Episode 1: Discovery of the mutant horde

It was April last year. I had started collapsing on my bed in the afternoons for a nanna nap  and thought that, at fifty, I must be getting old. Bugger! Maybe a course of multivitamins would help so I started taking a range of coloured pills to fix what I thought was ailing me. My sense of smell was a bit weird (although things still tasted okay).  I also found my fingers going numb, particularly walking to work on the cold mornings. That worried me as numb fingers make playing guitar a bit difficult. A couple of bruises on my leg didn’t really attract my attention.

I had a routine health check-up for work. The doctor feeling my abdomen declared that I must be constipated as he could feel a bit of a lump. He wrote me a letter to take to my family doctor, but I ignored his diagnosis – I knew I wasn’t constipated. The letter sat on my desk for about a month.

I had a cough that wouldn’t go away.  A raspy little cough that I put up with. It was only when colleagues started asking me to “Die quietly” that I thought that I should see someone about it. My doctor examined me and couldn’t find anything.  As an afterthought, I handed over the letter which I luckily remembered to take with me. My doctor read the letter, had a feel of my guts and suggested I have a blood test – preferably that afternoon – just to rule out a few possibilities.

A few days later I received a call asking me to come down the surgery to discuss the results of the blood test – now! My white cell count was 224 – about twenty times what it should be. A few other things in my blood film pointed to chronic myeloid leukaemia (CML) aka chronic myelogenous leukaemia. The doctor told me a heap of other stuff but not much of it sank in: he had never treated anyone with CML before but apparently the survival rate has improved a lot and is now quite good, although he added he didn’t know what ‘quite good’ meant. He made me an appointment at the hospital for the next day and I would learn more from an expert in the field. He suggested I drink lots of water because with a white cell count that high my blood would be quite thick and stodgy and could just clog up in my brain and that wasn’t a good thing to have happen. He also suggested that, if possible, I shouldn’t Google leukaemia just yet.

I didn’t get much sleep that night.  My wife and I sat the kids down and explained what we knew and that the doctor was positive I would do okay. And we cried a lot.

The hospital the next day was a tad surreal. My referral was written on a  scrap of paper that the nurse on the desk didn’t seem willing to accept. I told her that I was only diagnosed yesterday and an appointment had been made and I had just driven two hours to be there and wasn’t going away. Eventually I saw the haematologist and had a big discussion about CML and treatments. More blood was taken for further testing. At the end of a long day I had a prescription for a course of hydroxyurea (which the pharmacist seemed reluctant to fill at first but eventually handed over along with some dire warnings about taking the drug), had signed up for a clinical trial and made some more appointments for stuff. And more information that I didn’t quite know what to do with, and lots of questions that I could ask but didn’t because I wasn’t sure I’d really understand or absorb the answers, like just what has Philadelphia got to do with anything?

The start of an adventure – whether I want one or not.