Are you living with CML? Know that you are not alone.
This year will be the seventh anniversary of finding out that I had CML. A lot of time has passed. But sometimes those feelings of fear that I felt then are as fresh as if I just got the news yesterday.
I don’t remember much about that period in my life. The diagnosis, struggling to understand what it meant for me and my family, managing drug side effects – those are all a blur. What I do remember was the feeling of desperation. I desperately wanted to believe the doctors when they said that CML probably wouldn’t kill me. I desperately hoped that the medication would work. I desperately wanted to live.
I responded well to medication and thankfully was in remission within a few months. Of course this was great news. My friends and family moved on, our conversations becoming less about leukemia and more about day-to-day things. And life went back to normal for everyone, but me. Although I understood intellectually that my health was stable, emotionally I couldn’t move past the anxiety of living with cancer.
I spent a lot of time talking to my hematologist about this. About how strange and confusing it was to be living with cancer, to be a part of a world that meant cancer clinics, frequent tests, and medication. But also a world that didn’t include the other things: chemotherapy, radiation, death. I felt I didn’t fit in anywhere – I was neither a cancer patient nor a “survivor.” I was a person who had cancer who was going to be ok. What a strange and complicated message.
The tipping point for me came when I attended a meeting for people living with CML. I met two women that day, both of whom had been living with CML for more than 10 years. This was monumental for me. They shared their experiences and worries and they listened to mine. We talked about how strange it felt to have cancer, and yet be living generally normal lives. About how grateful we were to be alive, but how sometimes the worrying made it difficult to truly enjoy this gift. And how sometimes we didn’t talk to our doctors about side effects because we felt so guilty about complaining when there were so many others struggling with aggressive blood cancers.
Three great things came out of meeting. I now have two smart, beautiful women to count as my dear friends. I realized that I wasn’t so crazy after all. And I was inspired to search for other people living with CML, and build a community so that no one had to feel the uncertainty and isolation that I did.
That was how the Canadian CML Network was born.
You may think that a group of people with a disease that is so treatable wouldn’t have much to talk about, but you’d be wrong. We meet every two months. The discussion is lively and covers everything from side effects to employer issues to questions about drug funding. We are very lucky to have the support of Nancy Pringle, a nurse at Princess Margaret Hospital in Toronto, who brings a medical perspective to the discussion. We also just talk about life. Mostly we get together because it feels so good to spend time with others who know what it’s like.
Every year, we host a series of CML Education Days that address the current issues facing people who live with CML. These Education Days provide access to experts who may not normally be easy to reach. These conferences offer everything you need to know to live well with CML, from advice on how to use food to manage side effects to what to tell your employer. Most importantly, these conferences unite the CML community.
You are not alone.
We’ll be hosting the “Living Well with CML 2015” conference in Toronto on May 23, and everyone is welcome. Come join us to learn about the latest in CML research, hot topics such as the potential cardiovascular effects of TKIs, tips on fighting fatigue with food, and much, much more.
If you’d like to attend, please RSVP at firstname.lastname@example.org. This is a free event, supported by Pfizer Oncology. We hope to see you there. And if you are outside of Toronto, know that soon we’ll be in your city!