SOMEONE YOU KNOW has been diagnosed with a serious illness and you bump into a close relative of theirs. Words won’t come. You’re standing there and you need, desperately, to say something, anything.
Remember, no-one has ever been offended by the words: “I don’t know what to say… I’m so sorry for this horrible thing that is happening to you.”
“I’m thinking of you” is never the wrong thing to say.
The right words are never easy to find. No-one knows that better than the patient’s close relatives who are already struggling to find the words to process what’s happening, to comfort each other; while trying not to look sick with dread, trying to keep a “normal” face for their loved one.
The world has suddenly spun out of control. Days are a pile-up of scans, biopsies and medical appointments with a constant undercurrent of terror. It’s no-one’s fault when life becomes suspended in that sadistic wait for results or the treatment plan is cruel.
For loved ones, there is a single focus: the needs and wishes of the person who is going through this. There is only so much the relatives can control and, first and foremost, comes the patient’s privacy and dignity. So remember this above all when you’re in that moment, unsure of what to say, or even more so when you’re tempted – as we all can be – to ask the kind of questions you regard as “straight” and “honest”.
No matter how long or close your friendship, such queries can sound a lot like a probe for a gossipy nugget to be shared and dissected over a few drinks.
Calling on our own and others’ experiences in the worst of situations, we’ve come up with 10 things that are commonly said to patients and relatives – and examined how not to say them and what might be a better way of saying it.
But first, a lesson for those of us who have been on this side. People feel helpless when they see their friends suffering. And sometimes they say the wrong thing. But what we have learned from going through all those rights and wrongs is that they’re there, (mostly) doing the very best that they can, letting you know they love you. And they really want to help. Let them.
Unasked, they will leave care packages with phone chargers, fleecy pyjamas and books at your front door; still-warm lasagnes and curries in the garage; fruit baskets behind walls. People will feed the dogs after an unexpected hospital dash, arrive early on a Saturday to cut back the hedges and send someone over to adapt doors to the patient’s new normal.
This list isn’t designed to make you feel bad or inadequate; or to agonise over previous behaviour. We simply hope it helps.
1. “Shout if there’s anything I can do.”
Open-ended questions are exhausting. Most people have to get used to asking for help, especially if they’re already leaning heavily on grieving family and friends for emotional support.
Try to be specific.
Instead of a text asking, “How’s everything?” (often too open-ended for a polite reply), try a more manageable, “How are you today?”
Be practical.
For one friend, the best thing anyone said was, “Sit down and write me a list of what you need done – no job too small – and jump in the shower and leave me to it.”
For another, preparing for her husband to be moved from hospital to home and into an unknowable new phase, her sister arrived before they returned, arranged a beautiful, cosy new bedroom in a downstairs room, cleaned the house and lit the fire.
Back to that important lesson for us: people really want to help. Let them.
2. “What’s the prognosis?”
“How bad is it? Did they give you a timeline?”
Of course people are worried and want to know what’s happening but questions like these can feel like acts of violence towards a family.
Months of treatment and unknowns lie ahead. Some of us have huddled in a hospital family room with a surgeon coldly presenting a countdown calendar of life. For a patient and their family who are unsure they will come through this, asking for the prognosis is brutal.
It’s up to the patient to divulge what they want to reveal, to whom and when. And it’s up to us to protect that patient and their dignity in the process.
If you feel out of the loop, it’s probably because it’s not the right time to have this conversation.
Do say: “We’re thinking of you, sorry you’re going through this.”
3. “I can’t get any of you to answer your phones. Next time I’m just going to turn up at the house.”
Just don’t. You have no idea what is happening in that house. The patient’s mobility may be deteriorating. They may be unable to manipulate a knife and fork. They don’t need an audience at what may be random, difficult meal times. The kindest visitors will offer a certain day and time for a visit and cheerfully add that it’s ok to cancel right up to the last minute. They might text just beforehand to check that it’s still a good time.
You’re still friends.
The patient/family’s capacity for small-talk and a hangover may be just diminished right now.
4. “You just have to be positive.”
No, I have to be realistic. And practical. Platitudes are neither.
We question oncologists, radiologists, neurologists, nurses. Take notes and process what it means. We learn to differentiate between symptoms and side-effects, watching in fear as the patient moves into what we only guess is “a new phase”.
Depending on the course of the illness, this can be a constant low-level terror. Expecting someone to look on the bright side and keep their chin up is, at best, minimising the situation they’ve found themselves in; at worst, it further exacerbates feelings of loneliness.
“They’ll get through this.”
“Everything will be ok.”
“It really shows you, every day counts.”
“They’re lucky it’s not 30 years ago, by God it was a different story back then.”
