The diagnosis: It was like a jigsaw puzzle
It all began on a Friday evening in January 2001. John’s wife had an epileptic seizure. The local hospital kept her in for observation. The next day, a neurologist broke the news of a brain tumor. It was a huge shock.
“It’s a devastating thing to hear. Even if all the symptoms make sense” says John.
A neurosurgeon friend helped the couple get an appointment at a university hospital. The operation was scheduled for two weeks later. It was a period of limbo, in which they talked about the essentials: the future, their children, the funeral.
“It’s a devastating thing to hear. Even if all the symptoms make sense” says John.
After the operation: A different person
“We hadn’t been warned that such personality changes could occur” John recalls.
Diagnosis confirmed. Surgery removed 75% of the tumor, but the rest was inoperable. No other treatment would be attempted, except for medication to combat possible epileptic seizures. But it was the aftermath of the operation that turned everything upside down. His wife was no longer the same person.
He lost the person with whom, just a few days earlier, he had been having deep conversations. This mourning became a major source of suffering, one that he shares in the support groups he has been attending ever since.
“How can you live with someone who is no longer quite herself?”
The fallout was huge. John stopped working to take care of his wife and their three daughters. His employer was understanding, but only for a while. John must insist that his family comes before work. The children had to resume their daily lives pretty quickly. Then came the anxiety. Every headache became a source of panic. Each of them had to undergo an MRI, for fear of possible heredity.
Medical and social isolation
John describes a serious lack of information about the human and emotional consequences of the disease. “They told us about the medical aspects, but never about what would happen afterwards”, he remarked with surprise. He also describes how difficult it was for those around him to believe him. His wife seemed “normal” to their friends. He felt that people dismissed his impressions or minimized the impact of the disease.
Twenty years on, John notes some positive developments, particularly in terms of access to information on the Internet. But families are often left to fend for themselves, especially when they’re not in major hospital centers. And the harsh reality of having no medical choice remains.
“If we hadn’t done anything, she would have died in two to four weeks. That’s not a real choice.”
Patient voices: Living with glioma
Through a collection of personal testimonials, Servier wishes to shine a light on people living with brain tumors, particularly glioma, a rare form of brain cancer.
In this publication, Marcus, Rebecca, Dirk, John, Nick and Ashley tell their stories, share their journeys and describe their fight against disease. Beyond the stories it tells, “Patient voices: Living with glioma” illustrates the Group’s desire to always place patients at the heart of oncology research and development.
