Vulnerability, uncertainty and hope intertwined

March / April 2018   Comments

On the other side of the gurney, Cathy Graham has no idea what to expect during chemotherapy treatment

I drive into the parking lot of the hospital. I can’t decide which parking spot I want. I am on my way to my first chemotherapy treatment and it feels like an out-of-body experience. People are coming and going and I wonder why they are here. As I tentatively enter the cancer treatment clinic, the volunteer greets me and quietly asks my date of birth, with a welcoming smile on her face. Is this a test? Why is she asking? I stumble on the answer, not because I don’t know my date of birth but because I am trying to protect my privacy. She calls me “Catherine,” and I think about my mother — the only other person who called me by that name. I pass the date-of-birth test, make a decision about which side I want my wristband on and am invited to take a seat in one of eight blue recliners, arranged in a semicircle. I envision everyone looking at me and I can’t decide which chair to choose. Bright sunlight is streaming in the windows and I notice that all the chairs face in toward the centre, where nurses are working at carts with computers. My personal and medical information is on one of those screens, and I think about who has access to this information. The volunteer asks me if I need help operating the recliner. I don’t know how to answer her.

The clinic nurse explains what she is going to do and how I might feel, and then inserts a needle into a vein in my hand to start the treatment (I wasn’t able to tell her which hand to use). I wonder if she says the same thing to all the patients or if she is modifying her remarks because she knows I am a nurse. I don’t ask this question; it’s one of many I don’t ask.

I know that I will be mortified if I feel sick and don’t make it to the washroom (wherever it is) in time. About 30 minutes later, my nose starts to run — a stream of clear liquid I can’t stop, and I don’t have enough tissue to wipe it up. I don’t ask for help. Instead, I unplug the intravenous pump and make a beeline for the bathroom while the liquid runs down my clothes. Sitting on the toilet, cleaning myself up, I realize I have to pee — and panic because I didn’t lock the door. What if someone walks in?

Once settled back in my chair, I look at the intravenous setup, the pump and the bags of fluid and think about these drugs in my body, directed at the cancer cells in my blood. I look around the room at the other people in their chairs and wonder about their cancer experience, although I don’t feel any urge to talk with anyone. I notice a young woman in a chair near me and how pale she looks. Do I look like that? I want to tell her how inspiring she was during my first clinic visit. She and her friend were there when I walked into the waiting room, both wearing glow-in-the-dark lime green tutus. I laughed and cried and realized how frightened I was. I don’t tell her this, because I’m afraid I will cry and I’m exhausted from crying.

It is often said that nurses make difficult patients, mostly because they know too much. In my almost 45 years in the nursing profession, I had never anticipated I would be a recipient of nursing care and that issues of trust I had talked about with nursing students would be one of my tests in this journey of transition.

I had made the decision that, unlike my nursing self, my patient self would not spend hours on the net, researching the diagnosis and all the potential treatment options. But how do I trust these nurses when I know about the things that can go wrong? I wonder what it means to be a good patient, whether each nurse has a different definition and whether I will meet their expectations. All I know is that I need to accept help from others, while feeling vulnerable and uncertain.

I watch the nurses watching me as I watch them. What are they looking for? How will I know if I need help? I try to read, do crossword puzzles, but I am distracted by what is going on around me. When a nurse comes to sit beside me, I ask why. Apparently, one of the drugs is so toxic to veins that they must keep a close eye on me for an allergic reaction. I feel sadness mixed with hope, for myself and others.

Four hours later, when the treatment is finished and the needle is removed from my vein, I get up and walk out of the clinic, feeling shell-shocked. I think about what to do with the rest of my day. When no answer asserts itself, I go home and sleep. Later, in the grocery store, I notice the checkout person looking at my wristband and the bandage on my hand. I cover them up. She smiles and I wonder what she is thinking.

Now that this series of treatments is over and I am in remission, I think about what I have learned through this experience.

I am a very private person, and opening up to talk about cancer took time. I struggled with how much to tell my family and friends, while trying to shield myself from their reactions. Being brave is very hard work; crying helped, denial did not.

I am uncomfortable with the language of cancer treatment — fighting, battling — and yet, when someone recently asked me how I am, I replied, “I think I dodged a bullet, for now.”

Placing one’s trust in health-care professionals doesn’t just happen; it is contextual, develops over time and can be destroyed in a heartbeat.

People’s stories can be powerful learning tools; I have offered to be a guest speaker for nursing students to help them gain some insight into what it is like to be on the other side of the gurney.

I am grateful to live in a country that provides public funding for many necessary treatments. One of the drugs I needed was not covered until fairly recently, and I contemplate what I would have done if I had had to pay for it out of pocket.

I discovered, to my surprise, I have nothing on my bucket list and no regrets. I am learning to live with a different sense of mortality and have strengthened my personal and professional support for medical assistance in dying.

This experience revealed that my sense of vulnerability, uncertainty and hope are intertwined. I must learn to live with that ambiguity. I will not find the answer to why this happened to me. However, I do know that if the drugs had caused me to lose a lot of my hair, I would have shaved my head — a good excuse to shop for glow-in-the-dark head scarves.

Cathy Graham, RN, M.Sc.

Cathy Graham, RN, M.Sc., recently retired from her full-time position as a lecturer in the Trent/Fleming school of nursing, Trent University, Peterborough, Ont.

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