Did I mention that chemo is repetitive? Chemo is repetitive. Cycle 4 feels just like the other three this year. Same procedures, same tablets, same tingles, same nerve pain, same exhaustion, same sickness, gout, and explosive diarrhoea.
That’s week 1 anyway. The week where taking the bins out is an excursion and I measure my energy levels by whether I need to take two or three naps a day. Then as week 1 begins to end, the side effects start to ease. The downward trajectory is uneven and, in profile, the graph would resemble a roller coaster but nonetheless, it would be unfair to the poison tablets to say that every single day is unrelentingly terrible.
Saturday brought significantly energy than Friday, so I made it to the music school concert that represented my only tangible grip on proper productive work this year. It was really difficult to get through. Dizzy and short of breath, leading a youth ensemble to engage an audience in energetic performance required a lot of blocking out and pretending, but those 12 minutes were ours and the kids once again owned that stage and did their parents proud. Not being sure if I’d pass out before returning to my seat was a small price to pay for having seen the progress that comes from a term’s worth of rehearsals, even though I’d only made it to about two in three.
I rested hard that Saturday afternoon because I needed to regroup for Sunday with a family reunion hopefully pencilled in. I’m the only one who lives in the area in which my family grew up, so this now means traveling to the New Forest. In theory, a day on trains shouldn’t be too arduous. But the motion sickness and dizziness didn’t make for a comfortable journey. The prize was worthwhile in a way that made me grateful it was an ‘out of the house’ kind of day, because for the first time since pre-lockdown, me and my four siblings were in the same place at the same time and we got a family photo in with Dad and Aunt Harlan, visiting from America. It ended up being a very long day trip as I’d forgotten to bring chemo tablets to get back home. Let’s put that one down to the chemo brain! But the decision to go back and not stay over was also a reflection of my energy levels now. One long travel day and the chance to rest the next day is preferable to two shorter ones in a row. Again, I’m coming to terms with having finite energy levels and it requires a lot of extra advance planning!
Monday brought on a predictable crash. But after a decent mid-morning sleep, I didn’t feel too bad. So I could make another appearance that was hopefully pencilled in the diary. And this is where I need to pause to be so grateful to the musical community. Because I’m still being booked for gigs, and proper ones at that. The kind where you’re on stage and people are videoing you at close range and you feel like a frickin’ rock star. Last year, I filled in a few shows with Ska Punk band Filthy Militia. It was great fun and, once Mike, the regular trombonist, was back, I thought nothing of it. But then I was offered the holiest of grails for someone in my situation. The invitation to another show, to be part of the band and bolster the horn section was gratefully received. But – and this is crucial – it wasn’t a a problem if I didn’t turn up. This is a rare occurrence and an offer that blows me away every time it’s made. Either people don’t call me in the first place, or I have to engage in some soul searching in order to work out if I’m realistically good for it. The very worst thing I could do to someone is let them down and I just don’t want to be that person. It’s the most terrible thing to leave people in the lurch last minute when I’ve committed to something. It’s one of the reasons why – even on the good days – there’s no way I can (or would be expect to) hold down my main teaching job right now.
This occasion wasn’t the only one where I’ve been given this kind of flexibility, but as I stood there on stage watching around 100 paying punters dancing away, that buzz of performance energy really hit home and I knew for certain why I got into this music thing in the first place. It feels fantastic in the most multi-faceted way. It’s an overused cliche to ‘live in the moment’ but there, on stage, I really was and it was almost possible to forget I had cancer. Ok – I reminded myself and everyone with a charity plug for the marathon, but as far as I could tell, this didn’t spoil anyone’s night and definitely not mine.
Having gotten out of the horrible first week, the second will become easier and there’s a good chance I’ll make it to a few more gigs and family gatherings, all being well. And if I don’t, there’ll be the week after and (depending on scans at the end of April) a few more. I might even reliably be able to make it out of the house on a daily basis. Now that would be a fine thing!
Life goals look different these days – here’s hoping.