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Surviving As A Caregiver

Though I’m a young adult cancer survivor, having been diagnosed with Hodgkin’s Lymphoma at the age of 24, I first heard the words ‘you have cancer’ said to my mother 2 years before my own diagnosis.

She was diagnosed with a glioblastoma multiforme (GBM) when I was 22 and just finishing up my undergraduate degree.  I was thus hurled into the world of cancer as a young adult cancer caregiver.  For much of my mother’s illness, she was very self-sufficient.  She continued to work, traveled to Duke University for some of her care while having chemo and radiation done closer to home, and maintained as much of her normal schedule as possible.

Watching this façade of normalcy felt like a mask I wore nonstop.  There was always a countdown going on in my head, ticking towards the amount of time the statistics warned we all had left together.  Yet here she was going to work, cooking meals, maybe resting a little more than usual.  You’d never guess that something life-altering had entered her brain and started causing trouble.  She worked hard to maintain that façade, along with the help of my dad, and it drove me crazy.  I seemed to be the only one having trouble acting as if everything was normal.  As a 22-year-old watching my mom go through cancer treatments, I experienced strong feelings of helplessness and worry and yet here she was going to work, cooking meals, acting as if nothing was wrong.  A lot of my energy was spent in anxiety filled, internal dialogues that impacted my ability to concentrate during my own day to day responsibilities of undergrad finals and then eventually graduate school research and classes but here was my mom…totally able to compartmentalize and act as if nothing was wrong.

“Was I doing this whole caregiving thing wrong?!” I thought to myself.  “Am I being silly getting so worked up about this whole brain tumor thing that clearly my mom is handling just fine?”

Now, this is the point in a lifetime original, made for TV movie where a big fight would happen.  There would be tears, probably some yelling, and then they’d all end up talking it out.  The daughter would explain how isolating it felt worrying about her mom and the future of their family while the mom and dad were seemingly able to not worry at all.  The daughter, through heartfelt tears, would describe how none of her friends could connect with this idea of there being a potential, not so far away future where her mom would die.  And they would all hug and talk about how everyone was doing what they needed to do to cope and keep moving forward but that the daughter’s feelings were valid and normal and came from a place of love.

I did not have this moment with my family.  We didn’t talk about scary things until they’d already happened and it was time to figure out how to move forward.

My mom said that we had two options:

1. to hide under the table and cry, or

2. to keep on moving, so that’s exactly what we did.

But what was I to do with all of these new feelings and confusions when I didn’t have anyone in my life who was either willing to talk or who had experienced something similar?  This is where Lacuna Loft came in.  In our online programs, I found other young adult cancer caregivers.  They were caring for spouses or parents or siblings or friends, they were dealing with chronic and long-term cancer situations or with end of life scenarios like I did, and they were often isolated from their families and friends.  They carried a life changing diagnosis on their shoulders without having any power to fix it.

Finding other young adult cancer caregivers was life changing for me.  I felt isolated and scared and helpless and you know what?  A lot of them felt that way too.  These feelings are rampant in the young adult cancer community whether you’re facing your own diagnosis or that of a loved one.  From these young caregivers I learned self-care, how to be a better advocate for myself and my family, how to more effectively communicate, where to apply for financial aid, how to ask for help, and so much more.  They helped with logistics and emotions, but they also made me feel like a whole person again, a little bit more like the person I was before I became a caregiver.

For me, getting connected to people who understood what I was facing was crucial to learning how to face the new life that cancer created.

This piece was originally published by Elephants and Tea, and was written by our very own Mallory Casperson.  All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers, and loved ones dealing with cancer.