This is a venting post – so be warned. I’m just grumpy and want to wha-wha-wah it all out of myself. Maybe that will help me feel more in control again.
So last week I went for a head MRI – brain and eyes to be specific. I get to the hospital to get my port accessed, which took way longer than I wish it did, then ran over to the MRI scan place – where they said I was on the cusp of lateness, and they may not be able to fit me in.
I say: I’m ready now! Port accessed and ready!
And I run into the change room and change, and am by the MRI room in about a minute in the scrubs they give you. I wait for someone to come over, see I’m all set and bring me in.
But I just keep sitting there. And then I hear this technician lady talking into the phone . . . “so she doesn’t need it?” (and yada yada yada, I didn’t memorize each word – but she was inquiring after someone.)
About five minutes later, maybe ten, she comes out to me and tells me the MRI has been cancelled.
“But I have an consultation next week with two radiation specialists to discuss the results of this MRI.”
“The report says it should be in June. I can’t do anything.”
“But I’m here now. My appointment is for now.”
“It should be in June,” she replies.
“But I’m meeting the doctors next week to discuss the cancer in my head – the results of this scan. What are we going to talk about if there’s no test done?!” I’m getting pissed off now.
“There’s nothing I can do. That’s what the chart says. You’ll have to come back in June. Or go speak to the doctor now and get them to call me.”
“And I might get in today?”
“I don’t know.”
Okay. We go to the cancer center at the hospital and they are very helpful. Within minutes the receptionist has cooled my lava-like fury and is investigating the situation. A nurse is looking into it for me, I just need to wait.
The nurse comes out and explains the scan really should be in June. It was booked too early, and therefore moving it to June is okay. It’s normal procedure is to wait 3 months post head radiation before doing the follow up MRI. Everything is okay. The doctor did this purposefully.
“But I’m meeting with the doctors next week, supposedly to discuss the scan.”
“It’s mute now, I’ll cancel the appointment and request they reschedule for after the MRI,” assures the nurse.
I calm down, think ‘fuck it’, and go to Bridgehead (coffee shop) for an almond milk decaf latte. It was a very stressful morning.
This week I get a notification phone call about my appointment with the radiation doctors on Wednesday. I call them back (responding to the message) and say:
“Can you rebook this for after June 10th? The scan was postponed”
To which they say
“There’s a note here for this specific date.”
“To review a scan that didn’t happen yet.”
“You’ll need to call the doctor’s nurse and have them sort it out.”
OR, BOOKING OFFICE, YOU COULD JUST REBOOK! I say in my head. But not out loud.
Then I call the nurse. She hasn’t called me back yet. Tomorrow is Tuesday, then its Wednesday. I’ll call again tomorrow. I know my stupid appointment stuff isn’t her top priority – but my continual sense of displacement, of misinformation, or missed connections between departments . . .
. . . it’s getting to me, man.
Who has the holistic picture in all of this? Me, just me, only me – because I’m at every appointment, I’m at every scan, I’m at every cancellation, I get every phone call, I meet every doctor, I hear their ruminations.
Who is at the center of the fucking tornado? ME.
Who should be held as an expert in her care? ME.
Who is given the very least amount of credit when it comes to rebooking, decision making for the logistical details, having results sent between departments, getting copies of the reports – me.
lower case me.
I know everyone is covering their own butts. I know. And I know it’s a huge monster of a system, and the fragmentations are a necessary part of so many working arms (wonderful arms, caring arms, capable arms) trying to help in different ways. I know it’s all so hard to manage.
But I also know I AM one of the experts in all of this – yet far too often I’m made to feel helpless and victim-like in my lack of control.
One other thing. . .
The doctors have nurses who are assigned to them. That’s great. But I remember in England, I had a nurse assigned to me. Someone who didn’t actually work for the doctor, but instead worked with the patient, her whole job was to advocate on my behalf – and whenever I had a question, I could pick up the phone and they would be all over making things easier. If I was in the hospital, I could drop by their office and ask a question.
There are times in health care when I know my story best. And in those moments above all others, I’d like to be given the credit I deserve.
