A Low Priority
After He Said Cancer | A Memoir
“Maybe they aren’t coming back,” my husband said.
I was starting to get the same feeling. It had been 15 minutes since the doctor had left the room and promised to send in a nurse to help us.
“Let’s wait a little longer,” I continued. “We will get better service here than if we request help through MyChart.”
The breast cancer doctor never responded to questions in the online patient portal. The team nurse responded with a typical answer that we were to hold the question until the next appointment. MyChart was a dead end.
It was understandable. Their patient panels were overloaded. The breast cancer team was overworked. Responding to a question posed by the patient’s caregiver was the last thing they had time for.
I still hoped that a nurse would come in, take my hand, and recommend a support group for caregivers or wives of men with cancer. The anti-depressant that I was taking and the grief therapist were one part of the equation, but they weren’t enough. I wanted — no needed — to connect with someone who understood both the cancer AND the grief journey.
But the last words of the doctor weren’t reassuring. As she pulled the door open to leave, she said, “Let me know if you don’t end up getting connected.”
Oh boy, I thought. You don’t trust that your team will deliver on this support group piece.
It surprised me. This should be bread and butter for a cancer center. For every one of the thousands of patients streaming through this cancer center, there was a caregiver. A dozen caregivers must be in the clinic right now. I could almost guarantee that the mental health of these caregivers was not stellar.
They MUST have caregiver support groups for relatives of cancer patients, I thought. I refused to believe that they hadn’t invested in supporting the mental health of their patients and caregivers.
I brushed away the negative thoughts and let my mind wander. The picture on the wall was slightly askew. Should I straighten it? Were the medical gloves in the glove box running low? A few “Mom” thoughts invaded my stream of consciousness. Write in the volleyball games on the home calendar. Was there an email about the dog needing to get a vaccination update for the dog walking group?
Meeting a nurse in person would be so helpful. If we met face-to-face, they might go the extra mile to help me. Which caregiver support groups did they offer and which one would she or he recommend for me? I couldn’t find them online and assumed that they must not make them public.
The minutes ticked by. Next to me, my husband’s breathing was audible and I heard him sigh. He wanted to go home and his patience was fraying. The 20-minute wait time was starting to push my patience too.
Nursing teams were busy and overworked, almost as a rule. On a typical day, the nursing team in our clinic would triage hundreds of patient messages and calls, meet with patients, provide teaching, and coordinate complicated care plans. Lunches were often spent on the computer responding to patients. The 8-hour workday was a “suggestion”, and they would often stay late to care for a complicated patient. They were a big part of the glue that holds a medical system together.
I was excited to join the support group. My dream was to meet the wife of another male breast cancer patient, who might understand me. Had she also grieved the loss of her future with her husband, I wondered. Did she and her husband have young children like we did? How had they told them? Had they found a clinical trial for him to participate in?
Neither my husband nor I said anything. We weren’t in a particularly talkative mood, and I was feeling tired from the weight of my grief. Every now and then, he squeezed my hand while I stared at the wall.
“Should we just go?” my husband said. “We can communicate with them through MyChart about the support group.”
“They won’t help us through MyChart,” I countered. “We both know that. They’ll just tell us to wait until the next visit.”
Even as I said it, guilt began to wash over me. I wasn’t their highest priority. Sometimes clinic days were so busy, I hardly sat down, and the nurses didn’t either. They were running from room to room.
Why should they help me at all? I didn’t have cancer. I didn’t have low blood counts from the chemotherapy. My survival wasn’t on the line. They were overworked and understaffed. The caregiver wasn’t their immediate concern, and I was honestly, a low priority.
I got up and went into the hallway to find a medical assistant.
“Excuse me, is a nurse coming?" I asked. “I believe the doctor was sending in the nurse to help connect us with caregiver support groups.”
“I will check for you,” the medical assistant said and turned to hurry back to the nursing office.
Someone out there must understand me, I thought. I can’t be the first person to go through this much sadness and pain after a loved one was diagnosed with cancer. Why wasn’t it easy to plug me in to a caregiver support group? This should have taken three minutes.
I returned to the patient room and sat down. My chest was feeling heavy and I was starting to think that we would leave empty handed. Then, what would I do. How would I ever find community?
A few minutes later the door opened slightly. The medical assistant poked just her head through the door.
“The nurse doesn’t know of a caregiving support group, so she will send you a message through MyChart,” she said. The door closed before I had a chance to respond.
I am alone, I thought. Despite the caregivers all around me, I am truly alone.
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If you are interested in reading more about caregiving, I highly recommend these writers, who take this conversation to another level:
1.
2. - The Future Widow
3. - The GenX Sandwich
4. - Letters from the Sandwich Generation
5. - Sandwich Season
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“ They were a big part of the glue that holds a medical system together.” Very true!
My observation as a patient, and now as a volunteer counselor, is that there are not enough oncology nurses to go around.
Ratios have increased substantially in recent years, stressing the staff.
I’m not sure how that will get fixed. Will new technologies help?
Oh friend. I am so very sorry this was your experience and I am glad you have found a little community here.
I never wanted to go to support groups because I figured it would be a lot of spouses and I would be one of the only daughter caregivers. In hindsight I wish I had tried harder to find something. Thanks for your honesty and vulnerability.