“Were You Late?”

by Ruth ArnoldPatient, Metastatic Breast CancerAugust 1, 2022View more posts from Ruth Arnold

I had been waiting in the white room for 45 minutes. I had left on time, gotten to the giant facility on time, and taken a full day off of work at a crucial time to make sure I was there. My oncologist is hard to get appointments with. That’s a huge understatement.

My blood draw had gone well. One stick. Not always the case. I was on time, anxious and waiting. I was waiting. I was waiting. 45 minutes in the white room. 45 minutes with the book I could no longer understand when I read it. 45 minutes with a phone that had nothing new to tell me.

Finally, not wishing to be an annoying jerk at the breast cancer floor of the women’s hospital, I stuck my head out and saw a few nurses. I asked as passively as I could, “Is Dr. T running late?” They looked at one another. They asked my name and assured me they’d check.

Thirty seconds later, Dr. T. entered the room. Her first words were, “Were you late?”

Really? Not, “Sorry. I had an emergency.” Not, “I apologize but was not told you were waiting.” Or the one that would have allowed us to remain together for sure, “I’m sorry. I know your last MRI was nebulous so you must be anxious already.” None of that. The onus was on me. I must be the problem. And, this wasn’t the first time appointments seemed to be merely suggestions of time to the office staff and doctor, while they were unchangeable for me. My running late would cost me extra money. The doctor late? Even if for no reason? Not their problem.

Like I said, I have a nebulous MRI in the works. The word “suspicious” appeared and it scared me. It should. It could very likely mean that my metastatic breast cancer is no longer stable. I’m a widowed mother to a 17 year old and a 21 year old. And oh yeah. I like being alive. So, I’m in a spot I’d rather not be. I’ve been doing well for three and a half years but now, who knows? Welcome to living with cancer.

I left the appointment feeling disregarded. Because I was. I was completely forgotten by schedulers who had literally one slot open for this doctor the entire month, making me lose a day of work. The nurse who walked me in, took my temperature, pulse, blood pressure, and weight had moved on to other things and forgot me. My oncologist, rather than wondering what had happened, could only ask me what I’d done to allow myself to be so overlooked at such a distressing time.

I was too subdued to organize my thoughts. But now I understand. I can take a step back to tell myself what the problems are with this and the other appointments that are hard to get, rushed through, forgotten and kept waiting for so so long. Appointments with my oncologist are part of my overall care, at least as much as scans, procedures and medicines are. And my appointments are without care.

Fifteen years ago I was a woman with children ages two and five and had two surgeries, six chemotherapy treatments complete with baldness, and 30 radiation treatments, all to eliminate cancer. This woman now has a recurrence of breast cancer in her liver, and she deserves more. She just does. I just do.

I need to be done with missing days of work only to be forgotten. I need to be done with phone calls asking me to switch my date after I already put in for the day off. They need to stop reprimanding me for seeing the nurse practitioner too much rather than seeing the doctor. Never mind that she has more open slots and frankly knows who I am and asks about me in three dimensional ways that show she really knows me and even kind of likes me.

I need to be done with the facility that I assumed the first-in-their-class doctors work at. The place that has state-of-the-art technology. The multi-level parking garage that costs $13 with my patient discount. I’m tired of making time for the hour-long drive to get to a place that doesn’t regard me as necessary to be kind to. I need to not feel like I’m interrupting a busy person with my pesky cancer.

So, I’m done.

I live right by a suburban cancer center that I didn’t choose to stay at after a consultation three and a half years ago. Well, I’m going to go now. I believe I’ve had my last appointment at the giant downtown center. Today is a Saturday, so I have to wait. Come Monday, it’ll all start. I’ll keep my MRI appointment with the giant city of a hospital, but the images and discussions of what they mean and what is next will be transferred to a smaller place.

It’s closer to my home. I won’t have to miss work. It’s $3 to park, not $13. And I know from others that they will talk and listen. They will keep appointments. They will regard me as a person with cancer and not just a cancer case. I hope this is all true. I need it to be true.

I am feeling stronger because I’ve made a decision. It’s a hard one. But thinking of living beyond this change has brought me calm. Sometimes one’s anxiety is only recognized once you figure out how you’ll feel if you change something. This change will help my overall well-being and hopefully keep me on track to continue life with cancer.

I’ve been torn about how to end things with my big shiny cancer hospital. I’ve wondered what to say to my busy oncologist who’s known me for so, so long. What do I say to the nurse practitioner with whom I actually have more of a relationship?

I was talking with my 17-year-old son about how to let them know. Here’s how that went.

Me: “I can’t just ghost them.”

Son: “Why?”

And that’s all it took. He’s right. Why? Why can’t I just go? Will they even notice?

I don’t need to write a flowery note that says, “Thank you but…” I don’t need to blame distance or the parking garage. I don’t need to make them all feel better for being so disregarding with me so, so many times. Because ultimately the reason I need to go is because of a person who asked a widowed woman with stage IV cancer and nebulous scans after forgetting about her for 45 minutes, “Were you late?”. This isn’t a place that I can trust to really care.

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