Janette Rawlinson is a consumer member of NCRI’s lung cancer advanced disease sub-group and Consumer Forum, steering committee member of British Thoracic Oncology Group and ELF lung cancer patient advisory group. Here she shares her thoughts on the language of cancer and asks if lessons can be learned and applied during the COVID-19 pandemic.

When it comes to illness, especially potentially life-changing illness, we often struggle to find effective words to express the situation so lapse into analogies, metaphors, give our condition a nickname or identity to deflect, distract, deny or otherwise cope with our thoughts.

Since involving myself in the cancer research world, its language and terminology has fascinated me. Whether used by patients, relatives, professionals or reporters – words commonly used include heroes, warriors, fighters, battle, war, courageous, spirit, brave, positive attitude, victim, sufferer, cancer journey, resilient, tough, fighting the big C – the list goes on. Some endear, attract, repel or demotivate to different extents.

Language of cancer

Many people have their preferences or dislikes amongst these. Some affect us more than others. Others suggest qualities that have little bearing on how cancer develops and can feel like an additional burden for patients.

If people ‘lose their fight’ did they not put up enough of a struggle? If they ‘fought bravely,’ ‘showed courage or fortitude’ did that make a difference? ‘Stay positive, it makes all the difference’ – does it? Where’s the evidence? Two of the most positive patient advocates I’ve ever met ‘succumbed’ to their stage iv cancer… Why didn’t their attitude help them?

A session at the 2016 NCRI Cancer Conference by Elena Semino piqued my interest in the language used when communicating about cancer. Her research evidenced the impact of language on behaviour and a persons approach to treatment and concluded it wasn’t always helpful.

A presentation at the British Thoracic Oncology Group Conference compared terms used in breast cancer awareness month with lung cancer awareness month, their respective media coverage and the stance taken by both campaigns, reflecting the stigma and lack of celebrity endorsement surrounding the latter – now the most common cause of cancer death in the UK.

A brief discussion at a recent NCRI Consumer Forum drop-in session suggested the following Radio 4 programme – ‘Fighting Talk – how language can make us better’

Other applications – global pandemic

Now we are seeing and hearing similar terms applied to the COVID-19 pandemic. The BBC reported that Dominic Raab knew Boris Johnson would ‘pull through’ from COVID-19 as ‘he’s a fighter’ …. Does that mean the many who haven’t made it weren’t?

Comparisons with battles may help if a person has control over the outcome, but often with serious illness, control is limited. We may all be ‘fighting a common enemy’ whether cancer or COVID-19 and both exhibit very adaptive reproductive systems inside the human body, but using such terms for individuals is probably unhelpful.

Suddenly everyone is a scientist or statistician – antigens, antibodies, flattening the curve, R number, super spreaders, asymptomatic, silent carriers, international comparisons – until results don’t quite bear out the anticipated responses.

Many with serious health conditions, including cancer, have had similar expectations dashed when new treatments were similarly hyped as cures. Those involved in research are probably more familiar than most on how long it takes for a new treatment, vaccine or diagnostic test to be licensed for general use. It’s slow.

BC = ‘Before COVID-19’ or ‘before cancer’? ‘New normal’ now common yet previously used by cancer patients or their clinicians. Will the ‘old normal’ ever return? Or a ‘newer’ normal? Does ‘vulnerable’ suggest a person’s perceived ‘weaker’ character or a health category to protect, what about ‘extremely vulnerable’? ‘Shielding’ may be felt as ‘imprisonment’, in keeping with ‘lockdown’ terminology. Many being asked to ‘stay at home’ are fit, fiercely independent and struggle with the terms being applied universally.

Learning lessons from cancer narratives

Are our experiences a ‘journey, pathway, roller coaster ride’? Do we really need to ‘kick cancer’s butt?’ Have we really ‘got this’? Can we really ‘stay strong’ all the time?

Former Chelsea footballer Gianlucca Vialli was described by media as ‘fighting cancer’ and ‘beating illness twice’ following his recent pancreatic cancer experience. He admitted to being ‘very scared about cancer returning’ and ‘remains fragile’. He dislikes the ‘fighting talk’ preferring to think of his experience as ‘a journey with an unwanted passenger’.

It left me wondering how we’d view that – a parasite? A tick? A hitchhiker? A hijacker?

I guess it depends on whether a condition takes over our life or whether we adapt. Looking back isn’t always helpful. The future is yet to happen but today is a gift, that’s why it’s called the ‘present‘. Make the most of it if you can!

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