How we’re adapting and finding hope in life with myeloma
Much has changed since Mum's diagnosis in 2021, but we keep going
When my mum, Esther, was diagnosed with myeloma in January 2021, our world split in two. There was the life we thought we were living, and the life we suddenly had to face. Myeloma was a word we had never spoken before, but overnight, it became part of every conversation, every plan, and every fear.
We had to learn quickly. We learned about bone marrow, stem cell transplants, and survival rates. More than that, we had to figure out how to live with uncertainty as a constant companion. For nearly a decade, my mum and I had lived in the same Florida community, just minutes from each other. Our lives were intertwined in comforting daily routines — school pickups, family dinners, cups of tea.
But her diagnosis changed everything. To access the specialized care and health coverage she needed, she and my dad had to suddenly move back to the U.K., where they’re from. What had always felt so close was, in an instant, an ocean away.
Those first months were filled with tests, treatments, and sleepless nights. When my mum began stem cell therapy, we clung to it as our best chance. We endured the long hospital stays, the setbacks, and the fragile days of recovery. The possibility of remission kept us going.
After months of sacrifice and courage, the words we had longed for finally came: remission. It felt like the sun breaking through. For the first time in months, we allowed ourselves to breathe.
But myeloma doesn’t always let the story end there. Six months later, we heard the word no family ever wants to hear: relapse. It was a brutal reminder that remission is not a cure. The celebration we had dared to embrace dissolved into fear.
Mum tried another drug, but it didn’t bring the results we had hoped for. And so, once again, we had to pivot. In the rare cancer world, you don’t stop. You adapt. You keep going.
The treatment my mum is on now has been nothing short of remarkable. Her results have been so strong that we hope she can continue long-term. For our family, it has brought not just stability, but a renewed sense of hope.
Adapting to ongoing change
Living with myeloma for nearly four years has changed us in ways I never could’ve imagined. At first, I thought the biggest changes would be in my mum’s health. What I didn’t anticipate was how the change would ripple outward, reshaping our family and the way we spend time together.
When my parents lived nearby, their presence was part of daily life. Now, distance has made that rhythm different. We no longer share the ordinary moments — cups of tea, quick chats, small routines. Instead, we pour ourselves into the time we do get.
This past summer, we spent weeks together in Crete, making memories in the sunshine that we’ll carry through the harder days. More recently, my parents came to Florida to celebrate my daughter’s birthday, turning one afternoon into a treasure chest of joy. It’s no longer a daily thing. But it has taught us to make the most of the special times we have. Myeloma has taken away some of the ordinary, but it has made the extraordinary all the more precious.
For me, one of the biggest changes has been stepping into advocacy. Sharing our story has connected me with a community I never knew existed. It has shown me the power of voices joined together — patients, caregivers, advocates, and researchers — all working to push rare cancers out of the shadows.
Advocacy doesn’t erase the fear of relapse or the grief of what’s been lost. But it transforms them into something purposeful. It turns our pain into momentum for change.
If there’s one thing I’ve learned since that day in January 2021, it’s this: Living with myeloma is not about finding closure. It’s about carrying fear and hope side by side. It’s about celebrating the small victories — a stable result, a sponsored drug, a day without pain. These are not “little things.” They are milestones. Proof that even when the future is uncertain, the present can still be full of life.
To those newly diagnosed or caring for someone with myeloma: You are not alone. To researchers and companies pioneering treatments: Your work doesn’t just extend lives; it restores families and futures. And to every advocate: Your voice matters. Every story strengthens the rare cancer community.
Four-plus years after my mum’s diagnosis, we are still learning, still adapting, and still holding on to hope. The storm of 2021 feels far behind us, even though the clouds remain. Today, she is thriving on a treatment that works. And that, for us, is everything.
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.
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