Audrey’s husband Matthew worked hard and traveled a lot for business, but was always considered a healthy man. Then he started having unexplained seizures at age 59. Glioblastoma took his life two years later.
We had been living in London at the time and Matthew had just gotten home from a trip. He sat down for dinner but said he was feeling full before he had even eaten a bite, which was unusual. I started putting the food away, and then turned back and realized he was having a seizure. I held him so he wouldn’t hurt himself, dialed 999, and waited for the ambulance to come. His seizure lasted ten minutes. By the time the ambulance came, it was over and he didn’t want to go to the hospital. He started to object, then had a second seizure in the ambulance, and then a third at the hospital.
By the time they had the seizures under control, he had lost all use of his right side. We went straight to the national stroke hospital and were met by a doctor friend. By that time, Matthew was in a coma so I called our kids to come to London immediately; we thought that this was it. Our son and daughter both arrived the next morning. It was touch and go. Everyone assumed it was a stroke. They gave him anticoagulants and let me stay overnight, which is uncommon. The protocol allows for that only when death is imminent. When he came-to the next morning, they did a battery of tests. They didn’t know what it was but said it wasn’t brain cancer or a stroke.
Crossing Continents for Care
He began to stabilize and eventually I took him home. He seemed to be recovering and went back to work, but then had another seizure. He deteriorated quickly, so the doctors were scrambling to figure out what was going on. At that point I wanted to bring him to New York for care so I arranged a Medivac. I went home, got the dog, and moved to NYC, arriving three days later with two suitcases, a startled pet and a very ill husband.
At the first hospital, a neurosurgeon said it was Glioblastoma and Matthew had about seven months. That was not on my radar—the doctors in London had assured us it wasn’t brain cancer—and I nearly passed out. He had just turned 59 the month before his first seizure. It was clear we were never going to live in London again. I went back for three days and put the house on the market, but Matthew never went back.
Matthew was always so afraid of illness and death, I made the decision not to tell him right away about the cancer. From initial diagnosis to pathology report, we took time to ease into it. While he was sleeping, I was talking to doctors and trying to figure out how to beat it. The research was hard to read; no one survives. Matthew didn’t want to hear any of it. He handed the whole thing over to me—the researching and the conversations with doctors and the responsibility. It was a huge burden and I was grateful that I had the education and fortitude to be capable of dealing with it. I became research central, an expert in the disease, and knew everything about the clinical trials and drugs.
The Happiest Brain Cancer Patient
They gave him immunotherapy, which had some side effects and made him very anxious. He had more seizures and developed something called Stevens-Johnson syndrome from the seizure medication. I watched him nonstop. I didn’t sleep, couldn’t let my guard down in front of him. And while he slept, I’d Google—I never had time off. In the middle of all this, I was also planning my daughter’s wedding, in the hope that he would still be alive for it.
Several months into treatment, he caught pneumonia and was very sick. We hired a fulltime nurse then and she was a godsend. I’m so grateful we had the money for that. It allowed me to catch a little sleep while she took over. Taking some time for myself was important. I laughed with Matthew, “if the roles were reversed, you’d be working, and I’d be dead.” But he was very appreciative and aware of what I was doing. He could have died that night in London. We are all going to die, but until we are in it, we don’t realize it.
I know he had fears, but he pushed them back and never discussed death. He couldn’t do it, which made it more difficult for me, and I couldn’t ask. They had given him seven months, which isn’t long enough when you are so young. He had quit his job before we moved, but he kept his mental faculties almost to the very end and kept busy writing his memoirs, even developed an interest in shopping. At one point, when he was up to it, we made a trip to Florida to our primary family home, which he was so happy to see again. The doctors said he was the happiest brain tumor patient they ever saw.
As his health got worse, I was so thankful that over the course of a year Matthew had developed such a trusting relationship with the nurse. She arrived at 6:30 in the morning and bathed him, took him out walking, and brought him to the gym a few times a week. She gave him his dignity and allowed me to be his wife. It was a tag-team effort.
While his cancer was proceeding, I set up life in New York. My daughter and son-in-law and son all helped, and I had wonderful, supportive girlfriends reaching out every day from London. I couldn’t have gotten through it without my children and friends. But, we were very isolated here. And I knew he wasn’t going to be around for long, so I didn’t want to leave him.
At one point I saw a doctor for an aural migraine who introduced me to a therapist. It really helped to have a therapist to talk to; she was instrumental in getting me through it. I could cry in her office. There were times when I would just go there and collapse, when Matthew was in the hospital or had a seizure. It was just horrible, a hellhole, but I never lost it in front of him. I did my best, to the fullest, which is all you can ask. I regret not knowing he was going to die so young. He survived almost two years, but I didn’t expect to be a widow at age 60.
Death is So Final
I was self-aware enough to realize that I could escape and go walk the dog, but I couldn’t do everything myself. I made friends on the Internet with the wife of another glioblastoma patient. She was someone I could talk to and share info and bad news with while Matthew was alive. Her husband died two months after Matthew.
The key to coping now is being flexible and self-reliant. It’s like he’s on a business trip, but death is so final. I know I did the best I could, but I couldn’t get him back. So now, I know I am going to be alone. Everyone just wants you to be happy, so I find ways to be happy. I have a lot of girlfriends and travel and over-schedule things. I attended a Ted Talk on grief and learned about getting “dopamine hits.” So I get dopamine hits by surrounding myself with smart, interesting women who can help get me through this. It’s so crucial to have female friends and close relationships with family.
Two years later, I’ve learned that as time moves on, you’re still alive, even if your husband isn’t. I have a beautiful new granddaughter, I’ve started dating, and life is beginning to feel full again. I’m never going to replace what I had with Matthew, but I’m still living, and I know he would want me to be happy. I’m doing my best to find happiness.