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.