• My Brain Tumour

    My brain tumour and rehabilitation story is neither straightforward nor conventional, so here it is:
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    Going back a couple of years, pre-surgery, I saw 3 different Drs who all diagnosed sinusitis and prescribed things like anti-allergy sprays, antibiotics, nasal flushes, nasal spays for blocked sinuses and such.  I think I was given 3 lots of antibiotics then I went to emergency and was put on a saline drip in short stay but I was told unless I would die in 48 hours they couldn’t do anything, so I was sent home. Intuition told me it wasn’t sinusitis and I should persist.  To be clear, I wasn’t a sickly person, so for me to be this ill, I knew something was very wrong!
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    My local GP then referred me to an ENT specialist but said I’d need a CT scan first, luckily there was a new local one so off I went.  During the scan they injected me with contrast (I hate needles, but I had to get used to them) then asked how I’d got there (driven myself), so they called my Mum and said I had to be driven straight to hospital as I had a brain tumour.  While I was waiting, I rang my boss (at this point it was about 5:30pm) and told her my diagnosis and that I was told I’d be off work for about four months (a lie).  Mum drove me to hospital and after over eight hours of waiting and some stern words, in the early hours of June 25th 2015 (2:45am to be exact) I was admitted to Monash Medical Centre.  I wrote a group message to some friends and also to some people I thought were friends, was visited by my boss and best friend (separately) who bought things like flowers, magazines, chocolate and socks.  On June 27th, they did a six and a half hour craniotomy. I realize that was a babbling blur, but it was a bit like that actually living it too, I can’t recall any details.
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    I should mention, there was a list of possible risks of surgery and well I got most of them, so they probably weren’t possible, they were probably likely for most people, except a fortunate few, so for the first time I felt blindsided.  I felt unprepared and betrayed by the team of people who paid their bills by cutting my brain up and stripping me of my abilities.  To outsiders, they may be miraculous lifesavers, but to me in that situation, it didn’t feel that way!
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    The tumour was in the cerebellum so I had double vision, a speech deficit, a tremor, swallowing issues (due to the tremor being internal too), mobility issues, left side weakness, balance issues and coordination issues.   Basically my brain’s ability to control movement was compromised, so those pathways had to be re-learnt and replaced. I forgot to say; I’m left handed so it causes major dramas!
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    When I woke up and had some time in recovery, things were relatively all right, I was walking, talking, eating and using my left hand.  Suffice it to say things went downhill rapidly.  The next day my speech became slurred and I was very tired, and then I lost the speech completely, couldn’t open my eyes and grew even more tired.  They said this could be due to cranial pressure so they’d install a drain.  They shaved a section on the right side of my head, (if I’d been with it I’d have made a right fuss! I liked my hair and secondly, never let straight men touch your hair; from this experience I can comfortably say, they have absolutely no regard for whose hair they are butchering, or the end result!)  There was no improvement, the only good thing was it appeared the tumour was benign.
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    After two days the drain was removed.  I couldn’t swallow my meds (I’ve never been keen on tablets but this time my aversion wasn’t the cause), so they’d find another way.  This was the day the left sided weakness began and some dietitian wanted to feed me through a tube because apparently I wasn’t eating enough!
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    I had the feeding tube put in and it made me gag! I hated it but when you can’t speak, you can’t object so you’re pretty much treated like a free for all!
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    Even though I couldn’t open my eyes properly, apparently I slightly opened them for a second when my brother visited that night and I made facial expressions for 10 minutes (it sounds minimal but apparently it was significant).
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    By this time they thought I had a urine infection (seriously would it end? Sitting at my laptop in 2017, I can safely say no, no it will not.).
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    At this point due to my lack of responsiveness Drs tried to inflict pain to make me respond (now if they knew me, they’d know if I didn’t want to, I wouldn’t).  The Drs wanted to do another MRI to see if they could tell why I wasn’t responding. There wasn’t a medical reason, I just wasn’t ready.
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    10 days after surgery they took the staples out of my head so my hair could be washed in a couple of days.
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    The next day I began peeking from my eyes a little and I was told it looked like I really wanted to talk. I also got to move out of high dependency into a single room where I opened my eyes for the first time and smiled twice.
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    My best friend visited and even though I still struggled with my arms, I was opening my eyes a lot and nodding.
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    I was opening my eyes most of the time which pleased the doctors but I was put on steroids to reduce any residual swelling, for me ‘roid rage’ was real and my desire to get out of that place led to a lot of leg thrashing out of bed (at least my stubbornness wasn’t affected!  I may not have been verbal, but I sure as hell would let my feelings be known!).
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    During the night I pulled the feeding tube out twice (I told you I hated it!).
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    I got to wash my hair though, and even though I wasn’t speaking, Mum could tell I loved it.
