On seeking joy following a rare cancer diagnosis

Jules's story was included in Canada’s Rare Voices 2023.

_“Cholangiocarcinoma. I’d never heard that word before. 

It’s an extremely rare cancer of the bile duct, and by the first time I heard the word, it had already spread to several different places in my body. There’s no good cancer, but this is a particularly bad one. But I’m a natural optimist. The bits of joy and hope in life always seem to outweigh the negativity for me, even now. 

In October of 2021, I was happy and healthy, with a young son and no reason to suspect that anything serious was wrong. But I could tell that something felt a little off, so I went to my doctor for a general check-up. He recommended some routine blood work for peace of mind. Within two weeks, I found out I had stage four cancer and was being scheduled for radiation and chemo.

I can so easily see how a diagnosis like this could break someone. It sucks, and there’s really no silver lining. It’s not here to make me stronger. But it’s okay to accept that it sucks and then move on to the next good thing. I won’t let it hold me back from experiencing happiness.

Part of my optimistic mindset is definitely cultivated. I used to work in HR, specializing in company culture as a sort of “happiness officer,” helping people have better workplace experiences. So I’ve thought a lot about how the choices we make can build our emotional experience. I’m careful about the stories I read and about how much googling I do, for example. It’s pretty wild how much of a mental game having cancer can be. It sometimes feels like it’s 50/50 between managing your physical health and managing your mental health.

It’s part of the reason I don’t talk too much about my specific type of cancer, especially on social media. I just say ‘cancer’ because I don’t want people googling it and seeing how rare and scary cholangiocarcinoma is. How bad the statistics can be. Statistics aren’t going to help me understand how to live with this. I’ve just got my one life, and I don’t need to be putting it in the context of other people who are healthier or sicker than me. 

"It’s pretty wild how much of a mental game having cancer can be. It sometimes feels like it’s 50/50 between managing your physical health and managing your mental health."

The other thing that’s so important to remember is that life doesn’t stop when you get cancer. You just need to prioritize things a little differently than you did before. And good things still happen all the time. I make them happen. I’ve always been a planner and now, more than ever, I’m all about scheduling things that will make me and my family happy. So it’s like, yeah, today I’m sitting in the chemo chair and that sucks, but tomorrow I’m making a gingerbread house with my son, Otis, or going for a walk in the park with an old friend.

I don’t want to make it seem like keeping your head up through something like this should be easy for everyone, though. I’ve always been the most positive person I know, and I was fortunate to be in a good place when I was diagnosed, with a loving partner like Pete and a good support network. And, even so, this has still been very hard. I can only imagine how difficult it would be without those things, or if one were already struggling from another illness or mental health challenge. But it doesn’t have to be easy. It’s okay if it takes work. Let’s do that work together.

Thankfully it’s an exciting time for our community. Treatments are being developed, understanding of cholangiocarcinoma is deepening, and patient outcomes are improving. This isn’t the future that I’d once imagined, but it’s still so incredibly bright."

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This initiative was supported by Incyte Biosciences Canada. This page and the editorial themes covered were developed by Patient Voice.