I often say being off sick is quite similar to being on maternity leave. There can be the same sense of isolation, same lack of contact with people living normal everyday lives, same erosion of confidence at doing normal things. For me, my maternity leave blended into my sick leave, so it’s hard to remember where one stopped and the other one started.
When you get plucked out of your life, for whatever reason, you suddenly have less (and less) in common with the carefree people you knew from Before. Slowly, people stop getting in touch. You start to see fewer people on fewer occasions and, when you do have a chat with someone, it’s nice if it doesn’t end with either of you feeling like crap. Sound pretty sensible, right? Sounds like it should be easy. So why did so many of the interactions I had with people get so, so awkward?
I thought long and hard about writing this. I went back and forth and deleted lots of it, before rewriting it all again. The last thing I want to do is discourage you from talking to That Person You Know With Cancer (or off on maternity leave, for that matter), but I also want to make sure that you have some tools to make sure you don’t totally mess it up.
Of course, it’s hard to say, just from my experience, what the right thing to say is, but I could probably give you a good guide on what not to say.
Here goes with the cancer shame. Do not say the following:
Did they catch it early?
This is my most hated question, and I was asked it All. The. Time.
How are you supposed to answer this question? 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 also how likely they are to die), which is downright impolite.
They didn’t catch my cancer particularly early. It was stage 2.
But I told everyone who asked “Yes, yes, it’s early” because it’s either that or indulge in a very deep conversation with someone who is just asking the question because they don’t know what else to say.
Cancer shame: “why are you drinking 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 balked 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 of things I avoided during chemotherapy. Including, but not exclusive to salami, prosciutto, brie, camembert, rare steak, rare burgers, unwashed fruit and vegetables and live bacteria drinks.
If during treatment, you do see someone you know eating any of the above, the chance is, they’ve taken a considered choice to enjoy their brie and bacon sandwich and would just like to enjoy it in peace, please, thank you. Trust me, they haven’t forgotten about their cancer. And if they have, give them those 10 minutes of forgetting. Please don’t cancer shame them.
Cancer shame: “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 entirely unfounded, come up time and again and they’ve been compiled into a list by Cancer Research UK. It’s okay, 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 was 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, it is literally nothing to do with you.
Actually, I’d just say avoid You Must and You Should around people with cancer (maybe around people in general, actually, you control freak). You lose a lot of power and control when you have cancer and more people telling you what to do is claustrophobic. Cancer shame adds to their anxiety.
If you have a suggestion or you’ve read something, you can quickly 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 petty, 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 tons of new information that someone is trying to take in. Anything optional can wait. Maybe forever.
Cancer shame: “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 knew could have been 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 into my soup?
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.
Cancer shame: “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 was feeling deficient, hiding in the other room, hoping Milla would play by herself for a couple of minutes so I could just be by myself, I felt like a failure. Like I was 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. So please don’t put that burden on someone.
“Having a serious illness is lonely because it's isolating. No-one knows what you are going through because no-one else is”
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, perhaps it’s been a while, but it’s always worth saying hello. With Facebook, Twitter, emails, texts, and the like, it’s easier than ever 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 some days I don’t respond 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 forget 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 cacao nibs?”
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 your friends when you’re having a crap day, too. They are still your friend, even if they have no hair.
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