What not to say to someone with cancer

I thought long and hard about writing this post. I’ve gone back and forth and deleted lots of it for sounding ungrateful. And then rewritten it.

Since I started telling people I have cancer, people have been unendingly kind and thoughtful, and I don’t want to offer anyone a slap in the face. But I also need to talk about a few things people say when they hear a friend (of a friend) has cancer, because some of it is just plain unhelpful.

If I list something you’ve said to me, please, please, don’t feel bad, don’t apologise and don’t worry about it. If it really upset me, I probably told you to shut up at the time. If it was just frustrating, I probably filed it under ‘They Mean Well’ and moved on. But people are always saying “What can I do to help?” and, while there’s not much you can do, here’s some things you could avoid, for me and other people with cancer.

<Disclaimer: If you are offended by any of this and think I sound like an ungrateful shit, sorry, but I’m going to have to ask you to park your indignation as you could unwittingly make someone feel a whole lot worse quite easily.>

Did they catch it early?
This is my most hated question. What are you supposed to say? Think about what you’re asking. And what the possible answers could be: Yes (Oh, good, I mean, not good, you have cancer) or No: (What do you say now?). You’re effectively asking someone what their chances of survival are, which is downright impolite.

They didn’t catch my cancer particularly early. It’s stage 2. But I told everyone who asked “Yes, yes, it’s early”, because it’s either that or indulge in a very dark conversation with someone who is just asking the question because they don’t know what else to say.

Should you really be eating that doughnut/drinking that glass of wine?
Having cancer is a bit like being pregnant. Not in the growing-a-parasitic-entity-that-could-one-day-grow-up-and-kill-you kind of way, but because your health, your appearance, and your body, become policed by people who would previously have baulked at commenting on your scuffed shoes.

If there’s something I shouldn’t be eating or drinking, trust me, my oncologist has told me, at length. There’s a massive list I should avoid. Including, but not exclusive to, salami, prosciutto, brie, camembert, rare steak, rare burgers, unwashed fruit and vegetables and live bacteria drinks. If you do see me eating any of the above, the chance is, I’ve taken a considered choice to enjoy my brie and bacon sandwich from a reputable seller, decided it has a negligible chance of giving me food poisoning and I would just like to enjoy it in peace please, thank you.

You shouldn’t be eating Sugar. Cancer lives on Sugar.
Please, please don’t unthinkingly quote things you’ve read online or in the paper. It’s really not the best source of medical advice. There are a few things that, although completely unfounded, come up time and again and they’ve been compiled into a list by Cancer Research UK. It’s good, have a read.

By telling people what ‘causes’ or ‘cures’ their cancer, you are sort of, inadvertently, blaming them for their cancer, or making it their job to get rid of it. It’s not. That’s why there are Oncologists. I am pumped with high volumes of cancer poisoning drugs every few weeks. If that doesn’t do it, avoiding a gummy bear is not going to make a difference. I don’t actually like gummy bears, but you get my point.

On the flip side, if someone with cancer feels better for following a strict diet of raw mung beans, let them.

Actually, I’d just say avoid You Must and You Should. You lose a lot of power and control when you have cancer and more people telling you what to do is claustrophobic at times.

If you have a suggestion or you’ve read something, you can easily just ask someone “Do you want to know about something I’ve seen online or have you had enough advice for now?” It’s easy. I know this sounds pedantic, but it could be the difference between your well meaning advice being helpful or making your friend cry in the loo. It’s really your choice. A cancer diagnosis comes with tonnes of new information that someone is trying to take in. Anything optional can wait. Maybe forever.

It can’t hurt though?
Throughout this, you’re probably thinking “God, what a cow, I’m just trying to be nice. What can it hurt?” And the point is, it can hurt a lot. In particular, I’ve been casually advised to drink or eat things, by people with the best intentions, that I know could be very dangerous for me on chemotherapy.

There’s also the mental burden of cancer to think about. When you have cancer, your day is filled with Extras. Taking my temperature, have I eaten enough fruit and vegetables today, when’s my next chemo, have I got everything arranged for the week after chemo, have I done my injection today, does that woman next to me on the bus have a cold, can I get the tube at 5pm, can people tell my bald patch is showing, have my eyelashes just fallen in my soup, all sorts. So sometimes these suggestions are just piling on top of all the Other Things that you need to think about, and it’s too much.

Stay strong. Stay positive. Fight this!
This is a tricky one for me. Some days I need a kick up the bum and to be told, rather firmly, to go out of the house. But there are days when I need to be fragile. When I need to be negative and rage against the injustice of my situation. And I need to know that that’s ok, too.

Everyone’s different, I suppose. But sometimes, when I feel really low, hiding in the other room, hoping Milla will play by herself for a couple of minutes so I can just be by myself, I feel like a failure. Like I’m failing at having cancer. I don’t want to let down all the people who say “I know you’ll be positive, you’re such a fighter.” Because I’m not. Not always.

Nothing
Something, however annoying, is better than nothing. Please ignore any or all of the above if I’m putting you off getting in touch with that person you know with cancer. Maybe they’re recently diagnosed, maybe it’s been a while, but it’s always worth saying hello. With Facebook, Twitter, emails, texts, and the like, it’s now really easy to ignore you if they don’t feel like talking. But your message, sitting in their inbox, could be a much needed lifeline on a crappy day a week from now.

Having a serious illness is lonely because it’s isolating. No-one knows what you are going through because no-one else is. Some days there are so many well wishers and wishes that I forget to reply to them all, and somedays I don’t reply because I just don’t want to. But sometimes there are days when I feel completely cut off. Cut off from work. Cut off from friends. Cut off from that memory of who I was. Who I am. And then I start to think, “If I’m forgetting who I was, everyone else probably is too.”

Do whatever you can to remind people that the hole they left hasn’t just been filled with other friends and new colleagues, painted over with parties and meetings they couldn’t attend, so that only those who know where to look can see there ever was a hole. Even if that’s by saying “Have you tried that box Noel Edmond’s uses?”

I guess what I’m trying to say is this: what I really dread hearing is the sound of everyone else getting on with their lives and forgetting me.

Also, tell me when you’re having a crap day, too. I’m still your friend, even if I have no hair.