Saturday 27 April 2019

Weekly Discussion Summary ~ The Language of Cancer

The Language of Cancer

In research literature, we are ‘survivors.’*In the media, we are ‘warriors.’* We are ‘fighters’, ‘battling’ cancer through cancer. We are described as ‘positive,’as ‘brave,’ ‘inspirational.’

In this week’s discussion, we shared our views and feelings about the language used to describe the experience of breast cancer.

Whether we are going through treatment for primary or secondary breast cancer, or, we’ve had breast cancer , we are all impacted by our diagnosis. We live with the consequences, with our changed bodies and minds. If we have been given an NED diagnosis - no evidence of disease following a mammogram or scan - we are supposedly in remission.  A temporary state of being, with the fear of recurrence or spread very real, and many of us take medication to help prevent this which brings its own side effects. If we have secondary breast cancer we live with cancer on a daily basis, continuing with treatment to help prevent progression. 

A few of us do feel that we are fighting cancer, engaged in a battle with cancer. This often resonates with us during treatment and because the treatments are so harsh and often debilitating.  Chemotherapy can be particularly aggressive. The image of fighting off the enemy, cancer, may be useful to us in maintaining a positive mindset. We also identify with the battle scars, the mutilation that is breast cancer surgery, and the mental scars that never heal.  Internal battles are real to us as we struggle with pain and fear. The image of the warrior ready to fight, to stand up for herself, ready to do battle if she needs to and to fight with all her being.

To say that someone has lost their battle or fight with cancer implies that the person hasn’t fought hard enough, they’ve somehow allowed the cancer to beat them.  The media uses this terminology all the time, announcing that someone famous is fighting cancer. Obituaries often say that someone has passed away after a long battle/fight with cancer, bravely borne. How can we be brave in the face of something that we didn’t choose, that we have no control over? 

Survivor, for those with a primary diagnosis who have finished treatment, implies that the cancer is gone, we are cured, we are free of the disease. The reality is that it is never over, we are always worried that it will return and statistics prove that we are right to be concerned. For those with a secondary diagnosis, we are living the best life we can, day by day, not merely surviving. Survivor also implies that we have done something right, while those who did not survive did something wrong. In the randomness that is cancer this feels very uncomfortable and can lead to survivor’s guilt, where we feel miserable that we are still here while others aren’t. This can be particularly strong where we have lost family members or where a family history of gene defects is part of our diagnosis. We ask, why us?  We are angry, and yet we feel to blame. The term survivor can also feel like tempting fate. However daunting the thought, we cannot truly call ourselves survivors until we die of something other than our cancer. Then we have survived it. 

Many of us dislike the word ‘journey’ in relation to having cancer, in that we didn’t choose to go down that road, to turn that way. It also implies that there is an end destination, that the cancer journey ends and a new one starts. There is no end.

We may be numb and mute in our search to find words to describe how we really feel about our cancer. It’s like being in a foreign country, and the fight is like the struggle for a breath when we’re under water.  We use the standard terms like survivor in our conversations, our writing, because people around us understand them.  We want to write about, blog about, podcast about, our experiences, in order to help others, and in order to do this we have to use words, we have to share thoughts through language.  

Other people also need to find terms to use to describe us, they need expressions which capture their own fear - the Big C, the worst of all illnesses - and perhaps terms like warrior help them. The terms make sense to other people so why not to us?  Because until you’ve walked a mile in our shoes, it’s so difficult to understand how we feel. 

A more positive term adopted by some of us is 'thriver’. We find our new normal, we move on, we move forward, taking our cancer with us. We can and do thrive, both after a primary diagnosis and also with a secondary diagnosis, in the sense that we are making the most of every day, we are living with gratitude and passion. However, thriver can implies that we are always upbeat, always positive, when the truth is we are often just the opposite. If we are not careful “thriver” can bring with it that “toxic positivity” which can undermine our very efforts to practice our resilience. That might not mean being out there grabbing life, it might mean mean resting, reflecting, convalescing. 

This is how one of our members summed it up:

Don't call me a warrior
don't  call me brave,
don't give me medals
don't give me a parade
I didn't fight 
I didn't win
I didn't choose
I just gave in

I gave in to the doctors
I gave in to the surgeons
I gave in to science that would save my life

But I didn't fight
I didn't win
I didn't choose
I just gave in

We would like you to know that we are not defined by our cancer.  We say: I am. I am still Me. We are, if you must give us labels, women:  partners, mothers, daughters, sisters, employees, volunteers, kind compassionate human beings. 

*I’ve included Oxford English dictionary definitions of these terms for those interested. Words come to mean something different if used often enough in a certain context: 
warrior : (especially in former times) a brave or experienced soldier or fighter.

brave: ready to face and endure danger or pain; showing courage.

fight: take part in a violent struggle involving the exchange of physical blows or the use of weapons.

battle: a lengthy and difficult conflict or struggle.

positive: constructive, optimistic, or confident.

inspirational: providing or showing creative or spiritual inspiration.

remission: a temporary diminution of the severity of disease or pain

survivor: A person who survives, especially a person remaining alive after an event in which others have died.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please send us a private message via Facebook. 

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