Post-Cancer Pain Affects Many Survivors, Emotionally and Physically
While undergoing treatment for breast cancer, I stayed away from support group meetings. When I finished treatment, I attended a meeting to speak about inflammatory breast cancer. I went as a favor to my nurse navigators. At the meeting, I met women who had completed treatment years ago. They were regulars at the support group meeting. One of the women who was years out from treatment had on pink ribbon socks. She talked about going through treatment like it was yesterday. That bothered me. It should not have, but it did. And of course, there was "the one"; now I know there is always one who dominates the conversation. She knew more about my disease then I did, even though it was not her type of breast cancer. I did not feel the desire to return. I had never been a fan of support groups, in part, because it was my desire to put breast cancer behind me and in part, because I did not know I needed one.
I had heard so much about this coming "new normal" I would find. It was spoken of like the proverbial promised land of milk and honey. I was ready for it, ready to put all this cancer stuff behind me. In my mind, I thought I would just enter this promised land of normal when I finished treatment. Cancer would be behind me, like it was just a blip on the radar screen of life, right? In my case, that was wrong thinking. The truth is, I had no idea how much support I would need as I realized the new normal was anything but normal. Having been the victim of abuse as a child, I thought I could handle anything. Life had been hard, but hey I'm alive, I 'm doing well, and all is good. I could not see what the future held for my mind as a result of what had happened to my body. When treatment ended, I was happy and healthy and I took most things in stride. That is until I couldn't.
A complicated life was normal to me; this was more than that. This was pain, intense physical pain, with no reasonable explanation. I spent months with excruciating, unpredictable jaw, head, neck, and shoulder pain. My blood pressure would spike, my body hurt, I felt so much stress I couldn't see straight. The doctor said I needed antidepressants. I tried one and had a severe reaction. She said, "Doris, it's like your yin and your yang need to be reset. It's like you are all out of balance."
"OK, then how do I do that?" I asked. "I don't know," was her reply.
My oncologist said the pain was not related to the cancer or its treatment. He thought that because it didn't start right away. The fact that I had severe pain no one could explain created intense fear and anxiety inside my heart and head. I felt alone as I bounced from specialist to specialist, with no answers, except pills I did not want to take. One time I raised my voice with my oncologist, who I loved. I said, "I don't have anxiety, but you give it to me because you can't tell me why I hurt. When will I be normal?"
He said, "If I don't know what normal is, how can you expect to?"
So much for that promised land of the great new normal. Eventually, I found a good counselor. I saw him weekly for a long time. He helped me see that I had been through a lot: a lot before cancer, during cancer and after cancer treatment. With his encouragement, I joined a support group and Bible study for women who had endured abuse. For the first time, in hearing their stories and sharing my own, I saw seeking support as a sign of strength. I understood the value of having people in different stages of healing together in one place.
When I finished treatment, I asked my oncologist what to expect moving forward. His response was, "Doris, right now we are good, but I can't tell you what will happen in two years." I said, "Well you can't tell me I won't be hit by a bus tomorrow either, right?" We didn't have buses in our town yet, so I felt my odds on not being hit by one were good. But the truth is, I was hit by a bus. It was an emotional, mental and physical bus that didn't kill me, but it has made me stronger. I have now learned the value of support for people dealing with cancer, both during and after treatment.
I began working in survivorship at our local cancer center. I was able to help establish that support, even using creative means. While working there, I spoke with a nurse navigator from another cancer center. She told me she had heard my story before. She had one patient who had the same type of jaw and neck pain that I did. I felt so validated, just to know there was another person with the same symptoms. They had not been able to figure hers out, either, but had helped her learn to manage it.
Pain can be a long and late-term effect of the changes in our bodies after treatment. If you are struggling with post cancer pain you are not alone. An estimated 40 percent of adult cancer survivors continue to experience pain after treatment. By reaching out for support you may find others with a similar experience or helpful tips. Search until you find something or someone to help you manage or address it. I have found some relief using a combination of complimentary therapies. It is a struggle, but it has been worth it!