Don't forget about YOU!
It's easy to put YOU on the back burner as you face repeated exposure to trauma as you watch your child battle cancer, but your health still matters!
I remember during the first few weeks of Evan starting chemo, driving back to Dallas from Houston with our three kids asleep, my husband and I were discussing logistics and everything we needed to figure out moving forward as a pediatric cancer family. Keep in mind, I am the therapist, and he turns to me and says:
"What are you going to do to take care of you? What will your outlet be?"
You would think I would have been the first to bring this topic up, but I think I was in SO deep into the researching and adjusting and learning the new routines, setting up appointments, going to multiple appointments each week, getting second opinions, figuring out this new life style and what options were available, I completely left ME in the back seat and told her to shush for now.
But he was right. I needed something, and my answer to him?
Well, in all honesty, I said, "I have no idea".
Being a stay at home mom with three kids all 5 years and under made "me time" challenging. I was killing it if I managed to get quality time with my friends at least once a month. I am social, but during Flu season, I retreated. Being so new to having an immunocompromised child, I pretty much avoided indoor locations and resolved to remain outdoors for dining during Texas winters, which is a hit or miss for patio dining weather. My resolve to remain outdoors also limited my extra curricular activity options. Did I mention allowing visitors in our home was and still is avoided at all costs? Then dealing with all the appointments and ever changing routine, it has taken more time out of my normal evening hours than it used to and usually exhausted trying to keep up.
Being a parent to a child with cancer all boils down to me being a mentally, physically, emotionally exhausted mama, desiring nothing more than to hit the bed, turn on the TV, numb myself and shut off the brain....or spin the social media rabbit wheel in hopes of something that would distract my mind from all the fears, the worries, the anger, the disappointments. If that wasn't good enough, I would feed my inquisitive mind with a million hours on Google, searching for answers on short term/long term side effects of chemotherapy and radiation, and all the things that I will be facing. I would go to my support group page and read of side effects and immediately try to learn if those would apply to my son. Better for me to know what's in my future to have a sense of control than be caught completely off guard. Seems crazy, right? Well, this, my friend, is the face of anxiety. It has a way of making you do crazy things for the sake of sanity and a sense of control.
Now that I am in the sixth month since diagnosis , I have noticed how the stress has taken a toll on my mental and physical health for several months and how the need to practice self care and mindfulness is even more evident than before.
Self Care
Self care can be defined as:
Intentional activities you engof meeting your physical, emotional, social, spiritual needs that can help cope with challenges, achieve and/or maintain a sense of health and balance in all areas of your life, especially during times of stress.
I came across this image from BlessingManifesting.com that is a great depiction of ways to practice self care.
To get the most out of your self care, you must first practice mindfulness. You can't just do the things above for self-care but not address your current emotional, spiritual, mental well being. I guess you could, BUT you may end up leaving some critical areas unaddressed, and self care won't seem to be as beneficial as it could be.
Mindfulness
Mindfulness can be described as :
Being aware of your current emotions, understanding your thoughts and how events, especially stressful ones, affect your emotions, thoughts and behaviors. But by giving yourself permission to be present to those feelings as they come up, and allow yourself to feel and process hard emotions and thoughts, you allow yourself the chance to minimize or release the power they hold over you, consciously and subconsciously.
Keep in mind, emotions are stored in your body, and muscle memory applies to how your emotions create a physical response. For example, hearing a gunshot and the adrenaline running through your body with your "fight or flight" response engaged is a recorded physical memory, not just a mental memory. So the next time you are triggered either by sight, smell, sound, etc., your body will respond in similar fashion with intense fear and adrenaline.
Now let's apply this to your daily or weekly chemo treatments or the ever dreaded scheduled scans. Scanxiety is a pretty real thing. The first time you experienced having to sit and wait for all the procedures to either confirm or rule out a cancer diagnosis, your level of anxiety was probably off the chart. The days that followed the initial diagnosis, you probably still had the same level of anxiety. So it's only natural for your body to respond physically when you are exposed to the same situation repeatedly. You, either consciously or subconsciously, respond to your prior trauma of the initial scan. Or experience weekly chemo with your level of stress already elevated. You won’t even notice it because you r mind has a way of adjusting to the new baseline for self preservation.
So how do we become more mindful?
When you are experiencing intense feelings, how do you respond? Do you brush aside the feelings or do you tend to them? Here are ways to practice mindfulness.
1. Give your feelings space!
It is so easy to dismiss uncomfortable or ugly feelings. You start getting anxiety out of fear, and you immediately distract yourself or just say "Don't go there." You feel the urge to cry but make yourself think happy thoughts instead. You are figuratively speaking up at the batting plate with a bat, swinging and hitting any emotions out and away from you, just to not feel the wave of emotions. You will eventually get tired of swinging and be left physically weak to the point that you will try to swing but physically and emotionally you won’t be able to and end up pelted by the emotional balls thrown at you. So don't. Just put down the bat, be a glove and catch the feeling. Take that feeling and give it the attention and space it needs. Let yourself feel it.
It may seem overwhelming at first, but that feeling won't stay forever. Then practice taking deep breaths through it. Find out how your body physically feels. Is your stomach upset? Are your shoulders tense? Do you feel jittery? Do you have tightened muscles? What is your body physically feeling?
2. Name that emotion.
So now you caught that emotion ball. You have let yourself feel uncomfortable. You have taken deep breaths. But now it's time to name the emotion.
