Facing the final parting with your head held high
Praying for a miracle or facing death head on, we find our own way says JANIE BROWN in our last extract from her moving book on dying well
IWAS 22 and had been a student nurse for six months when I was assigned to care for a man in his forties dying of leukaemia. Jack had just been moved from the main ward to one of only two private rooms. The darkened room enveloped me as I stepped in, my eyes taking a few moments to adjust.
“Hello, you must be my nurse for tonight. Just call me Jack, will you? All this formality – not much use for it at this stage of my life,” he said. Although I felt awkward and incompetent to help Jack with his vast sadness and fears about dying, over the next few days he put me at ease. He described the guilt he felt about leaving his children and wife and he worried about the pain his death would cause.
With Jack, I learned that it was not my responsibility to take away his sorrow and worry, but more to offer a soft place of caring for his feelings to land. I found if I mostly listened and spoke rarely, Jack talked himself through his feelings until he finally ran out of words. The space between us seemed to connect us both to something larger, a perspective I know now, more than 30 years later, can be deeply comforting in those moments when words make little sense.
But Jack’s openness inspired me to learn more about how people live with dying, and how healthcare professionals can support people better. Jack taught me that a quiet, steady, non-judgemental presence – and a faith in the patient’s ability to find their own way to navigate life’s end – is the cornerstone of useful caregiving.
Aged 26, I became an oncology nurse, and it was during the next 10 years that both my love for the work and my dissatisfaction with the system grew. I became disheartened with a culture that was no longer empowered in its relationship with death. I saw how afraid healthcare professionals were discussing death with patients, let alone providing tools to help them address their fears and worries.
Just as we prepare for a birth, so too can we openly and consciously make preparations for dying, and therein provide some comfort and reassurance about what is, after all, a certainty for all of us.
LIZ WAS my right-hand person at work. She was also a woman who deeply understood the sorrow, fear and utter devastation of a diagnosis, and the potential for hope and healing garnered from 33 years of her own experience of cancer.
I first heard Liz’s shallow cough one morning in the office we shared every day. Being an oncology nurse, I notice coughs and quickly assess them: dry, productive, deep, shallow, persistent, wheezy, hacking, worrisome, not worrisome.
She told me she had been to see her family doctor and was on antibiotics, so I relaxed – somewhat. Meanwhile, we carried on each day, welcoming people with cancer into our centre for support.
About a month later, Liz was driving into work when she suddenly noticed a numbness spreading down her right arm and across her chest. She drove herself straight to the emergency room. The CT scan showed a mass in the top lobe of her right lung that the doctor told her was likely to be cancer. She would need a biopsy to know the exact pathology. Liz was 61 and it was looking like a third cancer diagnosis, which I assumed would be metastatic spread to her lung from the original breast cancer. I knew many women with metastatic breast cancer who were living well and drew hope from their stories. But the news was bad. Liz was not a candidate for surgery and would start immediate chemotherapy.
She didn’t want to hear a prognosis but, given my experience, I thought she would live for a year if she was lucky.
By contrast, two decades earlier, my own father had wanted to hear his prognosis. He asked the oncologist for it in his matter-of-fact way: “How long have I got?” “Three to four months,” the oncologist had said.
When Dad heard the prediction, I saw hope drop to the floor.
He trusted the scientists. He wasn’t going to waste time wishing for a miracle or seeking out alternative therapies. He
wanted to drink Champagne and watch old episodes of his favourite television show, Dad’s Army, and have quality time with his wife of 38 years and his four kids when they could get home for a visit.
He had lived a satisfying life, one he could accept letting go of, albeit with a trough of sadness.
Unlike my father, Liz had lived in relationship with cancer for her entire adult life, and had been cured twice. Perhaps her enduring hope was based on her lived experience of a body that trusted chemotherapy to ensure a cure.
In those early months, I tried very hard to ignore the foreboding and wished and hoped alongside Liz that she could be one of the extraordinary ones who survived Stage IV lung cancer. When the chemotherapy took away the persistent cough and breathlessness, and the radiation helped her bone pain, it was easier to do. But as the months went on, my hope waned even if Liz’s didn’t.
I think it was the nurse in me that saw the developing signs – weight loss, swollen ankles, declining energy, occasional mental confusion, and the yellow hue that filmed the whites of her eyes. I didn’t want to see those things, but I did.
I even worried that my lack of hope might somehow have an effect on Liz’s survival. A few nights before my father died, I questioned whether my acceptance of his dying might somehow prevent his chance for a miracle.
I knew, though, the deeper feeling I was having with my father, and now with Liz, was that I didn’t want them to be dying. Once I made space inside for my own helplessness, I could surrender to the truth of the situation. My father surrendered to death right at the moment of his diagnosis, and Liz would hold tight to her life until there was no choice but to let go.
There is clearly no right way. “Until my oncologist tells me it’s over, and there is no more treatment, then I will keep hoping,” Liz said. “And I want you to hold the intention with me.” The tension between us was palpable. My heart pounded. It felt like I was being asked to do the impossible.
“I will do my best, Lizzy, my friend,” I said, and took her hand in mine. “You know I want you to be here, more than anything.” I saw the flicker of disappointment in her eyes as she registered my doubt in her miracle.
One week later she was transferred to the hospice where she would spend five nights before she died. The room at the hospice was packed with visitors when I arrived, and Liz’s eyes opened. “Ah, there you are,” she said. “How are you?”
“Happy to see you looking so comfy and settled,” I replied.
“Mmm. Am I not the luckiest woman in the world?”
“What do you mean?” I asked. “Look around. There’s so much love in this room. I am so lucky.”
Liz tried to smile under the oxygen tubing that was inserted into her nostrils. I looked around at the huge circle of people. Flowers and cards covered every surface, and photographs were taped to the walls.The room was humming with life. “I see what you mean,” I said. “You are pretty lucky.”
AT LIZ’s funeral, after 50 people had carefully arranged flower petals collected from their gardens, Doug offered the box of ashes to his son Will, and then to his daughter Jacqueline. I felt strangely reassured by their willingness to come into direct contact with this tangible form of their mother.
I felt the love and support of community close in on them as others mirrored their courage to step forward. I was brought back to my own father’s cremation in a cold, grey, lifeless room in a crematorium in Glasgow, all of us dressed in black, while we watched my father’s coffin transferred mechanically from the raised platform.
Nothing was said, no music was played, there was no colour and no beauty. We were passive observers to an impersonal and mysterious process of how Dad’s body would be turned to ashes.
Now Doug stepped towards me and held out the black plastic box of his wife’s cremated remains. “Take a handful if you’d like to,” he said.
With trepidation, I pushed my hand into the darkness of the box and allowed myself to feel Liz’s once-animated body coat my fingers in cool ash. I cupped my left hand protectively over my right, keeping it safe, keeping her safe, in the dark warmth of my cradled hands. I sprinkled the ashes over the orange and red rose petals and yellow lilies of the flower “mandala” we’d created, and watched as the colours faded to grey.
Dear, dear Lizzy, I thought, as I covered the deep red roses and the white cosmos petals with her ashes. I was deeply aware of my friends kneeling around the circle, too, being as close to our beloved Liz as we could possibly be in her absence.
● Extracted from Radical Acts of Love: Twenty Conversations to Inspire Hope at the End of Life by Janie Brown (Canongate, £9.99). Out now. Call Express Bookshop on 01872 562310 or order via www.expressbookshop.co.uk. Postage and packing is £2.95
‘Dad wasn’t going to wish for a miracle. He wanted to drink Champagne and watch Dad’s Army’