I had my last in-hospital treatment today and from now on, I will self-administer it with an injection at home every fortnight again. It is much better that way, as the drip version is a large dose and it gives me a headache and makes me tired for a few days. The at-home injection is a smaller dose more often, but it is far lower. As long as it works, I don't really care which, but it is far easier to have it at home of course - though I don't like the jab for some reason. It used to be so easy a few years ago when I first started doing it, but a couple years back I got some kind of anxiety from it, and I would sweat and be filled with some kind of dread, even though I had done it dozens of times before. Quite strange. However, I am over that mostly now.
The hospital I visited is close to a lake and there was still some mist burning off the surface in the sunshine. It made for a great view of the water toward the city and the strip of forest on the other side. At this time of year, there aren't many leaves left on the trees, but the ones that have held on, are in their late fall colours.
The treatment takes about four hours, with two for the infusion and another two for waiting around to see if there is going to be an allergic reaction. I have been on this medication before a couple years ago, but because of the things they had me on between, the risk of reaction has gone up. However, this was the third infusion with no signs in the previous two, so the nurse let me go an hour early, rather than me sitting around.
However, that is also why I didn't have time to write earlier. I decided that I would not write while getting the infusion, because where the cannula is put in the crook of my arm, when I bend it it can stop the flow and the machine beeps. I figured I would have time to write after, but after flushing the line, I only had twenty minutes. And once home, I had a semi-ill Smallsteps to spend time with. It is good that she can be at home alone by herself for a while, but it sucks to be sick at home alone, even if only with a runny nose and slight fever.
To make up for it, I picked up some sushi (her favourite food) for her lunch and sat with her while she ate. After that, I had time for a short nap before we played some games together and talked about random stuff. A lot of our conversations are about the way things work, like the body and she had questions about why I need treatment for my stomach. So, I found a drawn picture of the intestines and talked her through it. It isn't scary, but I think that since she doesn't really comprehend it all, it can be scary for a kid, because it is unknown stuff that they have little visibility or insight into. For her at least, having it explained gives her some power over her feelings and then she is also more interested in shifting the conversation onward. So we talked about how nutrients go into the body, as well as toxins.
Since I am unlikely to live a long life, let alone a healthy one, I am glad we are having these kinds of conversations as we go, without them being serious. We talk about serious things, but I make jokes and use silly examples and make the conversations more interesting for her, in the hope that some of it will stick and she will be one of the dwindling number of people who looks after herself as a whole, not just the bits she likes. I think we should all consider our bodies holistically, and then work out how to balance the individual facets that make up the whole.
I wish I had some of these conversations when I was a kid.
But here I am, playing an impossible game of catchup.
Taraz
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