After getting brain cancer at 27, here’s what helped me cope.
When you’re young, it’s easy to feel invincible. The realities of illness and tragedy can seem far away, possible but not expected.
That is until, without warning, that line is suddenly beneath your feet, and you find yourself unwillingly crossing to the other side.
It can happen as quickly and as randomly as that. At least it did for me.
A few months after I turned 27, I was diagnosed with an aggressive type of brain cancer called anaplastic astrocytoma. The grade 3 (out of 4) tumor removed from my brain was found after I advocated for an exploratory MRI, despite multiple doctors telling me my concern was unwarranted.
From the day I received the results, which showed a golf ball-sized mass in my right parietal lobe, to the pathology report that followed the craniotomy to remove the tumor, my life molted from that of a 20-something working through graduate school to someone with cancer, fighting for her life.
In the months since my diagnosis, I’ve been unlucky enough to watch several others I love go through their own terrible transformations. I’ve picked up the phone to unexpected sobs and listened to the story of a new crisis that’s flattened my immediate circle of friends to the ground, who are all in their 20s.
And I’ve been there as we slowly picked ourselves back up.
In the wake of this, it’s become clear to me how little preparation we 20-somethings get for the really painful stuff, especially in the first few years out of school.
College doesn’t teach a class on what to do while your partner or best friend or sibling undergoes a surgery they may not survive. Knowledge of what to do when crisis hits is often learned the hard way: through trial and error and lived experiences.
Yet there are actions we can take, ways we can help each other, and things that make the unbearable a tiny bit easier to navigate.
As a reluctant new expert on the world of surviving crises in my 20s, I’ve collected a few of the things that have helped me get through the worst days.
As obvious as this might sound, asking for help from friends and family in the trail of tragedy might be one of the hardest things to do.
Personally, letting people help me has been difficult. Even on the days I’m immobilized by chemo-induced nausea, I still often try to do it myself. But take it from me; that’ll get you nowhere.
Someone once told me, in the midst of me protesting help, that when tragedy strikes and people want to help, it’s just as much of a gift to them as it is to you to let them. Perhaps the only good thing about crises is how clear it becomes that those you love fiercely love you back and want to help you through the worst of it.
Also, when asking for help, it’s important to be as specific as possible. Do you need help with transportation to and from the hospital? Pet or child care? Someone to clean your apartment while you go to a doctor’s appointment? I’ve found that asking to have meals delivered to me has been one of the many helpful requests since my diagnosis.
Let folks know, and then let them do the work.
Getting organized Websites like Give InKind, CaringBridge, Meal Train, and Lotsa Helping Hands can be great tools for listing what you need and having people organize around it. And don’t be afraid to delegate the task of creating a site or page to someone else.
When someone is sick or injured, it’s common for those who are closest to them to want to know what’s going on and how they’re doing on a daily basis. But for the person who needs to communicate all of the important things, this can be exhausting and difficult.
I found that I often worried I’d forget to tell an important person in my life when something big happened, and felt myself daunted by the task of retyping or retelling the latest updates in my care, diagnosis, and prognosis.
Early on, someone suggested I create a closed Facebook group to inform and update people along the way. It was through this group that friends and family were able to read updates on the day of my six-hour craniotomy, and afterward as I struggled to recover in the ICU.
As the months have gone on, it’s become a place where I’m able to celebrate accomplishments with my community (like finishing six weeks of radiation!) and keep them all up to date on the latest news without needing to tell everyone individually.
Beyond Facebook Facebook isn’t the only way to let those you love know how you’re doing. You can also set up email lists, blogs, or Instagram accounts. Regardless of which one you opt for, you can also have someone help you upkeep these as well.
Whether you’re going through your own health challenges, watching someone fight to recover from a catastrophic event, or deep in the trenches of grief related to death and loss, being patient will save you every time.
It’s excruciatingly hard to accept. But as fast as things move in moments of crisis, they also move painfully slow.
In the hospital and in recovery, there are often long periods where nothing changes. This can be frustrating. While it’s easier said than done, I found patience can be achieved through a variety of ways, including:
- taking breaks
- practicing deep breathing
- writing down how much has already changed
- allowing yourself to feel all of the big feelings and frustrations
- acknowledging that things do shift and change over time (even if it’s only in small increments)
While family and friends can be immensely helpful in offering support, it’s equally important to find someone removed from your inner circle who can help you navigate this crisis on a deeper level.
Whether “professional help” is a therapist, psychiatrist, or religious or spiritual mentor, find someone who specializes in what you need to survive your current experiences.
Support groups are amazing, too. Finding people who understand exactly what you’re going through is so important. It can offer a sense of not being alone on this journey.
Look to social workers or care centers for information on where to find support groups. If you can’t find one, make one out of the people you meet through your experience or on the internet. Don’t stop seeking support. Remember: You deserve it.
Finding the right help for youIf you’re interested in speaking with a mental health professional, check out these guides:
While we might argue against this sentiment and fight with all we have to say it “won’t be the case for me,” the truth is, after a crisis, everything changes.
For me, I had to leave a grad program I loved.
I lost my hair.
I had to surrender my time and freedom to daily treatment.
And I’ll forever live with the memories of the ICU and the day I heard my diagnosis.
But there’s a silver lining to all this: Not all change will necessarily be bad. For some people, they learn things about themselves, their loved ones, or their community that they might not have expected.
I’ve never felt as supported as I do now, or as lucky to be alive. Let both be true: Be pissed, yell and scream and hit things. But also notice how much good there is. Notice the small things, the precious beautiful moments of joy that still seep into every terrible day, while still letting yourself rage that this crisis exists at all.
When it comes to experiencing a crisis, there’s no way out but through, as the saying goes.
And while none of us are every truly prepared for tragedy to strike, regardless of whether we’re 27 or 72, it helps to have a few tools in our arsenal to help us navigate these particularly tough moments.
Caroline Catlin is an artist, activist, and mental health worker. She enjoys cats, sour candy, and empathy. You can find her on her website.