'So we will steer clear from radiotherapy and chemo for the time being'* 'PARDON' (says the voice inside my head). 'The scans show no change so that's great but will we be monitoring you continually.'
So as you may have gathered from that introduction I saw my neurosurgeon on Tuesday. As usual when I got to the clinic it was jam packed, but only in the section next to the desk, but down the corridor all of the seats were empty and the TV was off. So I wandered down to the end of the corridor, switched on the TV, chose the channel I wanted to watch and turned up the volume so it was audible. As a regular visitor I thought I may as well use the most of what was on offer. Anyway after another 2 hours of waiting to see my amazing Dr. I was finally called into his office. On the MRI report notes he had V.Good written, that was so beautiful to read! The fact that he mentioned radio and chemo therapy again startled me a bit. He had told me last time that it was off the radar but on reflection he didn't say I would never have to have either or both of these treatments. Next MRI is scheduled in 9 months. How on earth are you meant to choose a date that is suitable nine months in advance when you don't even know what you're doing in the coming week? Oh the joys!
Just as I was about to leave I asked whether or not I could go skydiving and bungee jumping. His facial expression showed concern yet, and I will make this well known to my mother that his answer was not a 'no'. He told me he wouldn't recommend it due to those bloody things called seizures, even though I haven't had one in over 4 years but really in the end it's my decision. So what do I do? Take a risk? Live a little? Or do I sit back and watch life go by? We also talked about reducing my medication but that means giving up driving for 3 months and if I have a seizure in those 3 months then we go back to square one. Sometimes it feels like a never ending cycle of down-heartening rules that I need to live by. He then went on to say 'I know we've got you wrapped up in cotton wool but...' In a way I was relieved to hear my surgeon say this because it kind of gave me a bit of justification for those moments when I actually feel trapped by so many things that my condition (terrible word) does to me. No this, no that, minimise this, maximise that. Oh well I'm still here!
I did have a migraine that day, it's the anxiety, the tension the uncertainty of what you will hear when you walk through that door and sit on that uncomfortable chair.
So in summary, even though I had a great night last night sitting on the banks of the river Torrens with some friends listening to The Rolling Stones playing at the Adelaide Oval I'm a bit flat today and you know what, that's OK, because as it is well known by many unless you have these crappy days you don't cherish the good ones.
In other news I currently have clinomania!
*Or something to that effect
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