By Viju Chandrasekhar, MBBS
The first time that I met Kristie*, an animated, somewhat flustered, woman of 67 years dressed in a pale pink nightgown, I had taken my time comprehending who she might be from outside the curtains that were fully drawn around her in the four-bed bay. Her nurse was with her; I wasn't about to interrupt. The electronic records had informed me that this patient had long-standing aphasia secondary to a previous stroke (or was it in context of the glioblastoma that she was diagnosed with shortly after, I pondered). Yet I heard her speak words and muffled half-sentences through the curtains—desperate, adamant, sometimes pleading, then again arguing. In due course, her nurse stepped out. We shared brief notes, and I walked in to introduce myself. I was the junior registrar on the medical oncology team that was caring for Kristie in hospital.
Hungry for answers, she hurled her questions at me; she wanted to know her latest MRI results. They looked good, I reassured her, even though her symptoms would prompt one to rethink this. I went over her history again, hoping to understand the altered sensations that she was intermittently experiencing across her scalp, around her mouth and upper chest. I tried to assess for new neurological deficits. She cried easily—and for no reason, it would seem—but her vulnerability drew me in. My heart broke for her; the world judges easily, and I feared she wasn't going to be spared.
Tears running down her face, she spoke aloud about patients in the adjacent three beds, turning her nose up at them, complaining to me that they all think she's mad. I sat on her four-wheeled walker, grabbing hold of her hands, trying to calm her down just enough to sit momentarily still; my palms now wet with her tears. "They don't understand what it's like," she went on.
"It doesn't matter," I said softly—more so the others wouldn't hear my response and question me for taking sides, fully aware that they tried to remain indifferent and preoccupied despite her indictments.
She grew excited at the prospect of having encountered an ally. I was behind on my work; I had a few patients left to see and it was close to 4 PM. My student waited for our next move—I had asked her to time me. My phone buzzed; I dabbed some hand-sanitizer before answering and said, “I'll be awhile.”
Kristie told me about her daughter, whose home she wanted to go back to when discharged. She accused the staff at the nursing home that she'd been in for the last 3 weeks of ignoring her pleas, downplaying her symptoms, and not sending her in to the emergency department (ED) sooner. There was no way she was going back there, she shrieked, half-scared that we'd force her to return, the other half of her feeling brave enough to battle us if required. Our social worker could easily help her find a new place, I convinced her.
My consultant walked in and made herself known to me; I was new to the rotation. She explained the scan findings to Kristie again and went over the fact that her treatment thus far would only delay disease progression for a few months at best; someday the mass in her brain was bound to grow again and symptom control would be our only option. I should have followed my boss for the rest of her ward round to try and form a half-decent first impression, I now realize in retrospect; instead I’d stayed there motionless on my patient's four-wheeled walker, clasping the sticky hands that were still holding onto mine. I breathed deeply, not knowing what to say. Kristie had no such problem—her thoughts were running amok.
She asked me to pull out a file, which had been given to her by her previous speech pathology team, from her cupboard. The first page was titled “Aphasia”; I refused to read further. There's a difference between aphasia and dysphasia, I encouraged. She choked with emotion when she couldn't form her sentences, but trying so hard made her deficit worse. I learnt quickly that it frustrated her when I tried to complete her statements for her. "No, no, no, wait!" she'd yell out, and then 5 minutes later, she would find it in her to say almost the same thing, insistent on stringing her words just that tiny bit differently, as if to make a point. She reminded me of my time in 2010 when I'd fractured my right elbow and required surgery. Writing has always been therapeutic for me, and being unable to write normally had made me feel so devastated that I’d resorted to left-handed dawdling during my 2 months in recovery.
Outside, a light rain fell and the skies were a shade of dark gray. Kristie was still crying inconsolably, her voice resentful and angry. Life had clearly taken away from her the person that had once resided within. I silenced her restlessness quietly but firmly. "Shh! It's okay. Let it go!" I said. "Just be." I repeated myself a few times and watched her calm down. We shuffled through her deck of Bible quotes; I picked my favorite and left it out for her. I found a little handwritten note in purple ink that the palliative care social worker had left for Kristie’s daughter; beneath it, I left a little one-liner of my own letting her daughter know how highly Kristie spoke of her. I then promised Kristie that I'd see her again, but said I wouldn't give her a time. I told her I'd come by anytime and she'd better not be crying when I found her. With childlike glee, she gave my hands a tight squeeze, her eyes lighting up, overjoyed about our secret.
"Sorry that took long," I said to my student as we left. "She needed it," my student reassured me in turn, "and your feet required the rest!" she commented, referring to the ward round that had gone on in segments practically all day.
I next had the opportunity to review Kristie 2 days later. It was meant to be a quick hello to check on how she was doing. She had officially become one of our long-stayers and would remain in hospital until Allied Health would go on to solve the discharge puzzle that she now posed before them. When I parted the curtains to greet her, she leapt at me, taking me into her embrace.
