Wednesday, March 3, 2010

A notable day.

Today I had my regularly scheduled eight week transfusion (infusion?) of Infliximab. I arrived at St V's at 8.30am with quite possibly the worst coffee I've ever had (that wasn't made by me) in hand. It was weak as water and 3/4 froth. For a coffee house, it's pretty bad, although sadly, from this particular brand, it's just what I've come to expect.

But I digress. Today was one of those days that was full of all kinds of weird and wonderful moments. I wont bore you with the details of them all, just a few of the more notable.

After being admitted, I settled into the room. There was only one other guy there. He was about 60 and looked like he was having a bad day, hell he looked mean. Maybe he's having a bad life. He watched me as I arrived and pulled out my iPhone, laptop etc. I smiled and said hello. He just grunted. And then he stared.

And stared.

And stared.

I tried a few things. First I tried making polite conversation. Other than his initial grunt, he said nothing. I tried staring back, but seriously, this man must hold the world record for staring. He was a champion. He maintained a constant, unwavering stare the entire 6 hours I was there.

At one point when only he and I were in the room he spoke. It was the only time he spoke while I was there. He said "I have been to Brazil". I nodded encouragingly, expecting there to be a story that he was going to tell me about it. This is normal, I thought. Conversation. I was wrong. Periodically he farted or grunted, but other than that, there was nothing.

It was not pleasant.

Feeling very uneasy, but determined to ignore him, I turned my attention to other things. Twitter. Grey's Anatomy, politely chatting to a nurse, when quite out of nowhere, Staring Man snored. It was a loud, unmistakable, slightly drawn-out snore! The nurse and I looked at each other, my confusion clearly reflected on her face. Staring Man's eyes were wide open and he appeared to be... well... staring right at me. The nurse went over to him, peered at him from no more than 6 inches away.

"Hmph." She said. "He's asleep with his eyes open." and then, as she backed away from him: "That's creepy!". No shit, trying being in his line of sight. I tried to close the curtain, but it was almost immediately opened by a nurse who informed me that they must to be able to see me in case I have a reaction.

Which really brings me to the next notable thing that happened to me today. I had a reaction to the transfusion. I started feeling restless and agitated and a strong feeling of wanting to rip the needle from my arm and get the heck out of there came over me (and no, this had nothing to do with staring man).

It's hard to describe what I was feeling. My blood pressure shot up, which is impressive considering I normally have low blood pressure and my temperature spiked. I debated about telling them for a moment because Infliximab has basically saved my bacon and I don't want them to take me off it, but of course, common sense prevailed and I called the nurse.

That's when it occurred to me that this is how I feel after having Maxalon (anti-nausea medication which I am now allergic too). I mentioned this to the nurse who informed me that yes, they quite often give Maxalon in the pre-meds as a preemptive strike because many patients feel nauseous, and yes, it appears I was given it today.

I was tired, unnerved by Staring Man, irritated by the late start and now having an allergic reaction that made me feel like I wanted to crawl out of my own skin. I lost it. "Why would you give me an anti-nausea medication I'm allergic to when I'm not even nauseous???" I held up the bright red allergic alert on my wrist and shook it in front of her face. "See this thing? It's not a fashion statement. It's not there because it goes which my shoes! It's there so you know not to give me medication I'm allergic to! It has no purpose if you don't actually look at it." She mumbled something I couldn't hear and then told me to calm down. "I can understand why your upset but if you would just calm down"

"Listen lady" I said through clenched teeth ('listen lady/buddy' is my standard response when I'm desperately trying not to say, hey fucktard), "you gave me a medication I'm allergic to. I'm agitated and restless. It's what happens when I have this medication. I'm not freaking out. It's part of the bloody reaction." She told me to calm down again and I told her in no uncertain terms to go away.

Meanwhile, Staring Man kept up his ongoing vigil.

The nurse-in-charge came in. We had a similar exchange and she asked me if I wanted to lodge a complaint. I waved her away. I was in no frame of mind for that. Although I may lodge one in the next few days. I need to be clear in my head about what I'm actually complaining about.

Mind you, at no time did any of these nurses try to help me, other than taking my blood pressure and temperature. There were no words of reassurance, no soothing tones, no consulting with a doctor (that I was aware of at least) and no apology. There was certainly no "are you alright to drive home?" (which I did) or "will there be somebody with you at home, just in case?" (which there is).

Eventually the transfusion finished and a nurse came in and hurriedly took out the bunt and sent me on my way. She'll get cained later, since I'm supposed to stay for an hour after the transfusion or until everything returns to normal if there's been any kind of reaction. I think she was glad to see the back of the agitated crazy lady in 16b. I wasn't about to correct her mistake, I was jumping at the bit to get out of there.

I wonder if Staring Man missed me after I left?

I have deliberately saved the most notable thing for last. I went to see my specialist today. That's probably a blog in itself, but I'll save that for another day. The short story is that he decided to take me off the chemo drug. Harrah! No more Methotrexate. No more weekly injections at 9.30am on my day off. No more dry skin. No more hair falling out. No more monthly blood tests. No more nausea.

Joy of joy's. While he didn't actually use the big R word. He did impress upon me how much better my guts looked and my other test results were. Anyway, more on that another time. (Soon, I swear)

Staring Man aside, today was a good day.



  1. I'm glad you pimped your blog on Twitter! Don't be shy - I enjoy reading it.

    That is SUCH BOLLOCKS about them giving you the anti-nausea medicine. What a hideous experience for you. In fact, the whole day sounded horrendous, what with staring guy'n'all. I'm going to work "listen, buddy" into my repertoire.

    Fab news about the possible R-r-r-r-r-r... and ending of the methotrexate. Yay!

  2. Firstly, YAY!!!! That's great news. I'm so pleased for you.

    And secondly, sleeping with your eyes open? That's freaky. At least it wasn't a boring visit...

    I hope you do make a complaint. What if someone's reaction was life-threatening? That's very sloppy.

  3. I'm glad you whored your blog on Twitter too.

    I'm a first time blog reader, but a long time Twitter follower. Love your writing. You have a great turn of phrase. Funny. Entertaining. I've even put my partner @brismark on to following you. Be warned - he swears a lot in his tweets.

    I have no idea what Crohn's Disease, but I'm going to find out.

    Make sure you keep whoring your blog posts, so I remember to read them.

  4. Like the others said, don't be shy about pimping out your blog every now and again - it's good to read :)

    I guess you would have previously had the potasium drip at some point too - when they gave it to me, it felt like all of my veins were burning, and you could feel the machine when it pumped more in... ugh. To get off the need for a weekly injection too, that is great :)

  5. def keep pimping out ur blog! It is so good that you are going to be off the methotrexate. Eventually I have been told that is wat i will be taking for the rheumatoid athritis. Its not fun at all is it? I still cant believe they gave you maxolon injection. are you allergic to stemetil at all?