life that she observes every day – the sudden blooming of blossoms in the spring, the architecture of trees in winter, a loving, spontaneous comment from one child to another. Working with traditional and alternative medicine to keep the disease at bay, she continues to thrive. Metastases to other parts of her body have been zapped with radiation or excised. She is not all Pollyanna. Fear and dread are present. But she is determined not to remain at the bottom of the rabbit hole of doom.

She has thought deeply about how to help her children cope. “Feeling sorry for myself, pitying myself, thinking, ‘I’m going to die,’ is just a thought. I don’t want to share with them my made-up nightmares. For my own peace of mind, the very best thing is to stay in the moment. And in this moment, my life is perfect … My old self would be irritated if my kids’ rooms were a mess and I was having to pick up their socks all the time," she explained during a discussion about the impact of cancer on family life. “I still get slightly annoyed,” she added with a small laugh. “But then I think, ‘How lucky am I to pick up the socks of my beautiful child?’ I can choose to do it with love. And I do.” The family has grown even closer than before, she explains. A high-powered entrepreneurial executive, she quit working. She, her husband and their children make a point of having dinner all together every night, a rarity in most modern families, in order to talk about their day.

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Margaret has told me often that cancer has been her greatest teacher about life. During a recent brunch, she leaned across the table, fixing me with her bright eyes. “I would so much prefer this,” she said, meaning the intense examination of life and death that cancer has made possible, “rather than being hit by a bus.” I asked her if she speaks to her children about death. “We talk about it as a part of life, unrelated to cancer. I see it as part of my job as a mother to encourage my children to be curious about the big questions, to think and talk about why we are here, spinning through space on this planet.”

When she went through chemo, her sons shaved their heads in solidarity. And they have taught her something as well. At certain points during her illness, Margaret chose to spare them the medical updates. With MRIs every three months to check if the cancer is stable, her life is filled with medical appointments and concerns. “When I haven’t told them about certain things, they are really cross with me. They are human beings. And I underestimated their capacity to handle whatever it is that is going on."

In our case, we had my youngest son living with us as he was moving back to Toronto. There was no shielding him from my situation, even at my worst. Without prompting, he filled the freezer with individual portions of homemade, healthy soups. He packed up a knapsack with music, reading material and snacks for chemo sessions. Along with my husband, he would make breakfast for me every morning, bringing it to me in bed. Several times during the day, he would text to know how I was feeling. The other two would check in, too, even though my husband was around to look after me. They asked if I had taken my blood pressure, if I had eaten well, if I was drinking enough water. They monitored my pill-taking in preparation for the firestorm of each chemo session. They were nagging me!

One time, my youngest son touched the side of my face as we sat at the kitchen bar with the tip of his finger, noting that a vein was visible near the surface and asking why. It had always been there. He just hadn’t noticed before. It made me think of how I once inspected the physical details of him and his brothers with the same focused attention when they were newborns – the whorls of hair on the crowns of their heads, the delicate seashell of their ears, the perfect formation of their little fingers and toes. On one occasion in the ER, on Christmas Day, in fact, curtained off in a cubicle while we waited to see the doctor, my eldest read out loud to me from a magazine he had found as he sat at my bedside.

“I look at my children now and think that my cancer has played a significant part in the making of them,” Margaret says. “They appreciate health and life and me more. We appreciate the fragility of life.”

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During the worst part of my illness, I could not look at obituaries even though they are normally a part of my daily newspaper-reading habit. Then, more than half a year later, I began to read them again – obsessively, noting the ages, the gender, the lives, the causes of death. Maybe it had something to do with coming to terms with my disease and mortality. I had spent many months inside my head, lying on our wide bed, my “raft of life” as I referred to it, floating along through days and nights, staring out the window at the swaying trees and moving clouds, unable to easily read books due to trouble with concentration, my sickness giving space to looping thoughts of love and fate and loss and death. At one point, I even started to imagine my death-bed scene like a younger version of myself dreamed of a wedding day. It would be very Victorian. I would be dressed in a pretty nightie. My friends would drop by. We would vape some dope and laugh about how perfect our tits were in our 20s. I would speak meaningfully and lovingly to my husband, my children, my two daughters-in-law, my two grandsons, all these beloved faces looming over me, looking at me with searching eyes. My illness had already created many moments in waiting rooms, the chemo ward and at my bedside for soulful conversations. One constant theme was reminding my children that beautiful, joyous things are around the corner just as difficult and sad ones are, and that each episode, good or bad, is only that, an episode that you can be sure will pass. That is the pattern, the nature, the certainty, of how every life unfolds, I philosophized. Did they roll their eyes? Maybe. These were Mom Talks on steroids, literally! Nevertheless, I imagined more such talks; spinning the wisdom and messages of love in my head that I would want to leave with them.

