Grief In The Shadows

I had a sad phone call with the wife of one of my patients last week. Her husband died in a neighboring hospital a few days earlier. She called me with questions. I hope my answers gave her solace. Here is the story from my point of view.

I met her husband less than a year ago in late spring 2022. He came to see me for his newly diagnosed metastatic colon cancer. He began feeling unwell a few months earlier, just after Christmas. His main symptom at the time was pain in his upper abdomen after eating. He didn’t think much of it at first. His pain gradually worsened over the next two months. Then, he became extraordinarily tired. These symptoms prompted a visit to his family doctor. An ultrasound was ordered and done. The ultrasound showed multiple liver lesions. A biopsy of one of the liver lesions was consistent with the spread of a colon cancer. A colonoscopy shortly thereafter confirmed this diagnosis.

This man’s cancer was very advanced. The human body is truly amazing with the amount of trauma it can take before it eventually shuts down. In his case, a CT showed his entire liver was basically consumed by cancer; there was very little normal liver seen. But he was young, otherwise healthy, and his liver function was somewhat preserved, allowing us to consider palliative chemotherapy.

Our discussion was frank. I explained to him and his wife his liver would shut down at some point soon if we did nothing. He had to decide if he wanted to try chemotherapy to see if it could rescue his liver for a short amount of time or if he wanted to forego treatment and be palliated with pain and symptom management only. His best-case scenario was living another two years; his worst-case scenario was living a few months. Chemotherapy might buy him some time, but he would still die at a young age from his cancer. He was only fifty.

He opted for chemotherapy. Treatment started in August 2022. He managed to get twelve cycles of chemotherapy in over the next six months. On his last visit to my clinic in late March 2023, he was looking rough. Despite his blood work being mostly normal, he reported a big drop in his energy. He was now spending more than half of his waking hours in bed resting. We decided to hold further treatment until his pre-planned CT which was scheduled for the following week.

Though he showed up for his CT, he missed his next appointment with me a few days later. That’s when we were supposed to review his CT results together. He didn’t show up to talk with me as he ended up in hospital with confusion. He was in liver failure. It was only a few days later that I received notification of his death.

His understandably distraught wife called me about a week after he died with a flurry of queries. We only spoke for five minutes but our conversation had a big impact on me. She had many questions: “Could I (meaning her) have done anything differently? Why did I listen to him when he told me he didn’t want to go to the emergency room? If I would have taken him into the hospital sooner, would he still be here? What did I do wrong? I should have done more – what could I have done? He asked me in the emergency room if he was close. I didn’t know what to tell him. Should I have told him yes? I didn’t tell him yes. Wasn’t this really fast? It was too fast, right? How did this happen so fast? Why him? Why now?”

I could hear pain in her voice. I could hear guilt. I could hear love. Her pain and guilt and love had nowhere to go. Her feelings were stuck in grief.

I expressed my condolences. I listened to her questions. I acknowledged her uncertainties.

I didn’t know what to tell her. I didn’t have great answers to her questions. I tried to reassure her there was nothing she could have, or should have, done differently. Cancer can have a life of its own. Often, despite our best efforts, it is cancer that decides when it will deliver its death blows. Sometimes chemo works; sometimes it doesn’t. I don’t know ahead of time which cancers will respond and which won’t. I also don’t ever know when a cancer is going to decide to grow at lightning speed or when just a little bit of growth will push a liver into failure. As is often the case with cancer, there are no answers to all the “why” questions. We just don’t know. Not knowing is hard. There is no fairness in not knowing.

I am curious about how spouses, partners, and other caregivers live in the shadows of cancer. Some appear to do it well. Some do not know how to cope. These people aren’t the ones inflicted with the disease . . . except they are. They aren’t the ones who go through the treatments . . . except they do. They are the ones who die of this disease . . . and yet it can eviscerate them. It takes a strong person to watch, and to help, someone they love slip away. I like to think the strength it requires is generated by love but I’m not sure that is always the driving force.

I know this wife will be stuck in grief for a while. A while is quite possibly the rest of her life. She will carry the cancer experience she just went through one way or another. I hope for her sake she carries her grief well enough to keep putting one foot in front of the other, finding joy in her memories instead of sadness.

Author Notes:

I have seen many different types of caregivers over the years who are forced to become the person who walks their special someone to death’s door. Some are spouses, some are not. I’ve seen various family members (kids, siblings, cousins, and parents) take on this role. I’ve also seen friends step up – neighborhood friends, religious community friends, a very best friend who might give a more selfless type of love than a spouse ever could. No matter the relationship, the caregiver carries a heavy burden as they watch life slip away from their person.

It is interesting to me to be a third wheel in the room observing how each partnership seems to work, or not work in some cases. Body language, the presence or absence of touch, the comments made, or questions asked, with certain intonation or expectation, all mean something to an observer who is paying any sort of attention. It isn’t uncommon to witness withdrawal or anger or resentment – in either the patient or the caregiver. Being kind is undoubtedly a stretch sometimes depending on how well each individual is coping physically, mentally, and emotionally. I can’t say for sure if my observations have determined if it is more challenging to watch someone die who one is deeply in love with or to do the best job one can with someone who one simply tolerates because of a longstanding tie to them through blood or marriage.

I recently heard of a couple who split up after one of them received a terminal cancer diagnosis. I wonder how often this happens. My initial reaction was incredulity. Why on earth would you split from your partner in such a time of need. But upon learning more, I found out it was the person who received the cancer diagnosis that left, not wanting to spend their few remaining days with someone they didn’t love anymore. This made me think of who I would want, and wouldn’t want, around me when my turn comes. It also made me wonder how I would experience being the partner of a person who is dying from cancer. I’m sure my feelings would depend on the depth and quality of the relationship we shared. I would guess there would be a lot of love and heartache. If I’m being honest, I would probably feel resentment too. I might even be relieved when it is all over, as the stress of not knowing how much more time there might be drops from my worry list. There must be relief in the ending.

Sometimes my job allows me to share the grief of loved ones for a few moments in time. It almost always reminds me to keep the ones I love close.

I am curious to know, reader, who will be sitting next to you if you get a devastating diagnosis? How will you walk to the end of the road together?