Just realized I’ve been gone for over a month! Please forgive me! I’ve started working part time, but am ending up busier than when I was working full time, With good things, though. I did a bike tour, am getting ready to go on a backpacking trip, I’ve been working as a CASA (Court Appointed Special Advocate for abused and neglected children, a volunteer job), will go to a CASA convention in Fort Wayne and will soon be coming to Baltimore for Heat if to Beat It! But today I wanted to talk about finishing treatment for cancer.
I don’t know about others, but my biggest struggle with cancer was after I completed treatment. I began my struggle the day I finished IV chemotherapy.
Interesting, because everyone who knew me thought I should celebrate finishing treatment. I’d made it through the big surgery, the intraperitoneal chemotherapy, the many months of IV chemotherapy. I’d been in treatment for the better part of a year. Now I could go back to my life cancer-free with a greater appreciation of all things.
After my last chemo treatment, I took myself out to eat. I always drove myself to and from chemo treatments and went by myself, so on my way home I took myself to a nice restaurant for lunch. But, I didn’t feel like celebrating when I got there. I felt disappointed, maybe even afraid. I knew the surgery had removed cancer, and the intraperitoneal chemotherapy and IV chemotherapy had been killing any cancer cells that remained. Now nothing was killing cancer.
Truth be told, I almost would have preferred to remain on chemo indefinitely. Once we figured out how to get rid of my chemo side effects, I lived a normal and very comfortable life on chemotherapy. It was only a few hours twice every three weeks. When I finished chemotherapy, I had no more tools. I was no longer fighting my cancer. If any cells had survived, they could grow and cause a recurrence. They could kill me. I’d read my cancer had an 80% recurrence rate.
I began to live a life of uncertainty. I wasn’t really sure if I’d be here and healthy in 6 months, if I could plan a vacation for next year, if I should start school to work on my Masters degree, which would take 3-4 years to finish. I had CT scans at first every 3 months, then every 6 months, and finally just once a year. But for many years, I only felt I could plan my life based on CT scans. If a CT scan was negative, I felt I could plan my future until the next CT scan. I always felt a CT scan was like going to court to hear my sentence. A negative CT scan meant I could continue my life on “probation”. A CT scan that showed more cancer would sentence me to more surgery and chemo and treatment. A CT scan that showed cancer might even be a death sentence. I’ve learned pretty much all of us feel that way about our CT scans. We’ve even named the fear before CT scans as “scanxiety”. I’ve known appendix cancer patients who are in bed for days before or after their CT scans, who ask for Xanax to take around CT scan time.
I understand why cancer patients often start using all of the on-line alternative treatments they read of….raw vegan diets, various supplements and syrups, controlling their thoughts and using “mind body” techniques. When we no longer have any tools, we look for new tools or more tools. I only believe in treatments I can investigate that are proven by research to be effective, so have never used alternative treatments, but I understand those who do. I think it helps deal with that sense of uncertainty.
Over time after finishing treatment I did stop living with that feeling of uncertainty, but it took a long time.
People need to understand that when we finish treatment, we are not done with cancer. We are not back to normal life before cancer. We still need support.
Great post Carolyn. I to have experienced all of those feelings. I try to live my life now with a positive outlook, trying to stay healthy and hydrated each day.