The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).
Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:
Nurse:
"You're depressed. Why?"
Me:
"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.")
"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room").
"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")
8 comments:
I've given up on trying to explain how I feel to my oncologist or his staff. They interpret what I say so oddly that there's just no point in trying to reach an understanding. For instance, he freaked out when I told him I had talked to a hospice nurse, because he was afraid I'd given up and would demand to be taken off treatment. You'd think he'd know by now that I'm just the sort of person who likes to prepare way ahead of time, but NOooooooo...
That pain scale thing is useless. Where I fall on it is so completely subjective and relative that my answers become meaningless. When I could walk fine, but my gut was bothering me and I had arthritic-type aches, I was 4-5. When I was completely crippled up from fractured hips and femur and ribs, I was a 5... because it wasn't as bad as it was earlier in the week.
Quite frankly, I don't think I'll admit to 8 or 9 until I'm screaming in agony and trying to find the nearest sharp knife.
hee, my verification word is 'noman'...
The pain scale thing is indeed useless. I mean, when I go for treatment, I'm generally feeling my BEST in the cycle, whereas I may have felt terrible immediately following chemo. Nausea? Then, not now. And so on. Not helpful.
OTOH the social worker at the psycho social oncology centre has been enormously helpful - she gets it and it's a safe space to talk without baggage.
I love this so much that I can't articulate it. Wonderful post.
What a great post....In the past few months, I have filled out a few of those forms--clicking away at the computer and then handed the "print out". When they first implemented here, they said it would provide a print out for Doc to see what your "problem" was (this was the volunteer who said this). I just laughed and said, my problem is the cancer. Sometimes technology just doesn't make sense and this is one of those times!
Rachel you made me grin. I love that response. "My problem is the cancer." Well, exactly.
I agree with the others here, this IS a great post. I'm not going through what you are but I think I get it. I had to fill out one of those forms the last time I saw my medical oncologist and I am so far beyond any of it (meaning I am lucky to be in excellent health) that I wrote on it, "if I felt any better, I'd be two people". They didn't even look at the form. sigh. I guess it's good that people are still working on the issue.
I didn't know anything about the psycho social oncology centre - thanks for telling me about it.
Yes, wonderful post, Laurie. I hate it when this whole cancer thing depresses me and I get asked, "why are you depressed?" "
Oh, I dunno, I just have Stage IV Inflammatory Breast Cancer and sometimes it's just too hard to take."
Sheesh!
J and J - yes you do get it. I wish none of us understood this so viscerally but I am happy to have folks in my life who understand.
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