NED (No evidence of disease). Remission. These are the best words a cancer family can hear. With those words come no mo’ chemo parties and cancer free celebrations. In the midst of the joy, the families work on getting back to normal life. Then something comes along to disrupt that perceived normalcy. It serves as a reminder to your family that you are not quite back to ordinary life. It may come every three months, four months, six months or maybe just once a year.
Once someone has had cancer, they must have regular check-ups, scans…to ensure that the cancer is still gone. For childhood cancer families, these visits bring plenty of trepidation. Children who have had their lines taken out, must be poked and prodded and maybe even put to sleep for scans. It can be uncomfortable and painful but it is necessary.
With these check-ups, comes what the families term “scanxiety.” Scanxiety basically means anxiety about scans. This simple little word is huge and it goes way beyond just a little anxiety. It is a fear that sits in your stomach. It can be overwhelming as if you are trying to breathe under water. The intensity of it is undeniable. For some, the scanxiety sets in as soon as you get that appointment reminder. For others, it creeps in the week or maybe the day before the scans.
In the childhood cancer world, you strike up bonds with other families. These relationships become like new additions to your own family. These people are more than your friends…they are a community that helps hold you together. When they receive good news, you rejoice with them and it brings you hope. When they hear that devil of a word, relapse, you feel that too. It is a sting in your soul; it burns and burns and applies weight and pressure to you because they are your family
As you hear word of more and more children relapsing, this also increases your level of scanxiety when it is your family’s turn for scans. Because if it happened to them, it can happen to you as well.
In this month alone, two of my friends have had to hear that their daughters’ cancers have returned and my heart aches for them.
If cancer never came back…If there was not a risk of relapse…If once someone was healed from cancer, it was impossible to strike them again…just maybe families would not endure such tremendous scanxiety.
Yet that is merely a pipe dream and relapse is real and in the last few months, I have seen friends with children starting their battles for the second and third times.
Cancer kills and it kills…babies, children, teenagers. It robs them of their life and for the ones in treatment, it takes away their chance of a normal life.
It is because of cancer, that scanxiety abounds. It twists around your heart and keeps you from fully breathing. Scanxiety is a fear like nothing else and it makes it where you can’t think of anything else. Even when you want to be confident and positive, it still wiggles in the back of your mind that nothing is sure and life gives you no guarantees. It entraps you until you hear those blessed words again. Remission. NED.
Breathe. Wait. Breathe. Wait. Breathe.