A cancer survivor describes the agony of experiencing side effects that never go away and how she lives with them.
I think most of us cancer survivors will agree we are grateful for every day and rejoice if we are in remission. When we are told we have NED (no evidence of disease), we want to party!
What we seldom realize on this tricky cancer journey is that some of the side effects are permanent. Breast cancer survivors may mourn the loss of their breasts forever. People with cancer of the stomach, esophagus and digestive system often have to eat small meals and experience diarrhea for the rest of their lives. Many lung cancer patients are permanently short of breath. People with metastatic breast cancer never know when cancer will hit next and often experience broken bones and tremendous pain. The list goes on and on.
I was naïve when I was relieved because my treatment of a rare blood cancer would consist of 10 years of oral chemo and shots. I did not have the burns of radiation, the IVs of chemo or any surgery. I considered myself lucky.
Unfortunately, I did not come off unscathed. The lingering fatigue still drives me crazy because I want to accomplish so many things before I pass. I had raging diarrhea the entire time I was on oral chemo. My digestive system has never been the same and I take medication for esophageal ulcers.
However, the absolute worst side effect has been a permanent hearing loss. I was already hard of hearing at birth with a moderately severe loss and had carefully preserved my remaining hearing for over 60 years. I was involved with support groups and conventions for people with hearing loss for over 30 years. I even learned sign language and have friends who are deaf. However, none of my family and only a few friends know sign language.
Going from severe to profound loss was far more devastating than I ever dreamed. My life changed in so many ways. I can no longer use a conventional telephone with my hearing aids, but need to use captioning or direct streaming into my aids. I never watch a television show or movie that is not captioned. I use a transcription service on my telephone when I am facing people with masks. These masks are necessary but a nightmare for those of us with hearing loss.
The biggest and hardest change has been my social life. I avoid large gatherings like the plague. Of course with COVID-19 this affected everyone for a while. All of us hard-of-hearing people will tell you the ability to drown out extraneous noise and concentrate on the person in front of you is gone with a hearing loss. For many years I have avoided noisy restaurants and try to go when they're not busy. If a booth is available I will take it, since it protects sound better. Now I cannot go to any large party and hear even one on one. I went out recently with three friends and was unable to follow the conversation. By the time I figured out who was speaking, the next person was responding, and I got lost. However, when I explained this to them their immediate response was “Why didn’t you tell us sooner?” But I hate to ask. Once they slowed down their speech and turned their lips to me so I could lip-read, it was so much better! I went to a social gathering around a fire pit and left early, because once darkness descended I could not even lip-read the person next to me. At a retirement party, I could not even hear the server because of the noise and came home in tears. In church, I can hear the pastor, but not the congregation. The times I have come home crying have been frequent and sometimes I just want to stay home and hide. But this is not my personality either. I did enough of that with COVID-19.
I think it is hard on all of us cancer survivors when we tell people we are in remission or NED and they say how wonderful that is. They're right but most of us know our bodies will never be the same again. We feel betrayed and are trying to cope every single day. I joke that “it is better to be deaf than dead,” but I still mourn the loss of my additional hearing. We are all changed forever and mourning the loss of life before cancer. What we need to do is hold each other up, listen to each other, and savor every day.
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