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Terminal Cancer, Day by Day

Watching My Life Partner Die

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Nurse Bonnie’s theory is that the infection Brock battled last week in the hospital drained the last of his batteries.

We came home from the hospital Thursday, then spent a wonderful Friday together. For dinner, Brock craved and got a McDonald’s Big Mac (I don’t judge; I enable). This was the last thing he ate.

Saturday was a lazy day, with Brock sleeping and me writing/reading beside him in our bed.

At 11pm I tried to give Brock his last antibiotic pill of the day. He sat up, still mostly asleep, and his mouth couldn’t remember how to drink from a straw.

Or maybe he just didn’t have the energy to suck from a straw anymore.

Brock’s parents and brother came over and for the next four days we made Brock as comfortable as we could while his body gradually stopped working.

Unexpected Thing #1: the full house

I thought I would want to be alone with Brock at the end, although of course I would (reluctantly) share him with his parents and brother’s family.

But that is not at all how I felt this week.

After Brock’s parents and brother were here, I invited his best friends to come say goodbye (and just sit in the living room) Sunday. On Monday I invited more family, and then more friends.

Because so many of us shared the work of adjusting Brock’s position in bed and moistening his mouth and changing his sweaty pillowcases and wiping his forehead with a cool cloth, I was able to just lie beside him and hold his hand.

Family made huge meals, washed laundry, swept floors, and even cleaned our bathtub.

Brock was never alone — and sometimes his room was too full to fit anyone else. It was wonderful.

In addition to sharing the work, I felt like everyone was sharing the grief.

Unexpected Thing #2: the parallels

I’ve read a lot about dying and grief over the past few years, and often read that the birthing and dying processes are similar.

But holy cow, there were so many moments where Brock’s dying room could have been a birthing room.

At one point, Brock’s dad was timing Brock’s breaths just like a man times his wife’s contractions.

My job was to tell Brock whatever he needed to hear, and hold his hand.

Unexpected Thing #3: the final exam

I’d inadvertently been studying for Brock’s death for months. All of a sudden he wasn’t able to speak or even communicate with his body, and it was up to us to decide what he needed.

I knew exactly how to give Brock a back massage that wouldn’t hurt his tumour-y areas.

I knew his favourite sleeping positions, to alleviate his cancer-caused back pain and bony body.

I knew that he hated having his feet touched.

I knew he didn’t want to be in pain, but he also didn’t want to be sedated, so we avoided giving too much pain medication.

I already had a Brock playlist on Spotify, so we could listen to all his favourite songs. We sang aloud to Mr. Jones (his favourite song) and I think he smiled.

I knew his favourite movie was The Two Towers from the Lord of the Rings trilogy, so we watched that with a room full of family and I fast-forwarded over the Ent scenes because they bore Brock.

And most importantly: I knew what he needed to hear, or at least I hope I guessed correctly. For four days I had to rely on Brock’s eyes and rare grunts to guess how he was feeling. I figured Brock was confused about what was happening to him, so I explained over and over again that this was not another infection, this was the end of his life. Our job was to keep him comfortable and pain-free, and his job was to let go whenever he was ready.

I promised him that I would read the financial management book he’d given me, and that I would do my best to control my spontaneous tendencies and ask trusted friends and family for their input in my big life decisions. I promised I would stick to our annual Lego budget.

No regrets

I’m so happy we went to the hospital last week to deal with Brock’s infection, even though it was hard on him. It would have been much worse for him to die feeling flu-sick. Instead, he was just very very tired.

I’m grateful we had all the conversations we needed to, while we still could. I never held back. I asked him all the hard questions and we talked about everything, from how to raise Isaac to the memorial scholarship/bursary we planned to start.

On Friday, which turned out to be his last aware day, I told him I didn’t want him to die and that I couldn’t give him permission to die. (These are the sorts of morbid conversations we’ve had regularly since he was diagnosed!) And then I thought about it a bit more, and retracted my statement. I said that I didn’t want him to suffer and so when he was ready to go, I would let him go.

