Monday, September 06, 2021

The actual starting point

It’s quite common for a chain of events to begin, but the actual starting point isn’t obvious until later. Today is one of those times in which a starting point has become clear only later, in fact, two years after the fact.

On Friday, September 6, 2019, I drove Nigel to Mairangi Bay on Auckland’s North Shore for an appointment for an abdominal ultrasound. We had to drive more than an hour for that because it was the only place he could get an appointment in less than a week.

He’d been feeling increasingly unwell for about a month, and had mostly thought—or, maybe just hoped?—that it was something ordinary. At one point he thought bread I was making from a mix was giving him indigestion. I stopped making the bread. As August wore on and became September, he decided it might be tea, which he’d been drinking all his life, that was causing problems, so he had me buy him green tea (or it could’ve been because it has purported health benefits—he never explained). Nothing helped, though.

He’d already been to the doctor, and a visit to her in at the border between August and September led to getting the scan to find out what was going on. Blood tests had shown nothing definitive, so more investigation was needed. I was really happy about going to the appointment (even though I was driving; I deliberately never drove him anywhere) because I felt we were finally going to get somewhere, that we’d be able to fix him so we could get on with life.

I remembered all that, and I’ve known its importance to the end of our story, but I’d forgotten when the scan was done until yesterday when I found the receipt in the bag Nigel carried that day (his wallet was still in there, too). The discovery firmed-up the timeline of our final chapter.

The following week, Nigel continued feeling worse and worse, and I ended up driving him to the doctor where he was given fluids intravenously. They called an ambulance because it was obvious something was very wrong—we just had no idea what. I ended up driving him to the hospital because the ambulance was stuck in traffic.

While before then they thought he might have an infection in his liver, in hospital they said they thought, based on the ultrasound, he might have cysts in his liver. We were hopeful! Then they did higher resolution scans, they were concerned it was cancer, but we were still hopeful. Then they did a biopsy and determined for certain it was cancer, and that it was late stage. We tried to remain hopeful treatment would help. It was Friday, September 13, 2019, only a week after the ultrasound.

The next day, they sent Nigel home. His brother, sister-in-law, and I helped him to the car. On the way home, we talked—and joked about—about getting me a better car so I could drive him to treatment appointments (he hated my car, even though it used to be his). We stopped at a place that sells fresh produce to get ice cream with fresh fruit because Nigel wanted some. I stayed in the car with him—I didn’t want to leave him. Nigel couldn’t eat much, but he enjoyed the cool of it, and the taste.

Back home, we helped him up the stairs, which was hard for him because he hated being unable to help himself much. We got him to our bedroom, and he got into bed. Apart from going to the toilet, he never got out of bed, and he also never left the room until the following Tuesday, September 17, when the ambulance crew took him away from our home for the last time.

In between the Saturday he came home and the Tuesday he left home, Nigel and I talked about anything and everything, as much has his strength would allow. I made a lot of mistakes in those days, including letting him always lead what we talked about. I should’ve asked more questions to give him space to talk about what he was feeling, his fears and worries, because he wouldn’t bring such things up out of fear of upsetting me. I should’ve done better, not that I could know that then. Still, over those days alone together, we wrote most of his story for his memorial, and he told me how he wanted it to go. I was able to honour his wishes in all that, and it still gives me a lot of peace knowing I was able to do that for him, that I made sure I gave him exactly what he wanted, with no deviation.

I have more regrets, of course: That I didn’t stay with him the night he went back in hospital. At the time, I was sure they’d stabilise him and send him home again. I was also utterly exhausted.

However, I spent the next two nights in his room, and he knew I was there (which was the whole point). I was determined not to leave him, even though I didn’t really understand what was happening until his final hours. Which is why I also regret not staying with him nearly every moment in those final days, but I wanted people to have their own time with him, and I wanted Nigel to have some space, including from me, and because I still didn’t understand what was happening until late on his final day. I absolutely made the wrong call.

I have those regrets at all because in those final days I was in my “crisis mode”, doing the logical, rational, necessary things, and focusing on the needs of others. But that meant I didn’t focus enough on Nigel’s needs, nor my own needs at all. It all ended on Friday, September 20, 2019 when Nigel died. It was two weeks to the very day from when we’d gone to get the scan.

On this day two years ago, I was certain we were about to turn the corner and Nigel—and our life—would soon return to normal. That turned out to be the thing I was the most wrong about of all, though I couldn’t know that then. In fact, the reason I regret all of the things I mentioned is precisely because I couldn’t imagine anything other than a return to normal: Right up to Nigel’s last hours I couldn’t grasp the enormity of what was actually happening.

So, on that day two years ago today, I was still filled with hope and optimism. We loved each other, and we’d helped each other through all sorts of health challenges, so, of course, I thought, we’d get through that one, too.

Two years ago today was the first actual, formal step on our last journey together, one that would end exactly two weeks later. We just didn’t know that at the time, and the starting point of that final journey only become clear to me two years later. Even now, it seems, this journey still has so much to teach me.

But, still. Wake me up when September ends.

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