Today, 21 of us gathered in a circle – patients, caregivers, friends – for an in-person “Care & Share” gathering of the Myeloma Toronto community. No big presentations. No slides. Just voices, hearts, and stories. I was privileged to facilitate this session and witness the journeys of these warriors and their caregivers.
Each person shared their hopes for the new year, and where they are in their treatment journey. Some are newly diagnosed Others have been living with myeloma for over 20 years. Some are navigating high-risk forms of this disease, while others are managing stable remission. Each story unique. Each voice important.
The common thread? Hope.
• Hope to travel again.
• Hope to rebuild strength
• Hope to simply continue feeling well and not get worse. Hope to be happy.
Caregivers – the often-unsung heroes – shared their own truths. The love, the exhaustion, the fierce advocacy. One reminded us that being a caregiver means being willing to ask doctors the hard questions, even when it’s uncomfortable.
We talked about diagnosis – how hard myeloma can be to detect. How symptoms often mimic everyday issues. And how many of us weren’t diagnosed until months or even years after the first signs. There’s a real need to raise awareness among doctors about this orphan cancer.
We also spoke about emerging treatments. Many in the room want CAR T-cell therapy – the most promising option for long-term remission today. But access is still limited in Canada. It’s time for that to change.
What made the gathering so powerful wasn’t just the medical information – it was the community. The way people leaned in. Cheered each other on. The way we held space for grief and joy, fear and laughter. This is what it means to be more than a patient. This is what it means to be more than myeloma.
