What to say when someone tells you they have cancer

Transcript

Welcome to the sofidex Health Drive podcast series. Today we are talking about the moment somebody you care about tells you they have cancer, and the few seconds afterwards when you have to say something back. Maybe it was across a table in a café, or a phone call you were not expecting, or a message that arrived while you were doing something ordinary. You said something, almost certainly the first thing that came into your head, and you have been replaying it ever since.

And most of what you find when you look for help is a list of rules. Say this and never say that, as if one script worked for everybody, and as if a single clumsy sentence had ruined everything.

So we want to ask a more useful question than what the perfect words are. Not how to avoid saying the wrong thing, because nearly everybody does, but what actually helps in the weeks and months after that first conversation.

We will look at why the most natural replies, like telling someone they will beat it, can land so badly. We will get to the offer of help that almost nobody takes up, and what to offer instead. And we will look at the friends who quietly drift away, and why the months after treatment can be the loneliest part. If you have already said the wrong thing, it is very rarely too late to say something better, and that is exactly where this episode ends up. One thing before we start. This is health information, not medical advice, and nothing in it is a substitute for talking to your own doctor about your own treatment. What we can tell you is where all of it came from — 8 published sources, all listed with the episode. I'd like to do this one through a single person, if that's alright. Not a real one. Somebody we've made up, so we can follow him the whole way through. His name's Tom. He's forty-seven. And on a Saturday morning, in a café, his oldest friend Jo told him she has bowel cancer. They've known each other since they were eleven. She starts chemotherapy in a fortnight.

And Tom's invented, and so is Jo. But what happened next is about as real as it gets. Because Tom did what nearly everybody does. He panicked. Quietly. And he said the first thing that arrived. He said, you'll be fine. You're the toughest person I know. And then, because the silence felt enormous, he told her his uncle had bowel cancer and he's doing brilliantly now. Jo smiled. She said, yeah. Then she asked about his kids. And Tom drove home knowing he'd got it wrong. He just — he couldn't work out how.

So that's where I want to start. Because none of that sounds terrible. You'll be fine. You're tough. My uncle's okay. Where's the harm in any of it?

There isn't harm, exactly. And that's the first thing I'd tell Tom. Nobody's going to look back on that café and think he was cruel. He was frightened. So he reached for comfort. But listen to what each of those sentences does. You'll be fine. He doesn't know that. Jo doesn't know that. Her doctors may not know that. So it's a promise nobody can keep. You're the toughest person I know. Lovely. But now Jo has a reputation to live up to. And the uncle? That's a story about somebody else. So within about thirty seconds, the conversation has moved away from her.

Moved away from her. Even though every word was meant kindly. Is that written down anywhere, or is that just your instinct?

It's written down. Quite plainly. Cancer Research UK has a page for exactly Tom, called how to support someone with cancer. And it has a list of things to try not to do. And two of them are almost word for word what he said. Try not to tell them to be strong, or be positive, or fight it, because it puts pressure on them to behave a certain way. And try not to compare their situation to somebody else you know, because each person's experience with cancer is unique. So, the toughest person I know. And my uncle's fine. Both on the list. Not because they're wicked. Because of what they ask of her.

What they ask of her. Say more about that. Because be positive sounds like the most supportive thing you could possibly say to someone.

It sounds like it. But think about where Jo is. She found out ten days ago. She's scared. She might be furious. She might be numb. And Tom's just told her that her job now is to be brave. So the next time she's frightened, she's got a choice. Tell Tom, and let him down. Or hide it, and stay the toughest person he knows. And a lot of people pick hiding. The National Cancer Institute in America writes to patients about this, and one of its headings is simply don't try to be upbeat if you're not. It notes that many people say they want the freedom to give in to their feelings sometimes. That's the freedom be positive takes away.

But there's a reason people say it, isn't there? There's this idea that attitude matters. That if you stay positive, you're more likely to get through it.

That idea's everywhere. And it's been tested. Properly. A systematic review in the BMJ pulled together the studies that followed people with cancer over time, to see whether coping style changed what happened to them. Most of the studies that looked at fighting spirit found no significant link with survival or recurrence. Helplessness and hopelessness, the same. And the conclusion is the bit I'd want Tom to hear. People with cancer shouldn't feel pressured into adopting particular coping styles to improve survival or reduce the risk of recurrence. So be positive isn't medicine. It's a mood. And Jo's allowed whichever mood she's actually in.

Whichever mood she's actually in. Okay. So what about the uncle? Because I'd have thought a story with a happy ending is exactly what someone wants to hear.

