About Me

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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.

Wednesday, August 11, 2010

High 5!

This is me at 1:30 with my cheeky nurse Lee (i will explain why later!)

I sneekd in a photo of mum (she didnt want her picture taken!) maybe she is looking to the heavens and being thankful or just looking at the monitors!

The nurses have now removed most of they put in me for the surgery... I really have to tell you this quick story! when the nurse removed the urine catheter (only put in for the surgery) she tickled my feet! hahahaha! it made the process easier to bare! Ive got to go now, they are taking me up to the ward for the overnight stay, I should be having an MRI scan tomorrow. All is good! till next time, ciaoooooooooooooooo!!

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6 comments:

  1. Mark M SkibaAugust 12, 2010 at 5:18 AM

    Hi Daniel,

    Good to hear the surgery went well & your hearing has returned a bit! I'm keen to visit sometime next week if you're up for it - let me know! Talk soon.

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  2. fr AshkarAugust 12, 2010 at 7:01 AM

    I cannot describe how pleased I am that it went well and how impressed I am at your staggering staying power!! give my best to your mum too and commend her on her patience, love and endurance. God bless, see you when you return south.

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  3. AnonymousAugust 14, 2010 at 7:14 PM

    Great news Daniel! you look wonderful and every day will be better. keep fighting, you give us all inspiration. Remember we are in this together!

    Sharon/NYC

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  4. AnonymousAugust 15, 2010 at 1:08 PM

    well done Daniel, hope the recovery continues to go well and your hearing continues to improve, Wee Ben is doing well too no pain releif the last 2 days despite being quite active. :-)
    Warren NI

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  5. Shane K.August 17, 2010 at 5:03 PM

    Hi Daniel,

    My name is Shane. I live outside of Washington, D.C. I found your blog through Sharon.

    I too am very thankful your surgery went well.

    You are truly an inspiration. I believe God only gives the largest crosses to bear to those who are the strongest...and you for sure are Hercules.

    All things aside, I realize it isn't easy. I too fight and struggle everyday. I was diagnosed with a small football size tumor on my sacrum. I was 42 at the time in '07 when they found my friend. I used to consider it a monster, but for reasons I can't explain I feel empathy for it, even though it was removed through an operation called a sacrectomy. At first they thought it might be a Chordoma. That was ruled out with a new biopsy; and the biopsy read "plemomorphic sarcoma", which at that point, I was wishing I had a chordoma because they told me I had about a 25% chance of survival and would probably be gone within 2/6 months. After my 18 hr operation in which I lost 24/26 units of blood and also had a bowel perforation, the post biopsy was Giant cell tumor. God had sparred me. I'm three years post op with no re-occurrence...and I'm forever grateful. I have to large L-rods that essentially connects my spine to my hips, since my body's skeletal keystone (sacrum) was removed. I did lose my nerves from my S2 down which means bladder, bowel and sexual functions. I have to self-cath when I want to urinate and I have a colostomy. Luckily, I can still enjoy sexual sensation, but for erections I need to use an injectable called Caverjet, which I dislike. I also live with chronic pain and walking is difficult, although I can walk and drive even though I have pain in my legs and feet.

    Regardless, cancer in some strange way saved my soul and it changed me for the better. It's hard to explain to people why that is, but it made me appreciate things more...be less selfish etc. I realize this doesn't apply to most and I wouldn't wish your situation or mine on anyone...but for me, I love my life now more than I ever have.

    I do, however, feel for you. Although I see you as a hero.

    Keep up the great attitude and fight as the world is a better place with you in it.

    BTW, are you on Facebook? You can find me under my name "Shane Knee" or http://www.facebook.com/shaner65 My profile is open.

    Peace. love and God's Blessings.

    ReplyDelete
  6. Fr AshkarNovember 29, 2010 at 10:48 PM

    Eternal rest my friend, for it is time to cease from your labours. I will miss you dearly as we had such humour and just friendship of presence. Your faith was an inspiration to so many, your life a proof of its dignity and the power of all things in God. May you be already interceding for your loving mother who misses you dearly. Send the Lord's comforting to her that she may now have peace of heart that you are free from all your suffering. Love you as a brother.

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