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...

was it a leap year?

731 days ago (unless it was a leap year which means it would actually be 732 days)!

That is all!

The P word

I don't know anyone who likes to admit that they have seen this specialist. Maybe it's just an Australian thing, who knows! I think there's this stigma that if you access this service then people see you as if you have no emotional stability and are unable to handle life (rather broad description). I think there is next to no truth in this as I'm pretty sure a lot of us have come to the realization that we can't control a lot of what happens to us in our lives and as this is the case can we have full control on how we feel about certain things? You might say yes but I wouldn't entirely believe you. Different experiences bring different emotions with them and although the way you feel about the same situation might change I beleive there will always be an initial emotional reaction, that we don't choose, that rears its ugly or beautiful head. For example I don't remember being full of joy moments after it was recommended that I should have brain surgery.

Anyway, I realised a month or so ago that over the past 7 months I have been full steam ahead trying to return my life back to whatever normal is. I put 98% of my energy into getting back to work, going to the gym, socializing, gaining my drivers license back and trying to make myself look less like a half shaved two headed zombie, so much so that I tried to push a lot of unwanted emotions away. During my appointment on Monday I was exposed to a way of thinking that explores dealing with clean discomfort and dirty discomfort. Some of you who read this might know all about it but if not and you've done the whole 'I've got no time to feel like this, go away stupid emotion' then maybe check it out.

I'm no expert and never want to be in this field of work so I'll stop there.

Don't think of a pink elephant!*

How'd you go with that?

I failed.

Gut instinct or did you choose not to think of it? ?

See I didn't mention the P word!

Anyway, time to get ready for the second lot of semi finals for Eurovision (yes some of us watch this in Australia and yes we are behind in the broadcast so no spoilers please)

Actually I'd probably prefer to see these guys tonight at the Entertainment Centre (it's sold out dang it)!

* This test might only work if the command is vocal. Like I said, I'm no expert!

Well that escalated quickly!

I realised yesterday that I never really wrote about what surgery involved and how I felt afterwards. The day, or the day after surgery, some of my close friends had been trying to contact me and were a bit concerned that something wasn't quite right as I didn't respond to their text messages inquiring as to how I was. This was because it took almost all my energy to read one, so replying seemed impossible and also because I didn't touch my phone for about 3 or 4 days. Most of them contacted my mum so the word spread that all was OK.

In all honesty I don't really know what surgery involved apart from a huge loss of hair, some very sharp instruments and a lot of people. I obviously don't know how it physically felt as I was in a deep sleep, so to speak, so there isn't too much to share about the actual operation, well none actually, but I do have a few distinct memories after I woke up from this deep sleep.

I remember that when I woke up after being in surgery for 6 hours I was dry retching, got taken to have a CT scan before I even saw my family (I may have this part in the wrong order as I was on very heavy drugs),  had tubes and drugs stuck in me and asked for food and water which I was then denied for the first few hours after surgery. I also remember being woken up every 15 minutes to start off with and being asked the same questions 'What's your name?', 'Where are you?', 'What's your date of birth?' 'What's the date today?'. After what felt like a few hours, and it may have been, they asked me these questions every half an hour, then it went up to an hour and by the second week in hospital they stopped waking me up in the middle of the night to ask me and I only got asked once a day when they came to take a blood sample. I do remember that one day my answer to what was the date was about a week off. Mum told me after the specialists left. Oh well, that was how my brain was working. It was working slowly. Furthermore I remember that for the first two or so days I wore long sexy medical socks and had what I would describe as balloons that inflated and deflated at a steady rate strapped around my legs. I also realised that I had those tiny little tubes that sat near the nostrils pumping oxygen into me. I'd always thought those nasal tubes would be uncomfortable yet I hardly noticed them or just didn't care.

I also remember how lovely the nurses I had on the high dependency ward were, they were really admirable. My parents talked with a nurse who was pretty much constantly with me and discovered that she was from India and that her mum, who still lived in Inidia, had been taken to emergency the day or the day after I came in as she was extremenly ill/or had a bad accident (can't remember which one) and was likely to pass away. However this nurse had come to work and was so kind and on top of all that needed to be done. I was amazed when I found out. When they moved me to the neuro ward I did get a bit frustrated with a few nurses as a few times I pushed the button to get help for something and it could take a while for them to check on me. I don't mean just 3-5 minutes I'm talking 10-15. One time it took them about half an hour to come see if I was OK. One night I was so frustrated that I got out of bed at about 3am and went to the main desk and told them that I had been waiting ages and wanted help straight away. I was probably very forthright delivering this message as after that they came rather promptly if I pushed the button.

A positive thing after the surgery was the flowers that people sent me! Oh the flowers. My little space had about 7 bunches of flowers in them at one stage. I love flowers so they brightened my day. However when I say brightened I could not stand light for the first 3 days. My curtains were constantly closed and the light was off even though the majority of the time my eyes were shut but the burst of colour, although it was dim due to the lack of light entering my space, and the beautiful fragrances that flowed from the flowers made my tiny space bearable. The space was bearable for me but for my parents it wasn't that bearable as I was also really hot, apart from my feet freezing a few times, so asked for a fan. My poor mum was freezing as she sat there yet I just had the sheet on top of me and fan pointing towards the bed. After about a week of the fan pelting I was ok. That was weird.

My back and legs were really sore as they did not get me out of bed for about 2 days. I couldn't walk without support for the first 5 or so days and definitely didn't walk far. A couple of other things happened post op  including that I got confused a bit, lost concentration quite easily, had a terrible puffy red eye (I posted a picture in a previous post) and my bit a speech up mixed. I actually wasn't bored until the last couple of days at Flinders and if I was I'd read a bit, do some puzzles and then fall back to sleep. That's all I can really think of at the moment, only a few tricky things to overcome ;) but hey I believe that a strong mindset will help me have as strong body again! It's working but taking it's time.

In all honestly I am greatful to be alive everyday, to be able to see, smell, taste, touch, walk, talk and be independent. I have had a few days where I have been down but then I remind myself 'Hold up Cass remember where you were almost 8 weeks ago!'. This song has been one of my favourites over the past few years and as it says it's nice to be alive. I agree!

Well I hope this post didn't scare you. I'm OK I promise. I also promise I don't look like a zombie anymore :) It has taken me quite some time to write this post so thanks for reading!

What now?

It's 10:40pm Sunday night! I've been in hospital for almost 2 weeks today. The first week I was so out of it but i'm alive. I haven't posted for almost 2 weeks but I have made it through the biopsy! I don't think the next few posts will be that long. I've thought about blogging for a few days but I couldn't type more than 1 SMS then feeling I needed a rest. 

I'll just try to keep everyone up to date with results on the biopsy etc. At the moment I don't have any results to share but I have been on a restricted fluid diet intake. The first 3 days I was on 750 ml fIuid (all fluid) and am now on 1000ml!  I'm hating this, it's really tricky. There's  numerous reasons as to why this is the case but I'm hoping tomorrows test results let me increase my fluids again.

That's really the smallest of my woes at the moment but it's not helping me. It's really hard to not just go a drink a big glass of water when that's all you feel like going to do. In the long run it will take a lot longer to get back to better health if I just do what honestly feels best for me but so far so good.

That's it for now. I've got to see about 14 specialists tomorrow and see what happens this week. I'll let you know! Try to get some shut eye amongst the snorers now! 

This photo was taken just over a week ago! Yeah not that cool!