Storyline: Thinking in Autumn Colours
From the horse’s mouth
Thu Sep 16
The MRI results are in. Like all the other tests I’d had, the results were negative. Sigh. “Now what?”, I thought. I wished I hadn’t asked. I’ll be given a spinal tap on Monday (the 20th). The thought gave me the willies. I’m not afraid of needles, but one into my spinal fluid? What could possibly go wrong? I had visions of paralysis, and I was paralyzed enough. But the show must go on, and I was more desperate for the doctors to get to the root cause than I was in fear of the procedure. I put my fears aside and thought no more about them.
What were they looking for in the spinal fluid? Signs of lymphoma, or other causes. If they once again found nothing, the Ng-tube would be replaced by a g-tube – directly into my stomach from the abdomen. I’d be fed through the tube while waiting for the paralysis to subside, if indeed it would.
Fri Sep 17
The Ng-tube that they inserted is the smallest diameter tube available. Unfortunately, it didn’t take well to the thick liquid food that they were pushing through me. It kept clogging up despite that they were soaking it in a sodium bicarbonate solution for an hour a day. Thinking it might be a problem with the positioning of the tube in my stomach, they ordered another x-ray. The x-ray is done in the room. A portable machine is rolled in, the head of the bed is raised to sitting position and a board is placed behind the patient, then the x-ray is taken, checked (it’s all digital now). All done and dusted in five minutes or less. Positioning was not a problem, so the blockage was inside the tube and feeding was impossible, Once again I went without for the day.
Speaking of not being fed, I was rapidly losing weight. When I arrived in Emerg on the 6th, I weighed about 205 lb, or 93 kg. I now weighed 190 lb, or just under 87 kg. I’d been losing weight on and off over the previous five years or so, cutting out the sweet stuff that had contributed to my weight gain over many years. Earlier in the year I’d been plateaued between 210 and 215 lb (95 and 97.5 kg) for months. The remainder had come off due to my inability to eat before my admission to hospital. I’d always had a long-term goal of getting down to 185 lb (84 kg), which was my weight in 1983 when I started my second post-graduation job. But the loss was supposed to be much slower and sustainable. I was nearing my long-term goal, but this was not supposed to be the way it happened.
Sat Sep 18 & Sun Sep 19
The feeding-tube was replaced with a larger one. That necessitated another x-ray, but finally I was getting nutrition again
Mon Sep 20 & Tue 21
Time to face my big fear. Nothing I’ve faced in hospital so far has fazed me, but I’m not looking forward to the spinal tap today. Of course, the medical staff treat this as just another procedure. I’m not exactly quaking with fear, but I’d rather not be here now. Despite being told that this procedure is often performed at the bedside, I’m told that they will be using x-ray to precisely position the needle that will extract some of my spinal fluid. Ugh. Anyway, off I went, wheeled down to radiology again. I’m put on my left side and told to arch my back a little. First came the local anaesthetic. No problem. I didn’t feel the spinal tap needle go in, but the doctor was talking me through what he was doing. “I’m in. Huh, I’m not getting any fluid. I’ll try again. Still no fluid. I’ll have to try another spot.” Oh great! “Aah, here we go. Just a few more seconds. Done.” I wiggled my fingers and toes while the doctor cleaned up. All working. Cue internal sigh of relief. “Now you may develop a headache after this, so you need to lie flat on your back for two hours.” Well, I was already getting good at that, so when the porter deposited me back to my room, I lay back and slept. Or not. I still got a huge headache, and for the first time asked for hydromorphone during the day.
The hospital was now preparing to discharge me. All tests were now done and, other than waiting for results from the spinal tap, there was nothing left for them to do. It would take a day or two for those results to come back as part of the spinal fluid sample had to be sent to a larger hospital that had a lab capable of running the test for lymphoma. The only bottlenecks to my discharge were the insertion of the g-tube directly into my stomach (and removal of the ng-tube), and the availability of homecare to deliver a feeding pump and supplies, and to provide nursing help to deal with everything. The g-tube insertion was on the schedule for Wednesday, so I expected to be home by Friday.
Now a few words about my roommates. When I was moved into the semi-private room my roommate was a quiet young man who was being taken care of by his parents. They were nice and quiet, and I was more than comfortable behind my privacy curtain. He was discharged a day or two later and replaced by Carlos. Nice guy who had been a regular in hospital since an accident a few years earlier had left him paraplegic. Late one evening (Sept 19) he was abruptly moved to another room – one with four patients. I feel lucky that it wasn’t me. I don’t have insurance for a semi-private room. Here’s what I texted to Diana the following morning.
11:49pm I’m woken to be unplugged from feeding-tube. Freedom! 12:47am: all lights go on in room and two porters announce they are moving Carlos. 1:19am lots of banging and crashing as his space is being cleaned. Lights still on. No sleep for me. 1:27am lights out. 3:14am new roommate arrives. Lights on. Loud questions and answers, banging and crashing. 3:34 first round of Q&A finishes. Lights still on. 3:44 I push call button. Ask for hydromorphone
3:47 nurse leaves. Lights out. I push button again. 3:50 get some attention. Ask for meds. “OK” and disappears. 4:00 waiting. 4:13 IV started. 5:46 woke to IV beeping. Apparently had been beeping since shortly after 4:13. Nurse forgot to unclip shutoff so no drug delivered. 6:16 feed started. Spurted all over my arm because she didn’t set it up right. I may be a little tired today😴😴😴”
And the following day:
I slept better last night but need to talk to the staff about that idiot’s phone. It woke me up 6 times, blasting at full volume. The last twice at about 3:30 – sounded like calls from friends or relatives in his old country.
Wed Sep 22
Overall, things had been going very well. I’d been tested umpteen times…x-rays, gastroscopy, multiple CT’s, MRI, Ng-tube and replacement, daily blood samples, and so on. I was now just waiting for the g-tube insertion so I could go home. As mentioned before, I was told that would be on Wednesday.
Today I was to get the g-tube inserted and have the Ng-tube removed. The surgeon naturally needed my stomach to be empty for this operation so I was given no food or water after midnight. I waited all day until the nurse came at 2:30m and told me that it was highly unlikely that I’d be taken that day. At 3:40 this was confirmed, and I was told it would now be the following day. Or for sure the day after. <What??>. At around 4 the feeding pump was started and I received eight hours of food and water before I was disconnected once again to prepare me for the following day’s surgery.
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