Introduction

Each woman responds to the crisis that breast cancer brings to her out of a whole pattern, which is the design of who she is and how her life has been lived.… our feelings need voice in order to be recognized, respected, and of use. I do not wish my anger and pain and fear about cancer to fossilize into yet another silence… may these words underline the possibilities of self-healing and the rich-ness of living for all women… and to integrate this crisis into useful strengths for change. (Lorde, 1980, pp.9–10)

During a personal health crisis, we often turn to medicine. Its evidence base dictates what the diagnosis is, what treatment to give, what protocols to follow. This is effective especially in life-threatening circumstances. However, listening only to the voice of reason and medicine is problematic, as there is another voice that needs to be heard in such trying times. The voice of the person, on the surgery table, in the waiting room, under the MRI, is also valuable. For it is their body/mind/spirit that hosts the ailment, must weather the treatments, take the medicines and pursue healing. Their voice is ever present in their suffering and emotional experience of their journey.

Historically, science, and perhaps society, has been dismissive of patients’ emotional experience. “Oh, don’t be so emotional” is a common catch phrase. In science, physical disorders are often the primary focus of care and patients’ emotional suffering and needs are rarely mentioned in medical education, clinical care, or research (Phillips et al., 2023; McColl-Kennedy et al., 2017). Yet evidence indicates healing requires understanding the patient as a whole person, not just addressing a discrete physical problem, and must occur at the emotional, psychological, social, and spiritual levels (Firth et al., 2015). Emerging research indicates emotional support is a crucial element in providing safe, high-quality patient and family-centred care (Bradshaw et al., 2022; McColl-Kennedy et al., 2017). Emotional support consists of three key components: a cognitive understanding of the patient’s needs; an affective understanding of the patient’s values; and an altruistic effort to alleviate the patient’s pain (Bradshaw et al., 2022). Another essential aspect of emotional support is narrative knowing, which involves a shared understanding between the healthcare provider and the patient regarding the experience of chronic illness, and the emotions related to helplessness and suffering. When patients’ emotional health needs are met, they are better able to manage the stress that accompanies a health crisis, and their well-being and quality of life (QoL) improves. Yet most reviews on the QoL of breast cancer patients focus on the impact of treatment or integrating complementary and alternative medicine, with yoga most recommended (Mokhtari-Hessari & Montazeri, 2020).

While Australia has one of the best breast cancer survival rates in the world, it remains the most common cancer facing Australian women (Breast Cancer Network Australia, 2023). Cancer continues to be an alarming and serious disease and the diagnosis traumatic (Kievisiene et al., 2020). Estimates are 3,178 women will die each year with a 92% survival rate after five years (Cancer Australia, 2023). A breast cancer diagnosis is a life-changing experience, and the costs are high – physically, financially and psychologically – with a potentially traumatic nature (Martino et al., 2021) as patients grapple with what could be a death sentence. A study in the UK reported that “women can be at risk from a wide range of long-term physical and psychosocial effects following their diagnosis and treatment” (Capelan et al., 2017, p.113). Research indicates older women with post-surgery issues like impaired physical function, mental health and emotional support tend to have worse self-perceived health and psychosocial adjustment a year later (Ganz et al., 2003). They recommend enhancing QoL for older breast cancer patients by creating and testing interventions and focusing on their physical and emotional needs (Ganz et al., 2003). Studies continue to highlight the burden on patients’ psychological well-being and quality of life, yet there remains a dearth of research into how best to support patients’ mental and emotional needs (Kievisiene et al., 2020; DeMiglio et al., 2020). As more and more women face this diagnosis, meeting their emotional-care needs is critical to their recovery, healing and ongoing QoL.

