My Liver Cancer Blog

I’m a pretty private and introverted person. If you don’t know me, this might surprise you, since here I am blogging to the world about things like having diarrhea while on a walk or wishing I could get rid of my cancer by giving it to someone I don’t like. But, not a lot of people read blogs these days, so it has still felt pretty private. And, although the people reading this blog started out as mostly very close friends, it has grown to be mostly patients and caregivers, I think, and I hope that being very candid about my bodily and emotional experiences resonates with them (you) and maybe makes them (you) laugh sometimes.

In any case, while very few people read blogs, lots of people still check FB (or at least people around my age), and so it was a really big deal for me to share the fact that I have cancer on that platform. That’s where my high school and university friends are, as well as some extended family members, and academic colleagues. I’d been thinking about sharing my situation on FB since I came back from the Cholangiocarcinoma conference in Salt Lake City. I haven’t quite pinpointed what exactly it was about that conference that was so uplifting and liberating for me, but it really was.

At first, when I came back from the conference, I was just telling more strangers. I had an interesting and heartfelt conversation with my cab driver on the way home from the Toronto airport when he asked me where I had been, and then tentatively asked, after I had told him about the conference, “So, are you a doctor?” I told him I was a patient, and he responded quite sadly, “Oh, I’m so sorry, madam.” And then I told him all about the disease, and then he shared the stories of his family members who had experienced cancer, and we talked about Canadian health care and our experiences of the Emergency Departments at different hospitals. He was from Pakistan, and shared that when one family member died of pancreatic cancer there, his family was given the pancreas and told to walk it down the road to the lab, which would examine the tissue to confirm the diagnosis. I think maybe this isn’t so unusual in some low and middle income countries, where the public hospitals provide care, but the supporting infrastructure, like pharmacies and pathology laboratories, are private entities located around the hospitals. I had a vision of a family carrying a big glass jar with a pancreas in it, marching down the road. But that is surely not what it actually looks like.

I had an even odder experience at my local bank. This bank is located in a plaza, and is always busy. I have never been there when there wasn’t a line. But I opened the door, walked in, and it was empty except for a few tellers. I almost walked right back out because I thought there was something wrong. “Is it being held up?,” I couldn’t help thinking. But, when I looked for a second or two more, I saw that the tellers looked pretty relaxed and were talking to each other. So I slowly walked in and asked where everyone was. “That’s what we were wondering,” one of them said. So I proceeded with requesting a very large bank check made out to the private infusion clinic I’ve been going to. But the teller I chose was a trainee and didn’t know how to do this, and so it required another teller to join us, and then I found myself explaining why I needed the big bank check, and then they wanted me to tell them about my cancer, and how do you spell it, and can you write that down, and what are the symptoms, and is there any screening test, and so on and so on. There were still no other customers, and so they all gathered around to listen. It was a very odd moment, but it made me very happy. Happy to be sharing my situation, happy to be raising awareness about this cancer, happy that they seemed to really care and wanted me to come back and share the upcoming scan results, happy that they all said they would pray for me, happy that I live in a big, multi-cultural city where I think interactions like this are more likely to happen. And just happy about the strangeness of it all.

So, I’d been thinking about sharing my diagnosis on FB, but didn’t know quite how to do it. And then I learned that the cancer hospital where I receive treatment was having a fund-raising walk/run in June, including short distances. And that decided me. Sharing my cancer diagnosis, while also asking for support for this event, gave me a structure and purpose for finally being more open about it.

And I’m so glad I did! Love, support, and encouragement from lots of friends poured in immediately and powerfully. Like the conference, it has felt uplifting and inspiring. It also helps, of course, that I’m feeling really well right now. I think if I was feeling shitty, I probably would not have taken this step. I suppose that’s an interesting thing to think about — that I’m comfortable sharing when I’m feeling good, but not when I’m feeling crappy. But whatever, I’ll think about that another day. Or maybe never.

Here’s the link to the fundraiser if you want to contribute. Love to you all.

https://supportthepmcf.ca/ui/Journey26/p/d511e770078a4f3f933c562e7d492667

p.s. the scan results came back, and show no change in the tumour size. I’ll admit I’m a little disappointed. I was hoping for immediate and dramatic results from the Zeno. Silly, I know, but I couldn’t help myself. But I’ve only had 3 doses, and the third was the day before the scan, so it probably hasn’t had a chance to build up in my body. And the scan showed no growth and no metastases, so right now I’m telling myself that if the Zeno was truly doing nothing, that would mean I’ve basically been going without treatment for 2 months, and so it seems likely that I would have seen growth. Anyway, that’s what I’m telling myself. We’ll see my oncologist tomorrow and see what he has to say about it.