The Mighty Logo

6 Things I Didn't Expect When I Was Diagnosed With Cancer

When I got diagnosed with cancer last June, it was surreal. I’m 26 and, for the most part, fairly healthy. I’m overweight — but I don’t smoke. I don’t drink. I don’t do anything that’s connected with cancer. Yet, there I was, getting diagnosed with stage IV lymphoma.

My prognosis is good. Lymphoma at 26 is unlikely to kill me. But still, it’s hard. And not just for typical reasons, like chemotherapy or nausea, but for other reasons as well. Here’s everything I wasn’t prepared for when I got diagnosed with cancer:

1. My life was about to change forever.

Despite having a good prognosis and knowing I won’t die immediately, I will never be the same as before I was diagnosed. Even when the chemotherapy is over and I only need to go to the cancer center every few months, I still won’t be the same. My life has been forever changed — and I don’t know how to explain it. But every cancer patient I’ve talked to agrees on that one thing. Getting a diagnosis of cancer alters everything. Especially when you’re 26 and find out your cancer is incurable and will inevitably come back again at one point or another.

2. You can be allergic to chemotherapy.

This is something that surprises people every time I mention I’m allergic to the chemotherapy I’m receiving. My throat will get itchy and I need to be closely monitored to make sure everything remains stable. To solve it, they will stop the chemo for an hour, pump me with more Benadryl and steroids, then resume the chemo. This means that my chemo appointments have been up to 10 hours long.

3. The side effects of chemo are worse than the actual chemo (for me).

When I started, chemo I thought it was the most awful thing. I hated being poked with needles. I would cry every time. And now that’s waned away a bit. Instead, I’m left with the aftermath. I’m trying to work while completing chemo and need to call off half of the time due to being so immunocompromised that I get sick, or just having straight side effects. Currently, I’ve had chronic GI issues for over five weeks. I’m a teacher, so I’m not always able to leave my class as the kids can’t be unattended and I’m not going to risk throwing up or having a diarrhea accident due to not getting to the bathroom in time.

4. Being immunocompromised is really awful.

As someone who was fairly healthy before all of this, I’m suddenly sick all of the time. I don’t remember the last time I went a day without being sick with some sort of illness. Maybe two months ago, way back in August? And that’s with the protocols in my state of masks being mandatory. I can’t imagine if masks weren’t a thing and people weren’t being over-vigilant about keeping the population healthy.

5. People don’t get it. They just don’t.

They don’t know what to say. They’ll inevitably say the wrong things most of the time. Especially being so young, my friends have never had a friend with cancer, so I mostly get toxic positivity whenever I try to vent. All I need is a, “You’re right. That really sucks. I can’t even imagine.” Because they can’t. Until you’ve been through it, you really can’t imagine what it’s like. And feeding me, “Everything happens for a reason!” or “Just keep a positive mindset and you’ll be OK!” isn’t helpful. If everything happens for a reason, please tell me why I have an incurable cancer diagnosis at 26 years old. If I just need to keep a positive mindset, why won’t my symptoms go away?

6. How many times I would be told I have “the good cancer” as an attempt to make me feel better.

I can’t even count how many times this has been brought up. I’m lucky because I have the “good cancer.” I know it’s said with good intentions, but just so everyone is clear, there is no “good cancer.” No one is ever “lucky” to have cancer. Cancer sucks. All of it. Every kind. And minimizing this huge diagnosis by calling me lucky is insensitive, at the very least. I’m not lucky to have cancer, and while I have a good prognosis, my cancer is still a bad cancer.

In the end, what I’m trying to say is that cancer is hard. And a lot of people know that, but they don’t truly understand it. They know that cancer means facing difficulties, but they don’t understand the impact of those difficulties or the medical trauma cancer imposes. They don’t know that it’s common to get a diagnosis of PTSD after having cancer because it really is that traumatic. They don’t realize that life still won’t be the same once I’m finished with chemo.

Cancer isn’t an inconvenience you need to put up with for a year or two until you’re in remission. It’s debilitating. It changes everything. It’s something that when it affects you, it’ll leave you with that scar forever. No matter how much time passes, that diagnosis will always be a huge part of your history. And it’s time we start acknowledging that.

Getty image by Teixeira&Teixeira

Conversations 11