By Lisa Machado
A therapist once told me that one of the biggest challenges faced by people diagnosed with cancer is the feeling of isolation.
I was three months into my CML treatment then, and struggling with an intense feeling that I was completely alone. Even when I was surrounded by people, I felt disconnected, out of place and sad.
It has been eight years and I still sometimes feel this way.
While this sense of ‘aloneness’ isn’t usually about CML, CML is certainly a part of it. Just like any traumatic event, a scary diagnosis may not define you, but it definitely changes how you see things.
It’s easy to feel isolated when you’re dealing with something that is different from what is being experienced by those around you. Everyone can identify with the hassle of a flat tire, or bad service at a restaurant. But the stress of going to a cancer centre, or waiting for test results, not so much.
That’s why community support is so critical. A recent study showed that social support is crucial for people on lifelong targeted therapies (Hoffman J. www.oncologynurseadvisor.com/cml). But we already knew that. Getting in touch with our CML peeps feels good.
Groups like the Canadian CML Network, the Leukemia and Lymphoma Society(Canada and United States), the National CML Society, the National CML Society, Patient Power, the CML Society of Canada, CML Support and closed Facebook communities such as CML Busters, Living with CML, CML Survivors and Caregivers (to name just a few), are successful because they unite people who share the same experience.
You could feel that energy in June when almost 70 people gathered together for the Canadian CML Network’s annual “Living Well with CML” conference. For many patients and caregivers, this was the very first time they had met anyone else living with CML. It sounds corny to say – but I could feel the love. And the comfort that comes with knowing you’re not alone.
The day began with a fabulous question and answer session with Dr. Jeff Lipton from Toronto’s Princess Margaret Cancer Centre. A brilliant oncologist, and someone who genuinely cares for his patients, Dr. Lipton addressed everything from managing side effects (tell your doctor how you are feeling) to treatment-free remission (studies look good, but stopping medication must only be done in a trial), and generic imatinib (make sure you are getting it from the same manufacturer).
Next up was Linda Morinello, a wellness expert, who talked about how mindfulness can heal our spirit and help us become more resilient. According to Morinello, there are four techniques that can help one achieve true mindfulness: meditation, gratitude, forgiveness and compassion.
Since fatigue is such a huge challenge for many people living with CML, it was no surprise that our session on managing fatigue was one of the most anticipated. And it certainly didn’t disappoint. Stephanie Phan, an occupational therapist from Princess Margaret’s Cancer Rehabilitation and Survivorship Program (formerly known as The Fatigue Clinic), spoke for an hour about fatigue: what it is, the many ways it impacts lives and how to manage it. People told me later that not only was the information excellent, but the real value was in having a medical professional acknowledge fatigue. To hear that, “Yes, it’s true, fatigue is real,” was very liberating. It also meant a new level of understanding for caregivers, who often watch helplessly, and sometimes with frustration, as fatigue brings life as they know it to a screeching halt.
Life coach Sue King also explored emotional health issues. Trauma, such as a cancer diagnosis, can contribute to a feeling of being unable to move forward. She talked about “CML Stuckiness,” and what can contribute to feeling stuck, such as grief (mourning the loss of health), side effects, and the need to keep it together for others despite the fact that you yourself need support.
My favourite part was her reference to Sheryl Sandberg, Facebook’s Chief Operating Officer, and her incredible commencement speech at UC Berkeley earlier this year (available on YouTube at www.youtube.com/watch?v=iqm-XEqpayc). Sandberg spoke about the loss of her husband and how the hardest days are what define who you are. She described the sadness she felt the first time there was a father/son event. Crying to a family friend about the fact that her husband couldn’t be with their son, the friend said, “Option A is not available. So we’re going to kick the @#$% out of Option B.” King left us with the message that we choose how our story ends.
Sarah Goldstein, a holistic nutritionist, closed the day with tips on eating to nourish your whole body. She talked about ways to optimize digestion, how to balance blood sugar and what nutrients are key to supporting a healthy body (vitamin D, omega 3, B-complex vitamins and magnesium).
It was a great day, and I know that many lives changed, some just a bit, some in huge, incredible ways. An example was Joanne (not her real name), who had been off of work because of difficult medication side effects. In the midst of fighting her union for disability coverage, she had started dipping into her savings to pay her bills.
But then the magic happened.
After sharing details with Dr. Lipton outside in the hall, she realized that what she was experiencing was a lot more than just pesky side effects – it was serious medication toxicity. And in just minutes, Joanne had a solution to months of pain and discomfort. More importantly, she also had hope that maybe she could get her life back. All in a day’s work for Dr. Lipton. For Joanne, an entire lifetime was made brighter in just a few minutes.
We want to keep sharing the magic. In the coming weeks, we’ll post the conference presentations on our website (http://cmlnetwork.ca/), Facebook page (www.facebook.com/thecanadiancmlnetwork) and Twitter (twitter.com/CDNCMLNetwork).
In the meantime, check out our new video for an inside look into the Canadian CML Network (www.youtube.com/watch?v=hiubDoHquYU).
We hope you can join us next year for Living Well with CML 2017.
- Leukemia & Lymphoma Society of Canada: http://www.llscanada.org/
- Leukemia & Lymphoma Society (US): lls.org/
- National CML Society: nationalcmlsociety.org/
- Patient Power: patientpower.info/chronic-myelogenous-leukemia
- CML Society of Canada: http://cmlsociety.org/
- CML Support (UK): cmlsupport.org.uk/
- CML Busters: facebook.com/cml.busters