My journey with cancer began in 2018, not as a patient, but as a caregiver. My younger brother was diagnosed with a rare giant cell tumour, and despite every effort to save him, we lost him at just 27 years old. His death left my family devastated and changed the course of my life.

At the time, I was practising law in India. After years of grief, I moved to Belgium in 2020 to join my husband and begin a new chapter. Soon afterwards, I became pregnant, bringing renewed hope for our future.

Then, in March 2021, everything changed.

A sudden infection caused by cholangitis led to the stillbirth of our baby boy, Victor. Losing my son was an unimaginable heartbreak. While I was trying to cope with that loss, doctors initially believed gallstones were responsible for my illness and scheduled me for gallbladder surgery. My husband and I felt something was not right, so we sought a second opinion at a university hospital.

That decision saved my life.

Further investigations revealed cholangiocarcinoma, a rare cancer of the bile ducts. Hearing the word “cancer” again, after losing my brother, was overwhelming. I had only recently moved countries, left my career, and was navigating grief, isolation, and the uncertainty of the COVID pandemic. Suddenly, I found myself facing another life-changing diagnosis before I had even begun to recover from the loss of my son.

I underwent a complex Whipple procedure because of previous biliary surgery I had as a newborn. Recovery was long and challenging. Afterwards, I received chemotherapy together with immunotherapy. There was no clear consensus about the best treatment approach, leaving my family and me to make difficult decisions at a time when every choice felt critical.

Treatment brought severe side effects, repeated infections, multiple hospital admissions, and interruptions to therapy. Eventually, chemotherapy had to be stopped while immunotherapy continued. For months, scans showed suspicious lesions, and living from one scan to the next became one of the most emotionally difficult parts of my experience.

With no family history of cancer, losing my brother and then facing my own diagnosis left us searching for answers. The physical challenges were significant, but the emotional burden was even greater. Initially, I fought to spare my parents the pain of losing another child. Over time, I realised I also wanted to live for myself.

Throughout my treatment, I was fortunate to receive exceptional medical care from specialists who went above and beyond. Their expertise saved my life. At the same time, I learned that recovery involves much more than treating the disease.

After my Whipple surgery, I struggled to find guidance on managing the long-term effects of treatment. Digestive changes, malabsorption, chronic pain, fatigue, and nutritional challenges became part of everyday life. Much of what helped me came through personal research, specialist support, and connecting with other patients who had lived through similar experiences.

That journey taught me the difference between being cured and truly healing.

I chose to become an active participant in my own recovery by learning, making lifestyle changes, and embracing an integrative approach to care. Supporting my mental, emotional, physical, social, and spiritual wellbeing became just as important as medical treatment. This approach helped me navigate grief, uncertainty, pain, and the practical realities of life after cancer.

Living with a rare cancer also showed me how important emotional support and shared experience can be. There is often no standard treatment pathway, opinions differ, and uncertainty can become a constant companion. Connecting with other Whipple patients reminded me that patients have invaluable knowledge to share, but younger people living with rare cancers often struggle to find others who truly understand their experience.

As my health gradually improved, I found myself sharing what had helped me with other patients. Those conversations became the foundation of a new purpose.

They led to the creation of RSSHeals.

At the age of 40, I chose to leave my legal career and rebuild my life through coaching, advocacy, education, mentorship, and holistic wellness. It required starting again, undertaking extensive training and professional certifications, and redefining my future, but it also gave my experience meaning.

Today, I am more than four and a half years post-diagnosis and remain in remission with no evidence of disease.

Cancer permanently changed my body and my life. I continue to live with long-term symptoms, regular monitoring, and uncertainty. But I have also learned that healing is not simply about surviving. It is about rebuilding a meaningful life while embracing who you have become.

Cholangiocarcinoma changed my life in ways I never imagined, but it did not define or end it. If sharing my story helps even one person feel less alone, gives someone hope, or encourages them to advocate for themselves, then every step of this journey has been worthwhile.

You can connect with me on Instagram and LinkedIn: @rohinisinghsisodia.

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Rohini Singh Sisodia is a certified Health and Wellness Coach, patient advocate, and cholangiocarcinoma survivor. Her work is shaped by her lived experience of cancer and focuses on rare cancers in younger people, survivorship, resilience, and whole-person care. Through advocacy, coaching, education, and community programmes, she supports people living with and beyond cancer while promoting a more integrated approach to care alongside medical treatment.

In 2026, Rohini joined the Patient Advisory Committee of Digestive Cancers Europe (DiCE), where she brings the patient perspective to help strengthen DiCE’s work and ensure that the voices of people affected by digestive cancers remain central to its initiatives.