Survivor Struggles: The Post Treatment Mind Game

Yesterday was World Mental Health Day. I wanted to take the opportunity to speak out about the mental minefield that survivors and their caregivers face post-treatment. When we think about cancer, we often focus on the physical struggles: nausea, pain, hair loss, surgeries, scars. But, the unseen struggles can often be more debilitating than the visible ones.

When you’re in the thick of treatment, everything is moving so quickly it’s easy to focus on the physical, and push the mental aside. You have immediate problems you need to address: blood counts, dressing changes, appointment schedules, dehydration, work coverage, feeding tube levels…the list is unending. Anxiety is present, but there isn’t a lot of time to focus on it. Once the dust settles, you have the time to process. WHAT JUST HAPPENED? WHY DID THIS HAPPEN? WHAT HAPPENS NEXT?

In May, we received the most incredible news. Tommy was cancer-free. It was the news we had been praying for all year, and yet it was still hard to fully exhale. We were thrilled, but the summer brought new, and unforeseen challenges: The What Ifs.

I like to compare The What Ifs to the movie, Inception. You place the tiniest idea in someone’s head, and the mind can create an entire world around it. The mind latches on to fear, and it spirals out of control until you feel like you’re drowning. We might be at a normal check-up, or an appointment for something completely unrelated, and a What If will pop up. The What Ifs normally play out like this:

He had a day last week where he felt a little dizzy. Was the dizziness caused by dehydration, or something bigger? Probably nothing, but we should do a test because of your history. BAM. An ice-cold grip around your heart for a week while you wait for a test result. WHEW! It was nothing, but during that test result, a random spot appeared and should be investigated. Probably nothing, but we should do a further test because of your history. BAM. Another week of unbearable worry. WHEW! It was nothing, but now a small cough has begun. Probably nothing, but we should do a further test because of your history……

You get the idea. Our summer has been filled with waves of relief, followed by waves of anxiety. We know it’s unlikely any of the tests will come back as cancer, but each What If must be investigated to the fullest extent, just in case. The precautionary steps may be necessary, smart, and proactive, but mentally, it’s exhausting. I read somewhere that a large percentage of cancer survivors and caregivers develop PTSD in the months and years after receiving the ‘all clear’. You are at war with your mind and your body, and the lack of control can be debilitating when your fears take the reigns.

This is why staying transparent about your mental health needs is so important. Asking for help when the mind game becomes too exhausting, can keep you healthy, and ready for the next round. There are so many resources available to patients and caregivers. My most valued and utilized resources are through the organization, CancerCare. This organization offers FREE counseling to patients and caregivers. They provide one-on-one therapy, support groups, over-the-phone sessions, and even online community chat rooms. CancerCare also provides educational workshops, financial assistance, and informational publications. They are seriously the coolest! I can easily say that my weekly sessions with my individual therapist at CancerCare saved my mental health the past several months.

Having someone to speak to, who you don’t have to be ‘strong’ in front of, is life-changing. It doesn’t matter how supportive your partner is, how incredible your family is, how available your friends are, having a therapist or counselor to lean on is an invaluable tool. Cancer survivors are some of the strongest people on the planet, and it’s important to let them know they don’t have to be ‘strong’ on their own.

Please spread the word about CancerCare and their incredible resources!

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