Marissa is a 40-something "flattie" in sunny SoCal living with metastatic breast cancer, her boyfriend (and high school sweetheart) and the memory of her not-so-mini schnauzer, Heidi, who was taken too soon by canine lymphoma. She enjoys reading, stress baking and roller skating. She hopes to inspire others with her stories about life with cancer.
Overdue reminders are often reminders of where we are on the cancer journey.
How many times have you looked at your patient portal and seen the reminders for unwanted or unnecessary medical tests? Each time I open mine there’s a reminder for an overdue mammogram. I had a double mastectomy over five years ago now.
There are no mammos left to gram at this stage of the game. I once tried, unsuccessfully, to have the reminder removed but no one I spoke with could figure out how to fix it. The other reminder I get is for cervical cancer screening. I had a total hysterectomy more than three years ago and have zero female parts. No cervix here, nothing to screen for. I joke the medical profession is taking me apart from one piece at a time.
Another oddity is that I have been pregnancy tested post-hysterectomy prior to surgical procedures. I understand they are just following protocol, but really?? I have no parts. For those in the back of the room, I cannot possibly be pregnant. It would seriously be a miracle, one for the medical journals. I am missing my ovaries, uterus, cervix, fallopian tubes—all of it. I had the works removed.
Just recently my boyfriend accompanied me to have a Port-a-cath placed. As I checked in to the hospital that day I needed to use the restroom, as we were in a hurry to get to the hospital since no one called me the day before to tell me I needed to arrive two hours early. That is another story all by itself. I digress. I asked the woman who was taking me back if I could stop to use the restroom before she took me back. Without consulting my chart or my history she immediately says no, she will need a urine sample first. I rather abruptly said, “No, I am not pregnant. That won’t be necessary. I’ve had a hysterectomy.” She didn’t force it and my boyfriend was rather surprised I knew what was coming with the urine sample. It’s not my first rodeo, unfortunately.
The other thing that really bothers me is when something mistakenly ends up in my chart. When I was very first diagnosed with metastatic breast cancer my first oncologist somehow had me confused with another patient. I clearly remember the appointment where this oncologist was discussing cancer that was found in “my bones” on the scan “I had.” At that point early in my diagnosis, I hadn’t had the scan she was referring to and told her so. To this day I have incorrect records that seem to follow me around wherever and whenever I see someone new, creating confusion and frustration.
I keep a journal of every appointment and procedure. Even if it’s only a few words summing up what occurred. That way I am able to keep better track of my own history and can speak up if and when I need to. It is so important to be your own best advocate and speak up for yourself, even when it feels like it’s a full-time job.
I believe it’s better to catch those mistakes early and have them taken care of than to have incorrect records keep turning up like a bad penny. Rushed or not, mistakes do happen, and no one knows your history and what parts you are missing better than yourself.