Waiting for…

In my work as a medical humanist, I would often hear cancer patients talk about anxiously waiting for appointments, test results and possible side effects of treatments, as if these were common experiences in medical care.

With these concerns in mind, I offered patients in my Writing is Good Medicine program an exercise on “waiting,” which could help them better understand its effect on their mental and emotional state and, if they chose, could be communicated to the cancer care team.

As always, before putting pen to paper, I explained the rules: Write the first thing that comes to mind; forget grammar and punctuation; and do not erase. I’d like to share what one of the participants wrote, which she titled “Waiting in the Last Seven Years.”

Waiting for my hair

to fall around my feet

 to go down the drain.

Waiting for a report

Good or bad we will get it

Our time is on hold.

For some people it’s

waiting for the other shoe

to drop with a thud.

Waiting for that call

The children waiting to know

Is it good or bad?

Waiting for the hair

to be more than little stubbles

to become real hair.

Waiting for a part

to be put in or taken out

after treatment.

Always waiting now

For one thing or another,

coming or going.

Waiting for exams

Waiting for the next treatment

Waiting forever now.

The silver lining

will show me the way to look

Waiting for new hope.

Waiting for the marks

Tattoos for radiation

Mark forever now.

Cancer turned my life

into a cruel waiting game

But it is still life.

Waiting for new drugs

to kill the terrible disease

There is always hope.

Waiting for the drugs

to put us in remission

To let us move on.

I will live today

I will not wait for someday

I will not waste time.

After she read the poem to the participants, a discussion ensued. Some expressed frustration with delays in scheduling the first appointment with an oncologist to learn about their diagnosis and treatment plan while others suffered through waiting for test results to see if chemotherapy was effective or not. Those who had completed treatment talked about anxiously awaiting test results to see if cancer had returned. It was agreed that waiting appeared to be the norm in navigating an overburdened healthcare system but its impact on mental health seemed to be overlooked.

So, it begs the question, “What can be done about waiting?”

When I worked at the cancer center, I would urge patients to talk with clinical staff about how waiting impacted their emotional state. I would encourage them to ask office support staff if appointments or tests could be scheduled sooner and request being placed on a cancellation list. In addition, I would suggest they ask about when to expect test results and express their comfort level with receiving a phone call or preferring a face-to-face visit. Today, I offer the same advice but add there’s an option of using a patient portal to find test results. However, patients need to be advised that they may misunderstand or misinterpret medical findings, which could make waiting to talk with a doctor even more stressful.

Although healthcare providers have many demands on their time, it’s important that patients open conversations with clinical and support staff about the impact of waiting on their health and well-being. No one wants to be a nag but truthful disclosures may help promote empathy for an anxious patient and, perhaps, lead to efforts to reduce waiting time. Solving the immense challenge of navigating the healthcare system is far more daunting.