Quality of life is a subjective evaluation and a “broad ranging concept incorporating in a complex way the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationships to salient features of the environment” (World Health Organization, 1998, p11). There is a growing call for integrative medicine and complementary therapies to better address psychological needs and support patients’ QoL (Mokhtari-Hessari & Montazeri, 2020). A recent study indicated the effectiveness of many psychotherapeutic and supportive approaches in elderly breast cancer patients, the most effective included psychotherapy, meditation, and Eye Movement Desensitization and Reprocessing (EMDR) (Dinapoli et al., 2021). There is increasing awareness and use of contemporary and alternative medicine (CAM), including art therapy (Kievisiene et al., 2020). Regev and Cohen-Yatziv’s (2018) systematic literature review indicates there is a vast amount of research in the field of art therapy with cancer patients. They assert, “art therapy emerges strongly as a way to enhance their quality of life and their ability to cope with a variety of psychological symptoms” (p.15). The systematic literature review suggests it is possible to significantly improve the emotional state and perceived symptoms of cancer clients through art therapy. This is supported by further studies on the role of emotional processing in art therapy for breast cancer patients (Czamanski-Cohen et al., 2019). It is worth noting however a systemic review, evaluating six randomised control trials (RCTs), recognised that while art therapy was seen in some studies to enhance the psychological state among breast cancer patients, there was inconclusive evidence to it efficacy (Azmawati et al., 2018).

Art therapy has been found to be a useful tool for cancer patients in helping them cope with the stressful experience, reduce stress and anxiety, deal with emotions, gain a sense of control, and promote spiritual well-being (Nainis, 2008). A more recent systematic review, including nine RCTs, supported art therapy as a complementary oncology therapy that could improve QoL and emotional symptoms (Kievisiene et al., 2020). In particular “emotion processing is a potential mechanism through which reduction of depression and somatic symptoms in cancer patients can occur” (Czamanski-Cohen et al., 2019, p.593). In a systematic review of mechanisms of change in creative arts therapies, emotional elicitation and processing is considered one of the 19 mechanisms that effect change in clients (deWitte et al., 2021). A recent meta-analysis (Xu et al., 2020) indicated art therapy with patients with breast cancer has positive effects on improvement of depression, but not anxiety. As the range of outcomes in different studies is variable, more heterogeneous RCT studies are suggested.

This study, although not therapy between a client and therapist, does draw heavily on principles, practices and insights about creativity, creative expression, art-making process, art media use, art symbols, process of art-making, and visual journaling used in art therapy. The use of a visual journal is common in art therapy studies, where students capture visual images, reflections and learnings on their identity and therapeutic practices, and cultivate self-awareness. Visual journaling combines art-making and reflective journaling, where imagery reveals inner feelings and words to make sense of the images (Deaver & McAuliffe, 2009). The use of a visual journal is similar to that in Malchiodi’s “creativity and wellness group” for women with breast cancer (2012, p.402). This group involved participants who took an active role in supporting their well-being through a visual journal for relaxation and coping. The aim was to encourage communication of difficult emotions, reduce stress and facilitate a search for meaning.

Research indicates beneficial effects of emotional expression through writing, but there are few studies on the use and benefits of journaling, much less visual journaling for women with breast cancer (breastcancer.org, 2023; Smith et al., 2005). A study on 43 women with early breast cancer diagnosis using journaling, indicated “expressive writing is not necessarily universally helpful to mood states, but rather there may be specific characteristics of writing that are more useful in alleviating symptoms of distress” (Smith et al., 2005, p.1008). There are also examples of art therapists, such as Harriet Wadeson and Caryl Sibbett, who used journals in response to their diagnoses to transcend their suffering (Fish, 2013). Wadeson commenced a journal as a reaction to her health emergency, and later incorporated images as her treatment journey advanced. Sibbett documented her reflections on how art helped her express and process difficult emotions, including fear, terror and the experience of liminality (Sibbett, 2005). Creating a visual breast cancer journal helps to “break through silences too long engrained in our society”, and has the “potential to facilitate women’s sense of self identity” and “move us closer to more effective treatments, [and] a higher quality of care” (Chansky, 2007, p.198).

