You are sent home with a broken body

On the first of December 2021 I lay in a scanner for a whole day. The result was positive. Nobody called me. Ten months later I woke up with ten centimetres of tumour coming out of my neck.

One of these words was read to me as an answer when it was only a question, and I paid for that with two years and a hand.

I have one in my neck right now. In April it was smaller. It is two and a half centimetres today and I can feel it when I swallow.

Four years ago tonight I was on the floor of my own hallway with a fever of forty two and the emergency number already dialled on my phone. I made God a promise before I passed out. This is what happened next.

On Monday you made a list. This is mine, and it is the part where I stop being gentle.

The list people want from me is the wrong list. The one that matters is free, it works no matter what your body looks like, and nobody sells it because there is no product in it.

I posted the good news this morning. This is the rest of the day, and I am writing it for anybody who is ill and has been told they are fine by somebody who did not look.

Everybody assumes the cost of being dismissed is the delay. The delay is only the part you can see. The real cost is what it teaches you, and almost nobody writes that part down.

People think the frightening part of cancer is the treatment. In sixteen years the only day I was truly afraid was the day I found out. Everything after that was something else, and nobody has a word for it.

I am writing this from inside it. Seven years on a medicine that was written down in 1988 as a two to four week treatment, and the anxiety I kept reporting all that time was being produced by the thing I was given for it.

I helped build the compliance for the law that would one day open my own medical file, and for eight years it never occurred to me that it applied to me. When I finally used Article 15, what came back explained the worst year of my life.

Sixteen years, and every single time I was sent home without being told what had just been done to me. It cost me the use of my dominant hand, and the sentence that explained everything was sitting in my own file while nobody read it to me.