Friday, January 04, 2008

pissed off

I am a patient who has fallen through the cracks.

According to my ongoing chemo cycle, I am due for treatment on January 8th and then again on January 15th. Usually, I am notified when I go for chemo when the next treatments will be, or I receive a letter in the mail advising me of my treatment schedule and any upcoming doctors' appointments.

On the few occasions when I have not received a notice, I have called the women who do the booking and sorted out the schedule with them. Since I had not heard anything by January 2nd (the day the cancer centre re-opened after the holidays), I called first thing to find out when my chemo was and to book an appointment for bloodwork, which I need to have drawn by a nurse, through my Port, within 48 hours prior to treatment (I usually do it on the same day as chemo, a couple of hours before treatment is due to start).

This time, though, I was informed that chemo had not been booked for me and that no "order papers" had been received. I was told to phone the nurse assigned to my oncologist. I did this immediately.

A couple of hours later, I got a call from an extremely stressed out nurse (you know when people are too panicked to really communicate properly or to even listen to the person on the other end of the phone?). She told me that no appointment had been booked for me and that none could be booked until I saw the doctor (this despite the fact that, as I explained, I have had many treatments without seeing the doctor. He and I both agree that I don't need to come in before each treatment, "just to say, 'hi'.") She also said that my oncologist was off that day. She told me they would sort something out and get back to me.

That was Wednesday morning. When I had not heard back this morning, I called again and left a message. My call was not returned.

The earliest that I will hear from the cancer centre will be Monday. I am starting to doubt that I can see the doctor and get bloodwork done in time to be treated next Tuesday, as ought to have been scheduled. And it's certainly going to be a challenge to find someone to come with me at the last minute (the pleasure of company becomes a critical need when I am pumped full of Demerol and too wobbly to get myself home).

And I am trying not to dwell on the fact that the woman who does the booking told me that they are 'fully booked' on the 8th. It may not even be possible to get an appointment for chemo, let alone bloodwork.

I have plans, dammit. And the plans are made based on a schedule that has been pretty consistent for the last few months. I have plans for Monday (what should be the day before treatment) and for Saturday (which is the day I always turn the corner after treatment). And I have plans for what should be my weeks off over the next several months

I hate feeling like I have no control over my life.

And I have decided that I will not give up these activities because someone else screwed up.

And why have I fallen through the cracks? Because the last time I saw my oncologist, it was at a different campus, twenty minutes away from where I usually get treated. The same hospital, the same computer system just a different physical location. Somehow this change in routine was enough to make the cancer centre lose track of me as a patient. And I did it to accommodate the fact that my appointment at my usual location had to be cancelled.

I cannot help but wonder what happens to patients who don't ask questions, don't advocate for themselves and just patiently wait to be told what to do.


Babz Rawls Ivy said...

You need to act like an Angry Black Woman and start giving them some attitude. I know you hate to feel like you have to twist necks to get people to do their fucking jobs, BUT sometimes you have to go there. There is no being nice when it comes to saving your life. Summon you inner Angry Black Woman--yep you have one and go to it! If you need help check

Hang in there, fight, vent later after you get taken care of!

laurie said...

Good advice! On Monday, that is exactly what I will do!

Rebe said...

Laurie, It's sounds like your oncologist dropped the ball. I'm on one of those "don't see me just to say hi" things too. I go for about a month of nothing but weekly infusions, which the oncologist ordered. At the same time he schedules my monthly follow-up.

If your orders were for X # of treatments, all necessary doc appointments should have also been made to allow for time to not be so crushed up.

Definitely don't let them blow you off... all they need is that silly little pump machine, you can always bring a fold up chair (though really, you'd rather not have to do that...).

Oh, and thanks for commenting on my blog!

Anonymous said...

yikes! it makes my head spin. i hope it works out.

deb said...

argh. it's making my blood boil. my aunt who has been waiting for surgery for over a year only found out recently that her specialist surgeon packed his bags and left town...without informing his patients. She now has to start all over again on the wait list. THAT's what happens when you take the wait-and-see attitude.

You go kick some ass. And if you need reinforcements, you have a long line of them to back you up.

(that being said, I'm sorry you have to do any of this.)

joy said...

Yep. I'm sorry you're having to deal with any of it. I'd given myself permission to indulge in the delusion that the New Year was going to bring Great Change and Wonderful Things, and so I'm pissed for myself and for my friends (including imaginary, virtual friends like you!) when everything is magically fixed and great in 2008. I can't wait to come back and read about the neck twisting.

Anonymous said...

That's ridiculous! I agree that knocking heads is in order if that's what it takes to get things straightened out.

Chris said...

I am sorry they are treating you like you do not exist. You deserve more than that. Don't they know how you are treated prior to all of this is tied into how you feel afterward, and do they even care? I would write someone a nasty letter if it were me. Someone that matter. High up on the totem pole. I cannot stand insubordination. I am expected to do my job and what is expected of me and I think everyone else should act accordingly. I wish I could go with you...I hope you get all this straighted out. You do not need the added stress,. I hope they let you do it as planned. Try not to stress too much. Tell em all off and be done with it,. Don't let the anger inside of you stay too long, vent and get rid of it, like I just did...LOL Thanks for that. No seriously let us know how this turns out. I worry for you and about you sweetie....C

Anonymous said...

That's terrible. Call your doctor's office today (I know it's Sunday), leave a message saying that your oncologist had better fix this problem for you. The mistake wasn't yours, so you shouldn't have to run around trying to get it fixed. Your job is to sit there and get treated. It's bad enough that the treatment makes you feel like crap, you shouldn't be treated like crap too. Also, there is absolutely no excuse for not calling you back, to add insult to incompetence.

That said...hi, and happy new year! Leigh-Ann had a really great time visiting her family (if she'd been at her sister's more, she would've contacted you, but most of her time was spent in Belleville, at her parents' house), and they're making plans to do it more often and to get me there too. So, sometime this year, expect to meet me...whether you like it or not. ;)

Anonymous said...

Hi Laurie - Happy New Year! I think having cancer and dealing with the system - with all its caring, not-caring, paper pushing, chart filling, baggage is a lot like parenting a teenager. You have to choose your battles - keep your eyes firmly focused on the goal understanding the journey will get messy at times. Otherwise it'll (they'll) eat you alive - not out of maliciousness but out of plain mindless regimentation (or in the case of teenagers self-absorption). If this is a line in the sand battle go for it. If not just do something utterly spontaneously self-indulgent in the extra days while waiting for the next treatment. I'm not of the school that good things come from garbage just that I always treat myself especially well when this disease or its treatment (or my teenage daughter) doesn't. Things more or less will work out okay and I resent the blimps less if I honor myself (since they won't (grin))
And yes - like you as I salvage my treatment again and again, I worry about those who don't have the confidence to fight, the resources to invest the time, the health to endure the stress. Or maybe our careproviders don't worry about us so much knowing we'll be on top of things and save their limited resources for those that need them most. No answer here on that one. Hope your routine comes back to you very soon.
Will take you up on your invite to email directly - have been traveling and am just back to my desk.

Anonymous said...

blast the medical profession. bunch of bozos