"You came! I knew you'd come " she said. "I saw you again that evening—it was 6:38 PM. " Amused, since I hadn’t seen her since our first meeting, I asked her whether she'd been dreaming. "No, I saw you. You came like you said you would, and I wrote down the time," she confirmed, pointing to the numbers etched shakily in blue ink on one side of her box of Kleenex. "Every day now at 6:38 PM, I'll think of you," she pledged.
"And I'll think of you," I smiled.
"Then we'll both know that we're safe," she continued.
It scared me to think of how philosophical she sounded. I hesitated, thinking to myself that I'm not one to make false promises—it's a fine line between making someone feel better and feeding them empty sentences. The team was doubting her capacity to make competent decisions for herself; yet Kristie remembered who I was, recalled what we had spoken about, understood why she was still here, and could tell me that this was her fifth bed-move in hospital in the last 3 days. She’d been left in a male four-bed bay close to the nursing station due to high falls risk—no, she wasn't pleased.
It was comforting to bump into her on the ward randomly and to hear her proclaim how much she adored me. Training and life are equally tough, and any validation is welcome. Of course, I soon learnt that we were all her favorites.
Sadly, not everything that ensued was smooth sailing. Kristie’s sobbing was still persistent, and then there was this growing element of paranoia. On some days, she referred to us as Nazis blocking her discharge, afraid that she'd end up dying in a hospital bed like another patient whose passing she had witnessed one night. "You're angry with me, too?" I’d asked, tired and hurt.
"No, no, not you, I love you. Don't write what I said about the Nazis on the notes," she’d begged, letting some of her sanity peek through.
That Thursday, I spent my half-day off with Kristie, working out her issues and goals as she saw them. It took 3 hours of concentrated effort and focus which completely drained us both, but we’d finally worked our way out of the maze. She felt humiliated when staff did not give her enough time to communicate. They often talked over her in their hurry to get to the end, which appeared to her as though she didn’t matter. She was experiencing hearing loss which was contributing to her communication struggles. The steroids we had prescribed were worsening her insomnia. She was failing simple assessments and felt incapable of defending herself—a lot of tears were shed when saying this. (I'm afraid I shed some of my own; I kept thinking about my life and reflecting on how having a voice with unaffected speech doesn't always ensure that you're heard, either. Sometimes you're just the timid person in the room who gets walked over by everyone who is anyone. She had no idea, but this is where our common ground had been all along.)
Unknowingly, we had taken away her independence, free will, and sense of security. "What is the use of keeping me caged somewhere to ensure my safety when I have incurable cancer that will kill me anyway? Why won't you give me the freedom to do what I want with the remainder of my life?" she asked. She felt ready to rest her head on her pillow and die. That conversation gave me enough ammunition to find the right people and to deal with her demons in an organized battle that would eventuate in her discharge to a new Catholic nursing home that she liked and looked forward to going into. She would visit her daughter’s home on her days off; it was a happy compromise.
We placed her... and, it turned out, we missed her. Every day at 6:38 PM, I didn't know whether she was thinking of me, but I definitely thought of her. In the months that followed, each day as I walked past the church on my way to work, I recited the same prayer that I had said for her at her bedside while bidding her farewell: “May she remember that come what may, she will always be understood wherever she may go.”
Our story doesn't end there. Two Fridays ago, I was in the ED examining a different patient. As I walked past looking for a stethoscope, Kristie and I laid eyes on each other from afar, both holding our arms out for a hug, exchanging quick hellos as I hurried closer. Kristie's nurse smiled and asked, "Do you know each other?"
"Oh yes, she was my patient for the longest time," I answered. Feeling a tad bit foolish, I asked Kristie whether she remembered our little tale of 6:38 PM—she did! I let her know that she'd been in my thoughts every single day; she promised that I had been in hers too.
Her speech was clearer; her hair had grown by an inch and a half. Pointing to her brain and waving a hand in front of my face as if to dispel my fears, she said, "It's nothing to do with that this time. I came because of chest pain, and they're just waiting on a blood test."
I went back to see her in the Short Stay Unit in ED that evening. The nurses there couldn't stop gushing about her, and I smiled knowingly. I wrote a quick note to her daughter letting her know how amazing I thought her mum was for going about making friends so easily.
An hour later, I was about to check myself out of hospital for the weekend; in one last minute, I stopped to read Kristie's notes. She had undergone a head CT in ED that day to investigate potential absence seizures, and the report was staring at me in the face: her glioblastoma had progressed. My heart and head were in two different places. My head knew this was coming—she'd been off treatment for 12 weeks now, we'd deemed her illness incurable; didn't I know? My heart... it just suffered a silent blow, and then it stiffened. “Her spirit, neither the disease nor this world will ever alter. Amen,” I prayed under my breath.
Most of us are fortunate to take language and communication for granted. Miraculously, the body, heart, and mind manage just as well without. Impossible as it may seem, we create ways to reach out, transcend our differences and difficulties, demonstrate the brightness of our beings within, and truly connect. Connections make life bearable.
*Name and details changed to protect patient privacy.
Dr. Chandrasekhar is a basic physician trainee with the Queensland Health Southside Network, Australia. She intends to undertake specialist training in medical oncology and palliative care medicine. Disclosure.