words about cancer

The Power of Words with Maggie’s

 Around the time I was diagnosed with breast cancer in 2015, I wasn’t aware of anyone like me talking about their cancer experience in an open way. There were blogs and there were websites, but these were largely aimed at older women. I felt so far removed from the conversation these websites were having, I decided to start my own. I began blogging about my experience, not only as a way to come to terms with the treatment I was having and the things I was facing, but to open up that conversation that felt completely unlike me.

When you’re dealing with something that no-one really wants to talk about, it’s hard to find the words to explain things. Likewise, it’s hard for those around you to find the words to say what they really mean when they’re faced with things they can’t understand or don’t really want to think about. When it comes to cancer, the language used around the topic is incredibly divisive and it’s something every cancer patient I’ve spoken to has strong feelings about, regardless of where they are with their own experience. For me, I was staggered by the way people described me as “brave” and “inspirational” when all I had really done was go about the business of tackling the cancerous cells that had made their home in my right breast. And since I entered the world of cancer, the language people use to describe this world – from “battle” to “journey” to “suffers” and everything in between, has become something I am incredibly passionate about.

Research around this topic is becoming more and more important as more people survive cancer. We all know the stats. 1 in 2 people will be diagnosed with cancer in their lifetimes, but more and more people are surviving beyond the 10 year survival rates often hauled out to show how treatments are improving. In 2015, Professor Elena Semino, a linguist from Lancaster University looked at the ways people talk about going through cancer treatment. The research, which studied 1.5 million words showed that the most used metaphors for talking about cancer are “violence metaphors” – i.e “battle” “fight” “war”, and “journey” metaphors. Semino went on to explain that often, patients feel disempowered by these kind of terms because they feel “they aren’t given the right “weapons” to fight or that the doctors are “the generals” and they’re just common “foot soldiers” in the fight against cancer.

The research also added that while calling cancer a “journey” doesn’t create the opportunities for failure, it’s not necessarily better. It can provide comfort to think of others on the journey with you,  but  “for some other people, there is this idea of a reluctant journey. One person says ‘how the hell am I supposed to navigate this road I don’t even want to be on.’”

I never want to claim that I speak for all cancer patients, so I asked the network of people I have met during my own cancer experience for their thoughts – and wanted to share a couple with you…

Izzy told me: “I loathe ‘brave’. I’m not brave, I’m just me and you would be too in this situation. Also again with the implication that to admit you’re struggling makes you ‘not brave’. It’s so toxic”

while Harriet added: “I hate all the fighter stuff – it’s only used for cancer and not for other serious illnesses (heart disease fighter, diabetes fighter, MS fighter..!)”.

Jacob said: “I’m not a fan of the whole ‘fighter’ and ‘positive attitude’ tags. It invites unneeded pressure on cancer patients already going through so much. I mean try being positive when you’re a shadow of your former self with poison coursing through your veins with a medicated depression caused by prednisone. It’s completely unrealistic and would test anyone both physically and mentally.

Shelley looked at it totally differently and said: “I’m not a fan of people saying I beat it or I’m better now etc, defensively I take that as though I should be over it now when in reality I’ve found it harder mentally after active treatment than during.”

Joh added: “While I was having treatment I hated the term ‘fighter’ as it felt totally out of my control and that I was merely doing what was necessary rather than actively kicking arse. It was only afterwards that I agreed it was indeed a battle so the obvious term to use is fighter although I think soldier is more appropriate (semantics!)”

Zoe: “I personally like the fight talk but I don’t use it to people who don’t like it. I’m never offended if someone asks me not to use it as it’s a personal choice.

Sarah: “I got sent a document the other day by a well-meaning friend that had the phrase “cancer victim” in its opening gambit. Never considered that word before then.”

These are people who have experienced all different types of cancer and are at totally different points within their treatment plan. While the opinions differed from person to person, pretty much everyone I spoke to had some form of strong feeling about the language around cancer – proving what an emotive, divisive and difficult topic it is.

But there was one response which was largely unanimous. Every person I spoke to agreed that they did not like the fight analogy when it was associated with someone who had “lost”. The use of this phrase suggests that people who die as a result of their disease haven’t fought hard enough. That they didn’t win because they didn’t give enough to their treatment. I’m pretty sure the dislike of the term “lost their battle” is, for want of a better description, a hill which any number of cancer patients would die on.

This week The Guardian ran an article off the back of some research by Macmillan that explored the idea that “Pressure to stay positive may be a negative for cancer patients”. This is another point of view which was widely echoed by the people I spoke to. As Jacob mentioned, it adds unnecessary pressure to patients at a time when they are already facing more pressure then they know what to do with. They are living in a powder keg and giving off sparks. This is something I 100% recognised from my time in cancer treatment. I was scared and I was vulnerable and I was exhausted – but whenever anyone asked me how I was doing, I slapped a big smile on my face and told everyone I was “doing fine – all things considered”. My mum has always said “fine” means “f*cked off, insecure, nervous and exhausted” which at that time I think was totally accurate. The pressure to be positive suffocated me. It still suffocates me now. I remember reading an article that suggested those who were prone to depression before a cancer diagnosis were more likely to die of their disease because of the lack of positivity in their life. I have lived with depression for most of my adult life – this idea that positivity could affect my chances of survival was, and is, terrifying to me.

