Lead up to today's bad news

To get to the medical news, see the next post. This post is just about the lead up to the doctor's appointment. My description of the day up until I saw my surgeon is long and probably tedious, but I think it is important to express the entire aspect of today and how trying this experience is becoming. External fixators may look cool, but they require an incredible amount of physical, emotional, and mental endurance. External fixators are tedious despite how epic they look.

I used the previous post to vent, and did venting ever feel good! It really helped me release some of the feelings I had about today's hospital appointment. This is not to say that I don't feel stunned anymore or am no longer a bit in disbelief, because I am and still do, but I do feel a bit calmer about things. Given that some of the raw emotion has worn off, I am now going to try to give as best an explanation of what is going on as possible. I am not only doing this to help me sort things out straight for myself, but also to document what happened for my personal record and to provide other people with a glimpse of what can go wrong with external fixators and distraction osteogenesis. Plus the emotional roller coaster this whole process is. Let's not forget that.

My mum and I arrived at the fracture clinic at 8:30. I was already in a so so mood because of how early I had to get up. I generally wake up, do the turns, take my medications and go back to bed in order to sleep through the pain that quickly follows any adjustments I make to my fixator. The early morning appointment prevented this, meaning I had sit through the pain. Grin and bear it, so to speak. I had been sick with a cold for about a week and had slept poorly during the night, so that didn't help matters much. On top of that I have been dealing with an increased amount of pain for a little over a week. The pain around my pin sites was just awful, especially at night. Not even the quick relief morphine on top of my regular long acting hydromorph contin was helping; it was only taking the edge off of the pain instead. In contrast to pain, the numbness on top of my big toe was quickly spreading throughout the entire toe and I began experiencing numbness in my heal and the bottom of my foot. This does not a happy camper make. Although I was in a good mood in the morning, making lots of jokes and being a bit rowdy in general, the closer the appointment time got the more nervous I got. I knew that I was getting close to re-growing the entire length of my missing tibia and needed the reassurance that x-rays provide. So I wasn't in the best of moods when I got to the fracture clinic, although I was determined to be as friendly and polite as always. This resolve did not last long.

Apparently, someone at the hospital decided that the fracture clinic needs a number system. Walk in, grab a number, sit down, and wait to be called. In all of the four years that I have been attending this fracture clinic, there has never seemed to be a need for a number system. The maximum time I probably ever had to stand in line at the reception desk was seven or so odd minutes. No big deal. I stood in line for a bit until the receptionist recognized me (perk of being a long time patient, I guess) and told me that there was a new system and to grab a number. I sat down with my trusty number two, a bit disgruntled at that point, and then the receptionist called out number twelve. Oh dear... and then I began hearing tidbits of conversations - other disgruntled patients, upset about the new system. People do not like change. Today, I was on of those people. Strange, because I am generally pretty easy going. So I am sitting there, biding my time until my number is called, not knowing how many numbers are left before we start back over at one and looking out over a packed room of patients. This could take a while.

A few minutes later, two guys from patient transfer walk to the desk while a third stands in the hall, minding a patient on a stretcher. They usually get to cut the line but today, like everyone else, they are told to grab a number. And there we all sat, grumpy, some people complaining, generally unhappy that we had to be there to begin with. Finally the numbers switch over back to number one. Shortly after I hear it, the magic words: Number Two! I slowly get to my feet, leg stiff and sore, and grab my crutches, number and health card in hand. But it was not to be... the receptionist realized that the guys who came in earlier were indeed from patient transfer and could therefore indeed jump the queue. And that leaves me starring, somewhat in disbelief, at the receptionist who was maybe four steps away from me and saw me start to get up. I sit back down, surlier than ever. My mum looks livid. As if living with an external fixator isn't bad enough, now I have to play a stupid game of number calling and trying to get up only to have to sit back down.

I sit and wait some more until finally, some twenty minutes after I arrived, I am called to the reception desk. Now remember, I had never ever had to stand in line for more than seven-ish minutes before, often even less. The receptionist tries to be friendly but I am having none of it. She explains the new number system and how it was implemented the day before. I tell her I am unhappy about it. She goes on to say that everybody has to get used to change. And that's when I'd had it - my resolve to be friendly and polite had completely faded away. I retort: "I have pieces of metal sticking out of my leg. After adjusting to that, I don't do a lot of changing anymore." And I meant it. My ability to change has been severely hampered by life with an external fixator. Everything in my life is affected in some way or another. Everything had changed; there was no room for more change, for stupid pick a number related change that means you have to wait twice as long as normal to check in. I was getting pretty disgruntled. And then I dared ask that all important question: "Do I have to do this again after I see my surgeon to make a follow up appointment?" Yes...

