Tony’s story

Tony

Tony

In October this year, it will be 3 years since being diagnosed with CMML (chronic myelomonocytic leukeamia).

The disease progressed, slowly robbing me of energy and making life rather different, but I kept going to work … I worked with disabled children and a few adults with the need for specialised equipment.

In November 2014 my leukaemia went to phase 2. There was an immediate need for chemotherapy as I was on the road to AML (acute myeloid leukaemia) … The last stage of my disease.

Treatment involved 14 subcutaneous injections of azacitidine per month and this was rather sickening in itself. Without the right anti-nausea medicine I vomited so badly I thought I would die.

This chemo brought down my really high white cell count along with monocytes that were dangerously high etc. As of August this year I am up to cycle 9 of treatment (9mths) but azacitidine only buys you approx 12 months …maybe 18 months (if you’re lucky) of remission before it loses its effectiveness. When this happens there is one last shot at treatment which is a bone marrow transpant. My siblings all tested negative for a DNA match (made me feel like I was adopted …ha!) so the search began for an unrelated donor on the world registry of marrow donors. I had 2 chances in 8 million and 3 months later my haematologist gave me great news that a donor with 100% match had been found, here in Australia and in NSW … my state!

The Jam A

The Jam A

Next month I have an assessment interview with the transplant co-ordinator at Westmead Hospital in Sydney to gauge if I’m up for it etc. My haematologist told me that I would have a pretty good chance of the transplant being successful but only a 50 – 60% chance of surviving after 12 months. These are pretty devastating odds and takes a little while to accept. But I think I’ve always been strong that way…

This disease plays havoc with your emotions and breaking down into tears can happen pretty quickly when I think about my boys and wife … really hate the idea of them losing their dad at their ages of 21 and 24…
We have always been very close and they are great musos and I have been a muso for 40 odd years and have had the pleasure of performing live with my boys playing classic rock and having the time of my life!

Tony and Tania

Tony and Tania

We also share a passion for motorcycles and I have had so many great times with them throughout their growing up into young men. My wife has been with me for over 30 years and we have had our ups and downs and she has been pretty brave with it all. I retired from work in December as I simply could not go on. I live in the mountains not far from the Snowy Mountains and this brings me peace and happiness and I love to ride through the mountains on my bike or drive through them with my wife in my little MG…

 

 

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