About Me

My photo
Hi all, my name is Daniel, I’ve been fighting a rare form of cancer called Chordoma now for 10 years and it has greatly affected my life in many, many ways. I am now needing 24 hour care and now live in a care support community with that 24 hour support and care that I need. I am a nice guy with a loving and outgoing personality. I have been described by friends and the herald sun as -funny -bright -articulate -would be everyone's favourite nephew! My cancer is a rare tumour at the base of my skull. In 2001 I suffered a stroke when I was 16 that have caused me to be very unbalanced on my feet. I do have a few minor physical problems now also and require 24 hour ventilation to keep breathing; I am using a pacemaker device for my diaphragm (diaphragmatic pacing) during my hours awake and a ventilator when asleep. I am finally out of hospital and managing well with the help I get. I am Italian...yes even with the red hair! I love music and anything to do with it. I love movies to, my family, my friends and my faith in God is very important to me and is what I believe is getting me through this dreadful journey in life.

Saturday, July 31, 2010

Good Night/Bad Night

This is the way I finally decide to start my blog! So many people have said 'it's a good idea to do a blog, tell your story, write a book'! I am just thinking of a very good freind of mine, when I ask her how she is doing she has always said to me...'same shit, different day!' In my life, in a way that's so true, but over the past 3 years or so it's been different...very different in a way I am finding difficult to share with people coz once an event is over...it's over! I thought of starting my blog in so many different ways, now it's a s new way, In the early hours 4am) of the morning when I have woken up sitting at my desk still but with my ventilator on, my carer must have put it on me coz I have to sleep with my ventilator on otherwise there coulbe major complications which I am sure you will find out in later posts, I just let my mind wander a bit and out comes words I am typing slowly with one hand (because my right hand is paralized). I am slowly updating how many more surgery's and how I have had and addapted to my new disabilities in another file I will post once its done, but as you can see clearly my life now is jam packed with events or 'episodes' as the doctors have called some of them. I will tell you how close to death I have been many times, how scared I have been and how scared I am every single day of my life but overcome it...my faith in God is a HUGE part of that, not that I* am gonna start preching or singing 'Alleluiaaaaaaa' My fairh is or has become very private. I hope to tell inspirational true story's. I have meeet so many amazing people butt have seen so so muh suffering around me, sooooooo much, some has affected me good, some has affected me bad...there just seems to be so much suffering and it seems to be getting worse with the number of people with cancer and other life changing diseases. I always ask... when is it going to end?

It is very very late and I now feel I can keep on slowly typing away! but I must get back to sleep now (hopefully in bed!) otherwise I will have a shit day! oh...I had a good day today though, did things I havent done in a lont time and made so many coffee's and mocha's for people ...spoiling them with , one of the things I love to do in my new home away from home in Thornbury. I will share those story's next time at a better time when I have more time!

Love,
Daniel :-)

1 comment:

  1. Awesome read and a fantastic beginning to what I am sure I will consider compulsive reading. Are you back at your accommodation or are you still in Sydney? As you say, so many surgeries, so many stories, I wait eagerly for the next blog!!!

    ReplyDelete