Storyline: Thinking in Autumn Colours
From the horse’s mouth
Happy New Year to all our readers around the world! Wishing you lots of health, peace and joy. Will the pandemic end this year? Time will tell. In the meantime we have a few more posts from the old year after which we hope to move beyond the health subject.
Wed Sep 29
I had a very choppy sleep the previous night. I was being hydrated so fast that I was up every hour to pee. Then the headache began at around 5 am. Tylenol time again… But the headache wasn’t so bad that I couldn’t give myself a thorough wash and shave.
Next up in the cocktail of meds was dexamethasone, an anti-inflammatory steroid, followed by leucovorin, which I was told I’d be given post-chemo for a couple of days. When I later asked the oncologist, I was told that in this case it was used to counteract the methotrexate. That is, they wanted the methotrexate to work, then they wanted to stop it before it did too much damage (my inference). And I’d be given the leucovorin daily until the methotrexate was neutralized (layman’s wording here). That drug was accompanied by what felt like bucketsfull of sodium bicarbonate drip. I guess to flush out the metabolite. They also could not begin the “oral” chemo until the methotrexate was out of my system. The inference here was that since it was already Wednesday, it was unlikely that the Friday discharge target would be met. I’d be staying over another weekend.
I also found out that whatever anti-nausea meds they were intermittently giving me were either ineffective or only partially effective. Ugh. I had a bad headache and was nauseous. No swelling anywhere, though. After checking me, the attending doctor decided to give me anti-nausea meds around the clock.
As the day progressed, so did my headache and nausea. I hadn’t felt so ill the whole time I’d been in hospital, and just before 6 pm I vomited three times. Fortunately, I made it to a garbage can in time to avoid a real mess. And I did feel marginally better for a while afterwards. But things weren’t looking good on the side effects front.
Meanwhile, Diana and I were discussing (mostly via text messages) the longer-term strategy for feeding. The delivery rate for my food was being slowly ramped up, but 6am to midnight attached to the feeding pump was not going to be satisfactory after my discharge from hospital. The dietician had several times mentioned a bolus approach…fast delivery of a lot of food in a short time. On the pump, this could equate to three meals of 500 ml each (2 cans of food). Each meal would be given in two hours, cutting my time hooked up to six hours a day. That sounded better, but was there a faster way? Apparently yes, if I could tolerate it I could deliver the food by syringe rather than by pump. It could go in as quickly as I could tolerate. But that wasn’t going to happen for some time, given that I was nauseous even though I was being medicated with anti-nauseous drugs. And the damned headache sure was persistent!
Thu Sep 30
The day dawned with me continuing to be nauseous, headachy and tired. Supplemented my “breakfast” with Tylenol and Gravol. Diana was suggesting that I get some practice administering my meds by syringe myself, under my nurse’s watchful eyes. I just couldn’t face it, being a long way from capable at that time. (D: In the meantime, I asked to be trained and training was scheduled for 2pm the following Monday. Cherry showed me how to use a syringe, how to flush the tube, and let me administer one of his meds that were duly crushed and dissolved in a 30ml cup.)
Got a call from a homecare setup person. I palmed her off on Diana to discuss our setup and help her decide what we need so it can be ready for my return home. The enteral pump, syringes and stand are to be delivered to the house Saturday morning, so they’ll be ready to feed, flush and medicate me when I get there. But I’m definitely staying in hospital over the weekend. They won’t start the oral chemo until Monday at the earliest when there will be more staff to oversee my reaction. And the oral chemo is a bit of a black hole at this time. It’s delivered in capsule form, but it has to be administered through the g-tube for me, so I’m waiting for the doctor to tell me if there is a process for that to happen. The only solution I can think of is to break the capsules, dissolve the contents and push the solution through the g-tube. Diana is very insistent that we get the information sooner rather than later. I’m not worried at all. When the time comes, the doctor will let us know. Nothing I can do about it til then.
At least the nausea and headache abated during the day. I hope I’m through the worst of the chemo side effects.
Fri Oct 1
I slept well, except for frequent visits to the bathroom. I’m being heavily hydrated and all that liquid has to go somewhere. Unfortunately, my feeling of well-being when I woke was soon dashed by the onset of another headache. And it quickly progressed from an “I need Tylenol” level to “Help! I need Hydromorphone. Stat!”
At least the methotrexate was now out of my system. So, the leucovorin and sodium bicarb drips were no longer necessary. Small mercies, given that my head couldn’t decide whether to explode or implode. I curled up on the bed and tried to sleep, but not even the hydromorphone could give me enough relief for that.
I was now on the three two-hour meals a day routine. By the time the feeding finished I was getting uncomfortably full. I was not comfortable that I was ready for this, but Diana, who had been an incredible support throughout, was desperate for some good news and progress. So I sucked it up (so to speak) and soldiered on.
I’ve not written about my evaluation of the quality of nursing I received at the hospital. That’s not because it was poor. On the contrary, the nurses were almost all pleasant, communicative and responsive. Unfortunately, for the previous two nights, I’d had my only somewhat negative interactions with a nurse who seemed to think that meeting my needs was interfering with her day (or more accurately, her night). On the first night I was very headachy and somewhat nauseous. I was sat at the edge of my bed with my head resting on a pillow on the bed table. It’s the only position I could find comfortable. The IV saline drip finished and I rang to inform her. She came into the room and I pointed it out to her. Off she went to get a new bag. When she returned I asked for Tylenol. “Why didn’t you tell me before I went?”, she scolded. “You came and went so fast”. “No I didn’t!” Huh? “Well you can see I’m not functioning at full capacity. May I now have some Tylenol, please?” And, I thought, I’m truly sorry that your nap was interrupted. Sheesh.
The student pharmacist came by to discuss meds for home. Since Diana was visiting and I felt like crap, I told him to direct his conversation to Diana, and I would lie back and listen. In addition to the oral chemo there were two laxatives, 81 mg aspirin (replacing the anti-coagulant I’ve been taking for years as the oral chemo also has some anti-coagulant effects), hydromorphone, Gravol and vitamins, most of which would be over-the-counter (OTC) purchases. Being over 65 in Ontario, most prescription drug costs in excess of $100 per year are covered by the Ontario Drug Benefit. I need pay only a small dispensing fee for each prescription. OTC meds, on the other hand, are the patient’s responsibility.
Join the conversation around our e-Table