After my fourth and final brain surgery, I was discharged from the Alfred hospital to Caulfield rehab hospital where I spent a further five months.
When I first arrived, I didn’t realise the extent of my issues. When Loz (my wife) suggested I might be there for a few months I was shocked.… what?? three months?? Are you serious?? I assume that I was going home quickly and I was resuming normal life. But... sadly no.
I am still 95% very positive about with my life... but also I had some negative thoughts at the hospital also. I was unclear about my recovery eg. Possibly never walk, never run, never playing cricket, never playing golf, never inside the sauna, never traveling overseas, never reading books, never bodysurf at the beach, camping with my son etc.
Initially when I came to Caulfield I thought 'I am now alive... okay... but... Very soon dead'. I had such a laissez-faire attitude toward at the early stages of my recovery ... I thought 'anything goes' because 'ultimately was convinced that my life was ending soon'. This thinking was liberating, because so much perspective and forgiveness each person, but also frustrating because I felt I let down my son, and my family because burden on everyone.
In the early stages I struggling to sleep (and can't walk also) and lots of thinking and reflecting at my hospital bed because can't move. Sometimes, I was imaginary conversations to late my grandparents, updating my life. Also had imaginary conversations with my late friend Darren (discussing sports, movies etc). My brain was still kicking over and 100 miles an hour.
Before my stroke my friend Lior recommended meditation (specifically this headspace App on smartphone) and I sometimes would meditated my lunchtime at work. After my stroke continuing meditated and I reckon helped me to gain peace of mind. Also to listen to the radio (normally SEN 1116 or sometimes music) at night definitely helped. I listened my radio almost every day (and still now!!) I reckon my speech improving partly due listened to the radio. No test to confirm this true but I feel it - I quote Dennis Denuto at the Castle film 'it's the vibe'.
I had small of 'separation anxiety' at the hospital and sometimes still now (separation anxiety normally among babies and toddlers) . I was living in hospital for long time and I travelled to Caulfield, the Alfred Hospital and my home. That's it. I was anxious going away of my home especially I thought "where is the nearest hospital locating?". My friend Dion visited me [he is a doctor], I thought I was more safer Dion because he was here. I allowed two home visit (sleeping over). I think definitely helping re-adjusting and transition at home but before definitely I was very anxious going home.
And also had normal anxiety (still here now). After two months at the hospital, I encountered a gastro virus or food poisoning. Middle of the night, I woke up sweating and instantly I thought another a stroke because my symptoms were very similar to the 31 January (my stroke). Thankfully only gastro (or food poisoning) and my psychologist at the hospital helping me overcome this issues (and still helping me now).
Before my stroke I weighed ~ 80 kilograms and after waking up my coma I weighed less than 60 kilograms. I have a sweet tooth and I remember thinking that 'amazing... I can eat anything'... but very quickly Loz was putting me in my place. She said better eat healthy food not meat pies, chocolate, ice cream every day or very soon pot belly. In hindsight Loz was spot on and I started sit-ups first thing in the morning almost every day. I'm married to a physio and she was right (...always!!).
One of the side-effects after my stroke was my eyes. I awoke from my coma and I noticed that one eye was clouded and very difficult to focus and my peripheral vision was affected. As if I was a small blob in my eye but moving. What happened was because of the size of my brain bleed, the blood extended into my eye and got stuck there. But my problem was can't speak and very difficult telling to Loz (and the doctors) to described this problem. Eventually I found the words to explain the problem - maybe four months after - and working it out. I went at Cabrini Hospital one night and minor surgery (vitrectomy) and my eyes fixed. Problem solved - thank goodness.
Another the side-effects is fatigue. Fatigue is a terrible thing and I bet lots of people - stroke victims - agree. My fatigue only starting two months after my stroke, correlating with ramping up my therapy program. I am still struggling fatigue now... but definitely improving. My bed at hospital had a small TV but watching TV not free (fancy that!!). In hindsight not watching television was blessing in a disguise because passenger in the car, watching television, using my phone, laptop etc always affected my fatigue. Thankfully radio was (and is) fine...
I remember my friends organised a barbecue at Caulfield hospital - maybe two weeks after moving to Caulfield hospital - 15 guys attended and I recall that although I faced a lot of challenges, most frustrating my speech. My friend Mark (or 'Monty') was there and I said 'Monty' at least 30 times. I'm was trying to say Hi Daniel, Hi Ben, Hi David... etc but my brain stuck with one name 'Monty'... It was embarrassing because of course I knew my best mates names but I couldn't control it, and my friends so understanding about my speech difficulties. We made so many jokes about me saying Monty all the time and it made me feel so at ease to have such supportive and understanding friends. I really found out that my friends always be there and long-haul and I was comforted by the thought.
My friends and family's effort to include me in everything, and make a special fuss (bring me meals, watching the dees, having play-dates with our kids) made my five months in rehab enjoyable. I never felt isolated or left out because of my situation and everyone's support meant everything to me.