There Are Things Nobody Warns You About

I spent a lot of time before my treatment started reading about what to expect. I felt like a thorough person. I had lists. I had a bag packed for hospital stays. I had asked my consultant the questions I had written down.

What nobody told me was about the smell of the ward that I would associate with treatment for years afterward. The particular sound of the infusion pump that would appear in my sleep sometimes. The way time operates differently inside a hospital, long and compressed at once, so that a three-hour infusion can feel like both ten minutes and an entire day.

Nobody told me that some of the hardest conversations I would have were not with my medical team but with well-meaning people outside my treatment who did not know what to say and said the wrong thing instead. People who sent me articles about alternative treatments. People who told me about someone they knew who had something similar, as though the comparison was comforting. People who went quiet when they did not know what else to do.

Nobody told me that food would taste strange for months after chemotherapy ended. That I would have opinions about this, strong opinions, that seemed disproportionate to the circumstances but were actually not.

Nobody told me how much administrative work being ill involves. The forms, the referrals, the scheduling, the insurance queries. That you are expected to manage your own case while simultaneously being unwell. That this administrative layer adds a specific kind of exhaustion on top of everything else.

I am writing this not to complain. I made it through. I am grateful for the medical care I received. But I also think there is value in naming the specific, strange, practical realities of what the experience is actually like. Because if you are in it and nobody warned you about the weird parts, you might think something is wrong with you. Nothing is wrong with you. This is just what it is actually like.

If you have been through something similar and you have your own list of things nobody warned you about, I would genuinely like to know. Because I think we need more of that conversation, not less.