Storyline: Thinking in Autumn Colours
From the horse’s mouth
Fri Sep 24
Will Alex get the g-tube inserted today or will it have to be done by a different doctor next week? That was the question on my mind in the morning. The doctor scheduled to do the job was going to be off work for a week as of the end of the day. And the nurse started my feed pump at 6am. Hmm, that didn’t seem right. I told her I was scheduled for the g-tube and the previous two days the pump had been off from the previous midnight. “Oh, you are only getting liquids so it doesn’t matter”, she said, and left to take care of one of her other patients. I wasn’t convinced, so after shift change, I asked again. This time my nurse said he’d check. He returned a short time later and shut off the pump. Well at least I got some more food than I’d had for the previous two days.
Around 9am one of my hematologist’s colleagues came to give me my dose of methotrexate into my spinal fluid. I was slightly less fearful of the process this time, as nothing would be sucked out, but it was done at my bedside. I sat on one side of the bed and was told to bend forward a little. She then felt my spine, found the right place and marked it somehow. From then it progressed quickly. A shot of local anesthetic, followed by a needle that I didn’t feel, and it was all over. I was now officially a cancer patient being treated with chemotherapy. The implication of that statement to me was that in pandemic times, my immune system was compromised (it had been “suppressed” before due to the CLL), and I would qualify under Ontario’s then Covid-19 vaccine regime for a third, booster dose. The next medication activity on my recovery roadmap would be prednisone by IV to reduce the inflammation in the meninges. I hadn’t yet been told when that would happen.
Meanwhile, the nurses were waiting for the surgery schedule to be published. I wanted this over and done with, but wished it weren’t necessary. And I wasn’t too optimistic that it would happen. I’d lost some faith in the surgeon. Don’t get me wrong, I’d been told that Wednesday was a target, but not confirmed. I’d initially been told that Thursday was probable, but then I was given a time, and was prepped with antibiotics, but was never told that it wouldn’t happen. I can understand that things don’t always go according to plan in the OR: simple procedures can get complicated; Emergency procedures can bump those of less urgency, etc. but I’d been used to lots of communication from all the medical staff who had taken care of me so far, and for me this doctor had dropped that ball.
Finally, the g-tube was in! Antibiotics were again administered, and I was whisked away to a staging area a little after 2:30 PM – the same area from where I’d been given the gastroscopy and ended up being trapped between Emerg and the first inpatient unit. Things were once again winding down at the end of the day – and the end of the week for these teams. Shortly after I was deposited, another patient was wheeled in. Then I overheard a conversation, “OK, Mr. Murray is next, then Mr. Smith”. “No, let’s do Mr. Smith first. It’s just a short procedure and Mr. Murray’s is more complex”. You know where I thought this was going…Mr. Smith’s procedure wouldn’t be as simple as expected and Mr. Murray would be out of luck and shuffled back to his room to wait over the weekend for an opportunity to be bumped again on Monday. Well, that didn’t happen, and it seemed like it was only 15 minutes later that I was wheeled over to the OR. In the corridor outside, I was met first by a nurse who ensured that I was me, I knew what they were about to do with me and obtain my consent. “Sign here”. Then the anesthetist introduced herself. Her accent was familiar, as was her overall demeanour. “We’ve met before”, I said. “Oh?” “Yes, you were the anesthetist for my gall bladder operation in July.” “Really, just let me check.” She came back a couple of minutes later and we had a laugh about it being easy for me to remember her as she was the only anesthetist I’d had, but not so easy for her to remember one of what was probably 100 or more patients that she’d attended to over that time frame. “Anyway”, I said, “I woke up after the last operation, so I’m confident you’ll make sure I do today”. Then I was wheeled in, set up on the operating table, and woke up back in the staging area. No more Ng-tube, but a 30 cm tube now extended from just below my sternum and ended in a red “Y” through which food and flushes could be administered. I was soon deposited back in my room and by 6 PM the prednisone drip was being administered – the first of three over three days.
Sat Sep 25
This is how I texted Diana at 6 am: Don’t want to get ahead of things but I’m feeling better this morning than I have for weeks. Hope it lasts. No headache. No heaviness in the head. Still coughing but not as much.
Interesting. I woke at 4 and thought it was 6. Have only been drifting since.
The relief from the left-side headache and the scalp sensitivity was very encouraging. Apparently, the methotrexate that had been injected into my spinal fluid and the IV prednisone were doing their jobs. I felt better for the rest of the day. Until about 8 PM, when a different headache, this time in my forehead, began to take over. I asked for Tylenol, and had earlier been given a laxative. Not sure if that contributed to the headache, but it turned out to be a bad one.
Had a lovely visit from my daughter in the evening. Diana had been keeping well-wishers away by telling them it was a Covid rule. This wasn’t far from the truth, but I generally wasn’t up to having visitors anyway. I was only lasting half an hour with Diana when she came once or twice a day. I’d gather my strength to welcome her. We’d chat and then I’d start to fade. Diana knew the signs and would leave before I fell asleep. But I was feeling so well when Diliana visited that she stayed for well over an hour. I really appreciated her coming. However, I started to get a headache…different from the one on the left side of my face that had so recently disappeared. This one covered my whole brain, and started as a very low-grade ache. But it started to grow rapidly. As Dili left, I called the nurse for Tylenol and hoped that would take care of it, then fell asleep until midnight.
Join the conversation around our e-Table