Bloody blood disorder

Bloody. blood disorder.

I’ve never sworn so much in my entire life (that’s a lie). The day I met with my doctors who told me I have an incurable, but treatable disease.

The thoughts went from “What did I do to deserve this” to “How on earth could this happen? I’m so young and healthy.”

Now settling with “I must’ve pissed off a pretty powerful gypsy in a previous life.”


What’s a blood disorder?  In laypersons terms, it’s a cancer of the bonemarrow and blood. In the grand artform of medical Haematology, blood cancers (I hate that word, but it makes it easy for people to understand) it can range from clotting problems to complex Leukaemia. It can be bonemarrow related, blood plasma, blood, parasitic, and the list goes on. Essentially, having a Haematologist in your life is a really cool thing. I mean, we all need blood to function, or we die.

What’s the prognosis?: Doctors don’t like to give numbers and facts, because the problem with blood disorders is they are very much dependant on the patients underlying health. Let’s just say, i’m under 40, fit, have a reasonably good diet & a low stress life. And my disorder was caught early, this is the absolute most critical point. I should expect to go through hell for nearly a year, then enjoy a decade or more of remission before I have to consider followup treatments.

Is there a cure? No, quite simply. But it is treatable. Treatment consists of high dose injections of tailored chemotherapy (immune supressant) with a powerful dose of steroids, and followed up with a self harvested stem cell transplant. This is the 2016 ‘gold standard of therapy’ in Australia & doctors do a great deal of these every year. People are living longer with blood disorders.

You poor thing, you’ll be so unwell and lose your hair: First of all, stop that bullshit! Blood cancers are so far removed from populist tumour related malignancies it’s not funny. (really, it isnt). We don’t receive high doses of targeted radiation aimed at certain body parts – so we don’t generally ‘look unwell’ and we rarely lose our hair. Beware, we walk amongst you! We glow in the dark yes, but that just makes it easier for you to find us.

As time progresses, i’ll share more information about my disorder in the hopes it may be useful to people who are curious, or may be going through this themselves.

But for now, all I will say is “BLOODY BLOOD DISORDER” .