fact: I have two brain tumours! If you want to find out more then have a read.
The last few years have have been full of many trials and tribulations but I will tell you one thing, I have learnt a lot about life.
Six weeks ago I was packing a couple of bags and making sure I had all the forms I needed to take to the hospital. My best friend came over in the midst of my flurried state and helped me with a few things, or rather calmed me down by helping me finish one thing before I rushed off to do another task. After she left, which involved a rather short farewell because neither of us wanted to cry,
I finished off all my packing, had a shower and got into bed having decided that I would share the link to this blog with my Facebook pals as well as writing a bit of a hmm... testimony. Testimony is probably not the best word to describe it but I'm not sure what other word I would use. It was a really hard task for me to do, I'd already posted pretty much 'The Story' of the last 5 years of my life but hadn't shared it with many people and everyone I had shared it with knew about the story already, so hey! I wasn't sure what the reaction would be, if anyone would read it or whatnot but I'm glad I shared it. I was really surprised and really touched by the well wishes I got, especially from people who I didn't have much contact with anymore. Once again, I'm glad I shared it!
Anyway, I suppose this post is for a couple of reasons, the first one being to express that I agree that time flies and the second to say thank-you to those who have read my blog, whether or not you are reading this now, and have supported me. I honestly thank-you!
Look at me now, I'm doing alright! Let's see how much more I can improve in the next 6 weeks.
Knowing me, I will post another blog tomorrow because of the six week anniversary! It might not be much to you but it's a hell of a lot to me.
Ughhhh my hair was horrible this afternoon. It was just horrible. Dear male friends I now understand your hair woes. I did however have a very expensive haircut the other week. Think of what they put in my head to help it heal and the hourly rate of the apprentice hairdressers/qualified doctors? Unimaginable for a teacher and a hairdresser combined. People at Zinc Hairdressers take that, or go back to study!
If you're not sure what's in my head this song may give you a hint (yes my brain is still there). Yeah I actually like this song, and I bet a lot of you do too. If you're too proud to admit that you do just say 'yeah it's alright and I like supporting Australian artists (Sia)' that's a good one!
p.s. I'm annoyed I don't get some special note in my passport telling people at security that I simply have metal in my body and that's why the metal detectors go off every-time I walk through the security section. Damn!
Have you ever tried to take a selfie? Actually just a picture of one of your eyes! It's hard work. I couldn't do it. I wanted to do it so I could show off how far the healing process of my eye has been. It will still be a few more days before it is back to how it looked before surgery took place but my goodness it's a lot better than a week ago. I posted a photo a couple of weeks back that showed the staples in my head but if you look closely at my left eyelid you will see that it looks like it had some incredible makeup artist come along and do some fantastic eye-makeup for me. Alas it was a bruise, a bloody nasty one. It wasn't just the skin that was bruised but the eyeball and as that has no skin covering it imagine the colour it was. I can't remember, as I was under rather heavy drugs, but I couldn't close my eye because it was too swollen. I don't get how that works. Anyway surgery was 4 weeks ago yesterday WOOT but as I said the eye has a bit more healing to do. I don't know how I would cope if my vision had been impaired through this surgery. I love to travel and what I bring back from travel, apart from a few trinkets, is the memories of what I have seen and experienced. I honestly don't know what my life would be like right now if my eye wasn't OK.
Apart from that the last week has been interesting. I'm tired, once again expected. I feel the most tired around midday-3pm. I'm not sure why. I admit I haven't done enough exercise and I question myself as to whether this is why I'm not sleeping well at night or because it is actually a weird feeling to not be woken up every couple of hours as I was at hospital by nurses taking blood or giving me drugs at 3am in the morning. I've had some weird dreams as well. The type of dreams where you try to wake yourself up from but when you wake up you can't remember what the dream was about and are asleep again withing 26 seconds. I'm hoping they stop soon. Could it still be the drugs from the hospital wearing off? Possibly! Actually I have no idea. I forgot to ask the neurologist on Wednesday dang it!
So yes, I saw my neurologist again on Wednesday. I was hoping he would have the biopsy results to talk through with me but nope, this was not the case! I won't know the actual results until next time I see my neurosurgeon in December. I'm assuming this means it's not an urgent matter as I can't see him before then and he hasn't contacted me. In addition, at the hospital, the neurosurgeon and the neurologist have said they don't expect radiotherapy will be necessary but we shall see when I speak to my neurosurgeon later. I passed on a report from Hamstead to my neurologist and he wasn't shocked by anything. It was a long appointment, which like every other 3rd or 4th day in hospital had him checking my reflexes and eyes. I passed with flying colours, well at least I passed. I went to pay the dreaded bill after discussing what needs to be checked and when I need another appointment and the lady at the desk informed me that my Dr. had bulk billed me for that session. WOO HOO otherwise it would have cost me $220ish dollars. Praise the Lord! I have no sick leave left and am currently waiting to see if Centrelink will pay me sickness leave. That was an alright way to end an appointment I always dread, even though my neurologist is really nice.
After that I headed off to Centrelink to lodge my sickness claim. I waited about 40 minutes, I felt like I was going to fall asleep at one stage, until someone was free to help. I handed over all of the necessary information and hopefully I will get some money to help with bills and possibly let me go out for a coffee once a week. Lastly I went over to the gym and gave them a copy of my sickness certificate so that they don't charge me whilst I'm unable to do strenuous activity.
