We're at the end of a meeting with Dr T, medical oncologist, to explain what will happen during my six week radiation and chemotherapy treatment for my brain cancer, my GBM. I only have the minimum information for my own satisfaction: the treatment will maintain my life, maintain my quality of life, the cancer will still kill me.
Dr T has explained the drugs that I will be taking -- what, when and why. This is supported by a printed list of drugs. With comments on what, when & why.
I've asked other questions, Dr T has answered. A lot of the process is now clearer. It's that drug form that I'll get back to... after a few paragraphs of, Why that form in particular?
Dr T mentions, almost as an aside, that I will be contacted once a month by a nurse. Asking questions for a Curtin University study. The study is -- if I remember correctly -- into the satisfaction of GBM patients with the explanation of what is and will be happening during their radiation + chemo treatment.
So what (I think to myself) is my opinion so far?
First, I need to explain. To cover a few mitigating -- and other -- factors:
I am booked for surgery next week, before the chemo treatment begins. My right -- cancerous -- testicle will be removed. Yes, removal of a cancerous testicle is medically far less serious that last week's removal of a tumour from my brain. But I'm a man, I care for my testicle!
Brain surgery is in the past. Chemo is in the future. And said to be quite straightforward. For the patient, anyway. Between me and chemo is more surgery. That puts next week's surgery at a higher immediate priority for the focus of my worry.
Today is about chemo. I listen carefully, I follow the discussion -- and question when I do not follow the medical explanations. But I may be a little distracted. And I have often needed more than one explanation to fully understand a new concept.
For example, my comment above: "Dr T mentions, almost as an aside"... I'm almost certain that Dr T did first ask for my permission, though casually, and that I said yes, and clearly understood what I had accepted.
But.
Where is the clear and easy explanation of the study? One hundred words -- printed -- handed to the patient -- to be *sure* that the patient understands what the study is about?
In the next five minutes -- and certainly now, hours later, at home -- I am not entirely clear of the purpose of the study. Satisfaction of patients with the explanations... is that it? If so, then no, not so far.
A few minutes of question & answer would have helped. Better yet, give me a sheet of paper, with a clear explanation of the purpose of the study... and how I will be contacted, to be asked what sorts of questions. Give me a few minutes of q&a -- and a pen, to write notes on that sheet. Then I will have a clear understanding. And a means to keep that understanding fresh, when I am at home again, hours later.
So, a bad start ... by the researchers.
Now, back to that drug form:
First drug on the list is Temozolomide. Other information: "Chemo. Take on an empty stomach (not fasting -- in between meals OK)" That's what I read. What I *hear* is, "Take this before breakfast."
Before my next surgery I must fast for six hours. Time between dinner and breakfast -- when "not fasting" -- could easily be eleven hours. We (Deb & I) will have finished dinner by the seven o'clock news, I will not be up for breakfast before six the next morning. How is that different from fasting? Or should the form really say, "not *necessarily* fasting"?!
"On an empty stomach ... in between meals OK." Ummm. In between *which* meals? I *hear* "before breakfast" yet I *read* "between meals". Those do not mean the same thing. Which is correct?
There are two more lines of "Temozolomide". Each with a dosage crossed out in biro by Dr T. Now -- with the luxury of time and a more definite desire to understand -- I can see what that means: My treatment will include that first dosage of Tem -- but not the second & third lines. My treatment will not include the Tem with the different dosages that have been crossed out.
aside: Proofreading. I am changing "Tet" to "Tem". I am so *un*familiar with the name of the drug that I have made a mistake typing just the first three letters. I'm in a new and unknown area. Every explanation must be very, very simple. Back to the repeated lines of... Tem:
If you want me to understand this -- quickly and clearly: cross out the entire line of drug that will *not* be used. *Especially* cross out the *name* of the not-required drug. So that I can quickly look at that line and think, oh, it's been crossed out, I won't be getting that one then.
Skip down a line to Kytril. Which Dr T has marked as "1". With the first Tem marked as "2".
I read: "Kytril: Take half an hour before chemo tablets. For nausea control." I hear, "Kytril: before breakfast." Okay, the difference is probably because my mind is full and is losing focus. Still, there is that discrepancy between spoken and written instructions: "Before breakfast," Versus, "before chemo which is, in between meals."
I ask the question, get a clear answer, write a note on the form: "b4 b/fast ... wait half an hour ... b4 b/fast." I read aloud as I write. Both Dr T and I are satisfied with that note.
At home -- now with a clear understanding -- that note raises another source of confusion:
The very first drug that I take -- every single day, each and every week of the six week treatment -- is Kytril. Why is Kytril on the *fifth* line of the list of drugs? If you want me to take Kytril first, every day -- put it first on the list of drugs.
After that, any comments about confusing information are just being picky. Now that I (think I) understand the first half of the form, the rest makes sense. Because it takes the same confusing -- but now understood -- approach to presenting the information.
Let's just skip to Dr T's handwritten comments on the three otherwise blank lines at the bottom of this drug list form...
...Temozolomide [dose, frequency, etc]
... Blood tests every Wednesday
... See Dr T [date]
I *think* that it may be instructions to the receptionist: Make a note that the patient will take this drug, have this blood test, need an appointment on that date. I think so but -- from the form, from my memory of no comment from Dr T -- I cannot be sure. And why is Tem mentioned but not the Kytril?
More importantly: Are these handwritten notes essential information for me, for the patient? Reading the form gives me no clue.
At the bottom of the page is "Version 26/5/05". Was the form designed in 2005? It could be time to design a better -- clearer -- form for the delivery of important information to the patient...
I'll be interested to find out just what the researcher asks. And why, if I can.
If my first, very quick impression of the purpose of the research was correct... perhaps I should also provide a link to this blog...
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Dr Nick Lethbridge / Consulting Dexitroboper
Agamedes Consulting / Problems ? Solved
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Agamedes Consulting / Problems ? Solved
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"No matter where you go, there you are." ... Confucius ?
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Now much more than a clever name for a holiday journal:
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