getting hit by a bus

10 things you shouldn’t say to someone with cancer

Okay, we get it. Sometimes, talking to your friend or relative with cancer feels awkward. What do you say? What if you say the wrong thing? How can you help?

Recently, a discussion in our private Facebook group took off – “What’s the silliest thing someone has ever said to you about cancer?” asked David, one of our members. More than 110 comments later, we felt like we had to share some of them with the world! Take a read and let us know what you think. If you’ve got cancer, we hope you’ve managed to avoid these comments (all of these are real, by the way – we haven’t made them up!).  If you’re supporting someone with cancer, we know you want to help. Stuck for words? Sometimes admitting, “I don’t know what to say” can be the best way forward.

1. “You don’t look like you have cancer”.

In the movies or on TV, the person with chemo usually spends their days losing their hair and looking increasingly ill. But these days, a lot of cancer drugs don’t make you lose

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All of these people have, or have had cancer.

your hair, and many people don’t have chemotherapy anyway. Some people end up on “watch and wait” without treatment right away, while surgery and radiotherapy are frequently given for more localised cancers (or even advanced cancer if they can halt the spread). The key message here? A lot of people don’t “look” like they have cancer but just because you can’t see the side effects of the cancer or treatment doesn’t mean they aren’t there. A simple “How are you feeling?” can be a much better, and more sensitive way to start a conversation.

2. “So, how long have you got?” or “I’ll help you with your bucket list.”

We all know that cancer can cause death. But if, when, and how that might happen isn’t usually something that we want to talk about. When you’re asking your friend or relative about their illness, ask yourself whether your questions are more for your own information (read: nosiness) or to help them.Bucket List

Most people with cancer aren’t given a “timeline”, and even if they are, they might not want to share it. If your friend is openly creating a bucket list, great, but generally speaking it’s good to keep the death talk to a minimum. Journalist Helen Fawkes created a “List for Living” after she was diagnosed; this can be a much more positive way to think about treating someone with cancer to a nice experience than a “bucket list”.

3. “You don’t need chemo…..I know someone who cured their cancer with [insert questionable cure here]” or “Chemo doesn’t work – it’s just a plot by Big Pharma to make money” or “Have you tried turmeric?”

Wheat grass

This will not cure your cancer.

So, your friend is prepping to start chemo and this seems like a good time to tell them about an article you read about someone who shunned chemo and cured their Very Deadly Cancer with kale and wheatgrass, right? Wrong.

Chemo can be tough but it saves lives, and whether you agree with your friend’s treatment decisions doesn’t matter. Eating more fruits and vegetables, and getting more exercise is certainly good for us and there is some evidence that it can help reduce rates of relapse in certain cancer types. But if the person you’re supporting is undergoing chemotherapy, consider carefully whether it’s definitely the right time to bring up that raw food diet that your aunt’s sister’s best friend used to cure her dog’s leukaemia. It’s probably not.  Instead, why not make them a nice meal and take it over to their house? (Only include kale if you know they like it!).

4. “That’s a good kind of cancer” or “At least you’ve lost weight. There’s a silver lining in everything, right?”

When you’re diagnosed with a life-threatening disease it’s pretty hard to find any silver linings. Self-esteem can take a massive hit, so try to avoid making comments about someone’s appearance or weight or downplaying the seriousness of what they’re facing. Anyone diagnosed with cancer is likely to feel pretty shocked by the diagnosis. Sure, some cancer types are more curable than others, but as most oncologists will tell you, every case is different. Telling someone they’ve got a “good cancer” risks minimising their feelings. A better approach might be to say something like “I’m so sorry about your diagnosis. Do you want to talk?”

5. “Cancer is caused by past trauma and stress”

There is little good quality evidence that stress and cancer are linked and if your friend has cancer, they’re probably stressed because, you know, they’ve got cancer. Ask yourself what you can do to relieve their stress. Can you take them out for a film or a drink? Cook them dinner? Walk their dog? It doesn’t need to be a big thing – even small gestures can mean a lot. Take a look at our blog about how you can help.

6. “I’ve heard that’s a really bad way to die” or “I know someone who died of that.”

As with point 2 above, avoiding death talk is generally the way to go. Talking about how bad/painful/awful death might be is a big no no. And telling your friend or relative with cancer that you know someone who died of the exact same thing is also to be avoided. Know someone who has lived 20 years after a diagnosis? Feel free to mention them! Those are the stories we like.

7. “Managing someone with cancer will look good on my CV” or “What about me?”