It's natural. You want to hand her some hope, and the uncle's the only bit you've got. But the uncle isn't Jo. Different body. Different treatment. Different decade. And she knows that. So the story doesn't really reassure her. And there's a second problem, which is subtler. It turns the conversation into one about Tom's family. Now she's listening to him. Asking polite questions about the uncle. Being the supportive one. In her own crisis. The Cancer Research UK page has another line on the same list that catches this. Try not to say you know how they feel, because we can't ever know exactly how someone with cancer feels.

There's another thing Tom nearly said, and stopped himself. He nearly asked whether they knew what caused it. Because Jo's always looked after herself. Is that a bad question?

It's a very human question. And it usually comes from a good place. We want cancer to have a reason, because a reason feels like protection. If she did something, maybe I can avoid it. But from where Jo's sitting, it can sound like, what did you do? And plenty of people with cancer are already asking themselves that, at three in the morning. The National Cancer Institute lists blaming yourself for lifestyle choices among the common sources of guilt. Its answer is plain. Remember that having cancer isn't your fault. It says scientists don't know why one person gets cancer and another doesn't. So if Jo wants to talk about causes, she'll bring it up. Tom doesn't need to.

So that's three for three. He's sitting in his car outside his house, going over it. What should he have said? Is there a right answer?

There isn't a script. I want to be clear about that, because people go looking for the perfect sentence and it doesn't exist. But there's a shape. And the shape is surprisingly simple. Say something true. Then stop talking. Something like, I'm so sorry. I don't know what to say, but I'm really glad you told me. That's it. And the strange thing is that admitting you're awkward is on the list of things that help. Cancer Research UK puts it first on its list of things to do. Say if you feel awkward, because it acknowledges the situation rather than pretending it's not happening. Tom spent the whole café trying to hide that he was rattled. He didn't need to.

I don't know what to say. That feels like a failure, though. Like he's supposed to be the one with the words.

It feels like failure from the inside. From Jo's side it lands completely differently. It tells her he's taking it seriously. It tells her he isn't about to perform. And it leaves a gap. Which is the point. Because the most useful thing in that café wasn't anything Tom could say. It was what Jo might have said next, if there'd been room. The same page says you don't need to have all the answers, and that just listening to a person's concerns or worries can be hugely helpful. And the National Cancer Institute, writing to patients about the people around them, suggests asking them to listen when you need it, rather than try to solve every problem.

Listening, then. But everyone says listen. What does it actually look like when somebody does it well? Because I suspect most of us think we're better at it than we are.

Most of us are worse at it than we think. Me included. So good listening here is mostly a list of things you don't do. You don't interrupt. You don't fill the silence. You don't rush to fix it. And the page gets very specific. Let the person with cancer lead the conversation and try not to interrupt. Silences are okay, and you don't have to fill them with words. If they cry, don't try to cheer them up. And there's one I really like. If you're finding it difficult, don't change the subject. Say how you feel. Because changing the subject is exactly what Tom did with the uncle story. He was uncomfortable. So he moved them both somewhere safer.

He moved them both somewhere safer. That's really uncomfortable to hear, because I've done exactly that. More than once.

Most people have. And it's worth being kind about why. Because when someone tells you they have cancer, you get a jolt of your own fear. For them, obviously. But for yourself too. Your own body. Your parents. Everyone you've lost. The National Cancer Institute has a sentence about this on a page written for patients, and I think it's the most generous line in any of our sources. When relationships change after a diagnosis, it says, this isn't because of you, but because others have trouble coping with their own painful feelings. So Tom's uncle story wasn't selfishness. It was Tom managing his own fear in real time. The trick is noticing it while it's happening.

Okay. Let's move him on, because the café's over. He gets home. He's thinking about her all evening. And at about ten o'clock he sends her a text.

And I can tell you exactly what it says, because it's what nearly everyone sends. So sorry again about today. You know where I am. Let me know if you need anything. Kiss. And Jo replies, thanks, that means a lot. Kiss. And that's the end of it. She never lets him know. He never hears that she needs anything. And three weeks later, Tom's telling himself she must be fine, because she'd have asked. And Jo's telling herself Tom's busy. And anyway, what would she even ask him for? Both of them waiting for the other one to go first.

Both waiting. But why does that happen? Let me know if you need anything sounds like the most generous offer there is. It's completely open.

