On my 23rd birthday, I’d been inside for a week. This is not an unusual statement now, but that birthday was last year. My time had been almost entirely spent in a single, unfamiliar room, disinfected of normality. Instead of the sound of birds, or the wind through the trees, I heard rhythmic beeps and footsteps.
In this room, time slowed: the variation between day and night became less noticeable. The buzz of fluorescent lights accompanied the buzz in my head. Slowly, the days had become somewhat more peaceful. Tears had stopped. Medication had kicked in. My four-year-old-son, asleep next to me, was being fed through a tube.
“Life changes in an instant,” wrote Joan Didion, on the death of her husband. “You sit down to dinner and life as you know it has ended.”
That certainly rang true. It had been five days since my son’s cancer had been confirmed. My son, who had rarely taken Calpol in all his four years, needed surgery to fit tubes, tubes to pump pints of poison into his body. Bittersweet was the colour returning to his lips and his cheeks. He received blood transfusions and I realised how weak he had looked. It has been explained that trauma can cause memory loss: the first few weeks are a blur. Although, I can remember the view from the locked window: another block of the hospital, and, if I looked up, I could see the clouds. I watched them blow.
Quickly, sometimes, then slow. To see the wind, but not feel it, summed up the sensation of watching life go on, while we were temporarily not part of it. Weeks passed. Myself and my partner, Gavin, took my son, Noah, home. Armed with a regime of medication, hindered by his wiped out immune system. Cancer and chemotherapy took their toll. We found ourselves perched between homes: our house became our second home, while the hospital became our main residence. Once the misplaced excitement of late-night drives to the hospital had worn off, we were in limbo, always expecting to pack up and leave at the first sign of something untoward.
Kiera with her partner, Gavin, and son, Noah
With a compromised immune system came a compromised lifestyle; public places were unsafe, supermarkets were scary. Other children went back to school, Noah did not. Time in isolation was spent taking solace in the hidden places we found. We learned the best times to go out in order to not see a single soul. Loneliness devoured us, despite weekly visits from my son’s nurse, and my parents and friends helping in any way they could. I missed spontaneity and more natural forms of human interaction. Slowly and unwillingly, the new normal was accepted. I refrained from bargaining and from pleas for things to be different. Cancer is gruelling, but there was light along the way. Cliched, but true: cancer shifted my focus.
Family became even more important – so did being honest, I allowed myself to unfilter emotions. Unapologetically, I was confused, angry and unmotivated. I was also soaking up each minute spent with Noah. Defiantly, I cwtched [a Welsh word, meaning cuddled, but more than that] and kissed and loved. Life with a seriously ill child means isolation. It means disruption to schooling – missing months or years at a time. Work is disrupted for one or both parents, often with at least one parent leaving work, which has dramatic effects financially. Of course, the most pressing factor is loneliness. Sound familiar? We went into coronavirus isolation early. We didn’t know what was coming, but it felt right to take precautions. Almost a year has passed since Noah first returned to school.
He is now in maintenance, a gentler phase of his chemotherapy treatment. Repeating our lives of a year ago, with a child who is now so much more well brings about a strange déjà vu. This time we don’t have the sanctuary of hidden walks. Isolation burns hotter now we are even more confined and with a healthier child. Despite being “in this together”, I am jealous, still, of people who are able to take their daily walks and meet small groups of friends and family.
Once again, we are behind the glass, held back from normal life, longing for it. But longing means there is hope. Noah can run and dance and play. He is not so held back by the effects of medication. He has shaken the shackle of sickness and its side effects, but is not yet out of the woods. With a hidden danger, it can be easy to forget its existence. For a split second each morning nothing is out of the ordinary. Noah is not the only child to have cancer, nor are we the only ones experiencing isolation this time. It is easy to become selfish and self-absorbed: I think about those who hoarded with disregard for others. The initial wave of fear and selfishness is subsiding. Already, there is a greater need for connection. Each rainbow on the glass depicts our shared want to give something. The popular analogies of the second world war may not be apt, but the better attitudes of the era are resurfacing: we are rallying together in new ways. Neighbours have met for the first time (from a safe distance). We are making do and mending. Strangers are offering to bring food and medicine to those in need. Our key workers forgo safety and sacrifice time spent with their own families in order to serve us.
No illness is survived through fortitude. No illness is a battle. Yet both cancer and coronavirus require acts of surrender if we are to survive. I quickly learned acceptance leads to adapting. Surrender control, accept you are in a situation where almost all of your experiences are useless. Let go of an end date. At the very beginning of our cancer journey, I’d written: “We are very ready to go home and heal.” An announcement made with very little energy and an unrecognised understanding of how healing works. As with grief, there’s a process that comes with cancer: fear, confusion, acceptance, hope. I hadn’t thought about healing since. It’s strange to see your words years later, from a very different perspective. I see beauty in healing I hadn’t noticed before. It’s gentle and unassuming.
Healing is a process where there is no pressure, no expectancy or demand. Like a mother who need not speak to comfort her child, healing is something quiet in the background. It’s in the background now. Urgency and a need to protect are at the forefront of all of our minds. When we have mourned those we have lost and thanked those who have saved us, the dust will settle and healing will quietly descend. Never in our lifetime has the whole world healed collectively. Healing does not mean a return to normal. Nobody will be left untouched. The end of bubonic plague birthed the Renaissance. Today, too, priorities have been adjusted; art and music with their transformative qualities will lead the human race. Our focus has shifted to gratitude to those we rely on. Society has realised the value of its backbone.
If you’ve been affected by any of the issues raised in this article, Kiera recommends you visit: CLIC Sargent and Children’s Cancer and Leukaemia Group; and, specifically for families in Wales, LATCH
