Caregivers, Colorectal Cancer, and Mental Health

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Community Blog
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Theresa Maschke joined the Fight CRC team in May 2021 as a Content Writer, binding her love of writing and editing with her experience as her husband’s (a stage III survivor) caregiver. Theresa lives in Mount Laurel, New Jersey, with her husband, Joe; three kids, Elizabeth, Joey, and Caroline; and newest addition, her puppy named Buddy!

Worst conversation starter ever: colorectal cancer (CRC) and mental health.

Yet, here we are.

Being a caregiver is mentally grueling. Being the person fighting CRC is mentally grueling. Being a family member of someone fighting CRC is mentally grueling.

I sense a pattern.

When Joe was diagnosed with stage IIIb rectal cancer, I needed to talk to someone. Anyone. Without actually saying “rectal cancer.” I needed to talk about feelings. 

Joe loathes talking about feelings. So much so that recently I read a poll question “Is your family loud?” on social media, and I just had to respond. “My family is so loud, except for my husband who is like living with a mime.” (When I told Joe about this later, he found zero humor in it.)

We were into mindfulness and appreciating every moment of every day. We drove about an hour and fifteen minutes to fly a kite on a beach. It was worth it!

For whatever reason, people enjoy talking about mental health only slightly more than talking about CRC. There are no statistics on this because I made it up. But I 100% believe it is a fact.

It’s easy to joke about CRC when it’s in the rearview mirror (no pun intended, but pun acknowledged). From the moment of Joe’s diagnosis, I felt a level of stress and anxiety that I had never before felt in my life. I kept smiling and grinding forward. “He’s doing great! Six infusions under his belt! Such a trooper!” 

But life was a struggle. Joe was struggling with treatments. They were brutal. He felt terrible for days afterward. I was tense, trying to anticipate what he needed to make his life easier and more bearable. The kids were incredibly strong, which upset me tremendously because kids should not ever have to be that strong or show that strength. Kids should be allowed to buckle, cry, be angry, or scared. And so should I.

But we didn’t have time for that. We were too busy as a family fighting CRC. Joe is not a person who talks. He has always found his therapy through work. Whether he is training, repairing things, or fighting fires, as long as he is physically busy, his mind is quiet. That’s how he is wired.

Unfortunately, because of his treatments, he was no longer able to fight fires, and that lack of physical movement added to the heaviness in his mind.

In my efforts to make sure the kids were OK, I ran myself ragged. I drove my daughter to volleyball and cheered her on. I drove my son to baseball and watched from the stands. My oldest daughter is not a sports kid, so that provided my one relief of one less place to be.

My goal was keeping my kids occupied, so they wouldn’t think about CRC. I’m a talker, so I checked in with them frequently, “How are we doing?” “Do we need to talk to someone?” The answer was always, “Good.” “No. I’m fine.”

Once a month, the hospital where Joe was treated offered a mindfulness program, which was run by a social worker. It was my slice of heaven. Patients and caregivers could attend. I went to the first session and was hooked. I could talk with people who understood what I was going through. I listened and could relate to their stories and struggles.

The social worker would then run through a mindfulness exercise, whether it was breathing, imagery, or working with all five senses or only one. Each session I left feeling calm and like, “I can do this.” I learned tips and techniques for self-calming. I shared them with my kids and Joe. This monthly class was extremely helpful in getting me through the day-to-day life as a caregiver. My only regret was that they didn’t hold these classes twice a month, or more.

We all soldiered through Joe’s diagnosis, treatment, surgeries, to “no evidence of disease.”

And then we all promptly fell apart. 

One of the first outings following Joe's first surgery (after he received the ileostomy) was going to a baseball game with fireworks following the game. I know we all felt stress and pressure of "Will he be OK?" He was fine. We had a great night. We lived in the moments and made another memory together.

Call it PTSD. Call it what you will. But it was very real, very deep, very heavy, and very full of hurting. We all suffered in different ways. After being told “No. I’m fine.” I scheduled an appointment with my daughters to see a therapist and both practically kicked and screamed (they’re teens by the way) all the way into her office (separately). But every other week, an hour later, I would hear, “Ugh. You’re right, mom. You’re always right.” Followed by an eyeroll.

My son, who I also encouraged to see the therapist, told me he didn’t need to see her, but he would let me know if he changed his mind.

This is the awesome thing about kids; they are all unique. I knew if my son needed to talk to someone besides me, he would tell me. He found a different method of dealing with his feelings: XBOX and his friends were his therapy.

The one program I “forced” all three of my kids to attend revolved around the theme of “a day away” where the kids had so much fun that they briefly forgot about the heaviness that having a parent fighting cancer brought to their life on a daily basis. The program was so successful that they had occasional clinic-type nights with golf, basketball, or art therapy. This program was exactly what my kids needed. Time to not think about cancer and time to heal.

I knew I needed to see someone, and as the mom, I am always taking care of everyone before myself. Let me once again reference those airline attendants who tell you to put your mask on yourself before you can take care of someone else. I felt like that applied to other people. I just didn’t have time to take care of myself. 

Until I wore away to a fragile exposed nerve. I knew it was my turn to make time to see someone for help. The worst part is it took me weeks to find someone and get an appointment, and I walked away disappointed. Therapy is really a short list for me: Sit in a chair and nod your head. Acknowledge how I’m feeling. Let me talk. 

Camp Oasis, a free program for kids with a parent with cancer provides "a day away." Our kids went kicking and screaming (not really, but they didn't really want to go), and each kid said at some point once they returned, "I had so much fun. It was nice to forget about cancer for a day."

As I told the first therapist what a devastating financial impact CRC was having on my family, and that I was looking for a full-time job, despite staying home for a decade and a half with my kids (while working freelance part-time jobs throughout the years), she told me, “Oh, you will love it. It will feel like a vacation.” That was not helpful nor did it validate what I was feeling.

It took me months to get the strength up to again seek out another therapist. I liked her at first. Her background is in social work helping people and families dealing with cancer. I thought I found the Holy Grail. Until she started talking about her family, and all I could think of was “Wait! I’m paying you to listen to me.”

Then COVID-19 hit, and Zoom therapy didn’t do it for me.

As COVID-19 restrictions lighten up, I am again seeking a therapist. I don’t have time for one or for office visits. I am so tired, emotional, and wiped out two years later (post-final surgery). But I know that I need to see a therapist, and I should have made my mental health a priority about three years ago (post-Joe’s diagnosis).

There is never shame in grabbing an outstretched hand to help pull you up. There’s never shame in needing support or help.

Fight Colorectal Cancer (Fight CRC) is like an angel from above. If you’re newly diagnosed, come to the twice-monthly meetups. Do you need tips on self care? Well, here’s the podcast for you! Not a talker but love to work with your hands? Perhaps art therapy is in your future -- maybe even your present! Do you just need to appreciate the here and now, and find your Zen in the process? Then this Mindfulness webinar is just for you! 

No one fights alone! And even when you feel too tired or beaten down to walk out the door to “one more appointment,” just flip open your laptop, grab a tablet or iPad, or even your phone, and check out all of Fight CRC’s free resources.

I wish I knew three years ago just how much information, help, support, and resources Fight CRC has. They truly are relentless champions of hope.

And where would any of us be without hope?