If someone you know has cancer, it’s time to think about all the great ways that you can support them. A cancer diagnosis is about the person who has cancer and those immediately surrounding them (partners, parents, children). This can feel odd if you’re used to getting support from your friend or relative but think of it as a good opportunity to repay all the love and support that you’ve received in the past. Unsure who to turn to for support? Take a look at this handy “ring theory” guide and remember: support in, dump out!

Ring Theory

8. “If you need anything, just let me know.”

We know it might sound odd, but often, we don’t know what we need, and even if we do, it can feel scary to ask. Rather than making your offer general, try to make it a bit more specific. Ask if you can make dinner on a Tuesday, drive your friend to their next appointment, or do their grocery shopping next week. By making it specific, you’re taking away the burden of coming up with something – and that is helpful.

9.“Everyone dies” or “Any one of us could get hit by a bus tomorrow”.

Bus

“I might get hit by a bus tomorrow”.

You’re right – everyone does die. But the difference with cancer, especially cancer at a young age, is that death goes from being a vague hypothetical, to something that is giving you a cold hard slap in the face. That bus everyone’s talking about? Your friend has already been hit by it. They’re just waiting to see whether they’ll survive, and they’re likely really scared. It’s great to ask someone if they want to talk but sometimes distraction can be the greatest gift. Seen a funny cat video online? Now may be the time to send it over (assuming you’ve already checked on how they’re feeling).

10. “So, you’re all better now, right?”

One of the things that few people talk about is the long-term effects of cancer. The media shows us people who have survived cancer and go on to run a marathon or write a best seller. What you don’t get to see is that those same people are often also left scarred, depressed and tired after months or years of intensive treatment. For many people with cancer, the end of treatment is a tough time. They’re no longer seeing their doctors and nurses as regularly and, on the surface, life appears to be returning to normal. They may be in remission or be looking forward to a long treatment break but they’re unlikely to be “all better now” or for a long time to come.

We know it can be tough to keep up the same level of support once treatment has finished but keep in mind that your friend or relative may be feeling especially lonely. Make sure to keep checking in and, if you can, make sure they still get the odd treat. Be ready to chat if they want to talk about how they’re feeling and remember that you don’t have to solve all their problems. Just being a good listener can be all that’s needed.


If you’re in your 20s, 30s or 40s, why not join us online? We’ve got a private Facebook group here, or you can follow us on Twitter or Instagram

Supporting the supporters of young adults with cancer – our first Shine Plus Ones workshop

Back in March, Shine held its first Shine Plus Ones workshop (we meant to publish this blog sooner – but we’ve been busy!). It was a great day and we were really happy to put some faces to the names we’ve come to know via email and social media over the last Plus Ones 5couple of years!  In our latest blog, Salma, one of the participants, explains how the day went down. We’re really keen to expand our Plus Ones group so if you’d like to get involved, drop us an email at plusones@shinecancersupport.org, or join our Shine Plus Ones Facebook group. The Plus Ones have also been meeting up for drinks in London and the more the merrier so please do get in touch!

From it’s 18th Century origins, the beautiful Somerset House by Waterloo Bridge has been a centre for debate and discussion.  How fitting then that a group of strangers should meet here to talk of something that is rarely given the platform it deserves.
Back in March, Shine held its first Shine Plus Ones workshop.  We are the other half of Shine – or in better terms the other halves.
Plus Ones 3
The wonderful Shine Cancer Support has helped and continues to support thousands of young people with cancer through it’s meetings, retreats, social events, blogs, Facebook pages, Twitter feeds – and much much more.  But behind each of these people is someone who keeps it all together, day in day out, the spouse, the partner, the sibling, the parents……We are the Plus Ones and we sometimes need help too.
Public transport did it’s best to delay and reroute us but we are not a bunch to give up lightly and eventually all 22 participants managed to make it to Central London for the workshop.
Tirelessly organised and led by Ceinwen, Emma and psychologist Jason, the day began gently.  We’d never met each other before and none of us, we discovered, are that good at talking about this stuff.

We all provide care and support for our loved ones but how do you stand next to someone with cancer and say “Hold on – what about me?”.   You just can’t do it – unless that is, you are in a room full of people who feel exactly the same way.  And this is the genius of the Shine Plus Ones group: we all get it.  There is no judgment here, you’re allowed to say that you are angry with the person you are caring for, you are allowed to say you feel depressed or that you feel you’re being treated unfairly.  These little things are actually huge.

Plus Ones 2

Some of the ways our Plus Ones deal with stress

The day was cleverly arranged to get us thinking and talking.  It was invaluable to be able to give and receive advice to and from each other.  Jason is the one though who bound the day together; his personal and professional experience really cleared the haze for most of us.  As a psychologist, he really helped us to separate what are thoughts and what are realities, and he gave us tools to deal with our stresses and anxieties and taught us to be kind to ourselves. He made it ok to have a bad day.
Plus ONes

The workshop gang went for drinks afterwards. They’re now meeting up regularly.

