People say strange things when you have cancer.
Usually they’re trying to be kind. Sometimes they’re terrified of the silence and grab the first question, piece of advice or aggressively positive statement that comes into their head.
I know that because I’ve been on the receiving end of quite a few of them.
This isn’t an etiquette manual, and it definitely isn’t a list of five things every person with cancer will hate. Everyone is different. Something that made me want to disappear into the nearest toilet might be exactly what somebody else needs to hear.
And I really don't want fear of saying the wrong thing to stop you getting in touch.
Silence can hurt too.
This is simply what people said to me during cancer treatment, why some of it landed badly, and why even a slightly awkward message can sometimes be better than disappearing altogether.
What not to say to a cancer patient: five things people said to me
Being off sick can feel surprisingly similar to being on maternity leave. There can be the same sense of isolation, the same lack of contact with people living normal everyday lives, the same erosion of confidence at doing normal things. For me, maternity leave blended into sick leave, so it’s hard to remember where one stopped and the other 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 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.
Sounds pretty sensible, right? Sounds like it should be easy.
So why did so many of my conversations 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. But I can tell you about a few things I heard that made already difficult days a little harder.
“Did they catch it early?”
My most hated question.
I was asked it All. The. Time.
How are you supposed to answer?
Think about what you’re actually asking, and what the possible answers might be.
Yes? Oh good. I mean, not good. You have cancer.
No? What do we say now?
To me, it felt like somebody was indirectly asking about my chances of survival, including how likely I was to die, when neither of us was remotely prepared to have that conversation.
They didn’t catch my cancer particularly early. It was stage 2.
But I told plenty of people, “Yes, yes, it’s early,” because the alternative was launching into a very deep conversation with someone who had probably asked because they didn’t know what else to say.
Not everybody will mind being asked about their diagnosis or prognosis. Some people will happily tell you everything. I just wanted the choice.
“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 suddenly your health, appearance and body can become public property.
People who would previously have balked at commenting on your scuffed shoes start inspecting what you eat and drink.
During chemotherapy, I had restrictions and precautions from my medical team about what was sensible for me. Other people will have different treatment plans and different instructions.
What I didn’t need was a second, unofficial medical team assembled from friends, acquaintances and whoever happened to be standing near the buffet.
If you see somebody going through treatment eating or drinking something you think they “shouldn’t”, there is a very good chance they have made their own decision based on information you don’t have.
And if, for ten minutes, they have actually forgotten about their cancer?
Give them those ten minutes.
Please don’t cancer-shame them.
“You shouldn’t be eating sugar. Cancer lives on sugar.”
Please, please don’t unthinkingly repeat something you read online.
The idea that someone with cancer can starve their cancer by simply cutting sugar from their diet is an oversimplification. Cancer Research UK says eating sugar does not directly cause cancer, and there is no evidence that following a sugar-free diet improves someone’s chances of surviving cancer.
That doesn’t mean diet is irrelevant to health. It means cancer is rather more complicated than removing gummy bears.
I don’t actually like gummy bears, but you get my point.
What bothered me even more was the implication underneath some of this advice.
When you tell somebody what supposedly “caused” their cancer, or what they now need to eat to get rid of it, you can inadvertently hand them responsibility for both having cancer and curing it.
That’s a lot to dump on someone.
I’d be cautious with 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. More people telling you what to do can feel claustrophobic.
If you've genuinely found something you think your friend might want to know about, ask first.
“Do you want me to send you something I read, or have you had enough advice for now?”
That tiny question gives them a choice.
A cancer diagnosis already comes with an absurd quantity of new information. Anything optional can wait.
Maybe forever.
For reliable information about sugar and cancer, see Cancer Research UK’s explanation of sugar and cancer.
“It can’t hurt though?”
Yes. Sometimes it can.
Throughout this you may be thinking, God, what a cow. I’m only trying to help. What harm can one suggestion do?
The problem is that during treatment, “natural”, “healthy” or available without a prescription does not automatically mean harmless.
Some foods, herbs and dietary supplements can interact with cancer drugs. The US National Cancer Institute advises people receiving cancer treatment to discuss supplements and complementary products with their medical team because some can change how cancer medicines work.
That isn't a reason for friends to become frightened of food.
It's a reason friends probably shouldn't prescribe it.
There is also the mental burden.
When you have cancer, your day is filled with Extras.
Have I taken my temperature?
Have I eaten enough?
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?
Then somebody adds another remedy, another rule, another thing you apparently ought to research.
Sometimes it's just one more thing on top of all the Other Things.
And sometimes that's too much.
For general information about supplements and cancer treatment, see the National Cancer Institute's guidance on diets and supplements.
“Stay strong. Stay positive. Fight this!”
This one is tricky 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’s okay too.
Everyone’s different, I suppose. Some people genuinely like being told they're strong. Some find “fight” language useful.
But sometimes, when I was feeling deficient, hiding in another room and hoping Milla would play by herself for a couple of minutes so I could just be alone, I felt like a failure.
Like I was failing at having cancer.
I didn’t want to let down all the people saying, “I know you’ll be positive, you’re such a fighter.”
Because I’m not.
Not always.
So please don’t make optimism another test somebody has to pass while they're ill.
URevolution contributor Aphra Pell writes about the same pressure from another chronic-illness perspective in Toxic Positivity and Chronic Illness: The Reality of Not Getting Better.
Unsolicited cancer advice can become another burden
The theme running through most of these conversations wasn't that people were cruel.
Mostly they were trying to help.
But cancer can make your life feel suddenly crowded with other people's fears, questions, theories, diets, cures, stories and expectations.
You lose privacy.
You lose control over chunks of your body and your time.
You may have professionals telling you what needs to happen next because, medically, it really does need to happen next.
So another person arriving with a newspaper article about sugar, supplements or some astonishing thing their neighbour's cousin tried isn't always helpful.
Ask before advising.
Let the person with cancer decide whether they want that conversation.
And please remember that being frightened, angry, bored, miserable or thoroughly fed up is not evidence that they are doing cancer badly.
Saying something imperfectly can still be better than disappearing
After all of that, here is the annoying contradiction.
Something, however awkward, can still be better than nothing.
Please ignore any or all of the above if it is putting you off contacting somebody you know with cancer.
Maybe they're recently diagnosed. Maybe it's been a while.
Say hello.
Send the text.
They might reply immediately. They might forget. They might read it and not have the energy to answer. They might actively not want to talk to anybody that day.
They don't owe you a response.
But the message is still there.
Having a serious illness can be lonely because it is isolating. No one else is living exactly what you are living.
Some days there were so many well-wishers and messages that I forgot to reply to them all. Some days I didn't respond because I just didn't want to.
But sometimes there were days when I felt completely cut off.
Cut off from work.
Cut off from friends.
Cut off from the memory of who I was. Who I am.
And then I would start thinking, “If I forget who I was, everyone else probably is too.”
Do whatever you can to remind somebody that the hole they left hasn't simply been filled with other friends and new colleagues, painted over with parties and meetings they couldn't attend until only the people who knew where to look remember there was ever a hole.
Even if you occasionally get it wrong.
Even if you accidentally ask about cacao nibs.
I guess what I’m trying to say is this:
What I really dreaded hearing was 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.
Want practical examples of what you can say?
This article is Lauren's experience of the things people said to her and why some of them were difficult.
If you're staring at a blank card or unfinished text and actually want examples of what to write, read URevolution's separate guide: What to Write to Someone With Cancer: Messages for Cards, Texts and Letters.
