For many, the word “survivor” summons up images of strong, fit, beautiful, and tanned participants in a popular TV show.
Five Suggestions for Survivors
For many, the word “survivor” summons up images of strong, fit, beautiful, and tanned participants in a popular TV show. But, for lymphoma patients, “survivor” takes on a very different meaning, since it usually comes at a time when one feels weak, fragile, and ravaged. Still, “survivor” can be a badge of honour, representing a precious, safe, and cherished place that they have worked incredibly hard to reach. For what they faced, for what they endured, they are “survivors”. For other patients, the word “survivor” has a negative feel, since it can imply that they had some sort of valiant effort that cast them in the role of “hero” and “winner”. It begs the question, “what about those who weren’t ‘winners’, what were they”? The truth is, there is no easy word to capture the unique place one lands after a cancer ordeal. There has not yet been a word that adequately describes the physiological, social, and emotional effects of cancer diagnosis and treatment, not to mention fear of recurrence. It is no wonder, therefore, that some people who have been through lymphoma are a little reluctant about being called a “survivor”, but for the most part, it has become accepted as the term that brings with it a shared understanding of some common phenomena and experiences.
The needs of lymphoma survivors are vast and varied. There are no easy answers to the question of how to best navigate this time in your life. Yet, there are some common tips that many lymphoma “survivors” have found helpful. Below, we’ve gathered five of the suggestions for survivors we’ve heard most often over the years, and wanted to share them with you to help you during this transition:
1. Be an active partner in your survivorship. After intensive treatment and frequent medical interactions, lymphoma patients sometimes feel lost and forgotten when treatment is over, and it can be difficult to know what to expect. Getting involved in decisions about your follow-up care can be a good way to regain some of the control that may be lost during treatment. There are many resources for ways you can be involved, so be sure to seek them out.
“I asked my oncologist to give me a summary of my treatment and what aspects of my health needed to be followed. Then I made a list of questions for my doctor to be sure I felt on top of everything. This really helped me feel in control and to minimize the fear of the unknown”
2. Be patient with your body’s healing time. Many are waiting expectantly for that last treatment, so that they can finally feel normal again. It can be very disappointing to find that “normal” doesn’t come right away.
“It takes our bodies time to heal, and I learned that I really needed to respect that process. After I finished treatment, it took me almost a year before I even started to recognize my old body.”
3. New perspective does not mean a new person. A diagnosis can lead one to examine their priorities and make some healthy changes, but it is important to remember that change takes time and practice. Not everything will come easily and you need to give yourself room to find your new normal.
“I put this expectation on myself that I would be this new person. I found that I still made mistakes and I couldn’t live this new intentional life that I had in mind perfectly.”
4. Plan what you want to say to others. Often when you’re immersed in treatment, there’s lots of discussion about your experience, with fellow patients, medical professionals, and family. When people get back to “the real world”, they often find that the door is not so open to talk about the “C” word. Yet, friends and family have questions and want to hear, but they don’t know how to approach you. It can be helpful to plan how you will broach the topic at work, or with neighbours, or friends who you have not been in touch with for a while.
“When I got back to work after 6 months of lymphoma treatment, I found that nobody knew what to say. There were a lot of uncomfortable moments. So I developed a sort-of script and a plan for how I would open up the topic, and people responded really well. It turned out I had to give them permission and set the tone.”
5. Be forgiving. There is no correct way to navigate through a lymphoma experience. For most people, this is new territory, and both patients and their loved ones find themselves not always knowing what is the right thing to say or do. There is a lot of fear and stress, not only for the patient, but also for their loved ones, and people don’t react under stress the same way they normally would. Sometimes patients find themselves disappointed, hurt, or even angered by how others react, and it is important to deal with these feelings. Forgiveness can be key to healing these emotions.
“After struggling with some pretty challenging situations with my spouse and friends, it helped me to realize that cancer should be the object of my disappointment and hurt, not the people I loved.”