Storyline: Thinking in Autumn Colours
From the horse’s mouth
Sat Oct 2 and Sun Oct 3
Since there were no medical procedures or visits from various health care professionals, Saturday was an uneventful day. The odd headache, continuation of anti-nausea meds, and once more the production of lots of phlegm that I had to spit out as it wouldn’t go down when I swallowed were the high- and low-lights of the day.
Unfortunately, Saturday night and Sunday were not good. I texted Diana in the morning: Two steps forward, one step back. No more than 20 minutes uninterrupted sleep. Mostly my digestive system complaining. Bolus will have to be scaled back for now. Plus ended up with a big headache. Tylenol at 3. HydroM going in now.
I wasn’t well. And my text didn’t reflect how badly I was feeling. I’d sat on the edge of my bed overnight, head on a pillow on the bedside table. It was becoming my favourite way to try to sleep. Didn’t look comfortable, but it was less uncomfortable than any position I could find in the multi-adjustable bed. A little after 9am I vomited again. The nurse was pushing meds through my feeding-tube and I just managed to find the container in time. After I threw up I felt…no better than before. I waited for another spasm but it didn’t materialize. I texted Diana, which caused her much consternation. You see, every morning when I had texted before, I’d asked how she was. This time, I didn’t. So she thought that things were much worse than perhaps they were. Granted, I didn’t have the energy for social niceties, but from my position (sat at the edge of the bed…etc.) it was a blip on the road to recovery.
Either way, my digestive system was in revolt. I asked that feeding be stopped for the day and replaced with IV hydration. By mid-afternoon, though, I’d bounced back and was feeling much better. Tried a feeding cycle later in the day, but had to stop it. I felt that I was trying to stretch my atrophied stomach a little too quickly, and that my gut microbiome might need a kick start.
But I had almost two months to get back on my feet and be able to support Diana for once, as she had gall bladder surgery scheduled for the end of November. I’d been a burden on her for almost four months now. First when I’d fallen ill and ended up having my gall bladder removed, and now this. “We thought 2020 was a bad year”, she said, “All we had to do through serial lockdowns was sit at home and drink wine”. I wished we could be doing that together now. (This is posted with a big delay; I had to postpone my operation again. Alex made great progress towards recovery from the time I got him listless from the hospital, however after his November spinal tap, he developed a heavy headache and fatigue that brought him back to day one at home. My operation wasn’t urgent and I didn’t need more stress. As its time approaches omicron is ravaging the hospitals and I wonder if it will be moved again – D)
Monday Oct 4
I was well-hydrated overnight, as evidenced by the fact that I had to run to the washroom every 90 minutes or so. I was fortunately able to sleep between times. But I was totally drained in the morning, so I returned to my now normal position, sitting on the edge of the bed, head on the bedside table and dozed. I was still refusing food as I continued to be nauseous and unable to stomach it (pun intended). My weight was still heading down, albeit more slowly. I was now at 81.6 kg (180 lbs), and Diana was quite worried. I was less worried about what my weight now was, but quite concerned about how quickly it had dropped while in hospital. I had been this weight early in my career, and knew that it wasn’t too low for my frame. But weight loss this fast is not usually healthy.
Not feeling up to standing in the washroom and giving myself a full wash as I had been doing regularly, I capitulated and for the first time asked for a bed bath. Never had one before and while, in my mind, asking for this kind of help was somewhat undignified, it did feel better to be clean.
To add to Diana’s stress levels, the 12-yr-old dishwasher started throwing error codes. There was a flurry of texts back-and-forth to try to diagnose, and in the end, it had to be left for my return home. I hoped I would be capable of handling it by then. (To his credit he did manage to look into the dishwasher about 2 weeks after hospital discharge… on the 3rd week we drove to Appliance Canada and were lucky to find a newer model to ours but over twice the price we paid way back when; we were even luckier in times of supply chain disruptions to find out that it’d be delivered before Xmas. And so, for our lonely Xmas dinner -damn Covid- we had a dishwasher-D)
The oncologist came by. He indicated that from his standpoint I was OK to go home, but it would be the attending doctor’s decision as to when. Since this was the day, I’d be given my first dose of the oral chemo, and my digestive system was still in turmoil, I wasn’t in a great hurry. The prospect of feeling this ill and perhaps reacting to the new meds while at home with no immediate medical support was not very appealing.
At evening meds time, I got angry. Fortunately, I knew better than to take it out on my poor nurse, but she knew I was pissed. As she was dosing me, I asked what it was since there was not normally anything at that time, other than the meds administered by IV. I didn’t hear what she said, so asked again. It’s an anti-anxiety drug to help you sleep. Well, if you’ve been reading this epistle, you’ll undoubtedly be aware that lack of sleep was not one of my symptoms. More like inability so stay awake. Why wasn’t I informed about this before? I told her that all that’s been done is to make me anxious and that I did not want that drug again. I also wanted to talk with the doctor about it in the morning, as she had already left for the day. How on earth could she have thought me over-anxious? Certainly, when she had talked to me on her once-daily rounds, I’d had a lot of direct questions, but anxious? Well, now I was!
When the nurse returned, I apologised for being a little upset and told her it wasn’t her fault. She graciously told me that it was my right to know what I was being dosed with and to refuse any treatment I wanted. And I in turn allowed that the doctor was only trying to do what she thought was appropriate for my needs, but that I’d still like to talk to her about it in the morning.
To top off a wonderful day, I discovered that my long stay in a hospital bed had now resulted in a large painful hemorrhoid. Oh joy. Well, tomorrow will be a better day. I hope.
Tuesday October 5
Well, the anti-anxiety meds from the previous evening obviously worked! Other than my trips to the washroom every two hours, I slept. The same as every other night. I guess I was still a bit angry about that in the morning. But I’d get over it. Stuff happens.
I awoke with a headache. Not unusual at the moment, but it got progressively worse so that by noon, I was asking for hydromorphone. I did understand that the doses of this drug were very low, but was still reluctant to ask for it. When I asked, I really needed it.
The attending doctor told me that I was ready to be discharged the following day. Yay! (I think). I also asked her about the previous night’s anxiety-inducing anti-anxiety drug. She apologised numerous times for not discussing it with me first, but I hadn’t been given the whole story. While the drug was often used to control anxiety, it was prescribed to me for its anti-nausea effects. I was happy that this issue was cleared up, and communications breakdown number two was fixed. We had a little laugh about it before she moved on to her next patient.
I was still having difficulty tolerating the food, and my stomach could not accept a full day’s delivery. I was supposed to have six 250cc cans a day, but despite the nausea meds, I had to stop the pump early.
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