There are times in health care when I am the weaker one, the ‘victim’ of a hard round of chemo, barely able to advocate for myself… and in those moments, I wish I had my breast cancer nurse in England again, someone who I know puts my schedule, my stress, my issues first.
Lately I feel lost in a big system of notifications, notes and dis-empowerment.
This is a time when I’m frustrated with my health care system. It’s not an everyday experience, and it doesn’t mean I’m ungrateful . . . but there is something very important that is lacking. And having to jump these ropes of permissions and contradictions leave me just plain mad.
Not upset or sad: mad. I guess, ultimately, it is that feeling that makes me want to get things done. To make more phone calls. Leave more messages. Become more annoying.
So look at this. . .
After all that venting, I’m feeling empowered.
Huh, maybe the system does work. . .
20 thoughts on “Venting”
Perfection. Just tweeted. PERFECTION. Did I already say that? xoxoxo
I hear you! Last summer my onc Dr. C. went on 4 months sabbatical…nobody told me…went for my Herceptin..nothing was scheduled, no files, no history, no follow-up did.not.exist. Wish I could say that…as that would mean the past 3 years were a nightmare and “I woke up” with no BC mets! Lol…so no explanation but lots of scrambles as I wasn’t leaving without my infusion!
There seems to be problems at our C.C. here.
What a pain getting prepped with your port and the angst that goes along with the scans…calls for an Ativan! Jo
Wow – you are so good to NOT leave without it. So good. I need to remember stories like yours when I pick up the phone again, Jo. Though crazy that it happened at all.
How frustrating! These are the times that you just want all of that time back that is wasted having to organize your care even though it seems like it should be someone’s job. You went through all of that scanxiety and no scan, hope your actual scan goes much more smoothly!
Me too! I have one this week, it’s a biggie. Thanks, Mandi.
Catherine, I love the way you turned a horrible experience in to something we could all relate to. It’s so upsetting. They are really making it difficult for you to have scans and schedule. Same junk, different country! OMG! xoxo- Susan
Also, how disrespectful of your time when time is so important! Ugh.
Well said, Catherine! The system can sometimes just roll over you and make you feel even smaller than you are. Good for you for speaking out – I wish every person in the medical biz would read this. I’ve worked in it for 35 years and it wasn’t until I became a breast cancer patient that I really started looking at things like this through my patient’s eyes. Delays matter. Miscommunication REALLY matters. They need to be accountable and more than anything, remember that the patient is owed far more respect than the system is! Priorities, eh?
Vent away! This sounds super frustrating. I love the idea of your advocate nurse. I read something recently about how CHEO has a new program – about a year old – called complex care where they do exactly this – kids that need to see multiple doctors for multiple issues have someone at the hospital now who coordinates their whole treatment and is their advocate. It seemed like such a brilliant idea, the kind of thing that makes you wonder why they never thought of it before. Sounds like it would apply to everyone in the system. Good luck going forward – kick some ass!
That IS a brilliant idea. I’m glad it is rolling out there, and hope it spreads 🙂
My girlfriend is a nurse patient advocate in that program at CHEO.
We definitely need that for us.
Yes, i totally agree. I hope that programs goes so well they roll it out across the system.
I get this completely. My therapist says that patients who advocate for themselves have the best outcomes but sometimes it’s more than a little irritating and even scary. It’s exhausting and stressful to keep on top of all the pieces. I often find myself wishing someone else would do it.
I know. I totally know.
Don’t blame you for feeling mad one bit. Lordy. No matter what sort of health care system we’re forced to deal with, driving patients a little nuts seems to happen too frequently. Hope the venting helped. xx
It did 🙂 Thanks, Nancy.
Catherine, do they not have nurse navigators for cancer patients there? That’s the sort of person you were referring to, that you had before, one nurse who smooths out the bumps so you don’t have to go through this bloody nonsense. Oy. I remember that I hung onto my old breast surgeon long after I really had decided I didn’t like her anymore, BECAUSE her medical assistant and her secretary were completely awesome, and they used to fix stuff like this for me. Someone who negotiates this crap for you is worth their weight in gold. This stuff makes us all crazy. xoxo, Kathi
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