Overcoming Cancer in Youth
Recognize how it's affecting you
The first step in working through the process is for everyone in the family to really pay attention to how the diagnosis is affecting them. Often parents have a harder time with the diagnosis than kids (which we'll come back to in a moment). But ultimately everyone will be affected in different ways, and everyone will express the impact in different ways.
This can be difficult for a lot of families, especially when it comes to understanding each other throughout the process. A diagnosis of cancer often comes with feelings of sadness, anger, frustration, guilt, and so on. But because these emotions are not always outwardly shown, family members may have no idea they are occurring. This can lead to a lack of emotional support when it is needed, frustration when one family members thinks another is not taking the diagnosis "serious enough," and so on.
But even if you can understand how the diagnosis is affecting others, it can be difficult to understand how it's affecting you personally. Try to reflect on your behaviors, your thoughts, your beliefs. Try to see if you can identify any patterns. For example, do thoughts of the treatment potentially not working lead to strong feelings of anxiety? Does that anxiety then trigger some other worry thoughts? The better you understand your own pattern, the more you can do to keep things under control.
What can be helpful for this process is to first pay attention to your behaviors. Are you talking with people less than in the past? Are you getting into more arguments? Are you prioritizing others over yourself? These can all be clues to what your thoughts/feelings are underneath everything.
Now, I'm not trying to say your goal should be to always stay calm, cool, and collected about the situation.
You just want to understand those emotions and try to handle them appropriately so they don't take over and lead to other difficulties (e.g., arguing, depression).
Watch out for signs of trauma
Above I mentioned that a diagnosis of cancer can be harder for parents to work through than the patients themselves. This is true, to the extent that it can actually be traumatic for parents. While it won't necessarily lead to PTSD, research suggests parents can develop some symptoms that are similar. If you find yourself "on edge" a lot, having difficulties sleeping and/or nightmares, having feelings of panic (especially when dealing with anything related to the diagnosis), and so on, then pay attention to those symptoms.
If you are struggling with working through the diagnosis, consider talking with a psychologist (ideally a pediatric psychologist, if it's a child who is diagnosed). Psychologists are so crucial to cancer treatment that many hospitals now have psychologists dedicated to the oncology service. It's very normal, and sometimes required, for psychologists to be involved and to assist with care (alongside oncologists, nurses, social workers, child life specialists, and so on). And there are programs designed specifically for parents in these situations (e.g., SCCIP-ND).
Self-care is crucial
Many parents are tempted to focus solely on the cancer treatments, their children, and maybe their spouse/partner. A lot of guilt can arise from a diagnosis of cancer in a child, even if there was nothing that parents did to lead to the diagnosis. Many parents worry about how they are interacting with their other children, and they want to do everything they can to fix the situation (more on that below).
But all of this is tiring, and parents can quickly burnout if they don't practice appropriate self-care. While it's common to feel guilty when practicing self-care, even without the diagnosis of cancer involved, just try to remember: you can only be of help and support to your family if you take care of yourself. If you're burned out, you'll be less able to do what you can. So taking care of yourself is an action that helps you to take care of the others in your family.
Know what you cannot change, and what you can change
This next point is difficult. Not in the sense of logically understanding it; that part is easy. What's difficult is coming to terms with this situation. You cannot change the diagnosis or magically make things better. Yet you'll still probably want to do just that. Knowing what you cannot change, and what you can change, is important.
By accepting what you cannot change, by simply acknowledging that's the case and really owning up to that fact, you free yourself to do something crucial: focus your energy on what you can change. That will be crucial for working through the process, especially during the natural ups and downs that occur throughout treatment.
For example, you obviously cannot change the diagnosis itself. But what you can change is how you react to it. You can maintain normalcy (more on that below), help teach coping skills, get the assistance the family needs (e.g., involvement of a psychologist), and so on. At a time when you may feel powerless and unable to help, you need to try to realize that there is a lot you can actually do to make a difference.
Even if treatments are going as expected, some will be easier while others will be harder. Every person reacts to the treatments in different ways, so be prepared for things to change from week-to-week. Good weeks will happen and should be enjoyed, but you need to try to not be brought down too much by the bad weeks.
During the bad weeks, it's easy for worry thoughts and other strong emotions to take over. But as I said earlier in the article, you need to recognize the effect these situations/feelings are having on you, and put them into perspective of what you can and cannot change. If the feelings are taking over, use some skills to help lower their intensity, then do the best you can to think through a plan.
Likewise, good weeks can be difficult because they may be filled with worries about potential upcoming bad weeks. These worries and thoughts are perfectly normal, but you again need to try to address them if they happen. Good weeks need to be a time of recovery (for all family members, not just the person with cancer). If they aren't, burnout becomes more likely.
And if you have a hard time getting your emotions under control, that's ok. Don't be too hard on yourself; none of this is easy! But consider speaking with a psychologist on the team for some guidance and suggestions.
To the extent possible, it helps to maintain normalcy throughout these ups and downs. Maintaining normalcy does a few things.
- It prevents the diagnosis from taking over the family
- It provides comfort to the diagnosed child, and any of their siblings
- It provides parents with relief because there is a plan and routine to fall back on
- It helps to make sure family bonds remain strong
There are likely other benefits as well, including helping the diagnosed child to get some additional support from friends and school (by not keeping them homebound more than necessary). But these are some of the key benefits.
If maintaining some normalcy seems difficult, talk with your oncology team. They have a lot of familiarity with how to work through some of these challenges, and they can let you know what the child can and cannot due at the current time (based on how their immune system is doing, the regimen they're on, and so on). For example, sometimes diet needs to be changed so certain ingredients aren't included. But by using good substitutes and spices, the family may hardly notice the difference (and it may even give you ideas for recipes that are healthier for everyone).
Communicate where you are
Finally, it's crucial for there to be communication about where people are in the process of coming to terms with the diagnosis. Many people tend to assume everyone else is in the same place they are, but people are often in different places emotionally/psychologically. Plus, there isn't a clear progression for how people work through things like a diagnosis of cancer; some days are good, others bad, and you move between all of the different stages.
But by communicating where you are, and understanding where everyone else is, you'll be better able to help (and get help from) each other. Try to communicate feelings of being "stuck," feeling helpless or hopeful, feeling like progress is or isn't being made, and so on. The point isn't to decide who is "right" in their feelings. There are no "right" feelings in this situation! Instead, it's just to understand each other.
A diagnosis of cancer is never easy to overcome. But it doesn't have to be the "worst case scenario." By following some of the tips above, you and your family can work through the diagnosis more effectively. And again, I cannot stress this enough: even if your oncology team does not require the involvement of psychology, please strongly consider requesting their involvement. Even if nobody is to the point of meeting criteria for a mental health disorder, psychologists can help everyone coordinate with one another, work through the difficult situation, and help prevent mental health disorders from developing.
While I acknowledge that the above information doesn't get too detailed into "here's how to do all of this," my goal was to bring your attention to these ideas and goals. The "how" ends up looking different for every family, so it's not really possible for me to go into much detail in that regard. But hopefully this can provide some of you with guidance, and can trigger some helpful communication between you and the rest of your family.
Have questions about the content of this post? Have you and your family gotten through a diagnosis of cancer, and do you have some advice for what worked well for you? Let us know in the comments! They can be anonymous.