Terms of Engagement

Now the word was out. Two things were happening: people came forward with all kinds of advice and ideas; or they avoided talking to me because they just didn’t know what to say. As I said in my email telling everyone – trust me, I don’t know what to say either.

I’d learned during my hip experience seven years earlier that it was important to set the terms of engagement right up front. Back then, friends, work colleagues and even my family were sometimes eager to share the stories of “Joe’s second cousin’s brother-in-law’s leg was two inches shorter” type of horror stories. I set the ground rules early: no bad news, horror stories of things that went wrong, etc. My circle of support was all about positive energy. If you didn’t have something to share that was about how hip resurfacing was a good thing or worked out well, keep your mouth shut and opinion to yourself.

I was not in denial about the things that could go wrong. Trust me – you sign multiple forms acknowledging that you have been informed of and understand the risks and accept them. You don’t do this once, you do it multiple times with multiple specialists. You are well aware of what could happen to you, the likelihood that it could happen, and the steps that will be taken to make sure it doesn’t.

This, I found, is even more true with cancer. Suddenly people come out of the woodwork tell you their personal or their family’s or friend’s experience, or some story they read somewhere, etc. And they send you links to things, too. This is kinda delicate (as it was in the hip thing, too) – you appreciate the outpouring of support, but I don’t need to hear the horror stories, or the survival rates or the things that went wrong/the things to watch out for (especially the stuff related to lymphedema).

My father transgressed this line the day after I told him about my diagnosis. His next door neighbour had “been through this exact thing six years ago and she said to be careful about …” I stopped him mid-sentence. I explained that her experience would not be my experience. Everyone has a unique experience – their surgery, their recovery, their oncology treatment. Everything today is designed to your unique, specific needs. What happened to his neighbour six years ago was not necessarily going to be my experience. I was much younger, much much much fitter, didn’t smoke etc. – she is not me. So we had the heart to heart about ‘I want you on my team, nothing but positive energy’ etc. And reminded him that I was well aware of the risks and the potential challenges ahead.

Variations on this theme/message have been shared a few times with work colleagues and friends. They all appreciate the ground rules – knowing what’s ok is helpful, and in some ways helps to deal with the ‘yikes, I don’t know what to say awkwardness’.

There is a wonderful set of cards designed by an artist who had cancer that express this sentiment better than I can.

BEING GRACIOUS IN A TSUNAMI OF SUPPORT

Here’s another thing I’ve had to relearn since my hip operation. People really do like to help. Support has come from so many unexpected quarters. Neighbours who were good acquaintances have become new friends. Work colleagues who knew you ‘superficially’ take the time to genuinely chat – asking how you’re doing is the real thing, not just a hi how are ya greeting.

I’ve been fiercely independent for most of my life. I rarely ask for help. I was trained from birth to be self-sufficient. Learning to ask for help, and then letting people give it, was a HUGE adjustment for me seven years ago. Now, I am having to re-learn that all over again. It’s easier this time – getting over the whole pride/independence thing, thank goodness.

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