I had started to think about the word “grace” that is part of the cancer language in obituaries alongside words such as “battle” and “courage.” What does that mean exactly? What does it look like?

I don’t know if there’s one simple answer. “I think every mother [with cancer] wonders if she is doing it right, how she manages the disease with her kids, modelling certain behaviours,” Ms. Deacon told me. And people with cancer know that there is no right way for anything. Cancer teaches you, over and over, about the individual nature of its effect on people. It’s a case-by-case situation – how the disease progresses, the molecular composition of the tumour, how it reacts to certain therapies, whether it comes back or not and how each person copes. It’s an individual story told with the same precision as mothers recounting the birth details of their children.

In the fall of 2017, I ran into June McDougall, a childhood friend of mine, in the lobby of Princess Margaret Hospital in Toronto, that modern-day Lourdes, a place of sad, downcast eyes that rarely meet the gaze of others. I had known about her illness for many years. A mother of three girls, she had been diagnosed with Stage 4 melanoma 13 years earlier at the age of 44. Her children were 13 and under at the time. Everyone who knew her had heard about how she coped with her illness. We were all in awe of her fortitude. Her prognosis at the time of diagnosis would have been grim – back then, 85 per cent of people with that stage of melanoma died within one year. But she prevailed. In 2010, the cancer metastasized to her leg. Her femur and knee were removed and replaced with titanium parts. Two of her quad muscles were also removed. Again, she didn’t stop. The family travelled to many different places. She continued to ski. Throughout her illness, she worked as a hotel executive in the United States and Canada. It was her therapy, her way of distracting herself from her illness.

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One month after I saw her, she died from complications due to treatment. I think about her often. I have dreamed about her. She defied the odds so many times. She simply refused to let the disease take over her life. I cannot imagine how she was able to do that. And I admired her so much for her choice to protect her girls from the sadness and fear she must have felt.

When the youngest, Jackie, was going off to university in the fall of 2017, her mother was in pain with tumours in her groin. But she waited to be admitted to hospital until her husband returned from having taken their daughter to McGill University in Montreal. “That was very like June,” says Drew McDougall, her widower. “She wanted to give Jackie a good send off. Jackie knew, going to school, that her Mom was not well. But it would have been much tougher if Mom was in hospital versus waving at the door of the house.”

“I think she survived for 13 years because of her family, because of her daughters,” says Jaime McDougall, 27. “She wanted to see that we were okay. In her mind, she didn’t have a choice."

Two weeks after her mother’s funeral, Pippa McDougall had to complete several papers for a master’s degree in politics and economics at King’s College London in England. “I channelled my Mom to do well in school. Seeing her handle such challenges gave me strength to carry on without her. I was never a scholar but I finished my master’s with distinction and that’s because I tried to act like she would have," the 26-year-old says.

Their mother never spoke of death. “She always remained positive. If she was in a drug trial, she would say, ‘This is great. I have a ten per cent chance that it will work,” Pippa says. “She wanted us to live our lives, unburdened by her situation.”

Even her husband didn’t think she would die until two days before her death. In hospital on a respirator and unable to speak, she was sure she would pull through, giving a thumbs up or down to indicate how she was feeling.

Her eldest, Jaime, says that she and her sisters didn’t have a formal goodbye with their mother. But one day, “she was in a lucid state in the ICU [Intensive Care Unit] and I was by myself with her. It was my last moment, my last words to her, just me talking and thanking her for everything. I knew she could hear me. She squeezed my hand.”

In the end, that love, that gratitude, is all we need to know.