People who have been diagnosed with lung cancer, including James Brokenshire, the former Secretary of State for Housing, Communities and Local Government, have shared their views about the thoughtless things people use when they try to talk about their disease.
This November – Lung Cancer Awareness Month – Roy Castle Lung Cancer Foundation is urging that we listen carefully to what people with lung cancer say and take cues from them to avoid making crass or hurtful comments.
Mr Brokenshire, MP for Old Bexley and Sidcup, was Northern Ireland Secretary until January 2018 when he stood down to have surgery for the disease. He made a full recovery and was back in Parliament within weeks. Yet friends and colleagues often struggled to find the right words.
He said, “I remember when I returned to work, a colleague turned round and said ‘Oh, I didn’t expect you to come back!’ I know they didn’t mean any offence, but it demonstrates the nihilistic perception there is around lung cancer and, therefore, the language associated with it.
“Yes, far too many people are still dying of lung cancer; and please note, they are dying, not losing their fight. However, we are now entering an era where more people are able to live with this illness for longer or, as in my case, survive it.
As Roy Castle Lung Cancer Foundation launched its ‘Follow My Lead‘ campaign, Mr Brokenshire added, “Sadly, many of us will be diagnosed with lung cancer in our lifetime so we need to find a better way to discuss it, to not be so afraid and uncomfortable about this perceived taboo and talk more openly and less awkwardly”.
Psychologist and bestselling author, Sophie Sabbage, is one of ten other lung cancer patients to share some of the clumsy phrases people use when talking to them following their diagnosis.
When I tell people I have lung cancer, one of the most common responses is ‘I know someone who died of that!’ Then they launch into graphic detail. I know it’s an attempt at empathy but really, that’s not the thing to say.Sophie Sabbage, living with late stage lung cancer
Roy Castle Lung Cancer Foundation canvassed people with lung cancer on how they respond to some of the most common words and phrases used about the disease.
They most disliked those terms that conveyed pity, such as ‘I feel so sorry for you’, closely followed by ‘you’re so brave’, ‘a victim’ and ‘lost their fight’. Many also resented having their life-partner described as their ‘carer’.
Sophie Sabbage added, “You see it in the press all the time. David Bowie ‘lost his brave battle’ with cancer. Victoria Wood ‘lost her brave battle’ with cancer. Terry Wogan, Peter Fonda, Leah Bracknell. They all lost their ‘brave battle’.
“Every time I see that, I just want to scream because it turns us into winners and losers. The ones who live win and the ones who die are losers. But there are hundreds and thousands of victories and transformations, changes and shifts and seizing the moment that people with cancer experience.
“If we make it all black and white, winners and losers, then all those victories get discounted.”
One of the patients who took part in the survey, Jane Holmes, said, “I don’t like to associate cancer with being a battle as somehow the connotation is that if you don’t live then you didn’t fight hard enough and that doesn’t follow”.
The picture is not straightforward however. While many people more than a year into their diagnosis resented this ‘battle language’, others said they drew strength from it. The majority of these were people diagnosed recently or whose disease is at an early stage, or who are currently cancer free.
Paula Chadwick, chief executive of Roy Castle Lung Cancer Foundation, said:
“What our survey shows us is that opinion around language is not black and white. What enthuses some is loathed by others.
Often, such clichés offer a crutch. They are there when we don’t know what to say. But they generalise lung cancer, and in some ways, trivialise it. Don’t tell someone ‘You can beat this’, when the reality is, they might not be able to.
“Every lung cancer diagnosis is different and so is everyone’s way of dealing and talking about it. There are different types of lung cancer, different stages, different treatments. Some days are good and some just aren’t.
“That is the crux of our awareness campaign. We want people to think before speaking to someone with lung cancer. Some of the things people have said are just jaw dropping!
“If someone tells you they have lung cancer, ask them how they are, not ‘Did you smoke?’ Ask them if they need anything, not ‘How long have you got?’
130 people are diagnosed with lung cancer every day in the UK. It is the most common cancer in the world and the most common cause of cancer death for both men and women in the UK, claiming around 35,000 lives each year, more people than are killed by breast, prostate and pancreatic cancers combined.
Paula Chadwick concluded:
“People with lung cancer need sincerity, not platitudes. They need support, not judgement. They need what they need because there really is no right thing to say, no tried and tested way to make everything better. But there are things that can make it worse. So, ask, and then Follow their Lead.”