To do list

This Tuesday saw me heading to beloved Clinic C. After the usual lengthy wait, three hours this time, I was called in to see a different Dr.. This took me by great surprise and I questioned the new to me Dr. numerous times to make sure I was meant to be seeing them and not Dr. Straight to the Point, who is the only ever neurosurgeon I've had an appointment with. I was a little bit frustrated with this meeting because after they had talked about the larger glioma they were about to farewell me until next year but then I questioned them about the other glioma. The look of "what?" went across their face and then a lot of rustling through my file, which is getting even bigger, took place. They eventually found the information and re-assured me that there was no change with that glioma as with the other. Whilst they were looking though all of the notes they were talking in medical terms and I just wanted to stop them and remind them that what they were saying makes no sense to me so please talk to me in terms that I can understand. I sat there and thought what if I was writing a report for your child and wrote about me scaffolding them within their ZPD and encouraging them to increase their associative play as well as me seeing a change in their representational use of objects within their sociodramatic play. Would I do that? No! I wonder why not?! Anyway you're on your own until next June little gliomas. Emotional exhaustion occurs each time these meetings come around, you'd think I'd be able to handle these meetings by now.

This week was brain injury awareness week in Australia. The video that I have posted below came up in my facebook newsfeed. Although I find it a bit over dramatised, in some instances, the words the lady speaks rang so true for me a couple of years ago. I related to every single thing she said and her mentioning venturing into shopping centres, holy smokes, I recall how much of a horrendous task this was to do! I'm lucky because such experiences that the lady talks about no longer occur to me and I never want to experience these again.

Anyway in other parts of my life quite a bit has changed and these changes have been positive (mostly). Life rolls on, seasons change, people come and go but I'm still here trying to...

Red Bull does not give you wings!

'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

Today I am thankful for...

As I left my neurosurgeon's office today I got all teary! The tears that were welling up in my eyes were tears of relief. To put it plain and simple, everything is ok! The lesions haven't increased in size and he is really impressed with my recovery.

Today was the shortest appointment I have had with my Neurosurgeon and I only had to wait 40 minutes to see him, fastest time ever. We had a quick look at the MRIs, he asked a few questions, I asked a few and decided when I should have the next MRI. As usual I was quite anxious and he told me to relax, reminding me that our human instinct can be to worry or be anxious before there is anything to worry about. How true is this. I'm going to try very hard not to worry.

The outcome of today's appointment is something that will definitely make it into my gratitude journal tonight!

and two hours later!

I saw my beloved neurosurgeon again on Tuesday. He's actually a really nice guy, just straight to the point. At first this was obviously a hard thing to accept with him telling me he thought it would be best to have brain surgery to see what mischief my brain was getting up to. This time I was happy for him to be straight to the point about my health situation as it was a positive outcome. My two gliomas (now I'm learning and starting to understand the lingo) are both different. Which is apparently quite uncommon but the positive side is that the Dr. said that I did not need radiotherapy or chemotherapy. I was so happy when I heard this. I think I asked him 'so I don't need radiotherapy or chemotherapy?' at least twice throughout the appointment because I wanted to make sure I had heard correctly.

I will still have to have them monitored for the next 10 years or so but for the moment I'm happy. I was also happy that he was happy to see how well I'm recovering as he admitted to me that he was quite concerned when he saw me in hospital the first few times as he thought my cognitive functioning had been impaired. I thought to myself 'Pfft I'm the smartest cookie in this town!'.

Oh and the last highlight, not the biggest though, was when he said to me 'who's telling you this information? You have to enjoy life.' after I talked about how the other Dr.s had said to me not to touch alcohol for a year. So last night at the pub I had one alcoholic beverage. I felt like a rebel. Well he's the Neurosurgeon and has more knowledge on the brain than all of the other Dr.s I've dealt with so I trust him.