From Mum’s myeloma diagnosis to our shared mission of advocacy

It started like any ordinary ache — something my mum, Esther, was all too familiar with. She often woke up with a crick in her neck and would massage it away over a few days. However, what began as a minor discomfort in January 2021 soon unraveled into a life-altering diagnosis.

This time, the stiffness didn’t pass; instead, it worsened. Within days, the pain began to affect her mobility. Everyday tasks — lifting the kettle, preparing a simple meal — became unmanageable, and her thirst became unquenchable. She even bought a neck brace to wear at home, hoping it would ease the pain of the weight of her head.

Something wasn’t right.

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Seeking relief, we visited a chiropractor who had addressed previous issues with my mum’s back and neck. However, following a routine adjustment, an alarming series of symptoms began. My mum’s body slowly began to go numb, starting with her toes and progressing upward, hour by hour, until it reached her face and head. Realizing the urgency, I rushed her to an emergency neurosurgeon.

The diagnosis was devastating. The chiropractor’s adjustment had fractured her neck at the site of a tumor. We didn’t blame him; there was no way he could have known. Mum was diagnosed with smoldering multiple myeloma, a rare form of blood cancer. Her scans brutally revealed millions of microscopic lesions perforating her bones, particularly throughout her spine and skull. Her skeletal system was, in essence, crumbling from within. Her body had been quietly under attack.

We sat with the diagnosis in complete shock, lost for words. My mum was the most active woman I knew; she went to the gym every weekday and was conscious of eating healthily. I couldn’t believe someone so strong could unknowingly be living with this rare cancer.

I took photos of my mum on the couch to remember. I recall thinking how sick she looked — her eyes sunken, her skin pale. We had no idea what the future held. My mum and I reminded each other how deeply we loved one another, because we didn’t know what was coming next — we just knew it would test us.

Entering the world of rare cancer

At the time, my immediate family was living in Florida. But because my mum was a U.K. citizen, I realized she would need to move back there for healthcare coverage.

So, given the gravity of the situation, I drove her to Miami and secured her the next available flight back to the U.K., where she could receive specialized care. She struggled to stand upright in the airport; that’s how much pain her body was in. She leaned her whole weight against a pillar while I organized her flight at the desk. Then we were given a wheelchair.

For the first time in her life, she flew first class — not for luxury, but necessity. The airline staff showed immense compassion, ensuring she remained horizontal throughout the flight, as the pain meant she couldn’t cope with any other positioning. Her family took her straight to the hospital on the other end.

Everything changed in those moments. It was a hard and fast entry into the world of cancer, rare disease, and navigating medical systems — all while managing life with my four children, now without the help of my mum or dad.

This experience has reshaped everything I knew about strength, urgency, and the hidden battles our bodies can wage. Life is measured now by scans and blood work, by chemo treatments, bone marrow biopsies, and blood transfusion appointments, by good days and bad ones.

Through it all, my mum remains the strongest person I know. She adapts to whatever is thrown at her and stays positive that she will beat the odds. She even won an award for fundraising for Myeloma UK this year after organizing and hosting multiple beautiful events — some alongside celebrity chefs!

She’s received nothing but praise and recognition for her efforts to raise awareness of this seemingly undetectable disease. She always says she feels she was given myeloma so that she could fundraise and help find a cure. We have already sent out save-the-dates for her Christmas dinner dance, which will return for the second year in a row this December.

Her resilience has inspired me to step forward as an advocate as well. I write these words not only to share her story, but to honor her and use my own voice to raise awareness of this rare cancer. What began as my mum’s battle has become our shared mission — one we face together with determination, love, and hope.

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.