The other day someone asked me what it feels like living, day in day out, with a cancer. I’ve been thinking about the answer to that question since. I don’t really think I have a clear answer, because I don’t really have a clear understanding of the different feelings.
It usually feels like i’m sharing my body with the cancer, in my case myelofibrosis. We’re not on good terms, but we’re forced to live together. It’s a constant struggle, every single minute. We’re fighting inch by inch for my body. There are many days when I lose that fight, but there are others when I come out on top.
On those days, I feel I can really do anything – and I believe it. Those are the days I feel I can live a normal life. On those days I workout, I feel energized and creative. I build worlds in my mind and I live them. On those days, I win over my body. I can do many different things in one day. I get to hangout with my friends, and I still have time for my family when I get back home. When I win, I take over and I’m happy as I make plans for stuff I want to do. I’m a hero, and even though no one celebrates it, I’m happy to be that hero.
On other days I sadly lose that fight. I don’t give up easily mind you, I really put up one tough fight. But so does my myelofibrosis. On those days, I just feel tired. I’m worn out and weak. I can hardly do anything. I can hardly even talk to anyone about how I feel because, frankly, nobody wants to hear it. Either people don’t care enough to be burdened with this, or they care too much and can’t bear to be burdened with this. It is those days when I’m most scared of the future.
The toughest part of it is feeling useless. Not being able to control tomorrow. I know no one really controls tomorrow, we all don’t know what comes next. But living with cancer makes one just so much more aware of time, and the passing of time. Sometimes I’m scared of going to bed, because it feels to me like my clock is ticking – like I’m losing precious seconds, and I may not have too many of those when the dust settles.
I think of all the things I did, all the things I’ve seen, and I feel it has been a good life. I haven’t done all I wanted to do, but I’ve done more than most people do in a lifetime as well. But there’s just so much more I want to do. Above all else, there are people I want to grow old with, and that’s when the fight with myelofibrosis over my body becomes the toughest.
You want to know what it’s like to live with cancer? Think of it as a constant, ongoing, never-ending fight where we are constantly trading blows. Round after round we have a go at this. It’s tiring, it’s draining, but the winning is awesome. And the losing – well, it’s what makes winning a little better isn’t it?
But hey, don’t feel sorry for me. Just smile when you know I’ve just landed a winning blow. I think I deserve it.
Mohammed Yahia is executive editor
of Nature Research in the Middle East,
and President of the World Federation of Science Journalists.
He lives in Cairo, Egypt.