Storytime

Posted on November 2nd, 2008 by Cam.
Categories: Let's talk.

I had a chat last week with a friend from chemoclub (gym), just on different aspects of our experience with cancer. She mentioned how some people, when they find out you have cancer, tell you cancer stories.

Now I will tell you up front, I am not a fan of some kinds of storytelling anyway, so I guess I was a bit sensitive before the specific stories about cancer started. My friend at the gym and I have similar experiences when first diagnosed in that some people’s response was to just recall stories about other people who had cancer. It was as if the keyword ‘cancer’ just triggered a barrage of stories that contained the same keyword. She remembers that the stories she heard were not necessarily ones with positive endings. So, after holding myself back for many months, let me express what I think about stories, specifically in regards to cancer.

In the first couple of days after the confirmation I had Multiple Myeloma, my mind was processing every conceivable outcome and emotion while coming to terms with the uncertainty of what treatment I was to face. I don’t know how the mind does it, but there is a lot of logistic detail that is being processed while the body is in complete and utter shock – suffering emotionally and physically from the symptoms that have already set in. It is one of the ultimate overloads.

The response of people around me was incredibly important during this time of course, and people wanted to offer anything they could to help me stay positive or encouraged in light of the recent news. I am sure intentions were good, but when people responded by telling me of their ‘friend who had cancer and they are okay now’ stories, I didn’t find it helpful at all.

In the beginning, it seemed as though some people assumed I hadn’t heard of people who had cancer before this time. More and more people know more and more people with cancer these days, and the experiences and outcomes are so incredibly varied. Initially, the recounting of others’ experiences didn’t really faze me because, to be honest, I wasn’t listening to them. It was just too much for my mind to take in at that point. I already knew that some people survive cancer, and some people do not. I knew that I was going to do either one or the other, but I knew enough about cancer’s lack of respect for consistency and predictability to know that everyone’s experience is different. For every cancer story I heard that had a happy ending, I knew of the stories that were kept quiet. It would be naïve to assume that someone would be fine, because someone knows someone else who had cancer, and they were fine.

In saying this, there were some helpful exceptions. I found it very helpful to hear of people who had the exact same cancer, and that they had made it through 10 years, and were still okay. This was fantastic! Hope had testimonials, and these stories were brief, current and appropriate. In the end, I stated, “I don’t want to hear any stories about cancer unless they are about Multiple Myeloma and positive! Don’t tell me anything else!” Anything else, was just too much.

Another danger with this responsive storytelling, is that it can come across as a distraction from what the person who has just been diagnosed may be feeling. The intention may be to ‘protect’ them from feeling the worst they could feel, but it may result in feeling like the severe reality of the situation is being minimized, possibly trivialized. Comments may be made like, “Don’t worry, Jane had breast cancer five years ago and she is fine now!” The reality is that such a diagnosis does make people worry. This feeling should not be discounted.

For some people, this may not be their point of view. They may love hearing story after story about others’ experience of cancer. I am personally, however, far more in favour of listening to how people feel and supporting them than trying to recall every story I have heard with the word ‘cancer’ in it. I don’t want to come across as wanting to shut people down whose intention is to comfort people after diagnosis, but after talking to a few people who have been in this situation, I think it is worth considering.

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