Diagnosed With A Rare Leukemia: The Patient’s Perspective
Patient Perspective A diagnosis of leukemia can be as difficult to deal with emotionally as it is physically. It is critical for patients to have access to support groups and the right resources.
It was in 2008 that I had my first bone marrow biopsy. Days earlier, a blood test had shown that I had a form of blood cancer. As the needle went into my back, I clutched my daughter’s little sock in my hand for luck, hoping that it was just a big mistake.
Soon after, the results were in. I had a rare leukemia called Chronic Myelogenous Leukemia (CML). The prognosis was good; so good, in fact, that the nurse gave me a pat on the back, literally. “Congratulations,” he said with a smile. “If you’re going to get leukemia, this is the one you want.” I remember thinking that that was such a strange thing to say.
Sick and overwhelmed
It turned out that CML could be treated with medication, and I was in remission within a few months. Although I looked well, inside I was a mess. I felt anxious and worried, and on days when side effects like nausea, fatigue, and bone pain were too much, I felt completely overwhelmed, and not at all lucky.
There wasn’t a lot of credible information on CML, but thankfully, my hematologist was not only a renowned CML expert, but also empathetic and kind. At every appointment, he answered my questions, sometimes twice, and worked hard to educate me on this disease.
Community support and access to resources
Months later, I was still struggling with the fear that comes with living with cancer. Seeking the support of a community who shared my experience, I formed a group for people living with CML. It quickly became clear that many patients did not have access to the kind of medical support and education that my doctor provided.
A common complaint was that when they mentioned challenges, like anxiety or side effects, to their doctors, instead of being offered advice or education, they were told they had the “lucky leukemia.” Not very helpful, especially if you are depressed, or have had to quit your job because of debilitating side effects.
The need for patient support groups
Today, our group, the Canadian CML Network, is working to close this gap. As people living with cancer, we know that the key to achieving the best health outcome is having a healthcare team who listens, and actively provides holistic care, regardless of how treatable the physical condition is. This not only means providing medical care, but also access to psycho-social support, nutrition and wellness advice, disease education, as well as support groups.
I do feel incredibly lucky that there is a medication that keeps me well so I can be a mom. Still, living with leukemia is scary, and if there is one thing I know for sure, it’s that it makes all the difference to have people around you who know how it feels — luck has nothing to do with it.