One of things that struck me throughout my breast cancer treatment was what people said to me. I had an awful lot of very nice things said to me. Gorgeous, lovely, kind, supportive, empathetic, delightful, wonderful words spoken from the bottom of the heart. Words which made my heart swell, my face smile and which carried me through my treatment from the day of diagnosis to the end of a very difficult period of treatment. Words which continue to give me a warm fuzzy feeling and which help me now as I make my way through the tricky post-treatment period.
But then again, I was also struck by some of the other things that people said to me. Some of the not-so-nice things. To be fair, I expect that most of the time it was because they didn’t know what to say: they may have been uncomfortable around cancer; they may not have had any experience of talking to someone with cancer; or they may have felt awkward around a cancer patient. But, whichever way you look at it, I had some inconsiderate, stupid, insensitive, thoughtless things said to me. Some things I let wash over me with a roll of the eyes and a little sigh, whilst other things have stayed with me, nibbling away, clinging on and not letting go.
So, I have taken it upon myself to use every opportunity I am given, to give guidance to people about what, and what not, to say to their friend or family member with cancer.
Let’s start with the easy bit. There are three phrases that you can say, all with their own variations, but basically as follows:
1. “I am here to support you no matter what.”
2. “I don’t know what to say.”
3. “Tell me what I can do for you.”
Simple. Easy. Straightforward.
And now onto the things NOT to say.
1. ” My aunt/friend/neighbour had breast cancer … and then she died.”
I thought I would start with a popular one. I think this has something to do with the inane need in people to find something in common with whatever someone else is going through. Often, I think mouths work faster than brains. You can see someone’s brain catching up with their mouth at the point where they come to the death in the story: they realise that the story doesn’t have a good ending but they have got so far in the story that they can’t just stop mid-flow. Please think before you speak – we don’t want to hear these stories.
2. “If you had done X, Y and Z/ not done A, B and C then maybe you would not have got cancer.”
Actually, no, it doesn’t work that way. Yes okay, there are some types of cancer which are scientifically linked to certain lifestyles (like smoking and lung cancer) but on the whole, cancer is indiscriminate and down to bad luck. It is bad enough that us cancer patients constantly (but to no avail) feel guilty and ask ourselves these types of questions, we don’t need anyone else piling on the guilt.
3. “Eating A, B, C can cure cancer.”
NO. IT. CAN’T. Eating a healthy diet is incredibly important. But not because it can cure cancer. It can’t. Our oncologists, breast consultants, doctors and nurses are not giving us chemotherapy, radiotherapy and all the other treatments for the fun of it.
4. “If I was in your situation then I would….”
But (luckily for you) you are not in my situation so it’s probably best if you don’t try to second guess what you would do (unless of course, I specifically ask for your opinion where you would need to put yourself in my shoes).
5. “It’s only hair.”
Yep, you can say that because you haven’t had to go and shave all your hair off but losing our hair is incredibly traumatic for many reasons: there is an association between the baldness and death; it can mean a loss of our personal identity; we can no longer pretend that cancer isn’t really happening once we lose our hair; and baldness tells the rest of the world that we are sick. Some of us feel defined by our looks so that we feel the loss of our hair can change who we are. Whatever the reason, or reasons, losing our hair and going bald is a pretty big deal.
6. “But breast cancer is a good one to get.”
No, it isn’t. No cancer is a good one to get. All cancers are life threatening, have horrible treatment and the chance of recurring or spreading (I won’t go into the statistics for someone with primary breast cancer developing secondary/terminal breast cancer – but let’s just say it isn’t a statistic that any of us are happy with). And it is not a who-has-got-the-worst-cancer-competition.
7. “You look well.”
Please don’t say this. I know you mean well and you are trying to make a positive remark in a horrible situation. But I am not well and the chances are that I don’t look well. And I really don’t want to have a conversation focusing on my looks when I look like a bald, eyebrow-less, eyelash-less, puffy, red-faced zombie.
8. “Sorry I’ve been rubbish and not been in touch” or, “Sorry I haven’t been here for you, but I have had [X/Y/Z] going on in my life and just been so busy”.
Have you been dealing with something as serious as a life-threatening illness and all the emotional and physical crap that a diagnosis and treatment brings? No? Well, I could have done with your support, maybe a text or a call or a note through the post. Something to tell me that you cared about me and that my existence matters to you.
9. “You will be back to normal soon.”
Unfortunately, no, although there is nothing I would like more, I probably won’t get back to “normal”. So much changes during cancer treatment: I look different, I feel physically different and I have changed mentally. Having faced my mortality directly in the face, I am not sure that there is such a thing as returning to normal. Yes, things will improve, a recovery of sorts will be made, but I’ll never go back to the way I was before. And that makes me really sad.
10. “If it was me, I wouldn’t want to be defined by cancer.”
I thought I would end on this belter of a comment. One that was said to me as we ate dinner around our kitchen table with friends. I had cancer. But I tend not to talk about it with family or friends. I don’t bring it up in conversations. However, cancer is a big deal. It worked its way into every single aspect of my life. I can’t help that. And because it was so awful, I decided to do something to help others who are going through breast cancer treatment by setting up my website and writing articles to help others who are going through the same thing. That doesn’t mean that cancer defines me. What defines me is that I am a mother, a wife, a daughter, a sister, a friend, a lawyer, and now a writer, a blogger and someone who wants to help people who are going through breast cancer.
Sara is the founder of www.tickingoffbreastcancer.com, a website dedicated to helping people through their breast cancer treatment from diagnosis to living life to the full once treatment ends. Aged 42 when she was diagnosed with breast cancer, Sara decided to set up the website to support those who do not know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online; those who may be scared to go online for fear of what they might find; and those just looking for a comfortable, safe, calm place to turn for help. The website provides practical advice for each step of the way, together with many links and signposts to other online resources.