As you all know, I have Ewing’s Sarcoma (if you don’t, then what the hell have you been reading whilst looking at this blog? :P; anyway, I shouldn’t insult my readership). However, what you may not know is that I also have epilepsy.
They say lightning doesn’t strike twice (the clichés are flowing thick and fast tonight) but in my case, it obviously has. And it’s bloody annoying.
Let me start from the beginning. A few years ago, I went to Southampton General Hospital, the Neurology department to be exact. I had some electrodes attached to my head – very Star Trek and they made me do various stuff, like stare into a strobe light or hyperventilate, while a graph with four zizaggy (which is now a word) lines came out.
I’ve already told you, but if I hadn’t, you may have guessed that they were testing me for epilepsy. The doctor there, after examining my EEG graph and listening to my symptom description, immediately told me I had “Juvenile Myoclonic Epilepsy”
Now, luckily for me, this is a very mild form of epilepsy, and the worst “fit” I had ever had was a jerk of my leg or arm. He prescribed me some drugs, which I responded to very well, and the condition may as well have ceased to exist, it was that mild. If I hadn’t told you, you wouldn’t have known I’d had it.
And then Mr. Ewing and his Sarcoma came to town. And the chemotherapy started. And so did the problems.
Now, there are many perfectly valid (or invalid, depending on whether you define “valid” as “legal”) ways to pass out on your 16th birthday. But having your first ever full-on epileptic fit, in front of all your friends, at your party, is not one of them.
It was humiliating, not to mention a horrible experience. An ambulance was called, oxygen was put over my face, and I was taken to A&E. All completely unnecessary, as any (reasonably mild) epileptic will tell you – give them a few minutes and they’ll be up and bouncing around as usual.
But after the initial shock, comes the problems. It seems one of the chemo drugs, and I don’t think the the doctors have a clue which one, interfere with my epilepsy medication. This is obviously not ideal.
Now, where before my epilepsy was virtually negligible, it’s completely unpredictable. I’ve had 5 fits so far, with absolutely no discernible pattern behind them. I already have cancer. What the fuck did I do to deserve this?! I’ve even had a fit in my sleep. My fucking sleep. What is up with that!?
There are other options for my epilepsy, and with any luck (which I seem to lack) it’ll be under control. But I just felt like venting, and thank you for reading this far.