Being absent

Storyline: Thinking in Autumn Colours 

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From the horse’s mouth

On Wed Oct 6 I was home for the first time in a month, having been discharged from my unplanned all-inclusive vacation in hospital. I’d been well-taken care of 24/7 by teams of nurses, doctors, dieticians, speech-language pathologists, porters, cleaners, radiologists, technicians, and many more. Now I had Diana to fill the role of 24/7 caregiver.

Diana had worked her usual magic in preparing for my return. The family room was set up for my comfort (we jokingly call it his hospital at home-D). A rug had been removed, the recliner chair where I would sleep for the first few nights had been covered to protect it from errant fluids. Next to the recliner, a table from where meds and feed would be prepared for delivery via the g-tube that was inserted just below my sternum into my stomach. She had been in touch with homecare and a nurse who would instruct us on how to use the feeding pump was expected to arrive within a few hours of my safe delivery at home.

And despite my joy at being home, I really felt unwell. I was nauseous, headachy and extremely sleepy. I later described my state as being a “blob”.

When no nurse arrived and I reclined on the chair and drifted, Diana got on the phone. I could tell by the tone of her voice that she wasn’t happy. And when she told me that no nurse was scheduled because my discharge had been delayed from the original schedule, she was in near-panic. Well, Diana never panics. She worries a lot, but doesn’t panic. Now she was responsible for getting two cans of food into me without being able to use the pump. It would have to be delivered by syringe. And I really didn’t feel like putting anything into my stomach as I wasn’t sure it would stay down. This was not how things were supposed to happen. At the hospital we had not been trained on use of the feeding pump since the model used at the hospital would not be the same as that provided for home purposes.

Diana has written about the home care challenges elsewhere, so I’ll skip most of that story. Besides, it has been more Diana’s story than mine as she quickly donned her project manager robes and, despite the best efforts of the home care case managers to avoid managing my case, she eventually had everything organized.

So there I was, feeling like death warmed over, needing 1,500 ml of liquid nourishment and another 1,500 ml of water pushed into my body every day. I was fatigued, headachy, lethargic and nauseous, and didn’t care if I couldn’t tolerate is all. But I also needed to stop the weight loss I’d continued to experience throughout this adventure. Oh, I also came home with a long list of prescription and non-prescription medications. In addition to the ibrutinib and my three pre-existing heart meds, there was hydromorphone (just in case), laxative, stool softener (for known chemo side effects), Gravol, a stronger anti-nausea drug, g-tube cleaner, g-tube unblocker, and multivitamins. These all had to be administered via the g-tube. Let’s just say that it wasn’t easy for a while.

Once again, Diana to the rescue. I would have happily curled up and slept the days away, but for Diana, every day was an opportunity to have me make some kind of progress. I knew that she was right, and did my best to meet the challenge of each new day, be it better tolerating my food, increasing the rate of delivery of the food, walking more around the house, or beginning to address some maintenance issues that had arisen during my absence. The one thing I didn’t need to be pushed to do was getting outside for a walk. Before all this happened, I fast-walked 5-10 km four or five times a week. I set my own goal of walking around our 1 km block within two weeks of getting home. The first day I only managed it past our next two neighbours’ houses, and it was challenging to do that. But I made it around the block in less than a week. Unfortunately the almost constant headaches didn’t abate and they continued to sap my energy.

Two weeks in, and I woke up one morning feeling refreshed and energetic. My constant companion the headache was gone! Hallelujah! Although it did return for periods of time after that, I began to recover much more quickly from then on.

One of Diana’s early challenges for me was to take some chicken broth orally. Not without trepidation, I accepted the challenge one day. The last thing I wanted was for something to go down the wrong way and for me to end up with pneumonia. But three teaspoons later, I’d taken the first oral food or drink in a month. A few weeks later and I was drinking a cup of broth at a time. While it was heavenly to be able to taste something, by then I was getting bored of the broth and it was becoming somewhat of a chore to have my daily drink.

Then one day, Diana made some lightly fried potatoes. Thin, golden-brown circles that smelled delicious. I couldn’t resist, and making sure that I focused on swallowing small amounts, I managed to eat three of them. Another step towards getting off the g-tube was successfully completed. But I didn’t want to push things too quickly, and while I experimented a little, I wanted to consult with the home care speech-language pathologist before attempting anything more adventurous. That day finally arrived on November 24 when she said I should try and that she’d see me in three weeks via video call and hoped to see me eating pasta and sauce by then. It didn’t take that long. I was soon eating most foods and was replacing some of the canned g-tube stuff. Within a week the 6 daily cans were down to 3 or 4. But I wasn’t back to normal. I still had (and at the time of writing have) trouble swallowing meat, whether chicken, pork or salmon, unless it’s been put through a blender. This may or may not ever resolve itself. Time will tell.

Three weeks later, the video call with the SLP went well and after that, there was no stopping me. Again, with Diana’s help and support, on December 16 I took my final (I think) liquid food and medications via the g-tube. If all goes well in the interim, at my monthly appointment with my oncologist in January, I’ll be able to discuss getting the tube removed. As I’m writing this, we are in the grip of Omicron and cases are skyrocketing, so it’s probably optimistic of me to think that the tube could be out by early February, but I can at least initiate that discussion.

For now, Alex’s story stops here. I’m feeling well and my strength and stamina are well on their way to full recovery, and barring further Covid variant shocks we are looking forward to resuming our camper van wanderings next spring.

Diana

And as I post this, yesterday his G-tube was removed. A week ago, Alex spoke with his hematologist’s assistant and told her that he is eating normally and will need a referral for the tube to be removed. A few days ago, in the middle of the Omicron crisis he received a call for this appointment at NYGH. Honestly, we didn’t expect this to happen so soon, but are happy it did.