While I Appreciate the Concern, Think Before Speaking to Cancer Survivors

I know several of us bloggers have written articles about what not to say to cancer survivors. I want to write in more depth here about why some of these innocent comments can be annoying or even hurtful.

When I explain to people that I have a limited amount of time to live, the reply is often, “We all know that we can die tomorrow.” Yes, I am aware that life is a crapshoot and any of us can be gone in an instant through a sudden brain aneurysm or a fatal accident. I try patiently to explain there is a difference between the possibility of being in a fatal accident and a doctor sitting down and giving me a finite number of weeks or months or years to live.

The fatigue comments are the most annoying. I get remarks like, “I get tired and have slowed down since I am older.” This fatigue that many of us cancer survivors feel is like a heavyweight on us. We never feel better after a “good night’s sleep.” A quarter-mile walk for us can feel like a marathon. It is constant and heavy and we know it will never go away.

Another misconception is that our treatments will cure us. Well-meaning people tell us that they are “glad you are all better.” For many of us chemo, radiation, immunotherapy and other treatments are not curative, but only slow down cancer. And we have constant side effects that often linger with us for a lifetime.

Another remark that surfaces constantly is “You look great and I cannot believe you are sick.” I know this is meant as a compliment, but sometimes when I am told this, it is taking every muscle in my body to just keep my eyes open.

Recently, I was pondering whether or not to get a bone marrow transplant. Several people said, “Oh make sure to have it because it is a cure, and we want you around for a long time.” The reality is often these transplants do not work, and it takes at least a year to recover and there can be terrible after-effects. Sometimes the entire process has to be done again. Since I have an immune deficiency it is even more dangerous for me. It may prolong life in some cases, but it is a different decision for each person.

Sometimes the remarks are about the side effects of treatment or chemo. When I mentioned to a friend that my hearing got much worse she said, “Well can’t you get stronger hearing aids?” Anyone who has these devices knows that no matter how expensive or strong, they can never be the same as your hearing.

The last thing people say is a true compliment and I take it that way but it is a double-edged sword. “You are so strong and brave – I could never go through this.” There are days I feel depressed, down and weak. Honestly, if most of you were fighting cancer you would get through it too. We do not have a choice; the human spirit is indomitable, and most of us have a strong survival instinct.

These are all things that are said to help and not to hurt. But I wanted to explain further why we can get short with people saying these things. However, believe me when I say I appreciate the love, concern, prayers, and yes, remarks. You show me how much you care and that means to the world to me.

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