Navigating Cancer Together Through Advocacy and Support

Paul McKenzie, a liver cancer survivor, and his wife, Emma, joined CURE to discuss the realities of life during and after cancer treatment.

With firsthand experience from multiple major surgeries, including a hepatectomy, Paul’s journey has been shaped not only by the medical challenges but also by the dynamics of caregiving and support.

In their interview, the couple emphasizes the importance of self advocacy and open communication.

CURE: You have given us some great perspectives. It makes total sense, worrying about the other person and not wanting to say anything creates a big cycle.

Emma: It just builds up and churns away inside. That’s not healthy, because at some point you’re like a volcano and it all comes tumbling out. Sometimes that is what's needed.

Paul: We deal with news completely differently, too. I’m a bit of a slow burner; I’m told something and it doesn’t filter through for a few days. Whereas with Emma, it hits her straight away. Her brain filters it all through to the point where she says, "God, that’s horrible," and then she starts asking questions and the gears start whirring. It took me a couple of years to completely understand what I’d gone through. I think there’s a degree of post-traumatic stress. I’ve spoken to medical people who said I haven't, but I disagree.

Emma: Well, one did agree. They said you had complex trauma. It’s not like trauma in a war zone, but they agreed that with everything you’ve been through, it’s a lot to process and come to terms with.

CURE: You are both processing this differently because you’re on different sides of it.

Emma: Also, at the time, our son was at university 200 miles away. we didn’t want him to worry, but he was worrying about us. With the liver cancer, the timing was "good" in a strange way because that was during COVID. He had to come back from university, so he was here for six months with us both.

Paul: I didn’t want him to leave university because he was loving it, but they all got sent home in the middle of December. For me, it meant that when I went through the hepatectomy, we were in pure lockdown. They delayed my operation for three months because hospitals were scared of taking anyone in. Eventually, they did it, but it meant Emma couldn’t come anywhere near the hospital. We said goodbye in the road outside, and that was the last I saw of her face-to-face for three weeks.

Emma: With Sam being here, I wasn't on my own.

Paul: It should have been ten days, but I got two infections and ended up staying for three weeks. I was on my own, and it would have destroyed me thinking Emma was on her own, too. But with Sam there, they could look after each other. They have a very close relationship; they have their own language and joint interests. It laid my mind to rest that they were together.

Interviewer: All of this happening during COVID definitely adds another level of uncertainty.

Emma: And not being able to see a doctor, everything was done remotely or by telephone.

Paul: It was a mirror situation from the previous year. When I had the Whipple, Emma was with me the whole way — scans, diagnosis, post-discussions. She stayed at the hotel across the road for two weeks so she could come in at any time. This time, it was the opposite. She wasn’t allowed in the hospital at all. It was literally "drop me off" and then she picked me up three weeks later.

Emma: We’ve probably gone way far away from the questions again!

CURE: No, you're answering all of my questions! As we near the end of our conversation, do you have any tips or lessons you’d want to share with other care partner duos navigating a similar path?

Emma: Our big thing is that you have to be your own advocate. You have to keep pushing. At least one nurse said to me that if I hadn't pushed for tests and information, Paul wouldn't be here now. It’s awful that you have to be your own medic sometimes, but things can fall through the cracks. You have to keep asking the "W" questions: who, what, where, why, when, and how. I kept loads of notes.

I’d say, "The report for this scan says this, so what are you going to do about it?" or "Where are the results of those blood tests?" I became a bit of a thorn in their side, but you have to get that information. Doctors have a lot of knowledge, but they sometimes forget that we are normal people without their education. Medical terms can be confusing.

Paul: One of the consultants got to know Emma through repeated appointments. At the end, he would say to her, "I can’t let you go until I know you’re happy and understand." We are human beings, not just bodies or a number on a file. I’ve actually said to people, "Is that really the way you would have explained this to a relative?" It makes them sit back and think.

Emma: The other bit for us is preparation. In the NHS, you often only get ten minutes with a consultant. You have to do the prep to make the most of every second. I’m amazed at how many people go to a consultation with nothing prepared.

Paul: We also process information differently during those appointments, so we would have a "debrief" driving home. Emma would say, "I heard this," and I’d say, "I didn’t hear that, but I heard this." That always worked well for us.

Emma: It helps to have a second pair of ears. For the patient, the shock hits you and you might zone out, or you’re full of anesthetics and painkillers and can’t take it in. It helps to have someone there to record it or take notes. It’s so easy to walk out and realize you forgot to ask something.

CURE: Definitely. Self-advocacy and having a second pair of ears are so important. Thank you for sharing how you tackled such a difficult whirlwind.

Emma: Can I add one more thing? As a caregiver, it is just as important to look after yourself. When people see you, they always ask, "How’s Paul? How was the operation?" People don’t always ask, "How are you?" That sounds selfish, and I hate saying it, but while the patient is the most important, you are in the background trying to keep everything going. You need your own support network.

After a couple of years, I had to tell Paul, "I’m sorry, I need to start taking care of myself. I need to go to the gym and eat better," because I had put all my energy into him and I was a mess. When the COVID vaccines started, my doctor offered me one even though I didn’t fit the criteria. They said, "You need it, because if anything happens to you, who’s going to look after Paul?" You can't pour from an empty cup.

You need to find a way to shift the balance, give yourself time, and not feel guilty about it, whether it’s walking, painting, or baking. Do something you have control over.

Paul: She's right. We had that discussion and I told her to crack on. I’m in a position now where I don’t need "care" as such, but she still makes sure I’m as 100% as can be. She’s started getting more hobbies and time with her friends, and I think that’s great.

Emma: Self-care is really important.

CURE: I’m so happy you added that. Thank you both so much.