***

I think it’s important that every patient creates their own metaphor for their cancer experience. I read something that suggested that having cancer was a bit like seeing someone you’d rather avoid at a party. As far as you’re concerned, you just want them gone. They’re there, and there’s nothing really you can do about it, so you just have to co-exist together until the end of the party. I vividly remember the line “you eye each other furtively across the room” but you never interact. Then, when the party’s over you’ll go your separate ways. I’ve heard having cancer being referred to as having an unwanted house guest, but even prefixed with “unwelcome” or “unwanted”, “guest” makes it seem like they’re a bit welcome, or they might have been once. So during my treatment, I called my cancer a squatter. Unwelcome. Unwanted. Naming it in this way gave me some sort of control over a situation that was far beyond the realms of my grasp.

But no matter how the individual describes their cancer experience, we’re a long way from the media nailing how they do it, and doing it in a way that sits well with those who have a lived experience of the disease. Despite ongoing campaigns from charities to change the way the media speaks about cancer, they often still reach for the same tired old cliches, often without realising the impact this has on those who have had or are undergoing treatment for cancer.

Here’s a couple of headlines and quotes from news articles covering those who have died from cancer (bear with me, I know this is a bit bleak)


“Labour’s Tessa Jowell dies at 70 after cancer fight”

“Alan Rickman died in January 2016 at the age of 69 after a battle with cancer”

“David Bowie died Sunday after an 18-month battle with cancer”

“Patrick Swayze loses cancer battle at 57”

“Actress and singer Bernie Nolan has died at the age of 52, following a long battle with breast cancer.”

It seems like the media struggle to find anything other than lazy euphemisms to describe these people – when often their lives have been rich and full and surrounded by dazzling achievements. To see them reduced to a “battle” they have “lost” seems to diminish every other part of the their lives.

I think in the age of social media, the role of those who have or have had cancer as advocates for this and so many other things that affects us is essential for driving change. It’s so important to acknowledge that the way we talk about cancer as our first hand experiences can have a hue impact on the way others think and feel about cancer. The advent of social media has allowed us to open up the conversation around cancer in a way we never have done before, and in doing so we’re constantly reducing the taboo. We’re no longer talking about “the big C” in hushed tones, refusing to even use it’s name, like some kind of health related Voldemort. And opening up the conversation this way means that we’re spreading awareness. Awareness leads to education. Education leads to improvement. We can talk about problematic boobs that try to kill you, fannies that give you grief and the for want of a better word “shitty” symptoms you should be looking out for for bowel cancer. The more we do this and the more we humanise this disease which has been personified into a spectre of darkness and terror, the more we can drive the conversation forward. As we do this, we will be educating more people how to talk to their pals who have had cancer, and we can call on them to call out the media for clumsy descriptions of an untimely death.

But, from my point of view I think there are a few things that are important to remember. As far as the media is concerned, it’s more important than ever for the cancer community to take charge in holding them accountable for their descriptions. So next time you see a headline that says “lost a battle” – tweet about it. Write a letter to the editor (old fashioned but I reckon it’s worth a punt). Use your experience to empower others and educate to the best of your ability.

But I think when it comes to family, friends and well-meaning well-wishers, kindness and understanding is key. Remember the person you were before cancer and how you would have felt in the situation they’re facing. Remember when regular folks are talking about cancer, they’re doing it to the best of their ability. I know that I would have been guilty of succumbing to some of the cliched stock phrases people to turn to before I lived in the cancer world.

It’s key to remember that, most of the time, people are doing the best they can in the circumstances they face.

 

**This piece is a talk I gave as part of a Power of Words event at Maggie’s. Maggie’s offers free practical and emotional support for all people living with cancer, and their family and friends. Their centres are a home away from home tucked into corners of hospitals and NHS spaces around the UK. The centres all aim to be a place of safety and security for those experiencing a cancer diagnosis. I visited their Barts centre and they have created something truly wonderful for their service users. If you’re going through or have been through cancer and need some time, space or expert guidance, find your local Maggies.

One thought on “The Power of Words with Maggie’s

  1. freda Cameron says:

    I enjoyed reading this. I am one lucky lady . After going back and forth to my Dr with a cough for over 3 years i insisted they send me to someone who knows more. They found my lungs covered in tumours. They thought it was cancer . Then had another CT scan which showed up a cancer tumour in my stomach . At this stage i was devistated . Then after a lung operation and removing the largest tumour . It was not cancer yet. It is called,, A Tipical Carciniods .I am living with this, and have had no pain i am doing well. Then i had my stomach tumour removed last May .I am on medication for the next 3 years . I used to be such a worrier and thought OMG i will die. But no i am not like that anymore and decided to be positive .I have never talked much about it except to our local support group Clan . I only told close family and my very close friends no one else. I am happy getting on with life and enjoying my Hobby (sewing) . and grandchildren. I have never called it the big C or anything i call it my wee situation i have had. I also had Ovarian Cancer age 23 . i am now 71 . WOW how lucky can one old lady be .I have no complaints what so ever . I can imagine how very hard it can be for most people and feel for them suffering. I take a day at a time and it does not come into my mind every day i just get on with life. I go back and forth for my scans and check up’s then move on. I have never been a brave person so that word never comes to my mind . I have amazed myself and my family at how i have dealt with this situation. I am doing OK. Hugs and love to all the people who are suffering and going through this dreadful illness.

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