So, chemo. I was already one cycle down when I first set foot back in the cancer centre for my first time being a day patient. Seasoned professional turned rookie once again.  I had waved my hand around dismissively each time someone had asked how I felt about starting chemo again (for my third new regime).

‘Oh, it’ll be nothing darling. Nothing I haven’t done before, and this one will be nothing compared with the devil Cisplatin I had the first time around.’

But like it often is in this cancer-filled life I find myself in, my ‘I’m sure it’ll all be fine’ attitude turns out to not quite be right. The chemo days were LONG. And my Cancer Metabolic Treatment Specialist had instructed me to fast before every session, starting from the afternoon before, to hopefully give it more chance of being effective. And with osteosarcoma being famously resistant to chemo, I needed all the help I could get. But the days were so long. One day we were out for 9 hours, even though my infusions were only 60 + 90 minutes. There was just so much waiting, and the nurses were run off their feet – quite literally – at one point after we’d been sitting with the ‘infusion finished’ alarm going off for around 40 minutes, I asked Ma if she could see my nurse, and she reported back that my nurse was running along the far end of the room between two patients. I suppose she could skip her cardio sesh that week at least.

There was the Health Care Assistant who asked what my weight was, and when I answered, she asked again, making it clear she was asking my mother, not me.  Mum shrugged and said she had no idea what my weight was and that I would probably have a more useful answer about my own weight… I had a few similar interactions.

But aside from the long waiting and occasional infantilising, the Cancer Centre was just so loud and scary. There were so many voices and loud noises, and I couldn’t work out what was going on. Nurses were forever turning up and talking at me, but without announcing who they were, or saying my name so I knew it was me that the disembodied voice (amidst an ocean of many others) was talking to. I was exhausted by the time I got home.

I had some nice lunches with friends between the chemo sessions of cycle 2, to celebrate turning 36. As time went on, the nausea I got after the chemo got stronger and lasted longer. And the exhaustion claimed more of my hours.

I was meant to be obsessively checking my temperature to gauge if my old friend Neutropenic Sepsis wanted to come out to play, and send me rushing off to A&E to get admitted for what always proves to be a stressful and terrifying week or so as doctors panic about what to do. And that’s without adding blindness on top. So I’m sure you all understand how terrified I was of a temperature spike. But still, I diligently checked it regularly, because the alternative was even scarier. And so it was that I found myself on the morning before NYE, staring down in disbelief at a thermometer showing 38.2 degrees. That meant hospital admission time…
‘But…’ I stammered ‘I’m not shivering! And it’s the morning. I never get temperatures at this time of day…’ Dad suggested taking my temp again immediately, and it was back at a safe (just) number – 37.8.

So the decision was made to stay put for the time being and to keep a very close eye on it (lol) while we eat our salmon and eggs that we’d had planned.

For the rest of the day, to my amazement, it stayed just below the dreaded 38!
But I knew from experience, it would only go up from there. And on NYE no less… that was a terrifying concept. But as the day of NYE went on, my temp seemed to be behaving. At 1pm we ‘cheers’ed the pot of Masala Chai we had brewed in the saucepan, to match our Australian friends’ midnight. And as the daylight started to dim we cracked open the Champagne (of which I could only manage a small glass), and we had our celebratory garlic prawns for dinner.

I was in bed long before midnight, though as the sound of fireworks sent me off to sleep, I was glad to be hearing them from my own bed. Somehow, I had avoided the hospital admission altogether!

       I didn’t want to admit the chemo was taking its toll on me more than I’d expected, didn’t want to let it have power over me, but I couldn’t dismiss it much longer, I was finding it really hard. Although I probably should admit that I am also not particularly good at resting as much as I need. I do not easily lean into doing nothing and taking it easy.

And so it was, in the midst of chemo, having just gone blind, on January 13^th, 2024, I finally published my novel…

(All details coming super soon. But it’s my blog, and I’ll suspense if I want to!)