That's the problem. It's completely open. So it hands all the work back to her. To take him up on it, Jo has to work out what she needs. Then decide it's reasonable to ask. Then decide Tom actually meant it. Then ask, which means admitting she can't manage. And that's four hard steps for someone who's exhausted and frightened. So most people stall at the first one. And the National Cancer Institute sees the same knot from the other side, in its advice to patients about family and friends. It says some people will wonder what they can do for you, but aren't sure how to ask. So both people are stuck. Its fix is that the patient makes a list of things they need help with, so people can pick something they're able to do. Which is sensible. But it asks Jo to do the organising, in the middle of all this. And Tom could do that part himself. That's the real shift. Not a better offer. A smaller one, with the thinking already done.

A smaller one. So what's the better version? If he could send that text again, what does it say instead?

Something specific. Something she can say yes or no to without any effort. Instead of let me know if you need anything, it's this. I'm doing a big shop on Thursday, can I drop some meals round for your freezer? Or, what day's your first chemo? I'd like to drive you. Yes or no. One word. She doesn't have to work out what she needs, or whether it's too much to ask. Cancer Research UK says to ask if there's anything specific they need help with. And then it gives a whole list of practical ideas. Meals they can put in the freezer. Driving them to the hospital for blood tests and appointments. Shopping. Walking the dog. Picking up prescriptions. Ordinary things. The kind of help that's easy to say yes to.

That's so much easier to answer. But what if she says no? Because some people really don't want help. They'd rather manage on their own.

Then she says no, and that's fine too. The page is honest that some people don't want help, or find it hard to accept. They might want to stay as independent as possible. And it says to try not to take that personally. So Tom respects it, and lets her know the offer stands. Then he asks again in a couple of weeks, about something different. There's one more rule on that page that's easy to skip past. Make sure you're able to commit to any offers of help you do make. Because the worst version of this is Tom offering to drive her to every appointment, in a rush of feeling, and then cancelling the third one because of work. A small promise kept beats a big one dropped.

Here's a modern one. Tom's sister sends him an article about a diet that's supposed to starve cancer. She says, you should send this to Jo. Should he?

No. Not unless Jo's asked for that kind of thing. And I'd say that even if the article looked convincing. Think about what it's like to be Jo right now. She's got a cancer team. She's got appointments, leaflets, a treatment plan. And now everyone she's ever met has an article, or a supplement, or a cousin who swears by something. And each one's meant kindly. But together they're exhausting. And some of them carry a sting, because the message underneath is, you could be doing more. Cancer Research UK's try-not-to list includes offering advice that they haven't asked for. If Jo wants Tom's view on a diet, she'll ask. And if she does, the most useful answer is probably, have you asked your team about it?

Have you asked your team. Okay. Now, you said three weeks went by after that text. That gap feels like where things really go wrong.

It's where they go quietly wrong. Because nothing dramatic happens. Tom doesn't fall out with Jo. He just doesn't ring. He's worried about intruding. He doesn't know whether she wants to talk about it, and he doesn't know how to talk about anything else. So he waits for a better moment. And the better moment doesn't come. So multiply that by everyone she knows. The National Cancer Institute lists it among the reasons people with cancer often feel lonely or distant from others. Friends sometimes have a hard time dealing with cancer and may not visit or call. Not because they've stopped caring. Because, as the same page puts it elsewhere, loved ones often mean well, but they don't know what to say or how to act.

And is it friends especially? Or does that happen with family as well? I'd have assumed family is where people go quiet.

There's some evidence it's more about friends. It's old, and it's small, so I'd hold it lightly. In one interview study, two psychologists talked to 55 people with cancer about the specific things that had helped them and the things that hadn't. There was an existing idea that people in a crisis like this get rejection, withdrawal and communication problems from those close to them. And they found that idea fitted friends and acquaintances better than close family. Which makes some sense. Because family are in it whether they like it or not. But friends have to choose to show up. And that study found something else that matters for Tom. The same action could be helpful from one person and not from another. So there isn't a universal right move. It depends who you are to her.

It depends who you are to her. So does any of this actually matter, beyond feeling good? I mean for Jo. For how she gets on.

It matters for how she feels. That part's solid. Cancer Research UK says research has shown that emotional support from family and friends can make a big difference to the quality of life of someone with cancer. Whether it matters for how long she lives is a harder question, and I want to be careful with it. There's a meta-analysis that pooled 87 studies on social support and survival in cancer. In the studies that adjusted for other factors, high levels of perceived social support were associated with a 25 per cent lower relative risk of dying. And that's a striking number. But it's an association. Not proof.

Not proof. Why not, though? Because a number like that sounds like exactly the thing that would make Tom pick up the phone.

