Why I didn’t say goodbye to my dying husband

“I didn’t say goodbye to my husband when we was dying of cancer. It sounds sad, doesn’t it? It wasn’t. It was my gift to him,” says Barb Lewis who is the host of the Sound Medicine Radio Hour.

“I’ll never regret it. My husband didn’t want to believe he was dying or maybe he just couldn’t handle the emotion that comes with ‘the talk’. Either way, there came a day when it was obvious that he was days away from dying, and yet his favourite response to any question about how he was feeling was still, “I’m great. I’m going to beat this”,” says Barb.

“I had a choice to either say goodbye anyway or just drop it. This is why I dropped it,” Barb confesses.

According to Barb, Ed had incurable optimism long before he had incurable cancer. It was the thing that got him through his father abandoning him at birth. It was the reason he became the star of his high school basketball team. It was what made him a success in this career in public relations where the worst situation with the highest stakes brought out the best in him and made him perfectly calm.

His optimism was his defining personality trait. He was a rugged, tough outdoorsman. He was also a real life ‘Pollyanna’. He married Eeyore.

Barb says, “During his two-year journey with an aggressive form of the bone marrow cancer multiple myeloma, we’d hear the same thing and have two opposite reactions. For instance Ed was diagnosed at Stage 3. There is no Stage 4 in multiple myeloma. Stage 3 is as bad as it gets. I was crushed. But he told everyone he was in ‘the early stages’, because well, three is a small number and he was going to beat the odds anyway. He told me not to worry. I worried. I studied the print out of the results of his monthly blood tests like a desperate gambler staring at the odds at a horse race betting window. He, however, would only glance at it.

“It went until he arrived at the point where he had enough of a good response to chemotherapy to get a stem cell transplant. The stem cell transplant had an 80 per cent chance that he’d live another five years. Even I got excited about those odds. Then the cancer came roaring back only four months later in the form of a tumour that triggered a temporary paralysis, ” she recounts.

Barb and Ed went to the cancer centre a lot in the last six months of his life. She says, “I’d fling the wheelchair out of the car, he’d get in, and every time we’d hit the entrance, I would look up and say to myself: ‘There are five floors full of people who are in our same situation — you’re the healthy one. Stop feeling sorry for yourself.’ If that is what you have to say to yourself, you know you are already feeling sorry for yourself. But I knew what he wanted. He wanted no doubts, no tears, just grit and determination.

“That is so very…not me. Until it was,” Barb admits.

“The day when I made the transition from helping him have a good life to helping him have a good death will likely be my most vivid memory of his story of cancer. It was Memorial Day 2014. I drove him to the emergency room. He was not lucid, he was vomiting. He was admitted,” saiys Barb, recalling the tough moment.

“It became obvious, to everyone but him that no more could be done. It was his haematologist who had to deliver the news. His doctor did it beautifully. He knew Ed well and cared about him. Ed reverted to same “I am going to beat this” mantra an hour later, but at that point he knew. When the doctor left, Ed cried. I went right to the bed and snuggled my head into his shoulder. Every couple has a familiar position that they get into, you know, the one where your bodies cuddle in and rest. The one that had ended arguments or eased fears. In that position I just lost it. I broke down. But I didn’t start talking, ” Barb said.

A day later, when Ed’s son and Barb started talking about giving each other time in the hospital room to say goodbye, they looked at each other and shrugged.

Says Barb, “We had decided a few days before that our goal, our only goal left, was to get him out of this life pain-free and knowing he was well loved. We had sat by his hospital bed. Ed didn’t even hint at wanting to say goodbye. I realised then saying goodbye would have been what I wanted, not what he wanted. Friends and family visited. Some did say goodbye. I believe every loving word he heard was healing. To him. To me. They said what I couldn’t say. I love his friends and family for that. I will always be grateful.”

Barb’s loving husband, Ed West, died on June 11, 2014.

On how Barb really felt, she says, “I know how lucky I am. I know how lucky he was. He had a good life, followed by a good death. He made me a more optimistic, resilient person. I helped someone I loved dearly leave this life with no regrets. There’s no way I would ever say goodbye to that.”

What do you think of Barb’s decision?