At the end of it, we had a network, an email list and a few phone numbers.  Some of us have met up already since that day – a noisy table in a crowded bar where we blended in with all the other noisy tables of people laughing and drinking.  We don’t need to talk about cancer, we don’t need to cry or shout or talk deeply about anything – but the point is that we can if we want to, and we all know it.  There is another meet up planned and there will be many more.  And hopefully our group of friends will grow over time – not because it’s a nice club to be a part of, but because out of all this chaos and heartache it’s a huge comfort to know you’re not alone.

To find out more about Shine Plus Ones, please email us on plusones@shinecancersupport.org, or request to join our private Facebook group. This workshop was made possible through the support of our fabulous friends at Travel Insurance Facilities

Fighting talk: Why I’m not ‘battling’ my cancer

Most of us who have been diagnosed with cancer will be familiar with the war terminology that frequently accompanies a diagnosis. Fight, battle, war – they’re all words that get thrown around when you’re going through treatment or living with cancer. But are these words helpful? What do they really mean? In our latest blog, Sarah Carlin explains how she feels about this terminology and why she’s not ‘fighting’ her cancer.  We’d love to know what you think about the words that are used to describe a cancer experience – tweet us on @shinecancersupport or email us on info@shinecancersupport.co.uk. Happy reading!


JoJo Gingerhead, was a member of Shine who blogged prolifically about her experience of living with a secondary triple negative breast cancer diagnosis. I never knew Jo personally, but I admired her from afar, not least for her aim of “trying to find light in a dark and scary situation without using the words fight, battle, journey or survivor”.

Uncle Paul

Sarah and her Uncle Paul

The rhetoric around cancer was a bugbear of mine long before I received a diagnosis. I had a much-loved uncle who passed away from a brain tumour at the age of 28, and I’ve always been pretty sure it wasn’t because he didn’t fight hard enough. Yet it’s seemingly impossible to talk about cancer without using militaristic language.

Many organisations use this kind of language to get people on side. Reading slogans like “we’re coming to get you”, you’d be forgiven for thinking that cancer was some sort wildcard despot rather than a complex range of different diseases.

Cancer is not some sort of playground bully you just need to square up to, yet so many people seem to think it is. I’ve had someone tap their head and tell me not to worry because “it’s all up here”, as though all you need to do is stick on the Rocky theme tune and channel your own determination in order to stop those cells dividing. Something, I’ll wager, they’d never say to someone with COPD, or heart disease, or HIV.

There’s also the problem of confirmation bias. Many people who survive the disease talk about their determination not to die, so the idea that this somehow was a factor in their survival seeps into the public consciousness. But the will to live is a pretty much universal human characteristic. You obviously don’t hear from the people who were equally determined, but who died anyway because that’s how disease works.

Sarah Carlin photo 1

Blogger Sarah

Another issue is that nobody “wins” their battle against cancer, or certainly not in the way the media portrays it anyway.  Few people finish chemo, fist-bump the nurses and declare themselves triumphant. You crawl home and spend the next weeks, months, years sh*tting yourself that it’s going to come back. Often it does. If it doesn’t, then maybe, just maybe, after five years has elapsed you might tentatively feel like the danger has passed. There’s no VE day, no calling the troops home, no bunting. This is a disease in which you can never be wholly sure that the gruelling treatment you’ve just endured was enough. Sure, you may have vanquished the enemy on the frontline, but who knows if there are little metastatic guerrillas regrouping and waiting to re-launch when the time is right? My own initial brush with cancer was as close to a clear cut victory as anyone could get. Successful resection, no lymph node or vascular involvement, stage 1 – peace for our time. The bombs fell a year later, however, when it returned in not one but seven places.

Sometimes, the idea that I can fight my cancer through sheer force of will is seductive – I can completely understand why so many people choose that as a way of coping. The thought that you could die so young of this disease just seems like such an insult, so outrageous that the adrenaline runs through your veins and yes, you want to fight. As in most instances in which your life is in danger, the fight or flight instinct has kicked in.

But I know that I can’t fight my cancer. If I live, it won’t be because of anything I’ve done or felt. It will be because of a brilliant consultant, effective treatment and dumb good luck.

So whenever someone tells me I can fight it, it makes me wince – not just for me, but also on behalf of my uncle and on behalf of the many others who are no longer with us, like JoJo.

Sarah Carlin is 31 and works as freelance in PR and as a copywriter. You can read her other blog for Shine (about the perils of reading about cancer on the Internet) here