chapter 8: part 5

continued from chapter 8: part 4

You're thinking about the kind of impact you're making on the medical people caring for you and you're working at making this successful. The remainder of this chapter will give you step-by-step help to guard against the boredom and frustration that are often a part of clinic day or doctor day; whichever system, these rules will still apply.

Rule number one gives a quick pay- off by ensuring your peace of mind. If you live in the same city as your treatment centre, arrange to come in for any tests a couple of days before your doctor appointment, so that the results will be in his hands by then. Otherwise, nagging at your consciousness is the unsettling question: did something bad show up on the tests? You might have to wait up to six weeks for your next appointment before you get the answer. If you can't come in ahead, arrange to phone your doctor or his designate for the results at a prescribed time. You have every right to be forceful about this.

We learned this lesson the hard way when Hal's day-of-clinic Ex- Rays indicated a spread of the disease and we didn't learn of this until the next visit, when the doctor mentioned it casually, as if we already knew. Now Hal didn't miss out on essential treatment because of the delay, but we lost that feeling of control and trust for a while, and that feeling can't be allowed to happen. When did the doctor learn of this? Wasn't it important enough to tell us immediately? Or did it matter in the long run? It did to us.

Next, on clinic visit day, don't make lunch or business appointments because you can count on being there for anywhere up to three hours. On the first visit or two, you'll be busy memorizing how to get from ex ray to blood tests to examining room, but once that's done, you become one of the regulars and you'll probably find yourself fighting both anxiety and impatience.

Go out and buy a couple of lined notebooks, like the scribblers you had at school, or the hard cover blank- paged ones in the book stores. These will be your medical records. Label one book, "DIARY", which will be a brief chronological report beginning with the date of your diagnosis, all treatments and tests that have been done to date and any significant changes in your health. To make it easier to read, get a book with a margin for the dates of each entry. At the same time, beginning with the back page and working forward, keep track of every prescription and whether the drug is still being used.

In Hal's case, after his surgery he felt wonderful, returned to work and didn't have another serious symptom for almost seven months so his book would have been pleasantly bare for that time, if we'd had the foresight to use this system.

Book number two can be labelled "QUESTIONS" and is intended strictly as preparation for the next checkup. In this book you transfer in exactly what changes have been recorded in book number one since the last visit and then list every question you want to ask the doctor. You don't think you'll forget to mention important things, but in the heat of working your way through the various tests and departments, you may need to refresh your memory. Be sure to bring this book with you. Give it a name and don't leave home without it. Don't be afraid to take the time to jot down some answers, and again, use team work and decide in advance which one of you asks the questions and which one writes down the replies.

What you're doing is keeping your own chart of your cancer and if at some time you are confined to hospital, the two of you can keep better track of what is going on by doing your own charting. You may be reminded through those pages of some medication or treatment that worked for the same symptoms in the past and you can ask about trying it again. In all fairness, you can't expect the doctor to re-read each page on your ever-growing chart and you have a vested interest in keeping involved. If you don't feel up to it, your partner is there to help.

I have a friend with Hodgkin's disease, and from the onset, she has requested and been given copies of all her test and ex ray results. She has even been able to show her doctor, through graphs, which medication works best for her. You can be sure her doctor re-reads his notes before tackling her.

continued in chapter 8: part 6