How do you continue a relationship with your oncologist when they don’t want one with you?
Two months after wrapping up treatment, I moved halfway across the country. Maybe that was a bad move, but my team knew it was coming over a year in advance. We regularly discussed what would change and who needed to be contacted. While I focused on finding a job in a new state that would have good insurance, my oncologist team was supposed to work on the search for a hematology-oncology partner in the Midwest.
One of those things happened. I found a job.
Moving away from my family was terrifying enough, but leaving the people who literally saved my life felt impossible. I felt like a safety net had been removed. I was now free falling (at a very fast pace) to a hard cement landing pad, and no one would be there to clean up the mess. It was overwhelming.
My oncologist leaned on me to check in and set up appointments – which seems reasonable but when you’ve gone two and a half years of hand holding and having your doctors book your appointments it was a bit overwhelming.
I went from this strict protocol that told me when to do everything – to having complete freedom over my medical care… and it wasn’t as freeing as one would think.
I couldn’t make my first appointment because the timing didn’t work out. When your oncologist works limited days and you have a job where you can’t travel whenever you want, timing is hard. Luckily I took my care into my own hands and found a clinic to draw my blood.
I’m not a blood technician, but I know which tests to order and can fortunately forward those results on to my oncologist. From years of looking at my blood results, I know a bit of what to look for, so it can be slightly reassuring just to have my eyes on them before I even hear back from the old gang.
But time passed, and like a once hot flame from Tinder, my oncologist team faded me out.
After four months of not seeing my oncologist, and learning my insurance would not cover care in a different state, I realized my oncologist had officially broken up with me. I felt like I was floating on a raft in a giant ocean while hungry great white sharks circled me. I felt like I hadn’t been given any tools and was just thrown into the wild and expected to return to my previous life.
I was expected to do research and find a new team who would somehow be able to pick up where my old one left off. But it’s kind of hard to find a team when you’re not sick – nothing is technically wrong with me (minus lasting side effects from chemo). The follow-up is purely preventive. But when I got sick everything happened so quickly. I didn’t have a choice of the hospital I landed in; I didn’t need to do research on where the best care was – everything just happened.
I don’t know what to do now that the only cancer team I knew has left me.
Of course, my oncologist didn’t mean me harm with the fade out. My team knew that I needed to find care where I lived – and that (because I hate change) I would do everything in my power to avoid finding a new team. But when forced with having a team or not — I’ll always choose to have one. No matter how many stressful nights of searching for a potential superhero oncologist to take on a girl who is just looking for a follow up every once in awhile.