Jelle Damhuis is a 2-time cancer survivor who most recently completed treatment for non-Hodgkin lymphoma in 2018. He is now reintegrating back into the workplace and helping spread the word about cancer-related fatigue to patient groups around the world. You can follow him on Instagram here.
Before I was diagnosed with non-Hodgkin lymphoma, I led the active life of a regular 26-year-old guy. I worked, played sports, and had a busy social schedule. But then I was diagnosed, and life quickly changed. I immediately started with chemotherapy, which consisted of 8 rounds of chemo over the course of 6 months. It was an exhausting period. But thanks to a positive attitude and a great deal of support from my family and girlfriend, I managed to get through it.
At the end of my chemotherapy, I was relieved to be done but even more relieved to find out that the cancer was gone. It was time for champagne!
After celebrating, I was ready to return to my normal life again. But I soon found out this would be more difficult than I had originally thought. After my cancer treatment, I now faced another hurdle: cancer-related fatigue. Although no one had told me about cancer-related fatigue, I learned that it is one of the most common side effects of cancer and cancer treatment.
My cancer-related fatigue made me feel weak, listless, drained, and not like myself. It became hard for me to move or even think. Sometimes, I felt too tired to eat, walk down the stairs, or even use my laptop. Plus, resting did not help it go away, and even the slightest bit of activity felt exhausting.
Because of my cancer-related fatigue, I was forced to stop working and had to shut down my online business. At that time, my treatment was over and I had no job, so all I had to do each day was sit at home with little to occupy my time. Every day was like Groundhog Day: I got out of bed and laid on the couch watching television until I went to bed again. Often, I would be wide awake at night because I slept so much during the day. Where the rest of the world went on with their lives, mine stood still.
Cancer-related fatigue can be hard to describe to those who haven’t been through it. The extreme fatigue I experienced would often strike without any warning, and it felt like I had hit a wall. At unexpected moments, I was intensely exhausted. Although I had experienced tiredness before cancer, this felt different. I would need to lie down even just a few hours into the day.
Despite having excellent help from the hospital, there was little my doctor could offer for the fatigue. So, I searched for help online to find ways to cope. It was through my research that I found out that cancer-related fatigue really is a common problem after cancer treatment. I immediately felt recognition and acknowledgment. Here I had thought that I was the only one. But just knowing that cancer-related fatigue is something lots of other people experience gave me instant relief.
I began to learn about the factors that play a role in energy levels, including the importance of having good sleeping patterns. For example, I realized that napping later in the day—past 3 p.m.—seriously affecting my nighttime sleep. Anxiety and fear of recurrence can have similar negative effects on sleep patterns. I also started using an app that was specifically developed to address cancer-related fatigue. I used the app to keep a record of how I felt each week, which helped me prioritize and divide my energy among my activities.
Being able to understand my fatigue while doing activities to boost my energy helped. For instance, if I had dinner plans with friends later in the day, I would do a few short meditations or breathing exercises to help me re-energize.
I still have a bit of shoulder pain from my treatment, but now I go to physical therapy and do yoga to help me relax, stretch, and improve my mood and energy levels. I also try to keep in mind that every small step helps, and all those small steps together will be one huge step forward.
If you’re struggling with cancer-related fatigue, be open about your feelings, thoughts, and emotions to those around you. Friends, family, and colleagues can’t always tell if you are suffering from fatigue. So, let others know how you feel and what’s going on. Talk with your health care team about ways you can cope with cancer-related fatigue. Even now, I often share with my coworkers if I am having a bad day of fatigue. I let them know if I need to go home early when it becomes too much.
A year ago, I would never have pictured my life the way it is now. Cancer has cost me a lot, but now I have found a way through it.