My husband, Fred, was in treatment for two years with terminal colon cancer. But the only time anyone ever acknowledged that there was no cure for him was at his first appointment with the oncologist. From then on, the constant and cheerful refrain was “There’s always something in the cupboard.” Although I don’t wish to suggest that optimism and good cheer are out of place at a cancer centre, I have to tell you that it’s crazy-making to be in an environment where no one can speak at all about death when that’s the main thing you need help with. In a medical facility that treats 800 people a day with life-threatening illness, surely there should be some attention paid to the fate many of them are facing.
I went to the social worker on staff at the center, who was a very nice man, but the only item in his toolkit was to offer a referral to a psychiatrist for an anti-depressant. But I wasn’t depressed, I was sad. I didn’t want a pill. I wanted support, and there was none.
Of course there came a time when in fact there was nothing left in the cupboard, but a referral to a drug trial gave the team that was looking after Fred a convenient way to claim that there was, which meant that everyone could still avoid talking about the obvious. When Fred came to the cancer centre to sign the papers to begin the trial, a staff person we had never met before told him it was a nasty drug that wouldn’t help, and that he should go home and forget about it. So we left the building and every person we had been seeing regularly for two years with no goodbye, no consultation, no discharge plan, no transition, and no idea what would come next. Our team abandoned us when we needed them the most. We were pretty much on our own.
Three weeks before Fred died, our local palliative care team arrived on the scene. We were told the vast majority of deaths are peaceful, and we now had a navigator for whenever we needed anything. We never thought to ask about what a not-peaceful death might involve. We had very few questions because we had no idea what we were getting into. I thought that I could probably manage most things on my own, and if I couldn’t, this team would be there.
Fred had a pain crisis on a Saturday when the family doctor’s office was closed. He was too sick to go to the hospital, so I called our new navigator. She arranged a conference call with Telehealth. After 45 minutes of providing detailed medical history with no help for the pain, I ended the call. I had lost all faith in the navigator. Fred insisted on trying to continue with the pain regime he was on and just try to bear it. But by the next morning, I knew we had to have help so I called the hospital, where his doctor said I could call and ask for him directly. But every time I called , I got a fax machine. After an hour of repeated dialing, I got through and learned the phone system had been down. Then it turned out the family doctor had forgotten to put Fred’s name on the list of patients they could call him about. However, after listening to my story, a nurse agreed to call anyway. She called me back shortly and said the doctor was out but his wife would give him the message within an hour. I waited a few hours, but we heard nothing. So I called the number the palliative care specialist wrote on a business card for me as a backup in an emergency. I left a message and waited some more. As I reached total desperation after 24 hours with no help at all, I called the after-hours number at the cancer centre and chose not to mention that Fred was no longer a patient there. A doctor called me back in 15 minutes and we finally got the help we needed.
At 11:00 pm the family doctor called. His wife had forgotten to give him the message. Two days later I learned that the specialist had written down the wrong number. The cancer centre no longer has a 24 hour help line.
Fred said he wanted to die at home, and it would have been unimaginable for me to challenge that. At some point a hospital bed arrived. The only place to put it was in the middle of the living room, with all the other furniture shoved around the edges, now the centre of our world. For a few days, Fred could still get up. On one of them, it was softly raining outside and Fred said how much he wished he could go outside in it. There were three of us with him that day, and we looked at each other and said well why not? So we helped him run around the house in his pajamas, barefoot in the grass, utterly gleeful.
One day he wanted to put his head in my lap, so I climbed onto the bed and we arranged ourselves in a way that he could do that. Why hadn’t we thought of that every day for the last two years? After he had gotten a port implanted in his chest, there was no more cuddling because it would have been dangerous and uncomfortable for him to have my head there. And then his insomnia had gotten so bad he had to sleep (or try to anyway) in another room. It had been this gradual series of losses, each one unthinkable. But now we were at The Big One. This man, my companion for forty-three years, who knew every thought and feeling I had had during all that time, my beloved, was leaving me.
I always expected that I could see Fred to his death by myself. It would be my last gift to him, to cherish and love him into whatever is beyond this without any interference. But it began to get clear to me that I couldn’t do it. I asked his sister, visiting from far away, if she could stay on, and mercifully she did. I was desperate for help.
In that last week a nurse checked in once a day, and three times a personal care worker came to bathe and shave Fred. We were told that we could have someone stay overnight five times. We had to pick which times. On what basis? We never knew. So we simply began on a Monday, at the point when we were too short on sleep to cope. The nurse who came said she wasn’t afraid of death, she had seen a lot of it. I was to try to sleep and she would call me if something happened.
Friday night was the nurse’s last. We wondered what we would do when there was no more support. At 2:30 am the nurse woke us, saying she thought the end was near. Fred was making a horrible sound. Every single exhalation was a moan. An unearthly identical moan. A sound none of us had ever heard before. The nurse had no idea what it was or what we could do. The minutes ticked by, but nothing changed. We couldn’t tell if he was in agony or not. It was hard to breathe listening to him. Hard to fathom that we were waiting for him to die. Excruciating in every way. But every breath was like the last, and they kept on. Ten minutes. Half an hour. An hour. Another hour. And another. Another. At 7:00 am the nurse’s shift was over and she went home. It was inconceivable that this could continue, but it did. The only thing changing was our ability to cope. Was this a peaceful death? No. Was it what we had anticipated? No.
