The Invisible Ones: Caring for a Loved One with Cancer
During the initial flurry of media attention that followed the publication of my book, The Cancer Whisperer, my husband and I went for a long walk in the soft fields of the Kent countryside where we live. I had just been interviewed by Jenni Murray on Woman’s Hour and Lorraine Kelly on ITV, both of which were quite daunting experiences. I was new to all this and media shy. Only 17 months earlier I had been diagnosed with incurable lung cancer and given a very poor prognosis. Quite unexpectedly I found myself speaking for other patients in a similar position and putting myself out there again. John and I were both pinching ourselves. How did this happen? We thought I would be dead by now.
“How do you feel about me getting this attention, babe?” I asked him, acutely conscious of all he had been through since my diagnosis and all he had done to help me stay alive.
He was silent for a minute and kept walking. We were passing an apple orchard on the ridge above a large lake populated with wild geese that often fly over our house in a chevron, honking in the morning air. It was spring. The trees were restless with new buds, as were we.
“I feel pure joy, darling,” he responded. “You may be in the spotlight, but what’s happening is as much mine as it is yours. We created it together. I know my part and I don’t need anyone to recognise me for it.”
I stopped walking and looked at him, awe-struck, as my eyes welled up with gratitude. It is a rare person whose self-regard is so firm that they don’t need to be acknowledged for the unbridled care they have bestowed on a gravely ill loved one for a prolonged period. I literally cannot count the ways.
Every morning he lays out my pills and supplements in three piles for each meal. He drives our daughter to school. He sits with me in hospital waiting rooms holding my hand in his lap and my feet to truth’s fire. “We don’t know until we know,” he reminds me as I imagine the worst and pray for the best and long for more years at his side. He cleans the house, makes me green juices and handles the laundry. He nurses me through pain and rocks me through grief. He plays football with our six-year-old, teaches her to roller-skate and puts toys on high branches in our garden so she can rescue them in her yellow Fireman Sam hat. I wipe away her tears when she is frightened and then he plunges her back into childhood like a dolphin diving off the crest of a wave. He keeps her safe when I am away having treatments. He pays bills and fields phone calls. He tells me when he is struggling, but he never complains.
I know how blessed I am to call this man my husband. I am in touch with many cancer patients who turn to me for emotional support. Some tell me how their spouses expect them to carry on as normal – putting food on the table or continuing work to keep the money coming in. A few leave to put themselves first while others are left by their partners because it all became “too much”. This is shocking, but understandable. It is a lot to bear. And then there are ones who stay the course, who serve us quietly in the background, fearing the worst, praying for the best and aching to swap places with us. These are the invisible ones whose suffering runs silent and deep. They don’t have cancer in their bodies, but it has invaded their lives nonetheless.
John’s first wife had cancer. She was diagnosed two months after their son was born. She nearly died, but didn’t. He quit his job to raise their boy while she spent two years enduring gruelling treatments. During that time he said no one asked him how he was doing. The focus was all on her and “rightly so”. But this experience caught up with him when I was diagnosed and we were determined to do it differently. I didn’t want him to be my “caregiver”. I wanted him to be my husband. So I wrote to close friends and family with a “how to help list”, which included remembering John. For the first six months we had a team of people rallying around us with practical and emotional support. It made a massive difference at a very perilous time.
That has mostly faded now. I am physically stable and our needs are not so great. During this period John slipped into the role of “caregiver” almost without our noticing. Except that we notice. We check in with each other. I ask how he is as often as he asks how I am. I will not allow him to be forgotten. Others forget him, which he permits. His friends rarely call or visit. But he is okay. He is okay because he knows who he is, what he gives and why. He loves me to the bone. But, more importantly, he recognises his part in how far we have come and how many miracles have sprung from our pain. He sees himself when others don’t. This is how I want to be when I grow up. This is what makes him shine.
Watch Sophie's TedX talk here: