The only thing worse than having cancer is having to navigate the health care system.
No, that statement was no mistake. In my experience, booking appointments, visiting the ER, arranging follow-up, getting test results, being an advocate for yourself, liaising with nurses, doctors and administrators, is a bigger burden to carry than cancer. Because the only thing worse than knowing, is trying to find out.
I had a conversation with my oncologist today over a concerning symptom. He asked flat out, "Do you want a chest x-ray?" I excited at how easy it would be to put my mind at ease, but heard my voice saying "Well, I don't know, I'm not really sure if that's how it works...." Why wasn't I saying "YES! Put my tax dollars to work and help me sleep tonight!"
The same thing happened before my diagnosis. I laid in an ER bed for over 3 hours before deciding that my shoulder pain wasn't worth all that time and effort investigating. So, I left without seeing the doctor. (Luckily I followed up with my family doctor and eventually found the large tumour occupying my right chest cavity.)
Nothing has changed in the past year - I hate making appointments, advocating for myself, and being diligent about follow-up. Being a patient is stressful.
But, I'm learning how to manage the stress. I got my chest x-ray today (mere moments after the phone conversation with my doctor!), and will have the results as quickly as tomorrow.
Although it's tempting to ignore my symptoms and stay out of the hospital system's chaos, in the end, I'd rather know for sure than lay awake at night wondering.
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