What Incurable Cancer Taught Me About Living With Uncertainty

I thought I knew how my life was going to turn out. I didn’t have a life plan but I did have expansive, well-furnished daydreams that saw me from university to a happy retirement. Then in 2018 I was diagnosed with incurable cancer. My future disappeared. I’ll be lucky to see 35, let alone 65. Growing old is a privilege that I won’t have. Will my death be painful? Will it be soon? No one knows. When I tell someone about my diagnosis, they often respond that they could get hit by a bus tomorrow. I’d love to ban this expression. It’s meant as a reminder that we’re all mortal (so hey, stop worrying!) but once you’ve been told that your life is limited, you can’t forget. You’re in the middle of the road and the bus is speeding towards you. There’s no escape. 

I don’t remember what it’s like to live without uncertainty. At first I struggled to see a future beyond the end of each week. Treatment had unpredictable side effects and I couldn’t bear to make plans that I might have to cancel. I stopped buying gig tickets after I was taken into hospital suddenly and nearly missed a show that I’d been excited about for months. When I did make plans, I made them in a flurry: I’m having a good day, let’s go out for shopping and dinner and drinks! There was a rush to live life while I was still well enough. On bad days, I’d stay at home and scroll endlessly, questioning the point of it all. Why was I browsing online for new coats when I might not make it through another winter? Every emotion was extreme, and it did me no good.                   

It took a long time to stop living week to week. It sounds trite, but life goes on – and it dragged me along with it. I had to have plans for the future because my family and friends were planning their futures, and they wanted me with them. I was signed up for family holidays, weddings and godparent duties, even though I worried that looking forward might somehow tempt fate – or that my untimely death would cause huge inconvenience to those I love. One of my friends told me that she was pregnant shortly after my diagnosis and I made a silent plea that I would live to meet her baby. Earlier this year I fought back tears on the Tube as I made my way to her house for the big introduction.

My horizon has expanded a little more with each passing month. Since spring I have been a participant in a clinical trial and these daily tablets have worked miracles on my tumours. At the moment the cancer is under control but that could change at any time. I currently have MRI and CT scans every three months to monitor my health, and I live to this rhythm. Anxiety kicks in as soon as I receive the appointment letter. I cycle through all the possible scan outcomes in my head and inevitably settle on the worst-case scenario. Over the last couple of years I’ve become more accustomed to bad news than good – and at each scan I convince myself that my luck has run out. I don’t avoid these fears, but I quieten them by looking at the past: I’ve overcome so many problems that seemed impossible at first, so why do I need to worry about the future right now? I’ll see it when it gets here. As soon as I have the results – good or bad – I feel certain enough to plan the next three months of my life.  

I cope with uncertainty by allowing myself limited time to worry about things that I can’t control. Instead, I focus my energy on what I can do to make a difference. I take care of my body through diet and exercise, and I have made many lifestyle changes as part of an ongoing effort to live more sustainably. I routinely freak out about Brexit – particularly because the drugs keeping me alive right now are imported – but I’ve accepted that my fears won’t change anything. Uncertainty has given me the clarity I needed to focus on making the best of my limited life. I worry less about how I am perceived by others. Everyday mishaps – missed trains, spilled coffee, delayed appointments – don’t faze me anymore. If an exciting opportunity comes my way, I grab it with both hands. I have just been invited to speak at a conference next autumn. I didn’t expect to see 2020 and I am still not comfortable making plans for myself one year in advance. I survived this year, though, and perhaps I’ll survive another. So I said yes.