It might. And I'd still want him to pick up the phone. But for the right reason. Because people with lots of support tend to differ in other ways. They might be younger. Or better off. The authors say so themselves, and point out that the links might come from things like age or income rather than from support itself. And they say further randomised intervention studies are needed to test causal hypotheses. In other words, to test whether the support itself makes the difference. There's also a practical reason support could matter, and it isn't mysterious. They suggest people with more practical support may be more likely to get help getting to medical appointments or to the pharmacy. Lifts. Prescriptions. The boring stuff on that list. So I wouldn't tell Tom he can add years to Jo's life. I'd tell him she'll feel less alone. That's enough of a reason on its own.

She'll feel less alone. Okay. So say Tom gets it. He rings her. And Jo picks up, and she clearly doesn't want to talk about cancer. At all. What does he do with that?

He talks about something else. Gladly. This catches people out, because they think the supportive thing is to keep steering back to the illness. Like they're proving they care. But Jo's still Jo. She still has opinions about football, or her terrible boss, or whatever ridiculous thing her teenager did last week. Cancer Research UK says remember that they might not want to talk or think about their cancer all the time, and that a normal conversation about everyday things can sometimes be very welcome. And the National Cancer Institute tells patients that if they don't want to talk about it, it's okay to say that too. So Tom's job isn't to make her talk. It's to make it obvious that she could.

To make it obvious that she could. What about jokes, though? Because Tom and Jo have been taking the mickey out of each other for thirty-six years. Does that have to stop?

Not at all. Probably the opposite. If their friendship runs on jokes, then losing the jokes is one more thing cancer's taken from her. The page actually lists sharing a joke or laugh among the things to do, if this seems appropriate. But there's a sensible rule alongside it. Don't use humour unless they've used it themselves. So Tom lets Jo set the tone. If she makes a dark joke about the chemo, he can laugh. He doesn't open with one. And the same goes for keeping things normal generally. The page says keep your relationship as normal and as balanced as possible. Balanced is the interesting word. It means Jo still gets to be useful to Tom. She can still give him terrible advice about his love life. I think that matters a lot.

Balanced. That's a lovely word for it. And when he does see her in person? Because turning up unannounced with flowers seems like the classic friend move.

It's a lovely instinct with a small fix. Ask first. Cancer Research UK's practical list includes exactly that: ask before you visit, in case they're feeling too unwell. And some days she simply will be. And a surprise visit on a bad day means Jo has to host. Put the kettle on. Be okay. So a text that says, I'm near yours on Saturday, fancy a cup of tea, or is it a sofa day? That gives her an easy out. And there's one more idea on that page I think is underrated. Walking outdoors, side by side, can often encourage an open and relaxed conversation. Some things are easier to say to the path in front of you than to a face across a table.

To the path in front of you. I like that. Now, I'd guess the first few weeks, everyone's around. Cards, flowers, messages. When does it get hard?

Later. Usually much later than people expect. At the start, there's a rush. Everyone hears the news at once and everyone reacts. But treatment can go on for months. The cards stop. The messages thin out. And people assume someone else is keeping in touch. And then there's a strange moment at the end of treatment, when everyone relaxes. The National Cancer Institute describes it. Some people think that now treatment's over, the person will be back to normal soon, even though that may not be true. And it says it's also normal to feel alone after treatment. So the most useful thing Tom does might be in month five. Or the week after her last chemo. When the rush has gone, and he's still there. Cancer Research UK says to offer support throughout, at the beginning, during and after treatment.

Month five. I'd never have thought of that. So he should put a reminder in his phone? That sounds a bit cold, somehow.

It sounds cold, and it works. I'd say do it. Not because Tom doesn't care. Because life's loud, and good intentions get buried. A reminder every week or so that just says ring Jo is how the caring actually reaches her. And it doesn't have to be a big call. A text that says thinking of you, no need to reply. That last bit's important. Because answering messages is work, and someone in the middle of chemotherapy may not have the energy. Cancer Research UK's list includes exactly that kind of small thing. Ring them up, send a card, note or text to say you're thinking of them. Small. Regular. No reply required. And if lots of friends want to help, someone can set up a rota so people take it in turns to help out. Which stops everyone arriving in week one and vanishing by week six.

And what if it's more than sad? Say a couple of months in, Jo seems flat all the time. Not herself. Is that Tom's business?

It's his business to notice. And maybe to mention, gently. Not to diagnose. Because sadness is a normal part of this. The National Cancer Institute says many people with cancer feel sad, and that for some, those feelings lessen over time. But for others, it says, these emotions can become stronger and get in the way of daily life, and that can be depression, which can be treated. It tells patients that if they have signs like sadness that won't go away, or no interest in things they used to enjoy, for more than 2 weeks, they should talk to their doctor about treatment. So if Tom notices that, the useful thing isn't a pep talk. It's something like, you don't seem yourself lately, have you mentioned it to your team? And then he drops it, and lets her decide.

