frustration personified

I rolled up to my liver specialist appointment early this morning on about 3 hours sleep, but buoyed by the fact that finally I may get some answers and some direction with regard to my liver tumour.
Surprisingly I didn’t even have to wait long, something I consider unusual, even at my doctors clinic I wait at least half an hour or more.
So I followed the young looking female specialist into her room and sat down, full of anticipation and hope.  She had a quick look through my notes and said that they’d reviewed my CT scans at a meeting a couple of weeks earlier.  Good, I thought, on the ball.  Then she looked at what they’d written and asked me if I knew what I had.  Yes I replied, Focal Nodular Hyperplasia (FNH).  She agreed and said they were pretty sure it wasn’t hepatocellular carcinoma (HCC).  I thought well I’d be stuffed if it was as that is cancer and my diagnosis was months ago.  Then she proceeded to look up FNH on her computer and read through the description.  I was a bit dumbfounded by this, as she seemed to know nothing about the condition, telling me it’s very common (it’s not) and that she only really dealt with cancer patients.
Then she launched into a bunch of questions, that I answered as best I could, repeated herself numerous times and didn’t listen to a word I said.  I had to go over the same information numerous times and in the end she pointed to her screen and said they say here that the best approach is to monitor it.  Okay, I said to her, I’m not happy with that approach, I’ve already explained to you how badly this is affecting my life and I don’t think monitoring it is going to be beneficial to me.  She suggested we do another CT scan and I put to her that I’d already had 2 in 3 months and that another one wouldn’t show much more.
Then she said well I’ll write you a prescription for some stronger painkillers.  By now I was getting really angry.  I politely explained to her that I didn’t think that taking painkillers 24/7 was an option and that in the past when I’d been taking painkillers for my endometriosis that it irritated my liver more than aided it.  She looked at me as though I had just sprouted two heads and disagreed with me.  Then she asked me what pill I was on and I explained again which brand I was on and that it was progesterone only because of my endometriosis.  She then looked at me and said oh I was on that brand and it has estrogen in it.  I disagreed and said there’s no way it has estrogen as I’m not allowed to have any as it makes my endo grow faster.  Oh she says, well maybe it’s a different type.She also kept hinting that my enzyme levels were elevated due to drinking alcohol.  I lost track of the amount of times I told her that I didn’t drink alcohol, that I couldn’t drink alcohol because it left me feeling like crap.  None of it seemed to stick in her brain whatsoever.

I was ready to storm out of there, but I hadn’t yet got what I came for.  Finally she said with a sigh that she’d refer me to a surgeon, but it would be a long wait.  I said good, let’s do that.  So she took me out to the front desk and offhandedly asked the receptionist to book me in with a surgeon.  The receptionist told me the earliest available appointments were March and I said fine, book me in.  She said she’d send me my appointment as a letter.
I got out of there as fast as I could, fighting back tears and anger and frustration.  I could scarcely believe the offhand way I’d been treated by this “specialist” and by the complete lack of empathy she’d shown me.  If I thought that monitoring my liver tumour was the best thing for me, i wouldn’t have made the appointment.  If I wasn’t in a huge amount of pain on a daily basis and exhausted all the time, then yes, maybe I’d be happy to leave it be.  I know the surgery is huge and will knock me about in a big way, but living life like this is shithouse and I’m not prepared to put up with it.
I came home and went to bed.  I’ve just got up now as I’m working overnight tonight.  I still can’t believe how I was treated, but I’ve slept off most of the anger now.  Most of all I think I am so upset because I’d had such positive experiences through the hospital, working there myself for a year.  But I guess you can’t account for everything and everyone.
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~ by Fen on January 15, 2010.

5 Responses to “frustration personified”

  1. Farking hell, I'm sorry you were treated like that. But good on you for standing your ground and insisting on more suitable support. *hugs*

  2. Hey. I just found your blog and was having a little look through it and saw your 100 Things list and was like "zomg! I can relate!"Anyways…just wanted to let you know that your blog now features on my RSS feed, so make sure you write stuff I'd be interested in reading :p

  3. Yeah Cranky, I'm a stubborn fuck and she wasn't going to fob me off no matter how hard he tried!Hi D.A. nice to have you reading my quite uninteresting blog. I'll have to see if you have one to add to my feed too 🙂

  4. Yes – to the having a blog part.No – to the having it with RSS-ing.My blog is mindless drivel and insecurities shrouded in pretentiousness.

  5. My blog is mindless drivel and insecurities shrouded in pretentiousness.Aren't most blogs, ya daft bugger.

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