chapter 11: part 2

continued from chapter 11: part 1

Even if you have an upfront doctor who has figured out how much information you want, you'll need to go over the information more than once. Those 40-45% statistics they tossed our way occupied my mind so completely I didn't always recall the rest of the discussion. This is why I suggested that you keep a log of your doctor chats and medication. You'll be able to discuss your partner's illness more knowledgeably and you'll be considered a sensible person wanting answers. You can make notes immediately after speaking with the doctor so that you can review it later.

This is your chart and it’s every bit as valuable as that thick stack of papers your doctor and nurses refer to.

All of my compatriots said that while they thought they had absorbed everything the doctor said in a stressful situation such as reporting after a major operation, they couldn't recall much later. There is a strong need for the information to be given at least twice and we should be writing it down.

I used to fantasise about a medical ombudsman/translator who would step in at each doctor visit to review what just took place.

Get to know your doctor. That insensitive fill-in doctor who bluntly told us that Hal he would be dead within two years left us shaken. We asked for the truth but he seemed to delight in presenting it as cruelly as possible.He had the option of giving us the truth but also could have told us that there were things to be done to extend Hal's life. Instead, he was so desensitized that he no longer cared about his patients.
Just because doctors and nurses deal with death constantly doesn't mean they're any better at dealing with it than us civilians. And, they have the promise that one of those testing programs will prove to be positive.

Time and again, when I asked my support group caregivers about the good and bad to do with their partners' illness, they complained about the length of time taken to diagnose the illness. They couldn’t understand why, since they gave the doctors notice that something was terribly wrong.
They never felt the doctor understood the urgency. I didn't hear of one case of immediate diagnosis or that the cancer was found in a general check-up. I'm sure it happens. There was a lingering anger that the original doctor didn't get more expert opinions sooner but I remember how much was involved before Hal's colon cancer was diagnosed.

My friend Berry' story says it all. Ronald had been successfully operated on for renal cancer five years previously. Then he began getting headaches which struck more frequently with time and were rapidly reaching the unbearable stage.
Ron went to the family doctor and as usual, he insisted on going without her. The doctor sent him on to a prominent neurologist who did many tests and found nothing. He was handed prescriptions for Tylenol Three and she said the frequent tests with no conclusion just wore him down.
Eight months after his first complaint Berry went to see the family doctor and said to him,
"Look, I can't help what the tests show; this man has a brain tumor and you've got to do something."

She and Ron never doubted that he had a tumor and her urgent meeting with the family doctor finally broke the log-jam. The family doctor passed on her concerns to the specialist, who then passed on the message that he would do an angiogram, a procedure of injecting dye to the brain followed by X-ray. He warned that it was a dangerous procedure and she found that grimly amusing since she was watching her husband slowly waste away with pain and fatigue. The test revealed a tumor, by then too large to remove completely, but the doctor decided to operate because the headaches would be relieved, and they were.

Berry couldn't help wondering whether the tumor was treatable a year ago when they first asked for help. She met the specialist for the first and last time immediately after operation. She used her family doctor as the go-between because it seemed at the time to be the best way for her and she was feeling some of the mystique of the specialist with the power of life and death.
Ron didn't suffer pain after the surgery and consequently he never used the prescription for morphine that he took home from the hospital. He didn't have any further tests while at the hospital. He was terribly weak although his abilities were not diminished as a result of the brain surgery.

Shortly after his discharge, he was instructed to go to the local hospital to see his doctor for a post-op check up. Berry waited in the car in the parking lot at his request and he slowly shuffled inside. Shortly after, she was surprised to see the doctor threading his way through the parked cars to find her. He told her that Ron was being admitted because of his general exhaustion and weakness and lack of appetite. This is where the communication broke down again. The doctor told Ron, when Berry was not present, that traces of cancer were showing in the liver. They told him but not her. Ron later told her and then, says Berry, he seemed to give up after that.

That wasn't the only shock she received. She didn’t know that he was already considered terminal until she sat down with the discharge planner when Ron was about to leave the hospital. The planner asked her what help she would have at home and it dawned on her what the real question was--can you handle his dying on your own?

"I could have called the doctor right away to get that clarified, " said Berry, "but damn it, I just felt the hell with them, we'll manage on our own. I'd always been told I was a strong person and that I could stand on my own two feet. I just felt if I lost control I would howl."

See why I say we need our intervention specialist? Berry desperately needed one person who could keep track and keep her informed. Granted, she might have handled things better, but you're looking at a distraught woman who is trying to keep her balance while her world shifts.

continued in chapter 11: part 3