How I Reacted to My Diagnosis

Strangely, once I finally had a name for what was happening to my body, I felt some relief. When I was in the hospital, before I knew it was cancer, I couldn’t look anything up. The fear of the unknown overwhelmed me.

But even though the word “cancer” scared me, it was better than not knowing at all. I still think those few days of not knowing were worse than the diagnosis itself.

Owning My Own Data

It shocked me how little time you actually get with a doctor. Five or ten minutes is not enough to make big decisions or understand your options. If you want to talk strategy, you have to pay extra or find time outside the system.

That’s why I decided to take control of my own medical data. I started asking for my records: CT scans, PET scans, everything. I had to buy the reports. The data for one report costs about 3,000 Japanese yen. (a little more than $20 US dollars) The hospital put the files on a CD-ROM, and I kept them. I wanted to be in charge of my care. I didn’t understand why other patients just left their information with the hospital and only asked for it when they needed something.

Your health data should be in your hands. You should decide what to do with it. I wanted to make informed choices about my treatment, and I couldn’t do that without understanding what was going on inside my body.

Stronger Patient Empowerment with ‘One Step’

Right now in Japan, most of the information available to patients comes from textbooks. But that’s not enough. It’s like learning boxing from a book and then being thrown into a match. You’d be terrified. You need practice first. Cancer treatment doesn’t give you that time to prepare. The match starts immediately. That’s why I want to provide better resources in that in-between space.

I’m taking my stage 4 lung cancer experience forward by helping other patients become empowered.

That’s why I helped start a patient group called One Step. The main vision of the group is to help create the courage to live. The group now reaches 12,000 people, mostly lung cancer patients and caregivers throughout Japan.

We try to provide useful information: details about treatment, financial support, and what’s happening in the world of cancer care. We also push for patient involvement in research. Instead of just leaving everything to doctors and scientists, we want patients to be part of the process.

We even helped propose a clinical trial, and it got approved. That showed me what’s possible when patients are involved from the start.

How I See the World Now

Motivation is a wonderful thing. I want to live my life with no regrets.

I think about that, and about my stage 4 lung cancer experience, when I wake up today, the first thing I do is to tell myself that I have only one today. I think it’s because it’s obvious to me that my life is shorter than others’ lives. So I want to do something that makes my life more satisfying.

You see scenes in dramas and on TV where people say goodbye to their families with grace, but I don’t feel that everyone gets to have that kind of ending. Some people die angry or confused, asking, “Why me?” I don’t want to live that way.

Even if my life is short, I want to be satisfied with it. I want to live. And I believe I can. That belief drives my daily life. I keep going, one step at a time. Maybe this is the answer. Maybe it isn’t. But I’m going to try.