“Everything happens for a reason. At least they’re doing treatment.”
You don’t have to be a cheerleader. Avoid sentences that begin with, ‘At least…’
Let patients and their carers be honest. If they want to share their despair, disbelief or fear, let them. If they’ve brought it up, it’s probably because they need to get it out. Don’t imply that their extremely founded fears are unfounded. Just listen. Try not to interrupt or disagree.
5. “She’s a fighter. If anyone can beat this, she can.”
“Fight this. Beat this. Kill it. Smash it. You’re a warrior.”
It’s not war. Or CrossFit.
You’re watching the patient do everything the doctors tell them to do. They can do no more.
If rounds of chemo and radiation and surgery and drugs don’t work, will people think that they didn’t fight hard enough, weren’t strong enough, that they just gave up? Did they fight less valiantly than someone else?
It’s another enormous pressure to put on patients. And on the families witnessing their bodies fail and for whom it’s probably painfully clear that no battle or strength of character is going to reverse.
Coming out the other side of cancer is based on so many factors (including inexplicable luck). Personality and combat style are not among them.
Just say: “I’m really sorry you’re all dealing with this.”
6. “I read about an amazing diet that cured a woman’s cancer in Australia. I’ll send it to you.”
No, please don’t. Just think very carefully first about whether your best-intentioned advice will be helpful.
“Has she cut sugar from her diet? I heard of someone who decided against chemo and visited a shaman and she’s the healthiest person I know. I’ll send you links to a few articles on the power of positive thinking. He should be drinking a green juice twice a day. Are you all still eating meat?”
Cancer is complicated. Pushing vitamins and yoga and ketogenic diets onto patients undergoing a treatment plan devised by a multi-disciplinary team of experts the family has come to trust – in whose hands they have almost literally placed your loved one’s life – implies that we’re not doing enough. That more could be done. And we just aren’t bothered to research it.
Respect the patient and their choices. Don’t add guilt into the horrible mix.
If you know of something that helps to relieve nasty side effects – frozen pineapple chunks for mouth-sores, ginger for nausea – go with that. Just think carefully before you offer it.
7. “I know someone who had the exact same thing as her and they’re flying it now.”
Cancers are not the same. Experiences are not the same. Based on our family’s experience and watching one person progress compared to the other, we often observed that different forms of cancer are like different diseases.
Don’t go there. Teams of experts make specific treatment decisions based entirely on that one individual’s case.
Don’t tell a story about someone who had “the exact same thing” and died (yes, this happens). Be careful with the one about the woman who “had that 20 years ago and she went and kicked cancer’s arse”.
Don’t say, “My neighbour forced herself to walk Killiney Hill every day without fail while she was having chemo. She said she’d have gone mad if she hadn’t had that to keep her going. Tell your mum.”
I didn’t tell my mum. That story only made me worried that she, undergoing treatment, was hiding something more serious from us: ‘How come that woman can hike a 10k every morning and my mum is struggling to get to the top of the stairs?’
8. “I don’t know how you’re coping. I’d fall to pieces”
A supermarket car-park on a Sunday morning is not the ideal spot for the community to witness a meltdown.
“I have no idea what’s happening and in fact I didn’t think I was coping very well at all but now that you mention it, I’m reminded that we have no absolutely no choice in the matter and we’re doing just about all we can to keep breathing and standing upright.”
You would probably keep upright too. But the family dynamic could mean that you feel a responsibility to be The Strong One so you may be less likely to admit to feeling down, to ask for help or just for a break.
Do say: “I know you have some bad days. If you want to go for a walk or breakfast, let me know. You can cry or scream, talk or not talk.” Just a text. Heart emojis are always welcome too.
9. “I heard about the scan results, amazing news. Are you popping Champagne tonight?”
The reality is that there has most likely been a long, terrified lead-up to that scan appointment.
You’re back in the hospital, your optimism scorched, aware that the cancer could re-erupt. It’s not all over and they’re not “cured” just because they’ve finished their last treatment or the scan has shown a shrinkage. Life may get better but for many, it will never be quite the same.
Do say: “I’m glad you’ve made it through such a crap time.”
10. “I feel so bad I wasn’t around. I just didn’t know what to say.”
Of course you don’t know what to say. We don’t either.
But admitting that is better than avoiding it and saying nothing (except in the instances above where it’s better to say nothing). Or: “I know I haven’t been in touch but don’t worry, someone from down the road has been updating me.”
Send a card. It’s never too late. Never.
Sarah Geraghty is a writer, a Kildare woman, a dog-owner, a daughter, a sister, a godmother and a marathon runner. You can find her on Twitter @SarahCGeraghty
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