The Pabster really saved the day yesterday.
I was very nervous about meeting with Dr Ana again, especially as I’d spent most of our last appointment crying my eyes out and not making a whole lot of sense. But luckily Pablo found time to come with me, even though he’s been crazy busy these days with a new work project, and it really helped having him there. Especially as he’d been there for the death sentence and also when I was suddenly pronounced miraculously “cured” in January…
So we met at the hospital and had just enough time to go through my notes when Dr Ana came in. Shortest waiting time ever! To sum up, I will be having a port put in the week before my second chemo session. The first session will be on Thursday at 12.00 in the hand … aaargh. But at least it will just be the one. I also got Dr Ana to change the anti-nausea meds to one called Emend, which I’ve heard good things about on the Colon Club forum. In fact, I’m going to have four different anti-nausea meds this time, so let’s hope they work! I also asked to have the last medical report corrected to show what actually happened at the January consultation, and this was when it was especially good to have Pablo there to back me up.
Having the lists – and especially the graph showing how long each side effect lasted during a cycle – was even more helpful than I’d thought it would be. Dr Ana especially liked the graph and said I should make one for each cycle.
We were there for about an hour and it became clear that all future communication is going to have to take continued studied preparation on my part. Also, I have to remain as “unconfrontational” as possible (apparently even floods of tears can be taken as “confrontational”) and this is another way that having lists and graphs help. So it’s a bit of a delicate balancing act, but the bottom line is that I need to make sure I get the best treatment possible, which also means carefully phrasing things so that the actual suggestion ends up coming from the doctor, as though it was their idea. Again, the lists and graphs help me stay calm because they act like a buffer – something to focus on – while I’m explaining symptoms, treatment, etc. Though I also think popping a couple of tranqs before each oncology appointment wouldn’t hurt either.
So, as The Pabster pointed out, we got everything I wanted out of that appointment. And also learned a few things. And so now it’s on to the next phase of treatment.
Gracias por venir conmigo, Pablito, mi héroe.
[super hero by az, photoshopping by mudhooks]
casa azahar 
De nada Shawnita, pero realmente tú eres la veradera heroina de esta historia!
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Well learning how to play the system to get what you want out of it has to be a good thing – and that should get easier as time goes by.
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Good news anyway!
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Nurses learn to play that game with doctors early in their careers. Or they don’t survive. Or get anything done for their patients. Any hard data you can give them helps, and you have to make most of them think they thought of it.
It’s good that you could take Pablo with you, and that he could “testify” for you. Glad you are getting the port, and all the new nausea meds. That will hopefully improve your quality of life this time around.
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Bravo, both of you!
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Good – it stinks that you have to manage your doc like that but good that you learned the secret. The emend worked well for me; I’d be good for the first couple of days, and did get a bit of food down, but still had some retching at times. Now if only they could come up with something for the fog.
The port worked well for me too – makes the treatment go by quicker and easier than the arm. Just be careful of infection – I know I had to take my temp twice a day to make sure there was none.
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Hmmm… just realised I probably should have put some blue tights on Super Pablo (looks a bit gay, doncha think?). Anyhow, it’s kind of a Thor super hero carrying a flaming sword of justice. And not gay. 🙂
Dr Ana is a definite improvement over the two colon oncs, even though her speciality is breast cancer. At least she has experience, and is also in a position to make “executive decisions”. Ricardo was right – she is tough, but I think she’s also fair (time will tell). And it’s good that I’m learning the best way to communicate with her. Interesting to know that nurses are in the same boat, Silverstar.
Everyone on the Colon Club forum had also recommended Emend, Kim, but after my first gaffe (mentioning to Dr Ana how everyone there had ports – ooooh, that did NOT go over well), I just casually asked about Emend as she was writing up my list of anti-nausea drugs and she said that she was already planning to give that to me.
I hear ya about the FOG. It wasn’t on my list of side effects, simply because I think it’s a given for everybody, and I agree with you that it totally sucks.
I’m still trying to understand what “no more surgery” actually means. I don’t think it’s a very good sign that I’ve had a recurrence so soon after being pronounced NED (though of course I probably wouldn’t be having one if they’d given me the proper post-op treatment in January!) and so my main hope is that I will have an equally positive response to the chemo this time, and do a full course of it to be as sure as possible that there are no rogue cells left floating around.
And then …? Who knows. But I’m glad that a couple of the worst side effects are being dealt this time so that I will hopefully be able to lead an almost normal life over the next 5-6 months.
So … two more days of “freedom”. Think I’ll make a curry for lunch.
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Congrats, it sounds like you’ve got a way to deal with the doctor to get the best treatment out of her. Sometimes you have to drive doctors like mules; mules, if you’ve ever worked with them, can’t be pushed into anything but if they think they see something in it for themselves (uh, like you doing their homework for them) they’ll move in the right direction.
And thank god you’re getting that port. Just be sure you get some blood thinners too; the moran who put mine in neglected to give me a prescription for coumadin, and my hematologist thought I was going to die of a stroke right there in his office when I asked him about it, three weeks later. He didn’t let me leave till I’d had three times the regular dose and felt okay.
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Good to hear you are still being strong.
As for doctors, ai, ai, aiii!!
If you get a chance, listen to the Podcasts of “White Coat, Black Arts” on CBC-
http://www.cbc.ca/whitecoat/index.html?copy-podcast
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It is all a matter of being proactive. Some doctors take it as a given that either the patient doesn’t know anything and is just willing to let them gloss over things… or that because they see hundreds of patients they can treat them all the same.
Of course, you are also dealing with cultural differences. In Japan, they just don’t tell anyone the prognosis if it is bad. The patients don’t ask because it “just isn’t done”. In many countries, the patient doesn’t question the doctor, even when the doctor is wrong. It just isn’t done.
My friend, here, took her doctor at her word that she didn’t need to be referred to an Ob/Gyn over violent pain she had every month for years. “This is normal”, she said.
I would have demanded to see an Ob/Gyn… It is normal for any woman to have their own Ob/Gyn whether there is anything specifically wrong. And yeet, this doctor “didn’t think she needed to see one”??? Turns out she has fibroids and has cysts on both ovaries. One was the size of a grapefruit and she lost that ovary and part of the other one. I’d have sued.
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Great legs on the Pabster, and lovin the hat! Have just sent you an email oh gorgeous one. xxxxxx
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Nice doc management, Az! You decided to speak the language of charts & graphs – sort of like switching to Esperanto during a heated international controversy.
I’ve just completed round one of post-surgery chemo myself. We’re in it for the long haul, but you’ve got the meds to deal with it now. Well done!
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Way to go, girl! I wish that technique had occured to me during the heart fiasco. Would have helped lots, what with the conflicting advice and prognoses (-sises?).
Here’s hoping SB gets fixed in the PC hospital. If you’re without your computer for a month, you’ve still got your iPhone, yes? So, you’ll still be able to post,etc. 😀
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I told you they liked charts and documents! I’m glad it worked, glad you are getting a port, hope the new anti nausea drugs work.
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