Blood Gremlins

Not a vampire, they don’t multiply in water, but they ARE scary: Leukemic cells that make you bruise easily, lethargic, pale and are overall crap (technical term). My blood had turned into a warehouse in which to manufacture and change my red blood cells. I was 11, ate healthily, generally fit for my age, smart, well-read, creative and friendly. We had been living in the little town of Bungendore, which is 40 minutes out of Canberra, for almost two years when I was diagnosed with Acute Lymphoblastic Leukaemia (ALL). Boy did I learn fast about change!

First, things changed when my mum cried in the doctor’s surgery. Then with my step-dad, as he swore in front of the doctor (swearing was not normally his thing at home, let alone in public). I still wasn’t really sure, but from the rushed car ride into (then) Woden Hospital to the walk across the ridiculous carpark to the midnight dash to my stylish abode at Royal Prince of Wales Hospital (now Sydney Children’s) in Randwick, I got a better sense that I was SERIOUSLY sick.

The usual happened; I lost hair, I fought with my mum over medication, I had fevers of tropical proportions and got given hats. Lots of hats. Cards, letters, presents, flowers from family and friends across Australia. I was listed as a patient of the world’s greatest Paediatric Oncologist (he is now a Professor and has been Head of the Molecular Carcinogenesis Program at Children’s Cancer Institute for 22 years, thank you very much) and continue to see him for a check-up and review every few years, even some 20 odd years after completing treatment.

The biggest change was not necessarily physical but was of a mental, emotional and spiritual nature. Knowing in retrospect that there were a few VERY close calls, I always felt at the time that I was doing OK. No matter how tired or achy or vommy I may have been. I could always see the other kids in my room. Could hear the poor boy in the bed closest to the door crying at all hours of the night. Not just crying but yelling. Though there were at times an element of “I just want to sleep”, I also felt sad for him. I felt sad for the kids whose families hadn’t flown in from Victoria, or whose brother and step-father didn’t make it to Sydney every weekend. I particularly felt sad for the kids whose mums or dads couldn’t be there straight after breakfast, like clockwork, every single day.

I had already started to question my assigned/presumed “belief” in a god, but this experience (followed by years among the Camp Quality family) sealed it for me. I was struggling enough to work out what was happening to me, but I was more concerned that the world could take a sweet, friendly kid like Lachlan (Downs Syndrome boy who often had the bed across from mine) and inflict such frustrating, maddening, sickly confusion on him. He never learned my name, but we would both wait patiently for our families to turn up, sometimes with me comforting him, and then each bed would be surrounded by love and joy on the arrival of our nearest and dearest.

I was forced to “grow up” as much as my still childlike mind was able. I was facing and dealing with things waaay beyond my emotional cognition. Making friends and sometimes losing them in the same year, even matter of months. I started High School already emotionally and mentally isolated from my peers. I could see the magic in the world, had experienced consequences, of what I would never know. I lived every year for that one week of Camp Quality, where I could be ‘me’ among kids my age and younger who ‘knew’. This great unspeakable thing that was just understood, but that we left behind us when we boarded the buses in Canberra.

Camp Quality was one of the greatest places to start working on my confidence and self-esteem. Particularly after my brother, aka my safety net, had taken part in his one and only camp. I did make friends though, some of whom I’d met in Canberra at the clinic or in Ronald McDonald House in Sydney. There was so much laughter and fun at camp, that the times that were intense and confronting, I think, were made more so by comparison.

Having to confront the concept of mortality and existence at such a young age, in fact at any age, is something so surreal you find it hard to get your head around. At 15 and 16, the time in my life I was meant to be finding myself and looking to my future, I was bogged down with such heavy realities in seeing my friend in such pain he couldn’t hold it in any longer.
An innocent game of ‘spotlight’ on the field at Red Bend College, Forbes, turned serious once Chris had to cry out…. normally so happy to laugh at the sinister in the world and to make stupid jokes, I had never seen this side of him. I wrote about it after he had gone, trying to get rid of this image, yet never wanting to let go of the moment he was completely himself without bravado. I could not share this with my friends at school. We were close, sure, but they could never understand. They tried, but it was understandably over their heads and emotionally out of their reach. So I internalised it. I cared for him every day, and, when the time came, I missed him and the fights we would have trying to knock each other’s hats off our heads.

I made other close friends, one, in particular, I may revisit on here one day, but Chris was my first real friend I lost. I used to curse the blood cancer for the shit it put me through WELL before my time. But I, at some point, came to a conclusion somewhere along the way that had it not been for my friends the Leuks, I would never have met the many wonderful people I did along the way. I am happier to have known Chris for the time I did, recognise how much richer my life is in having done so than to have missed out on that friendship at all.

Lumbar punctures, bone marrow aspirates and disgusting hospital food be damned, had it not been for that life changing moment at age 11, who knows who I would be now? I kinda like her….

https://www.rmhc.org.au/our-programs/houses/randwick

https://www.campquality.org.au/

https://ccia.org.au/home/our-purpose/our-people/glenn-marshall/

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