An Unwanted Journey: Day 1306 – Uncertainty and Humility

My wife went to a retirement party recently. Before leaving, she asked me, “What do I say when people ask me how you’re doing? Just the standard, ‘We’re taking it a day at a time. One day he’s doing reasonably well, the next he’s bedridden and in a lot of pain and sleeping whenever possible.’”?

She returned from the party pleased with seeing old friends and colleagues. Evidently, a lot of people asked about me and about how she was handling the daily care-giving responsibilities. This blog is a handy resource for answers to questions about how I’m dealing with cancer, but there isn’t anything here illuminating the care giver’s experience. About all I can offer is a platitude that it takes a strong and confident partnership to make cancer care work and a marriage healthy.

These are uncertain days. As I’ve said before, being on palliative home care means that there are no regular CT scans or MRIs or even complete blood work profiles, CEA measures and so on. There are regular visits from the palliative care doctor from the Grand River Regional Cancer Centre every two weeks or so, and even more frequent visits from nurses. But apart from symptoms like pain, appetite, bowel movement frequency and characteristics, voiding profiles, fatigue and drowsiness, nausea, loss of breath, etc (all part of the standard Edmonton Symptom Assessment System – ESAS), I really have little objective information about how the disease is progressing.

It actually takes a lot of humility to accept the status quo. If you, like me, prefer more information, then hospice care can be frustrating. At its most basic, home hospice care is about keeping the patient as comfortable as possible until he/she dies. The professional care givers can’t answer questions about how the disease is progressing apart from the fairly obvious.

I’ve asked for special treatment because I thrive on knowing as much as possible about the progress of the disease. I’ve asked for a CT scan to tell us whether the liver lesions are growing, how fast they are growing, and whether those other lesions in the abdominal cavity are getting large enough to be seen on the scan images.

Visitors, whether nursing staff or simply family and friends, continue to tell me that I’m looking good, surprisingly so. As it is, I’ve survived far longer than even the palliative care doctor would have expected when he first started visiting me in November 2008. My wife and I continue making a good team. We’re really good at this!

So whatever the CT scans have to tell me, I’m happier today realizing that I’m going to have some objective markers soon to answer the continuing question, “How are you doing?”