In this section we will focus on understanding your fear of recurrence and examine scanziety. Most cancer patients encounter some fear of recurrence (the return of disease) during their cancer survivorship. This is a very natural emotion that occurs when someone is not actively taking treatment anymore or your medical condition is not being watched as closely as before. Acceptance will help you face it head-on.
Tips for understanding your fear of recurrence:
This notion will keep coming up in this topic. It is your weapon in this fight with fear.
And let’s face it; fighting fear can feel like a losing battle. Sometimes it’s just about putting one foot in front of the other.
This may sound like something you can’t deal with but look at it this way: You faced Cancer didn’t you? It would be an awful shame to waste the time you worked so hard for being held down by fear.
Accept it (There’s that word again!). Let’s move on.
So you have accepted your fear and you are ready to move on. What you need to consider next is that you may never forget that your GIST can come back. Many survivors report that they think of it less often as time goes by, but the thoughts are still present. The goal here is not to “beat” your fear of recurrence, but to live with it…live despite it.
Remember that dealing with your fear of recurrence is not a completely mental struggle. One component of coping is maintaining your follow-up care.
Whether you have had surgery or are taking drugs like Gleevec and Sutent, whether you are experiencing shrinkage, stability or have “No Evidence of Disease” (NED), follow-up care is necessary to combating recurrence.
Here are some things to think about for follow-up care:
- Talk to your doctor about symptoms that worry you
- Which doctors you need to see and how often
- Which scans you need to have and how often
- Better your self through good nutrition and exercise
Coping with these issues can be a challenge. Yet many say that getting involved in decisions about their medical care and lifestyle was a good way for them to regain some control.
Express yourself. Let it out. Many people find that when they express strong feelings like anger or sadness, they’re more able to let go of them.
Some people sort out their feelings by talking to friends or family, other cancer survivors, or a counselor. But that might not be right for you, or at least it might not be right for you at that moment and that’s okay.
Try writing these down in a journal. You can even make a cancer journal to separate the feelings attached to your fear of recurrence from the issues you want to vent about in everyday life. Put your emotions down on paper and then read them back to yourself. If you can’t talk to others about your cancer, you can always express your thoughts to the world. Blogging can be done anonymously, and gives you a feeling of empowerment. There are a number of ways to create a free blog at CaringBridge and Blogger.
When you are not venting or talking and sometimes just wallowing, try to distract yourself. Don’t let the fear keep you from moving forward. Accept its presence and distract yourself long for it to slink away. This might sound like an “easier said than done” situation but it is actually attainable if you go about it the right way. Some of our members have suggested crossword puzzle and short books. Make sure that you tackle short, easily completed tasks or chores. Don’t take on something that requires you to think abstractly, that will just invite your mind to wander. What you want to do is pick a goal and focus solely on that goal.
Keeping active is another way to accomplish this and you get the added benefit of improving your fitness. Get out of the house and out of your thoughts and go for a jog or a hike. Too cold to leave the house? No problem! Pick up an exercise video and pop it in; you can get fit and entertain yourself at the same time.
Working with your fear and not being run by it does not mean that if you do reoccur, it will be harder on. Recurrence is a painful experience no matter how prepared you think you were for it. It is better that you lived your remission to the best of your ability because you will use that persistence and passion for life to fight GIST again.
Around and during your next CT or PET scan many people experience what some GISTers call “Scanziety”. It’s the nagging, gnawing, sinking feeling that something is going to go wrong. As one GISTer wrote in a poem, “My smile is low now because I just want to go now.” Here are a few important things to remember:
- Find ways to distract yourself.
- Schedule things that you enjoy for that time period, like concerts and parties. However, if you start to feel social anxiety (which is common), stay away from those social functions. Choose instead to visit parks or plays with a few friends who you are close with.
- Try to avoid scheduling things that will require careful thought. You don’t want to make mistakes or not finish because of your scanziety.
- Warn people! If your scan is coming up in January, let people know that you may not be “yourself” at this time. Friends will be more forgiving of short attitudes if they are aware of your heightened stress level.
Come up with a treat to give yourself after your appointment. Try to focus on this. Not only will you have something to look forward to, but you will be thinking past the point of scans and doing it positively.
The possibility of recurrence is real, so it’s natural that fear will eventually find you. Choose not to dwell on it; if you feel it, try to acknowledge it and move past it. Remember, you can’t beat fear, but with a little willpower and practice you can stay one step ahead of it.