'I'm grateful for my breast cancer journey'
By Lilian Musyawa Kikuvi
'I'm grateful for my breast cancer journey'
By Lilian Musyawa Kikuvi
Photography by Rose Werle
You might wonder if this 45-year-old Kenyan woman has lost her mind for being grateful about a breast cancer diagnosis, a disease that will affect 1 in 7 women in their lifetime.
This alarming statistic might affect us, our loved ones or someone you know.
I believe breast cancer is undoubtedly a dreadful disease, causing so much pain and loss.
My diagnosis in April 2023 brought these realities into sharp focus. The pain and loss were overwhelming, yet from this suffering emerged a powerful purpose, prompting a significant life shift and directing me to serve others facing similar battles.
This journey has anchored me in gratitude for my privileged breast cancer experience and outcome, which I can't ignore when I consider the experiences of others, especially those in marginalised and minority communities that I'm also a part of.
Some of my privileges include early detection, a diagnosis of a less aggressive cancer subtype, quick medical intervention, an incredible support network and medical team, financial resources, the Australian public health system and subsidised health costs, and the miracle of my healed and healing body – all of which have contributed to being cancer-free today!
Reframing my pain
My late mother, Grace Mambo Kikuvi, always turned her hardships into ways to help others. I recently came across her journal entry from 18 December 2005, reflecting on her spiritual journey that resonates deeply with me in this season: "…this is an affirmation that all things work together for good." These words frame my breast cancer experience and inspire me to turn collective pain caused by breast cancer into purpose.
From a leaky boob to a breast cancer diagnosis
In 2018, I noticed a bloody discharge from my breast. Doctors found non-cancerous growths called ‘intraductal papillomas’ in my breast ducts. [Breast ducts are thin tubes in the breast that lead from the breast glandular tissue to the nipple.] I had the growths removed and started getting yearly checkups. Even with these checkups, I kept my busy and stressful lifestyle unchanged until April 2023, when tests showed I had cancer in my right breast duct. This shocking news forced me to take immediate action, leading to a major life-saving surgery 4 weeks later.
During an 8- to 10-hour surgery, my breast specialist removed all my breast tissue and some lymph nodes to check if the cancer had spread. A plastic surgeon then reconstructed my right breast using tissue from my lower abdomen.
The whole experience was traumatic, and the post-surgical pain was intense, but the good news was that the cancer was gone, and it hadn't spread to my lymph nodes. This meant I didn't need further treatments like radiation or chemotherapy. Early detection and quick action saved my life, highlighting the importance of regular checks.
I'm still going through the reconstruction process for my right breast, and celebrate its different stages of healing.
The scars and annual breast examinations remind me that complacency can be dangerous.
Returning to work has been tricky and complex. I have had to find non-negotiable ways to work that wouldn't compromise my health. This has included creating new financial safety nets to support my healing. Embracing new ways of living has been essential for my recovery.
This journey feels like uncharted territory with each step, shaking off any remnants of complacency.
I strongly encourage everyone to avoid the trap of complacency – have regular breast examinations!
Reflecting on my journey, I realise how lucky I am to have had good health outcomes and experience during my breast cancer treatment – something that many others, especially Women of Colour (WOC), do not have.
Research has shown the painful differences that WOC experience in their breast cancer journeys. Imagine healthcare systems that are supposed to provide quality, safe and affordable services for everyone, but very few people from disadvantaged groups benefit from these systems.
WOC often have lower rates of cancer screening, have more aggressive cancer diagnoses, and face obstacles like poverty and discrimination. They are also underrepresented in clinical research. Cultural insensitivity among healthcare providers makes things worse, leading to mistrust and poorer health outcomes.
Imagine your health journey being affected just because of who you are.
Imagine your health outcomes being significantly worse because of your background.
Imagine your access to good health care being limited because of your race or ethnicity.
This isn’t fair for anyone.
I believe these painful differences in breast cancer call for collective action. This is where ‘Harambee’, a Kenyan cultural practice, comes in. Harambee means ‘joining efforts to achieve a common goal’ in our national language, Swahili. It's about everyone coming together to help each other, encouraging women from all communities to have regular screenings, and collectively working towards a future where everyone has equal access to life-saving health care.
More about the author
Lilian Musyawa Kikuvi is a Kenyan-born Australian with more than 2 decades of cross-cultural experience. She has faced different types of discrimination, fuelling her passion to drive positive workplace culture. Her recent battle with breast cancer exposed inequalities faced by women of colour, motivating her to broaden her impact. This led to the creation of the Mambo Movement. Its vision: to end breast cancer disparities, ensuring no one is left behind.
Lilian uses the term ‘Women of Colour’ to refer to non-white women from historically disadvantaged racial and ethnic groups. This includes Black, Indigenous, Asian, Latinx, Pacific Islander and Middle Eastern women. These women often face both racism and sexism, as well as unique cultural challenges. Women include cisgender and transgender individuals, as well as non-binary and gender non-conforming people who experience or have experienced oppression.
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Images by Rose Werle. Illustrations by Tam Bower.
Published September 2024
This article is designed to be informative and educational. It is not intended to provide specific medical advice or replace advice from your medical practitioner.
Jean Hailes for Women’s Health gratefully acknowledges the support of the Australian Government.
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