Weekly Discussion Summary ~ Survivorship

What does it mean to survive breast cancer and be a 'breast cancer survivor'? Does the term 'survivorship' offer an accurate description for our many and varied experiences?

These were some of the questions we asked ourselves in our weekly discussion ~ 'What does it mean to be a breast cancer survivor?'

We started by considering definitions offered by the Cambridge Dictionary: 
1. A person who continues to live, despite nearly dying. 
2. A person who is able to continue living their life successfully despite experiencing difficulties.

Theoretically, the notion of survivor makes complete sense, for example as a way of thinking about those who 'survive' a war, an accident, or abuse. However, our discussion, which involved women with primary and secondary breast cancer as well as women who have had a recurrence, considered the limitations of being seen as a 'breast cancer survivor'.

Firstly, cancer is not a one-off 'event' that we can put behind us. Our experiences are complex - very few of us are told we are cured; we need to continue to be vigilant for signs of recurrence and uncertainty remains ongoing. As a result, rather than putting cancer behind us, we take it forward with us, and in this respect our experience is different from other situations.

What about those of us whose cancer comes back? Are we then no longer 'survivors?' Unsurprisingly, those of us with secondary breast cancer could not relate to the term and it was clear that it is particularly insensitive as they are not going to 'survive' breast cancer. Yet, these are women who adapt and continue to live with grit and resilience.

Some of us saw the term as an unwanted label, unhelpful and something of a cliché. Most of us rejected the assumptions that come with the term 'survivor' such as - 'you must be strong!'; 'you must be positive!';'you must jump out of a plane to raise money' etc etc as well as unrealistically high expectations.

There was not a universal rejection of the term 'survivor' though. Some of us felt it was a good fit for describing our psychological journey. Although most of us rejected words like 'battle' and 'fight', we also felt that there were limitations with seeing our experience soley through the lens of treatment and we needed something to describe the experience.

To summarise, we found the meaning of survivor in ‘Planet Cancer' to be ambiguous. We would all like to think that we continue to survive breast cancer to the best our capabilities. The way we do so is unique and what we really need is to be allowed to speak with our own authentic voices about the psychological impact of cancer on us.

Naz told us that the word 'survivor' and the concept of 'survivorship' is everywhere in the breast cancer literature. While some of us see ourselves as survivors, the insensitivity to the implications of using it widely is both upsetting and inaccurate. We need new words and ways of describing and thinking about the complex experience of cancer.

If you are a woman with a diagnosis of breast cancer and you would like to join our closed private group, please leave your name in the comments below.

#ResilienceDiscussion

A big thank you to wonderful Bal for allowing us to use this beautiful picture.