Análisis químico del LPS

Women used different criteria when looking for ‘someone like me’. For many, this related to age and being at similar life stages. At diagnosis, younger women struggled to identify with the other women that they met in clinic: ‘everyone looked really old’ (Michelle J). Jayne felt isolated within clinic waiting rooms and when attending a local support group. She identified herself as younger than most women attending and was therefore ‘not one of them’:

‘honestly just sitting in those waiting rooms with all these people around me that were worried out of their minds and a lot of them would look at me because I was in [names of local and specialist hospitals], erm at lot of them would look at me and I sometimes felt they were looking at me and ‘she’s here with her mum’, ‘she’s just waiting for her mum’. And I would get these almost derisory looks, or I felt that. That was my reaction to the environment. So, whether that was to do with my feeling that well ‘I’m not one of them’ because I’m not old. That feels really mean. Because I know they are not old either. But I just felt completely isolated from them. So, going online and being in this Facebook group - the fact that it says that it’s Younger Breast Cancer Network…’ (Photo-elicitation: Jayne).

153 Jayne felt isolated from ‘all these people’. Jayne imagines that ‘they’ think she was in clinic to be ‘with her mum’. She distances herself from the other women she meets in the waiting room ‘I’m not one of them. I’m not old’. In contrast, being in a ‘Younger’ Facebook group which she perceives as relevant to her experiences removes that sense of isolation.

The disconnection Jayne felt relates to differences in age and life stage. Sarah J also found it difficult initially to navigate getting the ‘right’ type of support. She talked about using the closed Facebook group (YBCN) and online breast cancer forums specifically in relation to finding out more about a pain in her hip. Sarah found online breast cancer forums unhelpful, as those participating were women of all ages:

‘I’m going looking for information because of the pain in my hip. I go on the forums and everyone’s going ‘oh yeah, I had that. It was arthritis’. ‘Oh, maybe it’s arthritis’. And then I go, ‘actually, well no’, ‘cos these people are all 60. It’s not the same. Whereas, when I ask on the Younger Breast Cancer Forum they are not going to go ‘well, it’s probably arthritis, because it’s unlikely to be (laughs)’ (Photo-elicitation: Sarah J).

Sarah conveys the sense that she did not feel appropriately listened to or responded to (Brown & Gilligan, 1992) by members of a more general breast cancer forum. Sarah (aged 29) dismissed these comments ‘cos these people are all 60. It’s not the same’. Issues of relatability to others therefore influence women’s use of social media platforms. Sarah J and Sarah M were positive about finding a Facebook closed group of ‘younger women’ because it was ‘just specific to young people’ and not ‘general to everyone’ (Sarah J). These searching practices show age as an important facet of identity for women diagnosed with breast cancer. Women did not convey a sense that ‘age’ was an issue discussed within the clinical setting or that being a younger woman at time of diagnosis was ‘different’. Rather, the experiences of being in clinical settings with older people appears to lead women to seek ‘similar others’ in different environments. Some women were frustrated at not being able to join the Younger Breast Cancer Network because at 50, they were too ‘old’:

‘there’s a young women’s breast cancer group. I’m not allowed to join it because I’m too old “…” I don’t feel great right there (laughs)’ (Photo- elicitation: Sheena)

154 The significance of being a member of YBCN was brought to the fore through photographs captured of the YBCN profile page on Facebook by two women recently diagnosed (Figure 8-3: Images Michelle J 5; Michelle M 7).

© Michelle / 29.02.16/ University of Salford / Cathy Ure © Michelle Mullany / 03.03.16 / University of Salford / Cathy Ure

The almost identical images of smartphone screens mirror the accounts of ‘finding someone like me’ and the similarities women are looking for in others diagnosed with breast cancer. Both phone screens (Figure 8-3) report YBCN as ‘a secret group’ having 1694 ‘similar other’ members. This informs younger women that they are not alone and are part of a network of women like them. The images used for the homepage by YBCN suggest women are joining a vibrant social space focused on chat and relaxation (tea and cake). Michelle J’s photograph (Image: Michelle J 5) gives insight into her also being part of a closed group (November/December Chemo Buddies), within the wider YBCN group, leading still further to greater homophily within special interest Facebook groups.

For some women, being able to see similar others in ‘the same boat’ enabled adjustment. Kirsty described watching a YouTube video:

‘There is a girl called Lara Honner who has done this video called ‘Get Your Tits Out’ and I suppose that makes you like, when you come across it you think ‘what’s that’ and I watched that video about three days after I was diagnosed and it was like a brace yourself and watch this type of Figure 8-3 The Younger Breast Cancer Network secret group on Facebook

155 experience so I suppose I was looking for somebody like me. Somebody my

age, somebody who had, was going through or had just recently been through what I was about to start. So that’s what I was looking for really. Somebody similar to myself.’ (Photo-production: Kirsty).

Kirsty casts this YouTube video as providing both a visual mirror and a view of a possible future. Kirsty’s view ‘it does make you think that you can do it’ suggests YouTube content offers women vicarious experiences63, which can work to reduce uncertainty and develop greater understanding, enabling women to adjust and be prepared for what lies ahead.

For some women, finding ‘somebody like me’ was not simply related to age but also related to type of breast cancer64. Michelle J talked about her early use of YBCN and her interest in other women diagnosed with triple negative breast: ‘I’m on the triple neg group65_{’, ‘I was} just obsessed with everyone that had triple neg breast cancer’. She gave voice to the challenges of negotiating similarity and difference when a ‘triple negative’ member of the community found shadows on her lungs:

‘and people were saying ‘I’ve got another scan coming up. They’ve seen shadows on my lungs and they were maybe at the same stage as me. And I was thinking ‘oh gosh, is this going to happen to me? (Photo-production: Michelle J).

