Coping with a cancer diagnosis

"Cancer" is the last word anyone wants to hear from their doctor, and it's the last word Dutch-South African expat Diane van Engelen thought she'd hear on a visit to her gastroenterologist in February 2009.

The 48-year-old mother of two knew something was seriously wrong because she'd been feeling tired for months, had lost an extreme amount of weight and was suffering from a mysterious pain in her abdomen that doctors had until that point been unable to diagnose. The news was devastating, and her fears were compounded by the prospect of fighting the disease in a country where she was unfamiliar with both the language and the healthcare system. But thankfully, after a difficult battle with non-Hodgkin's lymphoma, van Engelen is now in remission, and she's establishing a cancer support group for English speakers in Prague who are going through or have been through similar struggles.

"I felt whatever happened, I wanted to find other English-speaking people going through this in Prague," van Engelen says. "Sure, you can talk to a friend, but unless you've been through it yourself, you don't really know what it's about."

After a grueling course of chemotherapy, van Engelen's doctors told her she should have a stem cell transplant, a risky procedure, but one that would give her a much better chance of staying in remission. She says throughout the chemo and stem cell treatments, she had complete faith in her Czech doctors, despite a few language barriers and some exhaustive bureaucracy in the early stages of her care.

"I emphasize to anyone going through this, don't leave because you think they don't know what they're doing," van Engelen says. "The medical level here is extremely high. It's the day-to-day thing that makes it tricky."

Helping fellow foreign cancer patients cope with the day-to-day challenges of fighting the disease in Prague is one of the reasons she started the group, which has met on the first Monday of every month since September. Van Engelen says those who've been through cancer can help each other with practical advice from their own experiences, like when they can expect their hair to grow back after chemo or when to expect the feeling to return to their fingers, as well as how to discuss the illness with their families.

Though she didn't have a survivor's support group when she was going through her own battle, van Engelen says she felt lucky to have such supportive colleagues and to be surrounded by a great community of expat parents at the international school that her children attend.

"They took turns cooking for my husband every night while I was hospitalized so he could focus on me and the kids," van Engelen says.

Her children, though only 8 and 10 years old at the time, were also a source of strength during her illness. Van Engelen wanted to be as open as possible with everyone, including her children, about her disease, because she says people "closing up" at the sound of the word "cancer" is not helpful for anyone.

"I told the kids, 'You know I'm going to lose my hair, right?' " van Engelen says. "And then I asked my youngest, 'So what do you think I should do? Should I get a wig or wear a scarf?' She didn't answer me immediately, but later she said, 'I've given it some thought, and you should get a wig, but one that looks exactly like the hair you've got now, because long hair won't suit you,' " van Engelen recounts with a laugh.

A healthy sense of humor during her illness seems to be part of what has sustained van Engelen and her family. When she stumbles slightly trying to recall facts, she jokes about the "chemo brain" she still suffers from occasionally. Her attitude toward her ordeal is inspiring, to say the least. She says the disease was a learning experience and that the most important thing she took away from it was a better set of life priorities.

"My work-life balance was totally out of whack," she says of her demanding position at an international energy company. "What having had cancer has done for me is that it has very clearly put a focus on priorities - what's important and what's not. And if something is not important, then I don't do it."

Just as she wasn't alone in her fight against cancer, van Engelen is not alone in believing Prague needs a support group for foreign cancer patients and survivors. The group already has a handful of active members, and they've invited personal coaches, psychologists and nutritionists from the expat community to participate in the organization of the group and to give guest talks.

Van Engelen says the group is a place where members can openly discuss what they're facing.

"You can be listened to, and what you say in the room stays in the room," she says.

Though she's still getting her strength back and is not quite sure what her next step in life will be, van Engelen, along with the other members, is focused on making the English-language cancer support group a permanent fixture in Prague.

"I've been given a second chance," she says. "I want to do something that I have a passion for and that makes a difference."

Emily Thompson can be reached at
ethompson@praguepost.com