By Your Side: Being A Caregiver

Introduction By Grazia de Michele and Cinzia Greco

Breast cancer is like an earthquake: it starts in an epicenter, in which the damages are high. Then, inevitably and rapidly, seismic waves hit nearby areas. Cancer not only upsets the lives of those receiving the diagnosis, but also that of parents, daughters and sons, partners, relatives and friends, who suddenly become caregivers. This special issue of the Breast Cancer Consortium Quarterly is about them.

In 2014, the Breast Cancer Consortium Quarterly published its special issue – Demystifying Breast Cancer – focusing on the experiences of people directly affected by the disease, whose voices are silenced by mainstream representations. This year we make a step forward to include another important aspect of the reality of breast cancer, one deliberately obfuscated by pink ribbon ideology.

The she-ro – the stereotyped figure of the female heroine bravely beating the odds – does not experience pain or corporeal damage, and certainly does not see death in her future. The she-ro is a solitary warrior. She is strong, determined and self-sufficient. The care that a breast cancer patient needs is expunged by this narrative, as are the people providing it. Instead, family members and friends are urged to run for the cure, wear a pink ribbon, and donate their money to the cause. The practical and emotional support needed by patients who go through sometimes multiple surgeries, debilitating and prolonged therapies, and in certain cases face metastases is too unglamorous to be given any space on the cultural landscape.

The aim of this special issue is share the experiences of those who act as caregivers and shed light on the difficulties they deal with on a daily basis.

The stories that make up this collection come from the United Kingdom, the United States, and Italy. The authors write in their capacity as partners, mothers, sons and friends. Although two precious contributions come from men, the lion’s share of this special issue belongs to women. This is a powerful reminder that care work is still, largely, a woman’s affair. Even when they are not affected directly by breast cancer, it is women who pay the highest price to this disease.

If illness is a totalizing experience, that of caregiving is not far from it. Not only did caregivers look after their loved one, with energies and time spent providing assistance, they also attended to the duties of everyday life. In this sense, paraphrasing Susan Sontag, they are part of the kingdom of the sick and of the kingdom of the well at the same time. Striking a balance between these two worlds is incredibly demanding. Indeed, one of the common themes in the stories we present is the surprise and lack of preparation the authors experienced when becoming caregivers. They had little idea about what they were in for.

Another recurrent theme is how breast cancer can transform one’s personality and sense of self in both constructive and destructive ways. This change can alter one’s coping abilities and impact, even if only temporarily, one’s long-term relationships. Though it is certainly true that a life-threatening disease can pull people closer, it can also push them apart. In pink ribbon culture, breast cancer is most commonly depicted as an eye-opening rite of passage that allows those affected to understand what is really important to them, and how beautiful life is. After treatment, they get on with life renewed. Beyond this happily-ever-after narrative is another reality; a disease that can lead to suffering and isolation, and irremediably destroy bonds.

Knowing how one will react to the experience of walking with someone who has been diagnosed with breast cancer and caring for them amid difficulty, pain, trauma, recurrence, or metastasis is not something that can be anticipated. Yet, the sugarcoated image of the upbeat survivor contributes to the astonishment caregivers feel when they suddenly find themselves in the wake of that earthquake that is breast cancer.

The Stories in this Collection…

In Rolling and Strolling, Alice Ayers (a pseudonym) narrates how for many years she looked after her partner, who experienced a life-threatening disease – breast cancer, with which she was diagnosed twice – and later a life-ending disease, amyotrophic lateral sclerosis (ALS). In supporting her partner through illness and eventually death she took a practical approach to caregiving, leaving her emotions for another time. She received support from friends and acquaintances who through big and small gestures showed their affection for her and her partner. As a result, a new Alice, cared for by those who love her, has surfaced. Now that her partner is gone, she considers whether she is willing to embrace a new identity.

Marco Peano, an Italian writer, recalls the long journey of taking care of his mother. Peano’s mother was diagnosed with breast cancer when he was only 17 years old. The disease was a constant presence in the life of the whole family for a decade, turning Peano and his father into two loving caregivers and forcing them to learn words they never would have wanted to know. It was during the final stages of his mother’s illness that Peano started to write about her. Seven years later, he turned this beautiful and heart wrenching story into a novel. Dictionaries, Cats, Encyclopedias shares some of Peano’s experience taking care of the woman he loved most in the world.

Linda Holden, in The Wife of a Man with Metastatic Breast Cancer, describes the effects of her husband’s diagnosis with metastatic breast cancer. Twelve years as a caregiver has allowed Holden to understand the importance of being supported by a community of people in the same situation who understand what you’re going through and the power of self-education.

The majority of writers in this collection emphasize that while being a caregiver for someone with breast cancer takes a huge toll on them, it does not undermine their feelings of love towards the person. In some cases, though, there is no way to get through the intense hardship of diagnosis, treatment, and long-term care.

In Hard on the Body, Hard on the Soul Kelly D. (a pseudonym) shares how breast cancer changed the course of a committed relationship and the lives of a couple to the point that they decided to separate from one another altogether.

In Caring for our Daughter, Yvonne Jones-Gill shows the disruption cancer can cause for a single mother with young children. When their daughter was diagnosed with breast cancer at age 35, Yvonne and her husband, both retired, moved into a mobile caravan for months at a time to look after her and her children. The author reflects upon the difficulty of her daughter’s treatment, the challenge of trying to “do it all”, and the reality of just how many people were needed to care for a single patient. She wonders what happens to patients who cannot rely on such a large network of support.

Anthony M. titles his piece I Wasn’t a Caregiver. Focusing on the partnership between him and his wife Rachel from the time of her breast cancer diagnosis through her death, his narrative is a testimony to love despite illness and a critique of the optimistic vision of breast cancer that was far from their reality. The author never denies the hard aspects of the disease that took his wife’s life and a huge part of his own spirit.

The final piece in our collection, Diary of a Caregiver, was put together just a few days before the publication of this special issue. The author, Diane Fine, has been helping her best friend Katherine for the last sixteen months in the wake of Katherine’s breast cancer recurrence, a diagnosis of triple negative metastatic breast cancer (MBC). Diane stepped in to take care of her friend when Katherine’s family could not. Since Katherine entered hospice in late September, Diane has been sitting at her bedside as well as taking care of business, agitating for change, offering support, feeling exhaustion, grieving impending loss. Diane, a caregiver for her friend — a dancer and activist she has admired since their youth— has been keeping a diary since fateful September and has decided to share some of it with us.

We owe a debt to those who were willing to tell us a part of their caregiving story for this special issue. Their heartfelt contributions offer all of us a deeper understanding of what it means to take care of those we love when they are facing what may be one of the most difficult times in their lives: the love, the labor, the uplifts, the grief, the truth.

“By Your Side” is formatted as a PDF for you to print easily and share. Click here to download the full special issue.

Contact the special issue editors at

Be Sociable, Share!

Articles & Posts