Eight Things No One Tells You About Having Cancer (But You Deserve to Know Anyway)
Samira DaswaniWhen I was diagnosed with breast cancer in my early 30s, I thought I understood what was coming: treatment plans, appointments, medications, side effects. I’d read the blogs, done the searches, even had a few friends who’d been through it. But what followed was something no pamphlet or prognosis had prepared me for. The reality of cancer isn’t just medical, it's logistical, emotional, and existential. It’s messy, nonlinear, and often invisible from the outside.
So here’s what I wish someone had told me. If you’re in the middle of it, or walking alongside someone who is, maybe this will help.
1. Cancer is a second job. And it doesn’t pay.
Managing cancer means managing calendars, medications, insurance calls, side effects, labs, and decisions that often come with no clear answers. You’re doing the work of a care coordinator, patient advocate, and project manager, all while dealing with exhaustion, uncertainty, fear, and the stakes feel impossibly high. Keeping everything in one place, a notebook, a shared spreadsheet, or a digital tool like Manta Cares can help bring some structure to the chaos.
2. Advocating for yourself isn’t optional.
You will have to speak up, sometimes over and over again. It doesn’t mean you don’t trust your doctor. It means you’re human, and the system is built around protocols, not people. Bringing someone with you to appointments, writing your questions down in advance, and asking providers to slow down or repeat something can help you get the clarity you deserve. No one cares about your care more than you do.
3. You’ll need to get fluent, fast.
Cancer has its own language, from medical terms, treatment options and side effects to billing codes. At times, it’ll feel like you’re earning an unofficial medical degree just to keep up. Don’t be afraid to pause and ask what something means. Keeping your own glossary or summary of key terms can help you feel less overwhelmed over time.
4. The resources are out there. Finding them is the hard part.
There are nonprofits offering meal trains, transportation, lodging, financial support, counseling, peer support, and more. But no one hands you a comprehensive guidebook. If they do, it’s too much. Ask your nurse, navigator, or social worker directly for help, and be specific with your friends about what you need, like a ride, childcare, or someone to organize meals. We have aggregated many of these resources in the Manta Cares platform, you can access them for free at mantacares.com.
5. The stigma is still there, even if no one talks about it.
At work, at home, in our communities, people don’t always know what to say, so they say the wrong thing or nothing at all. Assumptions get made, invitations disappear and conversations shift. You are allowed to step back from relationships that make you feel worse and focus on those that show up and care, not pity.
6. Despite everyone’s best efforts, parts of the experience will still feel dehumanizing.
You’ll be poked, prodded, scanned, and scheduled. You’ll sit in waiting rooms with a gown that barely closes in the back. You’ll repeat your story to five different people in one day. Bringing small comforts, your own snacks, a playlist, a sweater that smells like home, can help you feel a little more like yourself.
7. Your people matter.
Connection changes everything. Whether it’s one close friend, a support group, or someone who texts “How are you really?”, being seen and heard matters just as much as medicine. You might meet some new people along the way. Some who are transient but make a big impact on your experience. Others who become your pillars for a new normal.
8. You don’t owe anyone a silver lining.
You’re not here to make other people feel more comfortable with your pain. You don’t need to be positive all the time, or turn your experience into a lesson. You don’t have to be inspiring. Just surviving is enough.
I wrote this list not because I have all the answers, but because I remember what it felt like to not even know what questions to ask.
If you’re navigating cancer, or supporting someone who is, know this: you are not alone. The system may not be designed around you, but tools do exist. This is why I founded Manta Cares. A free, private platform designed to help you stay organized, track what matters, and feel more in control of your care with tools that actually help you manage the chaos.
To learn more visit: https://mantacares.com/pages/
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