First Medical Appointment of 2025

After an ER visit over the holidays, I found myself referred to yet another new specialist and the first available appointment was the second of January. So I began 2025 with an eventful visit to a new clinic: Urology Oncology. Sounds super fun, right?! While new doctors, new symptoms, new cancery things isn’t a newsflash in this household, there were several elements of that experience that stuck out like sore thumbs.

If you have been reading this blog for any length of time, you are likely aware that I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017 at the age of 38. Since that de novo diagnosis, I’ve been on seven (7) different lines of treatment. and I’ve been immunocompromised to varying degrees since 2017. Just had a birthday, so I’m now closer to 50 than 40. It’s hard to explain how unsettling and strange it is to be treated in a clinic where the other patients are much closer to my parents’ ages (or maybe grandparents). Again, not a totally unfamiliar experience, but one that affects my medical care significantly, especially since staff are often reluctant to adjust to my different needs and I don’t fit many of the boxes.

The winter (while less frigid here in Florida than elsewhere) is traditionally known as cold and flu season. If the data collected by the CDC is to be trusted (which I do), the surges in infection are pretty similar this winter as they have been in the past; at the same time, applications for disability has increased significantly and some experts believe this may be due to Long Covid. Regardless of what outlet or statistical data one reviews, this is the time of year that can be complicated for those of us who are immunocompromised.

When I walked into that urology oncology clinic, not only did I clock how many people were significant older than I am, I also saw how many people were visibly sick. I don’t mean cancer stuff, but noses running, coughing, sneezing, sweating, shivering, etc. Not a mask in sight, although there were quite a few people apologizing as they sneezed or coughed over and over into handkerchiefs. Third thing I noticed? The waiting room was packed with very few available seats — some of that is exacerbated by the fact that most patients had a caregiver or two with them, doubling the number of people waiting.

When I checked in, a few things happened:

• The staff at the check in desk area are weirdly behind a post such that they have to stand up or shift significantly to see where the patients are instructed to wait (there’s a sign instructing patients). The young ladies who were in this area were having a very lively discussion about their New Year’s experiences and didn’t often take that step of looking to see if patients were waiting to be checked in.
• Once they finally realized I was standing there and I was waved over, it took about 5 minutes to convince them that I don’t have Medicare for the purposes of the visit. It was apparently quite incomprehensible to them that I actually know what kind of insurance I have. While I have Medicare Part A, that only covers hospitalization and if they tried to bill Medicare for an office visit (it’s happened before), I would be caught in paperwork hell for a month.
• When that was sorted out, I brought up that I am immunocompromised, that there were a LOT of sick people in the waiting room with no way to sit by myself and that I needed a safe place to wait — all I got in response were blank looks. I walked in almost exactly at my appointment time (I time it carefully) to hopefully avoid waiting too long in these conditions, but the doctor was running far behind and the parking garage is about a 7 minute walk from the cancer center building, so I couldn’t go back to my car. I ended up waiting in the lobby area for an hour.
• When I was brought back to my appointment, it took me asking 3 times for the medical assistant to wear a mask while we were in close quarters (meaning she was touching me) and she rolled her eyes, scoffed at me, and made me wait while she found a mask. I don’t hesitate to speak up for my safety, but it makes it really uncomfortable to then have to answer personal and private questions posed by someone who has just rolled their eyes and communicated clearly how much of an idiot she thinks I am. It’s hard to fully explain how difficult it is to shift gears and have any sense of trust or comfort with a provider after being treated this way.

Ironically, when the doctor arrived (nearly 95 minutes after my appointment time), since he himself was ill, he wore two masks and stood in the open doorway to avoid sharing the same air as me. Setting aside the confidentiality issues with trying to conduct the maybe 3 minute appointment with the door wide open, the difference between how different people handled being sick was astonishing. He literally embodied “do no harm” and that’s what I told the administration, that they need to take a page from his book for the staff. No one should have to be afraid to get the medical care they need.

Moral of this story?

If you are sick, please understand that you aren’t the only person who is affected. You don’t know if there is someone like me sitting next to you or near you or around someone in your household. A cold or the flu or COVID is much more serious for someone like me and with the typically invisible nature of MBC, it means that people who don’t know me won’t automatically know that I’m not healthy. It doesn’t take much effort to consider how you might keep your own germs to yourself.