After the Wall

This story is a re-print of After the Wall, written for CancerBridges, (Building Research Innovation into the Development and Growth of Excellence in Survivorship Care); a large provincial collection of people with special interest in researching and delivering evidence-based survivorship care.  The team members include researchers, physicians, oncologists and survivors located mostly in Alberta.  My original article can be found here on their website: Caregiver Story - Laurel Ambrose

The soft, barely audible voice drifted across the darkness of my father’s bedroom and jolted me from a semi-sleep while twisted up in an uncomfortable rocking chair.

“Are you still there?” he asked, and my eyes fluttered several times, attempting to focus on him.

“Yes, dad,” I replied calmly, “I’m still here.” A short silence. “Are you okay?”

“I’m okay honey, but you should go to bed now. You have to get up for work.”

My gracious and kind-hearted father was like that, always thinking of others – even during the sunset phase of his journey with Acute Myelomonocytic Leukemia (AML) – which lasted a brief ninety days from time of diagnosis. I slowly pulled my tired body upwards, made my way to his side, and touched his hand. I didn’t need to turn on the lamp. I had become expert at learning to function with the least amount of many things: light, time, sleep, exercise (and to my own detriment) support for how to deal with it all. He would soon leave me, and when the time arrived, it would feel very much like running full force up against a cement wall.

We are always there. Through the darkness, the light. We are caregivers: key partners in the survivorship relationship that develops when a treasured person in your life receives a cancer diagnosis. We are their advocates, their nurses, their cheering section – even their arms and legs when the challenge of moving forward can be overwhelming. We juggle doctor appointments, blood transfusions, personal affairs, hire home care, and watchdog for changing symptoms. In the ever- changing rollercoaster that is illness, we are survivors … too.

My father was a positive, humorous man, and the source of my greatest influences. So it came as no surprise to me that we spent a great deal of time laughing at sitcoms on TV, telling stories about the past, and making the most of the precious time we still had – with gratitude. I searched for people he hadn’t seen in years and arranged phone calls. He would call me from the bedroom phone and order tea. We’d laugh until the laughter wore both of us out, then I’d say a prayer of thanks for that day.

I said goodnight and walked to the bathroom less than ten paces away. In five hours, I had to be up for work. He was right. I needed sleep. The door closed with more noise than I intended. Escaping to the linoleum floor, I forced my back solidly up against the tiled wall and curled up into the smallest ball I could possibly create – like a spider suddenly doused with cold water. Oh God, I thought, I don’t know if I can do this! I held choking sobs hostage behind a veneer of iron-willed composure, something I became quite good at for far too long into the grief-related depression that lingered for years to come. I was new to the world of cancer caregiving then, and took it on with the same conviction I do climbing a mountain: What is this? What do we/don’t we, know? Ready? Have everything? Good. Let’s go! I was blindly sure I had protective layers for every form of adversity. I did not expect that those layers would be peeled back and laid much barer and deeper emotionally than anything I have ever encountered in the wilderness. I knew that my father (at age seventy-seven) had accepted his terminal illness – but I was determined to make him as comfortable as I could. In doing so, I forgot about myself.

On the morning of his passing, beads of cool sweat formed on his brow; the life lines of which had long since vanished since the strain of coping with the disease had ceased. His face was smooth, strangely youthful and relaxed. I felt relieved, but kept curling the comforter around his neck to keep him warm. This is one challenge of caregiving when your survivor has given life the permission it seeks to say goodbye. When do you actually slow down? Can you? And what is that supposed to look like? The hair on both my temples had turned grey. I had lost fifteen pounds, and struggled to maintain my full-time job as an office manager for an engineering firm. Suddenly, my momentum of care came to an abrupt stop, and I wasn’t sure how to ask, or who to ask: what now, after the wall?  So, I didn't. 

The funeral people showed up exactly the way I expected: formal and dressed in dark, neutral colors.  They were poised, polished and armed with all the right well-rehearsed sayings for the situation. They wheeled a steel gurney draped with a royal blue velvet cover into my father’s bedroom and requested that I leave the room out of respect for his dignity, and mine. Uh, okay. Did they not understand that there wouldn’t be anything new that could possibly shock me any further? I accompanied them out the front door, defiant that I would stay with him until the very last second, and I did. As the doors locked shut on the white van, I stood like a statue in the middle of the road until it slowly drove out of sight.

Since 1999, I have been a cancer caregiver three times. Each time, I have said goodbye, drawing upon the built-up wealth of understanding I have gained that every single moment we are alive is an opportunity for everyone in the survivorship relationship to thrive; to deepen their connection with themselves, and others. I have also shared in the joy of seeing friends and loved ones triumph not once – but twice, through their wellness journeys, returning to live cancer-free lives.

We are cancer caregivers. We are always there. If you are not sure how to ask, or who to ask: what now, before there could be a wall, you have already arrived where you need to be: CancerBridges.