Needless to say, I was not happy. And I am always happy, so that is really saying something. I patiently put up with long wait times because I know the fracture clinic is crazy busy and if I expect my surgeon to spend extra time with me when I have questions, thus delaying him, other patients do to, and that is okay. I let it slide that I can never get an appointment time that suits my mum or I because the computer system only allows appointments to be booked in a specific order. I am fine with sitting in a room with people who sometimes yell, smell, or stare at me because everyone there is in the same shitty boat and deserves equal health care. But I will not waste twenty minutes of my time both before and after an appointment just because a stupid new number system was put in place. See? I am not in a good mood today. I started off in one, but the whole fixator ordeal plus the ridiculous new waiting room/reception system tested my limits. Tired, nervous, in pain. Grumpy is expected.

Moving forward though, I sat in the waiting room for a while reading a book about the black plague, being the nerd I am. Did you know that some armies where rumored to fling plague laden corpses over the walls of an enemy city with catapults? Who knew! After a while I was called for x-rays and had a lovely little chat with the x-ray technician. She remembered me because she recognized my angry bird crutches. Hear that fixtor? You aren't the number one defining thing about me all the time!

Somewhere between nine-thirty and ten I was called from the waiting room to the fracture clinic itself. I was placed in an all too familiar room with a stretcher, chair, and dual computer monitors. My x-rays were already displayed on them. I lay down on the stretcher, tired and sore, while my mum began the ritual of taking pictures of my x-rays with my cell phone. Everything goes on the blog! I chatted a bit, on and off, with the two ortho techs working at the clinic today. This was pretty fun. I learned that nobody in the Niagara region will touch an external fixator with a ten foot pole - this kind of stuff is not done there at all. The first ortho tech took a while to look at my x-rays and ask what was going on and I gladly obliged with my answers. See, I can totally be friendly and polite! He said that this is the type of stuff you read about in textbooks, not see in person. Does that make me a walking textbook case!?! His comment reminds me that while my fixator is normal to me after so many months, external fixation and re-growing bone definitely is not.

It took a really long time for my surgeon to come and see me. From where she was seeing, my mum could see him walking between cubicles and rooms to see different patients. We weren't sure why it was taking him so long to see us. Usually we are seen pretty quickly, probably thanks to the extreme piercing I am sporting on my leg. But not today. I cannot be sure, obviously, but I think that he needed a quiet moment to speak with us. I would imagine he might have seen my x-rays long before I was called into the actual clinic area. But then I could be wrong. But I like to think however that he tries to give me a bit of extra time to ask questions and what not because of how complex my situation is.

That being said, I was pretty pissed off. This had nothing to do with having to wait for him, because he is a very busy hard working doctor and I respect what he does a tremendous amount. It was more the combination of nerves, fatigue, pain, discomfort and my experience in the waiting room. At ten I told my mum that if I didn't see the surgeon within half an hour I would simply walk out. All I wanted was to go home, have a cup of tea and go to bed. Obviously my remark was half hearted because an hour later, when the surgeon walked in the room, I was still there.

I have said it time and a time again, but it is worth repeating: my surgeon is a stand-up guy. He has amazing surgical skills, he is kind and compassionate, he always takes the time to answer questions no matter how straight forward the answer might seem, he has a great besides manner. Even more importantly, he talks to me like we are equals rather than talking down to me. He says that although he does the surgery, I am doing all the hard work. He has respect for that. And that is why I respect him.

As he always does, my surgeon walked in and asked me how I was doing. I did not sugar coat things today. I am always friendly, polite, positive, upbeat. But not today. I remained polite and treated my surgeon fairly (it is not his fault how this process makes me feel; he is doing the best to make me better). But I was not all positivity, sunshine, and daisies today. I told him that I was done, that I couldn't do it anymore. I said that I wanted the frame off and if I could do it, I would use a drill to get it off. Of course, I would never do that. That would undo months and months of hard work done by both him and I. But I needed him to know that I was struggling a bit. It is strange, because I am generally so upbeat and positive. But the last week of being sick, increased pain and the new and worsening numbness in my  big toe and foot was wearing me out. He completely understood. And then we turned to the x-rays.