When it comes to talking about lung cancer, people aren’t very good at it! It’s one of the biggest taboos. We feel nervous and uncomfortable as we struggle for something to say to fill the growing silence and, as a result, we find ourselves saying something inappropriate.
This has certainly been the case for many people living with lung cancer. In fact, some of responses they have heard are jaw droppingly inappropriate.
Here are ten of the worst…
How long have you got?
Or even worse in Mags’ case who heard the words ‘OMG it’s stage 4. You’ve not got long then!’
This came up time and time again, people basically being asked when they were going to die! Are there many things more tactless, and heartless, than that?
How lovely to be chauffeured around…
This was said to Christine by her Personal Independence Payment (PIP) assessor. She could no longer drive because her cancer had metastasised to her brain.
People with brain mets must stop driving. This is often a difficult thing to come to terms with. It can significantly impact a person’s independence and what they can do. They are all of a sudden reliant on others to take them places, including hospital appointments. This can make them feel like a burden at a time when they are already dealing with so much.
Come on, this is not something to say to anyone whether they’re living with lung cancer or not! Talk about sticking the boot in! How on earth do you reply to that? ‘Gee, thanks. You’ve got fat?!’
Bet you wish you hadn’t smoked now
There is so much judgement in that sentence. You can hear it oozing out as you read it. Bet you wish you hadn’t smoked now.
Comments relating to smoking were by far the most frequent answer in our survey and it is simply unforgivable. It places blame. It points the finger. It is unsympathetic, uncaring and unhelpful. There is no denying the link between smoking and lung cancer, but where is the compassion? Where is the humanity?
Author, Sophie Sabbage, is one of the 10 patients to share, in depth, their experiences of what people have said to them post-diagnosis. The ‘Did you smoke?’ question comes up again and again and Sophie is very candid, and passionate, in her response:
“I led a very self-destructive life in my teens and my 20s. Most of my 20s disappeared in a cloud of angst, low self esteem and smoke. I was smoking behind the bike sheds at 16 because I thought I was ugly, unlovable and worthless.
“I hope there comes a day when we are emotionally intelligent enough to understand why they might have started smoking in the first place.
“Instead, it is the most stigmatised, judged cancer that I’m aware of. We don’t say to people with liver cancer ‘Are you an alcoholic?’. We don’t ask people with colon cancer ‘How much sugar have you eaten?’ We just don’t do it. We treat them the same way.”
You don’t look sick
Am I supposed to look like a walking skeleton?!Neil
There remains a misconception that people with lung cancer are going to become ill very quickly. They’re going to lose weight, become quite frail and, ultimately, die pretty soon after diagnosis.
Whilst this sadly is the case for some, advances in treatment and early detection means more people are living well with lung cancer.
Treatments such as targeted therapies and immunotherapies can have less severe side effects than traditional treatments, like chemotherapy, allowing people to lead relatively normal lives with lung cancer.
Why do you breathe like that?
Well, sorry for still breathing! I’m not self-conscious about it at all now, thank you!
I knew someone who died of lung cancer…
This is actually one of the most common responses when someone says, ‘I have lung cancer’. It’s something that many people in our survey have had said to them, including Sue:
“The worst thing someone has said to me is ‘I knew someone who had lung cancer’ and then they give you all the details of how bad it was. It made me feel awful.”
We understand it is an attempt at empathy, a shared knowledge or common ground, but please stop.
You poor thing
Phrases that evoked pity like ‘I feel so sorry for you’, ‘a victim’ and ‘you poor thing’ were the most hated phrases in our survey. It was particularly a bug bear for Neil who is living with stage 4 lung cancer: “I haven’t written myself off, so I don’t want anyone else to”.
Positivity is a funny one. It is great if someone feels positive about their diagnosis, but they should never be told to be positive or stay positive. It should never be forced on them. Cancer is brutal and, some days, it is just too much to bear.
Many people who completed our survey admitted to feeling under pressure to put on a brave face or ‘stay positive’ when they’re talking about their diagnosis. Understandably, many do this to protect their loved ones and stop them worrying or getting upset. Some, though, feel it is ‘expected’ of them and that is a huge weigh to carry.
It is ok not to be ok. Staying positive has a similar implication to the word ‘Warrior’ which Emma has particular umbrage to:
“When people say the word ‘Warrior’ to me, it makes something run down my spine that I don’t like. I’m not a warrior. I’m a mum, a daughter, a wife. I have great days when can pick myself up and be fine, and I have days when it’s grey and there’s no fight left.
“I think to say ‘Warrior’, it’s saying you’re tough and strong and no one is – not all the time – and to try and aspire to be that, you can make yourself feel like you’re letting yourself and your loved one down. But you’re not. You’re just being human. We all cry, and we all need to hide away. We also need people who can come round, pick us up, say it’s ok to cry and not be strong or positive that day.”
Interestingly, one of the worst things that was said to Janet was ‘Why are you so positive?’
We need to let people choose how they want to deal with their diagnosis, not judge their choice but, say it with me, follow their lead!
Only the good die young!
This was said to Amanda, who is living with stage 4 ALK+ lung cancer. It was clearly incredibly helpful!