“I don’t know what to say.”

How I longed to hear this from people after I was diagnosed with breast cancer.

After a cancer diagnosis, friends and family can forget that you are still a human with feelings. People would try to make themselves more comfortable with the situation by just saying something. Maybe they couldn’t find the right words to say. It’s understandable. But I just wanted to be listened to and be heard.

I mostly heard ‘hopeful’ stories which were often irrelevant because everyone’s situation and experience with cancer is different. The person telling me the story often thought it was hopeful when it was actually very harrowing for me to hear.

Sometimes, the stories related to despair. For example, don’t tell the story of your aunt who died from breast cancer. Even if someone believed their story was very similar to my circumstances, I really wanted them to keep it to themselves.

Cancer makes people awkward. I found many people around me were awkward with their words and their actions. After all, the situation didn’t come with a handbook – for them or for me.

Cancer is uncomfortable for all concerned. But I did wish more people understood how to talk to someone with cancer.

My experience allows me to share perspective, and I want to help others to learn how to truly listen to a cancer patient and how to respond to them genuinely. It’s called cancer etiquette, and it will go a long way if you’re speaking to anyone who has cancer.

Things to avoid saying

As a general rule, saying the following things in particular should be avoided at all costs:

• “Such and such had cancer and…” fill in the blanks. Understand that what happened to someone else is irrelevant.
• “Such and such did this, you should do that too”. While you may be trying to sound positive, the implication to a cancer patient will be that they aren’t doing it right or aren’t trying hard enough.
• “So and so had cancer, but she died”. Thanks a lot; I feel much better now.
• “You probably got cancer because…” followed by all sorts of information meant to inform and fix the person who is ill. It’s natural to want to help, but don’t supply information or advice unless you’re specifically asked for it.
• “Did you see that story about cancer on the news last night?” This attempt at instilling hope in the patient is understandable, but a bit naive.

Also avoid platitudes and cliches.

Platitudes are commonplace expressions we’ve been taught by society. When faced with an uncomfortable moment and at a loss for words, you want so much to have something meaningful to say.

I heard all of these when I was ill:

“Things could be worse”, “You could be hit by a bus tomorrow”, “Everything happens for a reason”, “God doesn’t give you more than you can handle”, “You’ll be fine”, “Lucky you, you’ve lost weight”, “You get a free boob job”. And my all-time favourite, “At least you have a ‘good type’ of cancer” (yes, people actually said this to me).

Cliches often have the opposite effect they’re intended to have. These are things like “Think positive thoughts”, “Science is on your side”, and “I know exactly how you feel”.

“I know exactly how you feel” completely negates everything a cancer patient is going through and feeling. It’s a way of shifting attention away from them and focusing on yourself. Cancer is selfish and the person with it deserves all your attention.

Think empathy rather than sympathy. Not sure of the difference? Empathy is about feeling and understanding another’s feelings, and having a connection. Sympathy is more feeling sorry for them, but there’s no personal connection. Trust me when I say that a cancer patient doesn’t want you to feel sorry for them.

Things you should say and do

How about some the things you should say and do?

At the top of list: stay connected. This is a tricky one because people think you need time and space alone to do your cancer stuff. I had friends and family disappear from my life during my cancer treatment. Too many. And it was hurtful. Again, it came back to them not knowing what to say or do, so they simply faded away, with some too embarrassed to re-appear. Even if you don’t know what to say, silence is great too because you are simply there.

I was suddenly thrown into a world of treatment that was very specific and regimented. I felt as though I had lost all control over my life. Many decisions weren’t even mine to make anymore. People were constantly telling me what to do or worse, making decisions for me. I still had a brain! I was being told, not asked.

Asking is empowering. It restores normality and a sense of control. By all means, tell someone specifically what you can do for them like, “I can pick up your ironing today”, or “I can drive you to treatment on Wednesdays”. But wait for their decision as to whether they are going to take you up on any of it.

What I’m saying is, think before you speak. It’s okay to get it wrong and say something that doesn’t come out right. If you do, just apologise quickly, and move on.

Above all else, just be normal and treat your friend with cancer like they are normal too.