Parenting Young Adults with Cancer

How to Parent a Young Adult Cancer Patient

I was sitting on the couch on Thursday night, with some of my siblings, awaiting my parents and other siblings return from their weekly activity. My dad burst through the front door and announced he had bought a brand-new car. My ever-frugal dad, raising seven kids on a single-income, had just purchased a brand new car. He’d driven a series of used cars, often to their very last legs.

He has never in his life purchased a new car. Yet there he was, telling me how all the papers were signed, and I should go tomorrow afternoon and he’d arranged for me to test drive it and pick out whatever color I wanted.

You see, this Thursday night happened to be during my first cancer. Curiously, I noted that my dad was always buying me stuff. He is a very generous person, but this was an extravagant purchase.

Bookmarks, stickers, bracelets, jewelry- every week there seemed to be something new he’d give me. But I realized that was his way of cancer dealing. He couldn’t do anything about the meds, so he’d buy everything he could to show me he cared.

What I want to talk about in this post is parenting young adults with cancer.

I don’t have kids, and I can’t imagine what you parents must feel, but I’ve spoken to a lot of parents, and seen their heart to try to save their kids. I know a lot of parents read this magazine. I’m so grateful you do. I’m grateful you want the best for your child. But I’m sure there’s a lot your children want to tell you but can’t put into words right now, and don’t want to seem ungrateful. So, I’m going to attempt to speak up for them in this post.

It’s Ok to not be Ok.

This is the biggest thing I think I saw with my own parents and see with others. Our lives have all been disrupted beyond compare. We are terrified, and lost, and lonely, and so, so afraid. Our life, and yours, will never be the same.

But we need to deal with it. I know you want us to be in a healthy emotional state and have a positive attitude so we can face the chemo head-on. But sometimes we need to wallow. We need to despair for a bit.

Relapsing was one of the hardest things for me. I was forced to drop out of college, and it was honestly one of the worst times of my life. I didn’t eat or speak to anyone for two weeks. No exaggeration.

I chewed peppermint gum and existed in some paranormal vegetative state. My parents were genuinely terrified.  I knew if I returned to the real world I’d have to face the reality of my relapse. So please don’t be too worried if your child acts like this. It will take time and I don’t think there is anything you can do to speed up that process of accepting the cancer is back.

I wish I could describe to you just a little bit of what we are feeling, but honestly I feel like there is no way I can do that. Even now, I still recall just feeling so empty and surreal. I’m trying to think of words, but I can’t. I distinctly remember how I felt, but I don’t know what to tell you, other than that we need that time to grieve for ourselves.

We want to get better too, but we are in a very different emotional space. Sometimes we just need you as our parent to accept that this situation sucks and let us be sad and mopey and reclusive for a bit. If this continues past a few weeks, I’d say you have problems, but I think several days of radio silence is fine.

You can’t fix this.

I know you’re going to try! I met a dad who had read every word of my articles to date and had done everything I had suggested in a college article. My own dad put his former research background to work and had a new PubMed article and protocol for the doctor every week.

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Another mom I know reached out to Imerman Angels and got connected to me because her daughter and I share similar diagnosis and relapse. That. Is. Awesome. You are showing your care for your children in the best ways you can.

But at the end of the day, we are all somewhat powerless. We need to accept the chemo/radiation/surgery and roll with the punches. I can’t begin to imagine how devastating it must be for you to stand back and be in this situation. This situation really, really, really sucks.

I felt like my parents tried to make it all better. I just watched a Parenthood episode, where one of the characters is diagnosed with cancer and her husband is trying to stay positive, and give her a good diet, and helps out because he wants her to get better. The cancer character says I just need you to let me be sad, and for a moment not try to fix this. No amount of hugs or kisses or band aids can fix this boo-boo like when we were little.

We need you to accept that. We are young adults who have been through various challenges through life. Just stand by our side and be still for a little bit.

Give us our independence.

I was in high school for my first cancer, and college for my second. I know people who’ve been forced financially to move home. Some need to move home to be close to better treatments. Some choose their treatments at their current homes, away from family. That’s ok. We are adults.

We have had to make choices on college, jobs, relationships, and housing. Remember that. Just because we’re back on the couch wrapped in blankets doesn’t mean we’re you’re 10-year old kid again. Yeah, we don’t know everything on life, but we want to be treated like we weren’t sick. We’re already caged into hospitals, restricted on where we go and what we can eat- don’t add to the stressors please. It’s going to be so hard for you,

I know,but let us do those events once in a while, even if it is against your better judgement. Let us be a little reckless occasionally. Cut us some slack.

After my second cancer treatments, I was working an engineering internship, and had to have a surgery to check a suspicious spot. I scheduled it for a Friday morning, so I could be back at work Monday. I trusted my surgeon, so didn’t bother getting much info about the surgery. It ended up being a very tricky surgery, between my heart and my lungs. One wrong move either way could have been really bad. They collapsed one of my lungs for surgery. I woke up with chest tubes and catheters draining out of me, and practically immobile. Over the next few days my other lung collapsed and I faced several complications.

But Sunday morning, my surgeon was doing rounds, and told me if I wanted he would discharge me that day so I could go to work on Monday. My mom was so mad at him, because I wasn’t really in a state to leave the hospital. But he told her I needed to leave so that my emotional state would be OK, because sometimes that’s more important than my physical state. I didn’t leave that day, but his permission really boosted my mental state and helped me recover and not feel like an invalid.

“I” made the choice to stay in the hospital, and I’m forever grateful to Dr. Barksdale for giving me that choice against all medical logic. The fact that he gave me the choice showed he treated me as an adult, and trusted that I would make the right decision. But sometimes you’ll have to let the germ-free stuff go so that our mental state will be OK.

I know it defies all common sense and logic, but maybe something that doesn’t seem safe to you will help bolster our sinking spirits, and that can be a bigger help long term. Sometimes all you can do is trust that it will be OK.

Don’t expect us to confide in you.

I overheard my mom telling someone she hoped I got a boyfriend- so that I would share with him what I didn’t share with her. Not exactly the number one reason I wanted a boyfriend though! But there is so much I haven’t told my parents. I always felt really awkward telling them how I feel, but now they can just read it here…I poured so much of my heart out to my nurse and child life specialists instead.

You’re our parents. You know us at our best and our worst. Heck, you created us!

But you are our parents. Every time we look at your face, we see the pain of our hearts reflected in our eyes. The VERY LAST THING we can bring ourselves to do is admit to even more bodily or emotional pain, and be forced to still look in your eyes. Not sharing with you is our attempt to ease your pain, as you try to ease ours. Please allow us this tiny shred of control.

We know you’re hurting. We are too. Thank you for sticking by us, no matter what.