It is only in the last 15 years or so that the medical community has paid attention to “survivorship.” As cancer treatments get better, more and more people are living beyond cancer. As a result, more and more people are dealing with the long term physical, emotional, and mental effects of having had cancer. Cancer, especially late stage cancer, fundamentally changes who you are; you can’t go back to who you were before your diagnosis. Cancer doesn’t stop impacting your life just because you’ve finished treatment or your doctor says you have no evidence of disease. For me, cancer changed how I looked at the world. It especially changed how I saw God and His relationship to me. It changed my relationship with the Savior as well. I’m sorry to say that I’m not sure I’d have made those changes without my cancer diagnosis, but here we are. Cancer has also changed my relationships with the members of my family.
Fundamentally, survivorship is about what comes next after cancer. It’s about what long term side effects survivors can expect. The medical community is only starting to discover that many of the treatments used to fight cancer have significant long term side effects. Many of those side effects were unknown because cancer survivors weren’t living long enough for those side effects to present. Doctors are only recently educating survivors on some of those side effects, but it’s important that primary care doctors are educated too. Once a patient has been cancer free for x number of years, their care is transferred back to their primary care doctor, who may or may not be aware that cancer treatments can have long term side effects. By long term side effects, I am talking ten years, or even more, from the end of treatment. Despite the many advances in cancer treatment, much of it is still extremely destructive.
Cancer treatment also leaves its own mental and emotional scars. One such scar is something known as “chemo brain.” Chemo brain is categorized by cognitive difficulties both during after chemotherapy. I was lucky enough not to experience chemo brain. For some people, chemo brain can be debilitating.
Even after cancer treatment is over and one is considered cancer free, there can still be that feeling of “doom.” It’s difficult not to think that every new ache or pain is cancer returning. Suddenly, it’s difficult to differentiate between a normal sign of aging or benign problem and an early (or late) symptom of cancer. It can make you feel paranoid and like you’re overreacting. It’s a difficult balance to find, between being vigilant and overreacting. Myself, I’ve been out of active cancer treatment since March 1, 2019 and I still struggle at times to find that balance.
The last thing I want to mention is making the transition from active treatment to surveillance. Emotionally, it can be a difficult transition to make. It certainly has been for me. In illustration, take my course of treatment. From my official diagnosis on June 28, 2018 until I finished chemotherapy on February 24, 2019, I saw one of my doctors about every two weeks. During my recovery from surgery, I saw someone in my surgeon’s office twice. The first was for staple removal and the second was a check in. While I was actively on chemo, I saw my oncologist every two weeks. I would arrive at the clinic for blood work, after which I would see my doctor and he would confirm whether my blood counts were high enough for chemotherapy that day. It was like that like clock work. Then his office wanted to know if I got sick because that could delay chemo, or worse, land me in the hospital. From June 2018 – November 2019, I had ten separate hospitalizations. So during treatment, you’re under near constant supervision. Then one day, your doctor declares you cancer free and you move to surveillance mode. Suddenly you go from seeing your doctor every two weeks to seeing your doctor every 12 weeks. You had your oncologist and oncology nurses to help you navigate your new medical world, but there’s no one there to help you navigate your new post cancer world. It can leave you feeling adrift. It can be a scary thing, and it was for me. It’s something I still struggle with from time to time. But like so many other things in the cancer world, you learn to live with it. You remember how to put one foot in front of the other and just keep going. Cancer treatment isn’t for the faint of heart. Neither is surviving cancer.