Most people have a very limited emotional vocabulary, which also perpetuates the fear of the emotion. If we keep our emotions as "Good or Bad", or "Happy, Sad, Mad", when we experience an emotion, it will be hard to understand what you are feeling and how to address it.
Above is a "Feelings wheel" diagram. Notice how the center of the circle has the major emotions, but the further out you go, you have a whole new set of emotions that could be under that emotional category? Also, look through the wheel and think about where physically in your body you feel these emotions and how they manifest themselves. For example, Anger: you might clench your fists. Anxiety: you may feel like you are shaking to your bones. Fear: you may feel it in your stomach as a huge knot or just an upset stomach. Learning how your body physically responds to your emotions will help you in the future when that emotion pops up.
n the wheel, you first would look to the center and find the major emotion you are feeling, then try to further narrow down the emotions that could better describe and explain what you are feeling. Once you give that emotion space, remind yourself "I feel scared because I feel helpless. I feel helpless because ______. It's okay to be scared because I have no control over this and it is scary." Or for those who are scared to be excited or hopeful, "It's okay to be excited about this. It's okay to feel hopeful. This is positive news for our family and it is okay to celebrate it!"Emotion Vocabulary Wheel | Photo credit: Loom
3. Hug it out
When your child feels sad, you let them be sad and hug them and tell them that you are there to talk about it when they are ready, or you might ask them "What can I do to help? How can I help you not feel _______ anymore?". So apply that concept to yourself. Ask yourself "How can I help myself not feel so ______ anymore?" Sometimes there isn't a direct answer, but sometimes you can resolve to go on a walk or call a friend, journal, find a therapist, or any other activity that you could apply for self care. Give your emotions a hug.
How to practice self care
1. Take inventory
Before you practice self care, it is a good idea to determine which areas in your life need more immediate attention. Maintaining healthy balance in all areas of your life is ideal, but during cancer, it's so, so very difficult. A good starting place is by using something known as the "Life Wheel" or "The Wheel of Life".
Google has several Life Wheels. You can print one out or you can free hand draw one. I will use the two below for an example. Each "slice" represents an important aspect of your life on a scale from 0-10. The center of the wheel is ZERO meaning complete disarray or dissatisfaction. Further out toward the "crust" (where the words are), is the equivalent to 10, meaning achieved complete satisfaction.
An example of how another Wheel of Life looks like once it is filled out. This example has Spirituality which I believe is a very important component for most, especially when dealing with cancer.
You can create your own wheel with your own categories if you don't feel that these best fit you. but these are a great starting point.
When you look at the Wheel of Life to the left, you will see the different categories and notice that this person feels pretty good about most areas of their life. This example ranks Money and Personal Growth as lower, maybe around a 7 or 8.
If you are dealing with Pediatric Cancer or any cancer, I am pretty sure there will be lots of these categories you may rank lower than this example. That's okay! That's how you feel about your current state. It doesn't mean it is permanent. It's just a snapshot of where you are today.
2. Identify areas in need of attention:
It may be tempting to look at the shortcomings in the wheel as something negative or yet another daunting sign of your current struggle, but this wheel is to help you identify the areas of your life that can use some extra attention and tending to! find the areas with the lowest scores, and make those a priority to work through to increase you level of satisfaction with it. Just because one are if your life is suffering, doesn’t mean that the other areas aren’t still equally as important for your mental health.
Some of the things causing you to score your category lower may be out of your contro, but how you problem solve or respond to these adversities will help you focus and prioritize what you can do to improve them by prompting you to action by adding or removing things from your life.
The point of the circle:
Envision the Wheel as an actual wheel you would use on your car to drive around. You want to try to get the wheel as balanced in all areas as possible. If not, when you spin that wheel to ride, it will be a bumpy ride that leaves you more exhausted. Get the wheel as smooth as possible.
3. Find activities for self care
Once you have identified areas that you feel need the most attention, find activities to increase your satisfaction in that area.
If your spirituality is low, then find activities to feed your spiritual life or find a church pastor/elder to help you talk about or work through a spiritual crisis.
If your social life is low, find ways to socialize. Or find ways to let go or shelter yourself from relationships that are too emotionally draining. you need to preserve your emotional energy for this long battle with cancer and the aftermath.
If your hobbies section is low, then find hobbies that you can still be a part of during your child's treatment. If things you were involved in before cancer are no longer feasible, find other activities that you have been meaning to take up.
Is your work/financial area low? Find ways to be more satisfied with that area in your life by things like but not limited to: finding a new job, increase hours, or fundraise, ask your work for personal time off or modified/flexible work hours that will allow you to be present at your child's treatments.
When possible, find activities that can combine different areas if you are pressed on time. For example, go jogging with a friend to improve your physical health and get a dose of quality socialization time.
Keep in mind: your health and fitness is more than just your physical health. Your mental health is equally as important. Find a therapist to help you process what you are going through and help you find ways to cope with all you are dealing with. This is a form of self care too.
By tending to your specific areas of need, you will feel a little more balanced and "in control" of other areas in your life while you feel like your life spins out of control from pediatric cancer.
In conclusion, practicing mindfulness and self care is important for your well being, especially while dealing with your child's cancer diagnosis. A quick google search for self care activities will give you a great list of ideas for self care. But as difficult as it may be to do something for yourself, you won't regret making the time, even if it is just 15 minutes. It will help you in the long run. You will need endurance for the long journey fighting and constantly advocating for your child's life. So don’t forget about you and your well being. It will only make you stronger for the battle, and you will need more strength than you ever though you possessed.