Michelle demonstrates significance given to type of breast cancer for her. Indeed, the psychosocial needs of women living with Triple Negative Breast Cancer may be unique due to its aggressive nature, with high recurrence and mortality rates (Turkman, Kennedy, Harris & Knobf, 2016) potentially indicating a need for increased support. Michelle describes her anxiety when confronted with other ‘similar’ women’s experiences soon after diagnosis. Michelle M stated that women’s stories were ‘bordering on the unhelpful actually’, while Michelle J commented:

63 Bandura (1993) contends that vicarious experiences – observations of other people, particularly those seen as role models – increases self-efficacy by raising individual beliefs that they too can master a similar activity or situation.

64 There are different types of breast cancer including (but not restricted to) invasive; non-inflammatory; triple negative; ductal carcinoma in situ (DCIS); lobular carcinoma in situ (LCIS); invasive lobular; and Paget’s disease. (Types of breast cancer and related conditions, Cancer Research UK, 2017)

156 ‘sometimes I find it quite overwhelming when I’ve read it all because I can

relate to it obviously first hand [ ]66 it just makes me feel a bit low when I read it, even though I know everybody has got a different journey. It still scares me when someone says it has come back or they’ve got a secondary. My mind is not really attuned yet to kind of just, I don’t know, it just scares me actually’ (Photo-production: Michelle J).

Women can (and do) seek out personalised support. They also get benefit from connecting to women at the same stage of ‘the journey’: ‘You become aware of who is at the start of the journey as well’ (Michelle J). Kirsty talked through a photograph (Figure 8-4) she had taken in the chemotherapy unit of someone she knew via YBCN, on the same chemotherapy cycle; she commented:

‘social media has forged that relationship. I saw her sitting in a chair, and recognised her and went and spoke to her because I’d seen her on the internet’ (Photo-production: Kirsty).

© Kirsty /15.03.16/ University of Salford / Cathy Ure

Here, Kirsty warrants the use of Facebook to identify other women at the same stage of treatment and same hospital as her.

66 _{Square brackets indicate the removal of some text to reduce the size of the overall quote. This has been done}

to aid the reader. Care has been taken to ensure no material changes to the meaning of the topic under discussion occurred

157 ‘I knew what she looked like and also I’d seen there were a couple of

girls who said they would be treated at [hospital]. So, you have a better look at them and think oh I might see you. And then, so I went and spoke to her because I’d seen her on the Facebook group. So, she’s there every time I go, you see, because we are on the same cycle. So, I speak to her every time. But I wouldn’t have spoken to her normally because of the distance [between chemotherapy chairs]’ (Photo-production: Kirsty).

Kirsty shows how social media use makes the distance in the chemotherapy unit smaller. Through ‘knowing’ someone in a different context, a relationship is already established through membership of the Younger Breast Cancer Network leading to conversation that would not have happened ‘normally because of the distance’. Aspects of breast cancer treatment have become digitally mediated phenomena.

Exploring how to live with a changed body was also digitally mediated (and relates to Chapter 8; section 8.1.3. Managing the challenges of physical change). For Millie, after two diagnoses of primary breast cancer, in 2002 and 2013, and a bilateral mastectomy, it was important to connect with other women who were ‘flat’ and who saw living breast free as a positive life style choice;

‘a lot of us didn’t want reconstruction and some were thinking about going flat completely and one of them mentioned the Flat Friends group cos I, I wear a (pause) prosthesis; I didn’t have reconstruction I decided to join that group cos at one stage I thought erm do I go flat completely?’ (Photo-elicitation: Millie).

Here, Millie demonstrates that 12 years after initial diagnosis (now aged 67), she has joined a new Facebook group – Flat Friends (established 2014) – to negotiate her decision as to whether to go ‘flat’. Observing other women’s experiences supports growing self-efficacy (Chapter 9: (Re)gaining a sense of control) in how to be ‘flat’ and offers an alternative paradigm for body confidence post mastectomy. Millie shows the longer term biographic disruption of breast cancer diagnoses; the ongoing navigation of LwBBC; and the benefit of joining new groups to support that navigation as women change and age.

While age, cancer stage, being at the same stage of ‘the journey’ and post-surgery body adjustment, were all reasons given for seeking out similar women on Facebook, life perspective was identified as another important search criterion. Mandy voiced a need to do

158 ‘what the other positive people are doing’ and to find ‘other likeminded people’. Mandy makes a clear distinction between what she found helpful and what she found frustrating:

‘I wanted to find other positive social media sites that were promoting maybe exercise, because I wanted to get into that, and I wanted to find other like-minded women that weren’t just kind of having cancer and just kind of, you know, withdrawing into themselves, blah, blah, blah, and then kind of not changing their life, I was like “no, my life’s, got to change, it’s going to change” and so I was looking for those kind of things really, so I found a few of those, and, so you’d get posts every day, you’d see those and um, and um, I also looked for other things to do, like singing groups, ‘cause I’m in a singing group at the moment’ (Photo- elicitation: Mandy).

Mandy uses social media sites to help make changes to her life. This suggests her agentic use of social media has transformative potential supporting positive psychosocial benefits. Mandy is dismissive of people ‘just kind of having cancer’ and states her desire to ‘find other positive social media sites’ after initially using a ’positive’ American triple negative breast cancer Facebook group. Mandy voices a positive, optimistic approach to life ‘my life’s got to change, it’s going to change’ with a more holistic approach to supporting her well-being – exercise and mindfulness - gained through singing. Facebook enables Mandy access to similar women who model positive life styles and provide focus on positive change through posting every day.