Episode 2: Into the black world

Hospitals are big places. Rooms and corridors and “Follow the blue line from the elevator on level 3”. And you don’t want to go inside but you know that you have to.

Australian Olympian Raelene Boyle recently described her ordeal with breast cancer as like stepping into a black world and not knowing where she might come out. It is an apt description for taking those first steps into the hospital. Despite the bright flouro lights it feels bleak, I felt bleak, worrying about what was happening and what could happen, all the unknown possibilities.

The first thing I learnt was that I had to surrender. I had picked up from the doctors and the net that there was a wonder drug called Glivec that would probably cure me, sort of.  I wanted it now. Please, can we start treatment now? I read in forums about people going on to the drug pretty much the day they were diagnosed, so why not me? However, there were further tests needed to make sure I had the Philadelphia Chromosome. The doctor would decide what direction I would proceed in and it wasn’t Glivec; not just yet. Hydroxyurea first.

I had the script and went to the hospital pharmacy to have it filled. The pharmacist was reluctant. Had the specialist told me such-and-such, or arranged for a whatsit procedure? He had written the script, hadn’t he? He was a doctor and that’s what doctors are trained to do. Surely he had ticked all the boxes. And how would I know if he hadn’t?  I was stuck, unable to answer the pharmacists questions and wanting to scream at him “Ask him your bloody self!”

The following weeks include a bone marrow biopsy. Deep breathing and meditation were needed as the needle went into the back of my hand. Trust the registrar; it was all I could do. There was no other option.

The worst was lying in bed one night, discussing the disease and the treatment with my wife. “We were meant to grow old together”, she said. Those words cut deeper than anything else I have experienced with this disease before or since. I suddenly realised how all the plans we make can be so easily lost and that we have no power whatsoever to do anything about it.

I did have a future planned and it did include growing old with my wife. It included watching my children growing up. It included a whole range of dreams that I didn’t even know about. It still does.  I am not going to let them be snuffed out into a black world.