Soon after that I noticed that Fred’s teeth looked a little brown. I wondered how that could be, but felt guilty that I hadn’t thought to brush them. Then they got a little browner and I wondered more. Then there was a slight foam there. I got a piece of tissue and wiped it off. Then there was more brown foam, and more, and we took turns wiping away what we began to realize was blood, awful foamy brown blood. Was that causing the moan? Was he drowning? My daughter said that this now topped the list of things she hoped never to see again in her life. We used towel after towel, rinsing them out over and over.
I had reached my limit. Actually I was well past my limit. When he died later that morning, my daughter says I cried and cast myself at his feet. I don’t remember. The unthinkable thing had happened. My brain really couldn’t digest this in a normal way, and I wonder if that left a physical scar, a traumatic brain injury from which I can never fully recover.
A year after Fred died, our son Ted told me he needed to see the doctor; his right testicle was the size of his fist. He had noticed that it was beginning to swell around the time of his dad’s death, but he didn’t want to worry anyone so he didn’t mention it. The medical world moved swiftly and within a week he had surgery. Ted had a dozen metastases. He needed chemo. I nearly vomited going through the doors of the cancer centre.
When Ted was getting his chemo, there was a man in a nearby treatment chair who was in the same situation Fred had been in the year before. We had spoken in the waiting room. He was in the last stages of colon cancer and knew he didn’t have much time left. When his wife went out for coffee, he beckoned me to come over to him, so I did and asked what I could do for him. He looked at me with fear in his eyes and said, “Could you tell me what it’s like at the end?” I was so taken aback and horrified that I couldn’t speak, but I had to find something to say to this frightened man who had no one to ask but me. There is still no one in that cancer centre to whom one can take questions about death. I told him my understanding was that all deaths are different, that he deserved a good answer to his good question, and that perhaps it would be best if he contacted the palliative care team in his area. And hoped there was one. Then I ran out of the chemo suite to the cancer support office, where they had a storeroom I could sit in for the next hour crying, crying, crying. For him, for Fred, for me, for all of us.
When they think they can cure you, they give you as much chemo as your body can tolerate without killing you. But that means dreadful side effects, and Ted got them all. He had four rounds of it, each a month long. And it was brutal. Then we had a month of waiting before a scan to see whether the mets had disappeared. They hadn’t.
He had tumors between his kidney and spine, between his trachea and aorta, and in his neck. His oncologist didn’t want to put Ted through the agony of the surgeries to remove these, and chose to stall, saying we would wait to see if they grew. But when Ted was finally referred to a highly specialized surgeon, it transpired that the oncologist was not up to date with current practice, so the tumors had grown, making the surgery even more difficult. The surgeon was furious.
The first surgery had a terrifying list of possible consequences. But it was successful. The second surgery involved entering Ted’s chest through his back ribs. The surgeon said that afterward Ted would discover new words for pain. Ultimately I never heard those words, just screams. I lost count of the number of tubes going in and out of his body. The recovery was slow and painful.
Over the three years Ted was in treatment there were all the inevitable setbacks. There never seemed to be a time when we could really take a break.
Then we got the news that there was still something in his chest: maybe leftover surgical cement; maybe a tumor that had been missed; or a new one; or two. Different radiologists had different opinions. Ted’s surgeon was very reluctant to operate again. So we were in limbo, a familiar place.
One morning I knocked on his door and got no answer. I opened the door and saw him slumped over at his computer. I tried to wake him up and nothing happened at all. I called 911. An ambulance came. A paramedic said they would continue CPR and take Ted to the hospital. “But he’s dead, isn’t he?” I said. The woman nodded. I told them to leave him where he was.
When the men came to take his body to the morgue, there were only two of them. The sound of them struggling to get his body down the stairs remains for me the creepy soundtrack of a horror film. They left him in a dark blue body bag on the dining room floor while they got a gurney. I unzipped the bag and kissed my son goodbye.
For a long time, I told an abridged version in the hopes that it would improve a future patient’s experience. But eventually I realized that to make it socially acceptable, I had edited out the very things that were the hardest to bear. And I did that because I was ashamed. Really, where death is concerned, we are all ashamed. Because we truly cannot make emotional sense out of death, we seem fated to see ourselves as somehow responsible, or defective, or deserving of our fate. Patients are ashamed because they are dying. Doctors are ashamed because they feel they have failed. Mourners are ashamed because their grief is too sad. Friends are ashamed because they don’t know what to say. And what do we do when we are ashamed? We hide. We cover our faces and hope nobody sees us. We are even ashamed of our shame. And that keeps us stuck and alone. Shame cuts us off from each other. In this crucial time we lose our most important connections. And if, during the approach to death, naming it is taboo; when it happens, no one is there; and when it’s over you’re too ashamed to speak, the burden is crushing.
One of the few things that helps us in this lonely place is to be able to talk about it. I realized I had to find someplace to just tell the whole story of what happened. So I did. And it helped. Death is a big deal, loss of connection is a big deal. And perhaps because of this collective shame, that is what gets left out of the discussion. We pay lots of attention to the system, but we miss the enormity of the experience. We need to face the bewilderment of death together: to name it, to look at it, to share the burden of not being able to fix it, to support one another in our loss and fear, and to comfort one another in the time-honored way of helping with the daily work of living. We really are in this together. We all need each other, we need not to be ashamed of that, and we need to find ways to deepen our human connections.