It's been a year since I had my last chemotherapy, and when I look back, I see how much can change within a year. After months of suffering from vague symptoms such as headaches, swollen veins, a cough, pain in the chest, I was diagnosed with a non-Hodgkin lymphoma in January 2018—primary mediastinal B-cell lymphoma to be precise. This was not the first time I was diagnosed with cancer. Five years before in 2012, I was diagnosed with a spinal cord tumor (ependymoma). After surgery and radiation, I had recovered with renewed confidence in my body. Although I always had complaints, I had come out of this fight quite well. I completed my studies, made a world trip, started my own company; I was ready for the future!
When I was diagnosed with cancer for the second time a lot of thoughts and emotions went through me... How can this happen to me? But no matter how disturbing the news was, I was determined to overcome the cancer again.
Before my non-Hodgkin lymphoma diagnosis, I had an active life of a regular 26-year-old guy. I had my own online business, played sports and had a busy social life. After the diagnosis, I immediately started with chemotherapy; eight rounds of RCHOP treatment spread over six months. During my chemotherapy, I tried to go on with my ‘normal’ life as much as possible, but I soon found out that was impossible.
The first two rounds of chemotherapy went well, and the sides effects were bearable. With some help, I was able to continue my online business but soon noticed that my energy was diminishing, and I had to make tough choices. Where I used to be able to multi-task several things, this was no longer possible. During chemotherapy, the side effects became worse and worse. It was halfway through the chemotherapy that it became so bad, especially the fatigue, that I unfortunately had to stop my online business. There I was at home from one day to the next, with little to occupy my time. Where the rest of the world went on with life, mine stood still.
With a lot of support from friends and family I managed through all eight chemo sessions. It was an exhausting period of treatment, which, thanks to a positive attitude and a great deal of support, I managed to get through.
That summer, my girlfriend and I took a trip to recharge our bodies and minds despite an upcoming, nerve-racking scan that awaited. Would the cancer be defeated? Fortunately, my doctor gave the good news: everything was gone! What an incredible joy and relief. Time to celebrate with champagne and a party!
Officially in remission, I was excited for my life to return to ‘normal’. No one warned me that this would be the beginning of the most difficult period. Where everyone lived their lives, mine was in limbo. What to do next? As I sat at home, I was bothered not by figuring out what this next chapter had in store but the extreme fatigue that consumed me. At unexplainable moments I was intensely exhausted. This had a huge impact on my daily life. Meeting up with friends or running errands became too much.
The fatigue was different from what I felt was tiredness to before my chemotherapy. This cancer fatigue came suddenly, out of the blue I would need to lie down even just a few hours into the day. It felt like extreme exhaustion. It took much longer for me to regain my energy compared to life before my cancer treatment. This fatigue had a huge impact on my quality of life. Ordinary activities like walking the stairs felt like a huge burden. Due to my lack of energy, I was forced to withdraw from activities with family, limited time socializing and became more isolated. I came into a vicious circle of negativity, laying on the couch all day and watch television, and unable to break out of it.
This all changed during a short walk in my neighborhood. I happened upon a sign of a company called 'Tired of Cancer'. Once I got home, I looked it up and found out that this company had developed an app (Untire) to specifically address cancer-related fatigue (CRF).
Eureka! This is what I had been dealing with all along. Why haven’t I heard about this before? This was the first time I’ve heard about CRF. I came to find out that 40 percent of cancer patients and survivors deal with it. Immediately, I felt recognition and acknowledgement for this problem. The realization that I was not the only one was already uplifting for me. I downloaded the Untire app right away and soon found that it is not one big thing impacting energy but many little things that impact energy levels.
The Untire app is a free, easy to use, comprehensive self-management program. It helped me to step back and take a good look what was triggering my fatigue. It helped me gain insight in my behavior, thoughts and symptoms and showed me the actions I could take to regain my energy. Because of the Untire app, I am more aware of my energy and where I get my energy from. Through the animations and videos, I was able to break out of my vicious circle step by step. I started using breathing exercises to regain energy. For instance, if I had dinner plans with friends later in the day, I had a few short meditations that would help me re-energize.
Over the course of 9 months of using the app, my energy levels improved. After not working for months, I finally felt like I could return to work. Since November 2018, I am proud to say that I am now part of the Tired of Cancer team. It gives me a good feeling to be able to contribute from my own experience to help others with fatigue.
Looking back on last year I realize how much can change in one year. I can’t emphasize enough how important it is to always keep that in mind. A year ago, I would never have pictured my life the way it is now. The periods of illness have cost me a lot but now I have found a way to gain from it. Through it all, keep moving forward, look ahead and remember that you will get through it.
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