Aftermath

I was very sad immediately after Brock went, especially when I had to tell Isaac his dad had died.

But by Thursday I was blank. I think I’m still in shock, even though we knew he was dying. Two analogies to describe this feeling:

  1. I feel like I’ve just ridden a rollercoaster. The ride just ended and the rollercoaster has pulled up to the loading platform. The brakes stop us. I’m not ready to stand up yet — I want to talk about the ride, to reflect on that highest peak and the sudden drop. And I have no idea what to do after I stand up.
  2. I feel like an iPhone that’s just been factory reset. A blank canvas. No personalized apps or custom wallpaper.

I can’t even read the grief book I bought in advance, because it’s describing a kind of gut-wrenching grief that I’m not feeling. I’m just empty.

To help work through this numbness, I’m trying to downplay my final memories of Brock, physically destroyed by cancer, and bring back my memories of how he was for most of our 11.5 years together. That huge smile and his sexy ass. His quiet brilliance. His enthusiasm for new projects and the first strawberry of the season.

I loved him so much.

Brock in 2006, on our first roadtrip together.
Terminal Cancer, Day by Day

Early Exits

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On Monday, Brock was so unusually sick that I texted his doctor to describe the symptoms. Brock had slept for over 24 hours, he was so out of it that he could barely speak when he became conscious, and he’d managed to tell me that he felt flu-sick, which wasn’t his normal cancer-sick. Also, there was a hard, angry-red lump on his chest that was getting redder and angrier.

Brock’s amazing family doctor arrived within the hour and diagnosed Brock as having an infection. It was quite bad, and might be septic.

Brock sweated in our bed while his doctor explained the options to me, my dad and Brock’s brother in the living room.

We could:

  • take Brock by ambulance to the hospital so Brock could be given antibiotics by IV (which might not cure him);
  • stay at home and try to treat him with less-effective oral antibiotics; or,
  • we could nothing.  Brock would die from the infection, at home.

Fear not, you normal, healthy people: these would not be your options if you had an infection. You would be whisked off to hospital without the couch consultation.

Brock’s situation is unique because he is already dying. And when you know that a cancer death is looming, our health care system allows you the option to take an “early exit” (as Maggie Callanan calls it in Final Journeys), if you would prefer not to linger.

But knowing this, reading about early exits, and discussing advance care options and Do Not Resuscitate orders with Brock did NOT prepare me for the emotional tsunami of being in this situation.

Obviously I don’t want Brock to die. I want him to live for as long as possible. But I also don’t want him to suffer, and being in a hospital has many downsides for someone as weak as he is. Would they let me stay with him? Would he be comfortable, away from his collection of pillows and Lazy Boy recliner and memory foam bed? Would Isaac miss us too much, and would I be able to be with Brock at the hospital while also giving Isaac the attention he needs at home?

If I chose to keep Brock at home with oral antibiotics, would his family and friends judge me for that decision? Would I have regrets and blame myself if he died?

Luckily (oh so luckily!!) Brock and I had already discussed all of this. He’d made his wishes clear: as long as treatment meant he’d continue to have quality of life at home afterwards, he wanted that treatment. He didn’t want to spend the rest of his life in a hospital, but this infection didn’t carry that risk. He’d be treated, and then (if the antibiotics worked) he’d be back home with us, back to the Brock he’d been 24 hours before. If the antibiotics didn’t work, he would die in the hospital.

I didn’t have to consider all the options. I didn’t have to solicit advice from anyone. I just conveyed Brock’s wishes, and our course of action was clear.

It’s Saturday now, and I’m writing this with Brock sleeping beside me in our bed. He had four courses of IV antibiotics and we spent three nights in the hospital, me curled at the foot of his bed like a cat. He’s on oral antibiotics now, and the angry red rock of infection inside his chest has practically disappeared.

I am so grateful that he told me what to do, long before we faced that decision. I’m grateful that he endured the painful ambulance-stretcher trip to the emergency room, and restless nights in the hospital. We could have lost Brock this week. Instead, we’re spending a lazy Saturday together.

No regrets.