Learning to sit with medical uncertainty as a caregiver

On some afternoons, while my mum and I are at the hospital, I notice how long it takes just to wait for our turn. Whether it takes a few short minutes or 20, the waiting feels louder than any words.

We just received another set of blood results, neither clearly good nor clearly bad. The doctor says such ambiguous results are normal when one is suffering from a rare cancer like myeloma. When I asked him for advice on the way forward, he simply shrugged and said we would “watch and wait.”

So we wait.

I sit beside my mum’s bed and feel the silence stretch between each heartbeat — mine and hers. In that space lives every unasked question about what comes next.

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This uncertainty has become its own kind of companion. I used to believe that knowing more would bring peace, but I now understand that with myeloma, clear answers are often in short supply. One month, the numbers look stable. The next, a new pain appears or an old one deepens.

I have learned to sit with this silence instead of trying to fill it. In the quiet hours, I watch my mum’s hands resting on the blanket, the gentle rise and fall of her breathing. I notice the small rituals we have built: the exact way I adjust her pillow, the cup of tea I place within easy reach, the soft music playing in the background. These small acts become anchors in the storm when the bigger picture remains unclear.

There are moments when the uncertainty feels heavy. I step outside under the mango tree and let myself feel the fear without pushing it away. I acknowledge the worry about her bone health, about treatment side effects, about how long her strength will hold. Then I return inside and choose presence over panic.

This practice of sitting with uncertainty connects deeply with the impossible calculations we make every day as caregivers. It also echoes the way I have learned to find grace on bad days and to cope with the thousand tiny losses that come with this journey.

Sitting with uncertainty is one of the hardest skills I have had to learn. It does not mean giving up hope. It means making space for both hope and fear to exist together. In the silence between heartbeats, I am learning that love does not always need certainty. Sometimes it only needs my steady presence and willingness to stay.

We keep moving forward, one careful day at a time, even when the road ahead refuses to reveal itself clearly.

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.