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    This was a bad time, I had to be removed from a single room because of the leg thrashing, and they tried a mitt on my hand to see if I would leave the feeding tube alone, due to short staff and overworked staff, (Government, if you’re reading this, public healthcare needs a lot more money, the nurses are underpaid and stretched so far that patients suffer). I didn’t get food or medication until 8:30pm as I had to wait for an x-ray for the tube.  So that meant nothing for me!
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    My parents were so concerned about the thrashing and trying to rip the tube out that Dad stayed overnight, as I was not adequately monitored. I didn’t sleep, just thrashed and continued my tube obsession.
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    Apparently my behavior wasn’t the norm but it wasn’t unique, they were just glad I was reacting, even if I was a total pain!  I just felt bad for my family, they shouldn’t have to witness that or feel responsible for fixing it.
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    The speech team said I could try removing the tube and eating solid food!  One positive, but at the same time my eyes wouldn’t focus and I had double vision, so they wanted me to wear an eye patch.  Not good!
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    The next day a lady from Casey said they’d help with my rehabilitation and it’d be good for me, so I was listed for a transfer.
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    The day came for my transfer but last minute I was told by a Doctor that the tube hadn’t been gone long enough to leave.  When physio came I refused because I felt so distraught, but then the discharge nurse came and said be ready to go in fifteen minutes!
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    A really nice nurse helped Mum put my things (very quickly) into plastic bags before the transport ambulance came and I got to Casey Hospital at about 6pm.  It was a spacious single room, with nice visitors chairs.  I laughed and cried intermittently that evening.  If I’d known how long I’d be there, I probably wouldn’t be so pleased.
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    A lady came from Casey’s speech pathology and I could now produce a few sounds but I was mostly using signals to communicate still – which is strange when in your head the sentences sound just like they used to.
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    Ok, so I won’t bore you, and honestly it’s a blur to me anyway (as though my brain is trying to protect me by blocking some of the most distressing things). I spent 3 months in Casey doing inpatient rehab, missing so many things!  I had 30 minutes of daily physio, 30 minutes of daily speech therapy, occupational therapy 2-3 times a week and towards the end weekly psychology and neuropsychology weekly, to just work through any issues and see whether my mental capacity was damaged.
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    I also had visits from social workers and case workers to complete forms as discharge approached, however, they really need to acknowledge that patients are humans with dignity and deserve respect, you can’t just ignore sensitivity, privacy and humanity!  With the risk of sounding like a teacher, there are ways to approach private topics with sensitivity, not like a bull in a china shop!  Unfortunately, heavy handedly and with a lack of sensitivity was often the norm.  My desperation to go home clouded my judgment and in hindsight, I should’ve only answered if they’d agreed to alter their approach.
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    I was desperate to go home, even though I knew doing “life” things would be so hard but I wanted to go home and my parents, brother, Nan, boyfriend and his parents had all offered to help.
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    When I left the hospital, rehab was in the home and people would treat the house like a museum exhibit, staring and constantly violating my home.
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    Since leaving the hospital, due to my immunity being low, I’ve had two severe colds, bells palsy, an ear infection, nausea/vomiting, two chest x-rays, blood tests, several MRIs (just incase the tumour decides to rear it’s ugly head again), and more.
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    I will also say I categorize most of the people I’ve experienced during this into 4 categories, those that are perhaps a little more patient and considerate but essentially treat you the same, those that pleasantly surprise you with their patience and understanding and how they really go above and beyond, those that disappoint you with their lack of understanding and patience and apparent loss of interest and those that act heroic at the start but soon realize this isn’t a flash in the pan and drift away.
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    I honestly didn’t expect it to take so long to recover.  It may sound harsh but from day 1, I was made to feel unprepared, unsupported and like a difficulty.
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    When you have a lot of spare time, there is only so much therapy homework you can do, so I’ve started a course to enhance my learning, I’ve also watched some TV, and whilst most of the situations I can’t relate to, the feelings of isolation, sadness, misunderstanding, vulnerability, self-consciousness, condescension etc. I can.
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    I won’t lie, there have been some very dark times, those uncontrollably sad, teary, pick yourself up off the floor moments, and I’m often told there’s people in worse situations. Whilst I know that’s true, it doesn’t make it better at the time.  I often feel like people are sympathetic but they don’t actually know what it can be like.  There are challenges even I didn’t foresee.
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    I still have a long way to go and still have challenges associated with balance and mobility, sight, speech and tremors, but I’ve come a long way and I don’t intend to stop.   I still have the same end goals, I’ve just had to alter parts of the journey because the future is a bit of a question mark really.

    Georgia is currently completing physiotherapy with Larna to try and reach both short and long term goals. Georgia has shown incredible strength, persistence and patience when facing her rehabilitation, doing so with a smile on her face. She has grown so much since she first came in to the clinic. We are so proud of how far she has come, and can’t wait to see how much she will achieve in the future.