Generally speaking, a number of health benefits have been correlated with visual journaling or art-making, including enhancing immunity and decreasing cortisol levels (Warson & Lorance, 2013). A study by Mercer et al. (2010) indicated that the use of visual journaling demonstrated a decrease in anxiety and negative affect. An RCT study followed 60 women with early-stage breast cancer following their treatment (Stanton et al., 2002). Of the three groups assigned different writing tasks, three months later the two groups who wrote about their emotions and expressed the full range of thoughts and feelings, reported significantly fewer negative physical symptoms and needed fewer medical appointments than the group whose writing was limited to the facts. The study showed encouraging results, but the authors suggest further studies are required to determine which types of patients would benefit most from using writing for emotional expression.

This research entails an arts-based autoethnographic enquiry into the experience of early breast cancer and recovery in the first year. Drawing on autoethnography serves this research topic; as a phenomenological approach, it promotes exploring lived personal experiences as a source of knowledge and meaning-making (Neubauer et al., 2019). This research investigates the questions: How might the use of a daily visual journal help to explore the emotional needs of an early breast cancer patient? How does daily art practice support psychological well-being during an early breast cancer experience?

Methodology

This research uses an art-based autoethnographic approach as a form of qualitative research. This methodology employs narrative traditions using dialogue, self-study/autobiographical and memory work to construct stories of pivotal experiences in the researcher’s life (Cooper & Lilyea, 2021). Autoethnography is a valid and suitable research method, which gives voice to the conscious and emotional aspects of personal experiences, and invites connection with the reader and context (Pretorius & Cutri, 2019; Méndez-López, 2013; Wall, 2008; Adams et al., 2016). Autoethnography allows people to engage “in the process of figuring out what to do, how to live, and the meaning of their struggles through personal experience” (Bochner & Ellis, 2006, p.111). 

In this paper, the term ‘art-based autoethnography’ is used to signify the use of art as a way to access information and value subjectivity, imagination and introspection (McNiff, 1998, cited in Gilroy, 2006). Through art, it is possible to find deeper insights, discover knowledge that is unique and immeasurable, and enable empathy and compassion with ‘the other’ (Knowles & Cole, 2008; McNiff, 1998). Cooper and Lilyea claim that “the focus of arts-based autoethnography aligns with the goals of autoethnography while using interpretive and representational collection and presentation techniques” (2021, p.4). In this study, the representations are from the daily visual journal. This choice of methodology was intentional, as it could favour my voice as I progressed through the breast cancer experience, so that it remained unfiltered and raw, and all the emotions experienced could be heard, seen and felt. The choice also pertains to the fact that “arts-based research is the polar opposite to science” (Chamberlain et al., 2018, p131). This arts-based research avoids measurement, causality and certainty, and leaves interpretations and findings open to the reader. The point is “not to answer questions or offer final meanings but rather to provoke questioning, deepen engagement, open debate, and inspire social action” (Chamberlain et al., 2018, p.133). By hearing from the emotions and witnessing them in the art, others might deepen their appreciation of the psychological experiences that accompany a breast cancer diagnosis. Furthermore, healthcare professionals might care more compassionately for the whole human being (body/mind/spirit) they are treating, and the health system might improve the design of treatment protocols that support psychological and physical health issues simultaneously.

In this approach, the researcher has multiple roles as investigator, subject and storyteller (Pretorius & Cutri, 2019). As subject, I am a 60-year-old American-born Caucasian female who immigrated to Australia 35 years ago. Professionally, I am an art therapist, university tutor, research supervisor and HR practitioner. As a researcher, my role is to explore my lived experience with early breast cancer from diagnosis through recovery at the one-year mark. A visual journal was used daily for five to ten minutes and without directives. The brief time limit was meant to reduce any pressure, and the timing and lack of directives allowed for the most spontaneous of emotional expressions. Non-directive entries were chosen, as research indicates a self-directed approach can be as beneficial as directives (Mercer et al., 2010).

The emotional experience

Experiencing early breast cancer can evoke a wide range of intense emotions through this challenging journey. Each person’s emotional experience may be unique. The feelings and reactions I observed included the full gamut of shock, withdrawal, gripping fear, terror, anger, sadness, blame, guilt, helplessness, hopelessness, depression, anxiety, optimism, joy, hope, curiosity, contentment and compassion. The following is an account of some of the more prominent ones.