Real Awareness Means Understanding What Cancer Patients Experience

We’re right in the middle of Lymphoma Awareness Month. I’ve always had kind of a funny relationship with it. It seems silly to remind me to be aware of something that is such a part of who I am. And as a follicular lymphoma advocate who reads and writes about the disease every single day, I’m about as aware of lymphoma as a human being possibly could be.

I suppose awareness months, in general, are meant for people who don’t live with the disease. Making people more aware of the cancer might help them recognize its symptoms sooner. Early detection almost always leads to a better chance of survival. That’s why we see things like the “Know Your Nodes” quiz during this month.

Awareness might also encourage some people to push for changes in laws that affect cancer patients or for more money for cancer research. Those of us with lymphoma or other cancers welcome the help of anyone who wants to advocate for this kind of change.

Unfortunately, during an awareness month, the actual people who have the disease can get lost in the flutter of colored ribbons. So, as much as I don’t want anyone to else to get lymphoma, and as much as I’d love more research funding for cancer, there are other things I want non-patients to know during this month. Be aware of these things, and you might better understand cancer patients.

Be aware of the physical cost that comes with cancer. Some of us have a successful first treatment. Some have success the second or third time. When someone is in “remission,” the cancer might be all gone, but the ghosts of the cancer remain. Bodies change because of the cancer itself. They change because of the side effects of treatment. They change because of the side effects of the medicines that treat the side effects of the treatment. A body that has been declared “cancer free” hasn’t been declared “all better.” Understand that cancer brings physical changes.

Be aware of the emotional toll that comes with cancer. Even when someone seems fine physically, there’s a good chance they aren’t fine mentally or emotionally. A cancer patient who is in remission still has the fear of a return in the back of their head. It’s always there. Every bump, every sweaty night, every rash brings back that fear. My own cancer, follicular lymphoma, comes with its own weird emotional toll. It’s a slow-growing cancer, so some patients (including me) don’t need treatment right away. There’s a heavy guilt that comes with that, as we watch other patients struggle with treatment. Understand that lymphoma is as much an emotional disease as a physical one.

Be aware of the financial side effects of cancer. The greatest treatments aren’t always affordable. Our insurance or our own pocketbooks might dictate how we can and cannot be treated. Sadly, some people go without treatment, not because they think an alternative will cure them, but because they can’t afford the conventional treatment that might. Experts refer to this as “financial toxicity.” Just as cancer treatments bring physical side effects, they also bring monetary side effects. Understand that lives are lost, shortened, or made less fulfilling by the financial costs of cancer.

If you’re a patient or a survivor, you already know these things. You’ve probably lived them. If you want to increase awareness, let others know what real awareness means. If you’re a nonpatient and truly want to be aware, understand that awareness isn’t dictated by a calendar — it’s a daily thing. If you know someone with lymphoma, pay attention. See what they need, and give it to them if you can.

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Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.