Caregiver's Diary: Another Journey Begins

May 30th 2011,

My wife has been dealing with her own father’s esophageal cancer. In her own words:

The first time you hear the word ‘Palliative’ it gives you a start. My Dad and I heard it the first time after his radiation treatments for esophageal cancer had concluded. Dad was still tired and had some stomach discomfort a month after the treatments and his radiologist didn’t think it was the radiation effects doing it. But he couldn’t be sure. At any rate, he had done what he could for Dad, who, at 88, was not a candidate for surgery or chemo, and now was referring him to another doctor at the hospital where he was being treated: a Palliative Care Specialist. Her name came on a card, which he handed us. It was in black and white, the word “Palliative” clear and impressive. She would be Dad’s contact from now on. Did we have any questions? No. We did not.

Six weeks later, the hospital called with Dad’s first appointment with her – a meet-and-greet, I guess. Dad’s symptoms, his vague stomach discomfort after eating and sometimes at night, had neither worsened nor abated. Dad was determined to get the bottom of it – he’d done the radiation, which, in his head, should have fixed things. His cancer was extremely localized, there had been no spread at all. Why did he still have some pain?

The Palliative Care Specialist’s nurse dealt with him first, weighed him, he’d held steady at 148 for weeks, and took his BP – which was 97 over 50. That was startling. How could Dad still be walking around? Wasn’t that clinically dead? The nurse shrugged. It is a bit low. The doctor would be in shortly.

We waited. And waited some more. We talked about his BP, his stomach pain, we talked about how they always rush you through the nurse, giving you false hope that you might get out in time for lunch, and then stick you in a holding tank, where there is nothing to do but avert your eyes from scary medical charts which are meant to be ‘informative’. (There is far too much cheerfully packaged ‘information’ in a hospital, for my taste.)

Finally the Specialist arrived. She was instantly likable. Young, smart, pretty, kind, and respectful. She apologized for keeping us waiting, and then asked if we had been told about the Palliative Care Program. We had, sort of. She said that the word is scary, but it just means pain and symptom management, on a long term basis, in follow-up cancer care. Dad’s cancer was not curable but the radiation could keep it at bay for a while. Her job was to make him as comfortable (a favourite Palliative Care expression) as possible for as long as possible.

Dad seemed unfazed and launched into a description of his stomach discomfort but she gently said she wanted to get some background info first so she could assess the problem more competently. She asked him about every single event of the past year: his symptoms, diagnosis, cat scans, pet scan, stent placement surgery, radiation treatments, eating difficulties and fatigue factor. Dad answered them with some vivacity. Her interest was genuine and thoughtful, and we both could sense that. She clearly liked him – all the doctors do, he is a civilized 88-year old, with a sense of humor and all his marbles. Dad mentioned he was a war vet, and she asked which war?? (I was tempted to say ‘Nam…) But Dad just said WW2, and that he was a navigator. She liked that.