And what about at home? Jo's married. And Tom's noticed her husband doing the café thing too. Always cheerful. Never mentions it. Is that protecting her?

It's meant to. And there's a name for it in the research. Protective buffering. Holding back your own worries so you don't upset the other person. And it can go both ways. A systematic review looked at 55 studies of how couples talk to each other about cancer. Overall, avoiding communication was linked with worse psychological and relationship wellbeing. But here's the subtle bit. The benefits of opening up seemed to depend on how the partner responded. So it isn't that talking is always good. It's that how the other person responds seems to matter. And the review is honest that the research can't yet say much about which responses actually help. Which brings us right back to the café.

Back to the café. And back to Tom, because he's carrying this too. He's frightened for his friend. Where does he put that?

Somewhere other than Jo. That's the main thing. It's completely fair for Tom to be upset. He's watching his oldest friend go through something awful, and he doesn't know how it ends. But Jo's got enough to carry without carrying his fear as well. So he needs his own people. His partner. Another friend. Someone he can say the frightened, selfish, ugly things to, without them landing on her. Cancer Research UK has a whole section about this for people supporting someone, because caring can be rewarding and challenging. And none of that means hiding everything from Jo. If he cries when she tells him something, that's human. It's just that she shouldn't end up looking after him.

Okay. What if he messes it up again, though? Say he's three months in, and he says something clumsy. Is the friendship damaged?

Almost certainly not. One sentence doesn't decide a friendship of thirty-six years. What decides it is whether he keeps turning up. And if he realises he got something wrong, the repair is simple. He just says it. Something like, I've been thinking about what I said in the café. I think I was trying to make myself feel better. I'm sorry. I'm here, and I'm not going anywhere. I'd guess most people would be relieved to hear that. Because it means he's been thinking about her. And that's what she was wondering about all along. Not whether he'd get the words right. Whether he'd stay.

Before we finish, what don't we know? Because you've been careful the whole way, and I'd like you to draw the line.

There are real edges here. The first is that most of the practical advice, the do's and don'ts, comes from the patient pages of two cancer organisations. They're written carefully, and Cancer Research UK says its page is based on literature searches and specialist checking. But they're advice. Nobody ran a trial where some friends said be positive and others didn't. The second is that the bigger numbers are associations. The 25 per cent figure is an association, not a trial result. And the authors themselves say trials are needed to test whether support causes anything. Then there's the couples review, which says the evidence is thin on which responses help, and on timing, and on what to talk about. And the last is the obvious one. Jo isn't an average. Some people want to talk constantly. Some never want to. The only way Tom finds out which she is, is by asking her. And then listening to the answer.

So bring it back to Tom. It's Monday morning. He's had a terrible weekend replaying that café. What does he actually do?

He sends a text. Today. Not a perfect one. Something like this. Jo, I've been thinking about you all weekend. I'm so sorry about the news, and I'm sorry I went on about my uncle. I didn't know what to say and I panicked. I'm doing a shop on Thursday, can I bring you some dinners for the freezer? And can I drive you to your first chemo? No need to reply today. That's it. It owns the wobble, so she doesn't have to wonder about it. It offers two specific things she can say yes or no to. And it lets her off answering. Then he puts a reminder in his phone for a week on Friday. And another one for month five.

If Tom only keeps one thing from all this, what is it? The thing he says to himself next time he's sitting in the car, not sure what to say.

That he doesn't have to fix it. And he can't. Nobody can make Jo's cancer smaller with a sentence. What he can do is make her less alone in it. Say something true. Then listen. Offer things that are easy to say yes to. And keep turning up, especially after everyone else has drifted off. The words matter much less than he thinks. Showing up matters much more. Cancer Research UK puts it in a single line near the top of its page. Knowing you're there for them can really help.

And three things to ask. Tom isn't the patient here, so these are a bit different. What should he ask, and who should he ask?

Three questions. And the first one's for Jo, or her team if she wants him involved. If I come to an appointment with you, what would be most useful for me to do there? Take notes? Ask questions? Just sit with you? The second is for the hospital. Is there support here for family and friends, not just for the person having treatment? It's worth asking out loud. And the third is for Tom's own doctor, if he needs it. I'm finding this harder than I expected, so who could I talk to? Because looking after himself is part of looking after her. Three questions. One text. And then Thursday.