Overall I was out doing this simple chores from about 10am - 3pm and I was so tired by the end of it all. It's frustrating but as I finish writing this it's almost 12:40am and whilst I'm tired I don't feel as tired as I did at around 3pm. One of the main things I have definitely learnt over the last month is that the body is an amazing thing/object/mechanism and this odd sleep pattern is a simple example of the complexities of it. It's not because I've been out partying til the wee hours of the morning. I've done nothing, some days literally nothing. For goodness sake I only lasted until 9ish on Saturday night and was just out for dinner.
As I was writing this blog, with a heavy focus on eyes at the beginning, it reminded me of this quote (pretty close to what he said) from a friend when I was in year 12 that I doubt I will ever forget. 'Cass you have green in your eyes!' I was bawling my eyes out at the time, about what I don't know. Typical 17 year old boy :D I admit I love Coldplay (mainly their early stuff).
Well there's no doubt the last week has been challenging but I'm home now.
To start with on Monday I had a volunteer from Hamstead take me out to Flinders eye clinic so the Dr.s there could check that my eye was OK and this terrible redness was slowly going away and that my vision had not been damaged. All is fine, my eye will probably just be red for another week. My Dr. at Hamstead came to talk to me on Tuesday to tell me that they were happy with my progress in all the areas they were watching and testing me on. I hated the fact that I was being assessed at every specialist meeting but that's probably because I'm a teacher and I felt it was pretty much a pass/fail assessment as to when I would be going home as well as it being clear to me most of the time as to what they were testing me on. I admit that the first few assessments I did in Flinders went terribly wrong. I was on so many drugs and could not concentrate for more than about 2 minutes, which to me felt like half an hour. I couldn't even remember how to lay out the numbers on an analog clock the first time I was asked to, that is how out of it I was. I knew I was most probably failing but I reminded myself what I was going through and that in the end, with all of the help I was receiving, I would get there, get back to being able to work and stay focused.
Tuesday night I was feeling good, I only had 2 more sleeps in my creaky hospital bed, a few more specialist appointments and then I would be in my own comfortable bed and not have tasteless hospital food to eat. But does my life exist without drama? No, of course not! Once again a spanner was thrown into the works. On Tuesday I had a bit of a headache. I took some Panadol and felt OK but come Wednesday the headache was back. It turned into a migraine. As I suffer migraines my neurologist prescribes me medication to help it and as they did not have this medication at Hamstead they gave me something else to ease the pain I was in. Migraines are terrible so if you don't have migraines I urge you to be aware that if someone suffers migraines they are really unpleasant so please be kind to them when they are suffering a migraine. Back to the topic. The medication they gave me at Hamstead did hardly anything apart from make me dizzy and want to sleep. After I asked for the stronger med, o...somethingorother again, the nurse said she would go get some for me but instead she sent the Dr. into come and see me. She did the same tests as she had previously and explained that because I had just had brain surgery she would consult with the other Dr. on the ward and decide whether or not to send me to RAH to have a CT scan to make sure my brain wasn't bleeding. She explained that after the last surgery they did a scan and there was some bleeding on my brain but that was typical after what I had been through and it would, I suppose you might say, drain away. I believed her but an hour later I was in an ambulance, first time for everything, on the way to the RAH! Lights really hurt my eyes when I have a migraine so the next few hours, approx 5, weren't the nicest. There was a good hour where I was in a bed at the hospital in the ED waiting in the corridor because as they were bringing me back from having the CT scan an older lady came in with apparently terrible constipation. This was one of the only times where I was a bit frustrated that I was just kind of forgotten about. I thought to myself 'hmmm constipation versus possible brain bleed', I thought I deserved a bit more attention and privacy. I got over it. They didn't let me eat or drink until I had had all the tests done. The tests came back clear but the migraine was still there. The Dr. in ED said they didn't have the med I take for my migraines in the ED, ridiculous, so suggested that someone bring it from home but in the meantime they had ordered another ambulance to take me back to Hamstead. I got back to Hamstead at about midnight and crashed into bed after taking some more useless pain killers. In the end my migraine worsened over night and didn't clear until my dear mum, who was flying back from Qld for a work conference on Wed night, was able to bring me my migraine medication the next morning at about 10am. Wasn't the nicest night!
The doctor came and spoke to me yesterday morning and said that all the specialists were happy for me to leave as all the tests were clear but because I had had my migraine the night before it was up to me. As I had constantly reminded myself the whole time I was there, I was going to use the professionals I had around me to the best of my ability so I actually didn't say 'nah I'm out of here' rather I explained that if I didn't feel back to my post-op usual self I would stay another night to see how I felt. I think that surprised but also pleased her.
I had my last OT appointment at 11:30 which was cooking myself lunch, so much better than the hospital food if I do say so myself. At the end of that I realised I had not felt tired at all and it was then I realised I was fine to go home. To finish off my short stay, honestly was in comparison to other people's stay, at Hamstead I had a large meeting that involved all the specialists that had seen me as well as family. We went through a whole range of topics from getting back to sport and what I should avoid eating and drinking for a while then said our goodbyes.
I can't express how much respect I have for the Dr.s, specialists and nurses who looked after me whilst I was in hospital. I could not do their job. As for my family and close friends, thanks for being so caring towards me, even if it took me 3-? days to reply to your text messages and I asked if you could please hold off your visit. I feel so cared for.
It was a great feeling to leave Hamstead. I feel like I've accomplished another small step in this journey to recovery. I'm seeing my neurologist on Wednesday, I'm thinking he'll go through the biopsy results with me so we'll see how I feel then but for now I'm just going to enjoy the next few days away from hospital.
