As we approach the New Year, I am trying to remember how I felt my first New Year’s Day after my cancer diagnosis. I only remember I lived in fear of recurrence. For a long time after my diagnosis and treatment, I was technically cancer free, but I was unable to even say the words “next year”. I never planned my future beyond the next CT scan, which would either give evidence that I was still cancer free or that my cancer had recurred. If it recurred, I didn’t know what my chances of survival might be. I was terribly afraid of getting my CT scans done, and they were done every 3-6 months for a long time. I was even afraid when they went to annually.
It made me feel better when I learned that all of us have anxiety before CT scans, we’ve even named it “scanxiety”!!! I felt badly about my anxiety, until I met people who have their scans and then stay in bed for days until the appointment when they get the results. Or who need to take Ativan while waiting for results. I could so sympathize! I’m a nurse, and I wasn’t about to wait a week or two until I had a doctor’s appointment to learn of my results, so I always went to the medical records department of my hospital and signed a release for my scan results the day after I had the scans done. I may have even gotten the results before my physician! Anyone can do that, your medical reports and records belong to YOU! Not to your doctor. You can go to your hospitals medical records department and ask for what you want at any time, you just have to sign a release. I usually read my results in my car in the parking lot. Yes, I was anxious, but it was anxiety for a much shorter period of time. Luckily all my scan results were normal. I was and still am cancer free.
I did after 9 or 10 years stop getting the CT scans altogether. I know it was recommended I get CT scans yearly for life as some have had recurrences more than a decade later. But I understood recurrence was most likely within the first 3 years, and I didn’t know if the radiation from the scans represented a risk, but I also knew I was tired of living with “scanxiety”. I probably still feared recurrence at nine years.
I don’t fear recurrence of appendix cancer now, though I know as I get older, it’s not impossible that I might get another primary cancer, say breast cancer. I did for many years get all my cancer tests done in a single week, PAP smears, mammograms and CT scans. Just wanted to get cancer testing out of the way. As a nurse I know the biggest risk for cancer is aging, and all of us, if we are lucky enough to live that long, will age. It made me kind of depressed for awhile…remember when if you survived cancer for 5 years you were considered “cured”? Now the word cured is never used. At 16 years cancer free I am just in remission, not “cured”. I’ll never be considered “cured”. I remember really wanting to hear that word after I was diagnosed.
But I do now greet every new year as another gift, a time to even start new again, though I admit most of my life if I’ve made New Years resolutions, I’ve made them in May, seemed spring was a better time for new beginnings?
I wish all of you a great New Year, and I’m here if you ever need a sounding board! You can email me at carolyn@apendix-cancer.org.