Loss and Moving Forward: A Mesothelioma Caregiver’s Story
Ulf Nyback never imagined he and his wife would face a cancer so rare that most of her doctors had never seen it before. Annukka had symptoms for about a year, including bleeding and diarrhea that her doctors attributed to her ulcerative colitis. Living on a small island in Finland, Turku was the nearest major city and where they traveled for further testing in April 2022.
The doctors in Turku initially thought it might be lung or stomach cancer. Surgeons performed a diagnostic procedure to identify her disease. At only 51 years old, Annukka was diagnosed with mesothelioma.
The diagnosis came as a shock. There are only about 100 mesothelioma diagnoses per year in Finland, according to the Finnish Institute of Occupational Health. In the U.S., for example, there are only approximately 3,000 diagnoses each year. In their small Finnish island community, Annukka’s doctors had little experience with this malignant cancer. Based on their diagnostic assessment, her prognosis was very poor.
Ulf tells us the doctors’ message was simple and devastating: she had only months to live. He says the diagnosis turned their life together upside down and he’s still processing it all. But he wants others in a similar position to know they’re not alone.
Transitioning From Teacher to Fulltime Caregiver
He took sick leave from his job as a special education teacher the same week they received Annuka’s diagnosis. From that point on, he was with Annukka almost every day, whether she was home or in the hospital.
Ulf had a heart attack in May 2022, just weeks after receiving Annukka’s mesothelioma diagnosis, which he suspects was likely from the stress of it all. At one point, both Ulf and Annukka were simultaneously in different units of the same hospital. The couple flew in together on a helicopter.
Once home he took on being his wife’s mesothelioma caregiver. Ulf managed her medications, tracked her care, organized her paperwork and fought hard for her needs. “You just do what you have to do,” he says.
Navigating an Unfamiliar Diagnosis
Because mesothelioma is so rare, even experienced oncologists may never see a case in their careers. For Ulf and Annukka, that meant navigating care without a clear roadmap.
Ulf says home care visits were inconsistent. A formal care plan that reflected Annukka’s wishes took time to put in place. The couple did their best to stay organized, managing her medications and paperwork themselves. It wasn’t easy, but they kept pushing forward together.
Language barriers added another layer of difficulty. The hospital operated in Swedish, but Annukka spoke Finnish. Ulf found her a therapist online who could speak Finnish because local options weren’t available. But he shares, “She got tired of that.”
One Last Summer Together
Based on her diagnosis, doctors gave Annukka the choice to try chemotherapy or pursue palliative care. Without treatment, they said, Annukka might have only months. They decided to try one round of chemo. The first round was unsuccessful, but her protein levels were too low to attempt a second round.
Annukka’s mesothelioma treatment transitioned to a focus on symptom-management. Steroids helped manage her mesothelioma symptoms well enough that she could leave the hospital and have time together at home. For Ulf, that summer meant everything.
Finding His Way Through Grief
Ulf was with Annukka for the last days of her life. She passed away on September 23, 2022. He organized her funeral and sang her favorite song at the service. Then Ulf says he had to rebuild.
He shares he couldn’t return to his job working with children with special needs. It felt it was too much to carry with his grief. He found work teaching adult immigrants, which he says felt more manageable.
He couldn’t find grief support locally, so he looked beyond Finland. Ulf connected with a therapist in the United States with whom he spoke throughout Annukka’s illness and for about a year and a half after. He also joined a grief group David Kessler, a well-known grief expert, led. He’s been part of that group since January 2023.
“That’s the one that helped me,” Ulf says. He’s also been writing a book about his experience, which has become part of how Ulf processes everything he went through. He says his life looks different now than it did before, but he’s moving forward.
Ulf’s Message to Fellow Caregivers: Just Be There
Ulf’s advice for anyone caring for someone with a serious illness centers on presence. “Just be there,” he emphasizes. “Be present and make them know that you’re present and that you care about them.”
He also recommends caregivers not push the person they’re caring for to talk about death. It’s a painful subject and forcing the conversation puts the caregiver’s needs ahead of their loved one’s needs. Instead, he says, let them know you’re open. Tell them you’re ready to talk about anything if they want to. Then follow their lead.
For Ulf, being a caregiver meant setting aside his own fear and focusing on what Annukka needed. “Death is a hard question to talk about,” he reflects. “It’s like a double punishment. First you have to die and then you have to talk about it.”
He says he isn’t trying to tell people what to do. He’s sharing what got him through, one day at a time.
