An Unwanted Journey: Day 1310 – Kudos to our team

I am really impressed with the palliative care / home hospice services offered through the Grand River Regional Cancer Centre.

Sure, the bad news is that cancer is going to eventually get me – maybe directly, maybe by something like a heart attack, a pulmonary embolism, or liver failure. But everyone has to make an exit at some time. Not everyone gets to prepare so completely for their death. Nor does everyone get exposed to the full range of services offered through the provincial/regional cancer care organizations.

I hear, from very good sources, that the Waterloo regional cancer care, especially the palliative care services, are among the best anywhere in the province. In addition to such testimonials is my own experience. Here’s is a recent one that demonstrates how it works here in the region.

Last Thursday, we were visited by the coordinator for Paramed (the specific organization providing in-home nursing services) and the nurse practitioner working with the doctors providing overall medical care for hospice/palliative patients. During that meeting, as they heard me talking about my personal need for more information about the progress of the disease, they decided to ask for a CT scan. Those CT scan images should tell us how quickly the liver lesions are growing. They might also show if there is any significant fluid build up in the abdominal cavity.

Evidently most patients are content with knowing the bare minimum about the progression of their disease. I’m not satisfied with simply receiving symptom relief. My visitors that day recognized that emotional need and adapted the care I was receiving to accommodate my need for information.

Then Friday I came down with what appeared to be stomach flu symptoms. By Friday night I was feeling nauseous and actually vomited for the first time since beginning to receive cancer care, including radiation and chemotherapy. Saturday and Sunday, my appetite disappeared completely. By Sunday night, even though my body temperature was normal, I became increasingly anxious. I was short of breath, had heart burn, had hot/cold feelings switching in a matter of a few moments; then I started to sweat, followed by even more anxiety.

We decided to call Paramed to get some nursing consultation since I wasn’t scheduled for another in-home visit until the next Tuesday. We got a call back within about 15 minutes with my wife explaining my situation to a nurse who knows my situation and care very well. She explained all the possible causes, including a mild heart attack, acid reflux, progression of the disease which might be pushing organs up through the diaphragm, or an anxiety attack. She also went on to talk about what to expect should I go to the hospital worried about the possibility of a mild heart attack, talking about the DNR I have already signed (Do Not Resuscitate). Upon her advice I took some more pain medication and some additional anxiety medication and tried my best to get some sleep.

Sunday night was very tough, especially as I considered the prospect of my death being far more imminent that I had anticipated.

Monday morning, a Paramed nurse (the same nurse we had consulted the night before) came and took my vitals, reassuring me that my blood pressure and heart rate were all normal, making the heart attack possibility unlikely.

Later in the day, the palliative care doctor caring for me came for a visit to discuss everything that had happened over the past week or so. He also gave me a thorough physical exam. He confirmed that a CT scan would be scheduled along with complete blood work. He suspected, given the many variables, that I had suffered through a viral infection.

Sure enough, after that visit, the heart burn started to recede, my appetite started to reappear, bowel movements began again, and I found myself sitting outside with my family in the cool of the evening while they ate supper and I nibbled on some crackers.

Clearly, anxiety is an insidious thing, making difficult circumstances worse than they truly are. But my care givers, including my wife, responded quickly and appropriately allowing me to recover my bearings and achieve some balance.

Whatever the news I’ll get from the blood profile and the CT scan (scheduled for Thursday, July 9th), my health care team deserves high praise.

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?”