A Message From our CEO

In November, I underwent a total left knee replacement. It was considered a “day surgery,” and I went into it thinking I had a reasonable sense of what recovery would look like. Boy, was I very wrong.

What I did not fully appreciate is how serious this surgery truly is. There is very little flesh around the knee, but there are many layers of tissue like nerves, tendons, ligaments, muscles, and bone all of which are disrupted during surgery and must heal. Ironically, the knee joint itself is often the least of the problem. It is replaced with new hardware designed to move smoothly. The real challenge lies in getting everything around it healed and working again. With that challenge comes pain, significant, complex, and often underestimated pain.

Because of the pain the recovery was far more complex than I had imagined. Textbooks suggest that six weeks after surgery patients should be able to bend their knee to at least 100 degrees. At six weeks, I was not even close to 60 degrees. The reason was simple: major pain.

There’s More Than One Kind of Pain 

This wasn’t because of one kind of pain. It was because of acute bone pain due to the replacing of the bottom of my femur and top of my tibia with bionic material. It was because of neuropathic pain as the nerves around my knee attempted to heal. It was because of constant muscle pain from trying to reactivate muscles that had been traumatized. If you had asked me to rate my pain on a scale of 1 to 10, I would have said 12. It was overwhelming and relentless all day and night long.

What made matters worse was that my pain was not adequately controlled. My medications had not been properly adjusted to address the different sources of pain I was experiencing. The result was a vicious cycle: the more pain I had, the less I could do my exercises and physiotherapy; the less I could move, the slower my recovery became; and the slower the recovery, the more pain I experienced.

Physically and mentally, it was exhausting.

After six weeks of this endless going nowhere I was finally able to see my orthopedic surgeon. My pain regimen was adjusted: one medication to address inflammation, another for neuropathic pain, a stronger opioid to manage the severe pain, and Tylenol to take as needed. The difference this new drug regimen made was immediate and significant. With better pain control, I could finally engage properly in my recovery.

That does not mean the pain disappeared. Even now, three months after surgery, I am not where I should be. Today I can bend my knee to about 110 degrees. Ideally, it should be at least 120 degrees by now, and closer to 135 degrees for a person without limitations. Pain especially at night after a full day of pushing through exercises and daily activities remains part of my reality.

This Experience Has Profoundly Changed How I Think About Pain

Living with significant bone and neuropathic pain for three months has given me a much deeper appreciation of what many people living with myeloma endure; often for far longer, and often without a clear end in sight. The pain associated with myeloma is not just uncomfortable. I have heard it described as excruciating. And yet, in cancer care, pain is sometimes pushed aside because the disease itself takes precedence, as the need to treat the underlying cause is often at the forefront of discussions.

But pain matters. It affects mobility, sleep, mental health, dignity, and quality of life. It affects whether someone can participate in their own care, maintain independence, or simply get through the day. Pain is deeply personal as people experience it differently.

I am sharing my story for one simple reason: to say that I understand. At Myeloma Canada, we know that pain is not a side issue. It is central to the lived experience of myeloma. It deserves attention, validation, and proper management.

What This Means for People Living with Myeloma

If you are living with pain, you are not being “difficult,” and you are not failing because your pain persists. Pain deserves to be talked about openly and taken seriously. Effective pain management can make a real difference, not only in comfort, but in mobility, recovery, mental well-being, and overall quality of life. If your pain is not well controlled, it is important to raise it with your care team and continue the conversation until it is addressed. You deserve relief, and you deserve to be heard.

Martine Elias
Chief Executive Officer, Myeloma Canada