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What should I say?

On June 19th, 2013, I posted the video “Dumb Stuff People Say to People With Metastatic Breast Cancer” from I Hate Breast Cancer on theTelling Knots, the 30% Facebook page. An interesting conversation followed. My friend Saoul from Italy wrote:

“…not everybody is able to convey love through their actions or words. I, for example, am not. It’s not that I don’t care. It’s just that I’m not good with words. I am a little better with actions, but still, not the best “love-conveyer” ever. When my friend Laura was diagnosed with metastatic cancer, I just asked her what she wanted me to do. We had the kind of relationship where I was always making fun of her and she of me. She asked me to go on being the usual jerk I always was because she needed to laugh more than ever. She and I had been friends for ages, so asking her was only natural. The point is… What when someone you’re not that familiar with tells you? What if a colleague tells you? What if a new friend tells you? That’s where I’m lost for words. What can I do?”

That’s a great question, Saoul. Thank you for being brave enough to ask it (and for giving me permission to quote it here). I’ll try to respond in a general way.

I guess my first thought is that you and Laura are a great example. If you already have a relationship with someone who then becomes ill with metastatic cancer, then just keep being their friend. I still tease my friends and they still tease me. I haven’t become some sort of porcelain doll.

Some people fall away when we become sick. They become afraid or challenged or deeply worried  or even very, very embarrassed and lost for words, so they just stop coming around. Please try not to do that. It’s okay to say, “I don’t know what to say”. It’s more than okay just to sit with a person and “be present” to them. (If “being present” sounds strange and mystical, you might want to look at this blog post from Katie O’Connor at the Sane Girl’s Guide.)

Ask questions. The first one should be “Is it okay for me to ask you some questions about this?” Not everyone feels like answering questions all the time. Especially if your friend is newly diagnosed, he or she may still be coming to terms with all the information. In this case, Google can be your friend, but google wisely. Go to medical sites or national/local cancer association sites as a first stop.

Take your cue from your friend. If they seem willing to talk about their disease, their treatment, their life, their death… go ahead. But take care of yourself, too. If you start to feel overwhelmed, go ahead and tell them, “That’s too much for me right now. I know that you are the one with the disease, but I don’t want to lose you and I am terribly sad. Can we talk more about this another time?”

I guess the golden thread through all of this is Be yourself and be honest.

If the person who is ill is a work colleague or more casual acquaintance, a simple “I was terribly sorry to hear about your illness” is thoughtful and kind and no more is required. If they are interested in more, they’ll let you know.

The person with metastatic cancer does not have any more social rights than anyone else. We do not have the right to make you feel uncomfortable intentionally.  We do not have the right to make undue demands on your time, energy or emotions. Emergency service providers (police, ambulance, fire) and first aiders are taught to take care of themselves first (helmet, gas mask, safe environment, whatever is called for) so they can be free to help the victims. The rescuer can’t help you if she is trapped under a falling building. If you want to be a good friend to us, please take care of yourself first.

As the person who is living with metastatic disease, I’m a bit at a disadvantage in discussing this. I’d love to hear from some of our “fearless friends”, relatives and care givers on this question.

Thanks again, Saoul, for asking.

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4 Responses

  1. Paula says:

    This is great advice Knot. Just as being the patient is hard, I’m sure being the friend is too. Thank you again for sharing your experticise.

    • Knot Telling says:

      Thanks, Paula, but I don’t have any expertise! This post is due almost entirely to the good ideas of my friends.

  2. Maxine D says:

    Taking care of ourselves is imperative if we are going to care for anybody else long term – hence why I now do something I said I would never do, and go to the gym to get fitter!

    As far as what to say – I am afraid I tend to use black humour if it is somebody I know – otherwise I too tend to the practical actions rather than words.

    Blessings and Prayers
    Maxine

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