It’s incredible how reliant we become on chemotherapy, immunotherapy, radiation, and other treatments without even knowing it. When it comes to the end of treatment, it’s almost the scariest part. You never realize that until it happens. So, why is it the worst part? It’s the worst part because the crutches are taken away, and how can we deal with that? When we find out our child has cancer and our parental rights have been stripped from us, we relied on treatment to protect them, but now it’s not there. There are several ways I could sit here and tell you how I dealt with it. I could sit here and tell you how friends dealt with it. However, you will process it; however, it comes naturally to you. It seems a little bit redundant, and maybe it is, but there is a part of our brain that will either act in one of the three ways; flight, fight or freeze.
We cannot blame our partner or our child for the feelings that we have. One of the main reasons we feel so scared and so nervous at removing constant care is the ugly word that hangs above our heads for five long years, relapse. I’m not going to try to make this seem better than it is because it is hard. I remember a whole set of complex emotions that I felt; I felt happy he finished, I felt sad we lost our friends in the clinic, and I felt nervous about what the future would bring. I remember asking my son’s doctor if he could continue for a little longer because I didn’t want to stop being “cancer-free” when he was on chemotherapy.
When we have these chemotherapy ‘cards’ taken away, things replace them. We have the PTSD leftover from the treatment and the trauma of going through it. We lost a second family; two years is a long time, and you bond with some doctors and nurses. Any bumps, bruises, high temperatures, or anything in between, we’re going to worry about it. I’ll stop and say it is perfectly normal to worry. And as a parent, it’s your job to make sure that anything that seems unusual is taken care of and addressed immediately. Does this mean every single thing is going to be a reoccurrence? Absolutely not.
Another difficult thing is scanxiety. Scanxiety is an actual word, and it simply means the anxiety that surrounds scans. I have spoken to parents who can’t sleep beforehand and parents who are positive and don’t think it will come back, so they go in without anxiety. I think that that’s probably the easiest way. The older our children, the more scanxiety will present itself within them. It’s essential to make sure that we as adults and caregivers do not rub our feelings off on them. Instead, we support them and do our best to calm any anxiety. You can display your upset behind closed doors, but you need to maintain a sense of normalcy in front of them. I am not saying you should avoid their feelings or change the subject, but listen without judgment and provide empathy, not projection.
The reason why I called my podcast Living With Scanxiety back in 2019 is that, from the moment your child is diagnosed and for the rest of your life, you and your child will likely have scanxiety. Scans determine so much. Scans stage cancer in the beginning later determines the reaction to treatment, then how far is it spread, is there secondary cancer, and is there a relapse. Scans are different for each type of cancer. Some cancers you child might require Echocardiograms, hearing tests, blood tests, PET CTs, MRIs, spinal taps, or more. I’m not a medical doctor, but I always suggest keeping communication lines open to ask what tests and why. All I can recommend is to think about closure, saying goodbye to those nurses, ringing the bell, and going home. There will be no more famous people around to cheer your child up, care packages, or, most importantly, treatment. Some of this will be missed by your child or even you. I do suggest getting mental health counseling before ending and during the end of treatment. It is not going to be easy.