Radiotherapy: 10 treatments in…

Two weeks into daily radiotherapy, and I’d love to write that I’m sailing through it.

To start with I was.

The appointments are easy enough. I’ve been cycling up and back from the hospital, a 14 mile round trip and (for a change) a very pleasant journey because of the unseasonably warm Belfast weather.

The radiotherapy itself is almost a pleasure. I’m given a pager when I check in for my appointment, and take a comfy seat surrounded by magazines. There’s a water cooler and familiar faces to nod to. Two flat screen TVs keep us updated if our particular machine is running late.

I’ve never had to wait more than ten minutes, including the time when I went to the radiotherapy suite at completely the wrong time (like, five hours late) because I got confused about my appointment.

My buzzer goes off, and I’m greeted by cheery radiologists who lead me through to a machine room, lay me down while checking my details, and politely ask if I’m ready to have the mask put on. Their tone and manner is always friendly and reassuring, and a local radio station playing in the room gives the whole process a sense of normality.

Once I’m clipped in, the lights go down and the radiologists move my bed up and around, and I watch through the mask as red and green lines pass across my face.

“Three point five,” says one, as the bed rotates, a green line passes over my left eye and rests in its corner.

“Up just a touch,” says her colleague as the bed lifts towards the machine. “That’s got it. Back in a minute Gideon.”

There’s a whistling sound (I’ve now established signifies that the radiologists should leave the room), and then the machine goes about its work. A few clicks here and there, a crackling sound. It’s not clear whether this is the actual radiation or just the machinations of the equipment creating it.

The radiologists pop in a few more times to check my position during each session, which tend to last between ten and twenty minutes each time. Then the mask is removed, the bed is lowered and I’m sent on my way with a friendly, “see you tomorrow”.

I jump on my bike feeling exactly the same as I went in, and a couple of times I’ve gone bouldering (indoor climbing) straight after, feeling no ill effects from the treatment at all.

But it’s not quite so simple.

I was, of course, determined to get through radiotherapy with no side effects at all. I’m fit, healthy and relatively young, so it should be a walk in the park?

But even 10 out of 30 treatments in, I have to admit to some significant changes.

First is the fatigue. Accounting for the fact that I am still getting up in the night for a five-month-old, I cannot get through each morning without going for a sleep myself. My body and head is just telling me I need that extra hour, no matter how early I go to bed the night before.

As the treatment has progressed, I’ve also started to wake with a headache. It dissipates as soon as I’m up and about, but as I wake it makes me (even more) cranky as the kids come in for a morning cuddle.

Another growing feature, and the one that seems to be getting worse, is the nausea. There is just a general feeling of sickness about my whole body, and the idea of shopping for or preparing food makes it worse. This is a well documented side effect of radiotherapy to the brain, but I somehow thought it wouldn’t affect me.

So I spend my days eating crackers, or chomping on apples or carrot sticks (or raiding the kid’s sweet jar) to keep the nausea from building up. So far, I don’t feel as if I would actually be sick, it’s more of a heady travel sickness. One, someone pointed out to me, probably not unlike what many pregnant women experience.

So I am not side effect free and I get the impression things will only get worse as the treatment progresses. There’s still hair up there at least, and I don’t yet have the tell tale radiotherapy ‘sunburn’ I’m warned about. But now I can no longer pretend it’s not on its way.

I’m not trying to be a hero and I don’t want to be naïve.

I’ve been easily able to cycle up to appointments and do some other cycling besides, and I feel that I’m doing about the right amount. I know I may have to reduce that over the coming weeks, and that’s OK too.

But there remains one key worry for the future of my treatment, and that’s my ability to keep a sense of self.

With radiotherapy in the mix, I have a relatively busy life – but very little to show for it. Most days I do childcare (allowing for a sleep) until 3pm, then I jump on my bike for treatment. I’m back by tea time, but then we get into bedtime routines, leaving me ready for bed myself by about 9pm.

Then same again tomorrow.

That’s hard, because as anyone who cares for young children and babies know, they don’t leave much time to produce, to create, to achieve. You’ve entertained, kept happy, fed and kept clean a bunch of offspring, but there’s nothing new to show for it at the end of the day.

(Anyone who’s read my book about men and child care already knows that I know this isn’t actually the case. But for both men and women who are child carers, it can certainly feel that way).

I haven’t painted the bathroom, or done any work on a new book, created any culinary masterpiece, or even mopped the floor. Much of the rewarding volunteering work I was doing before at the kids’ school has had to end because I couldn’t fit it in with the treatment and doctors’ appointments.

(I haven’t even been able to contribute my time to the PTA this term!)

The risk then is that my only achievement of the day is that I’ve had cancer treatment. And that doesn’t feel like achieving much at all. And when you’re lying in bed, tired from the radiotherapy, it’s hard to imagine that it is pretty much going to be the same or worse for the better part of the next six months or more.

As I’ve written here before, I’m not very good at doing or achieving nothing. It’s a sure fire way to plunge me under black clouds; to force me back to bed not because I’m tired, but because there’s not much to bother being up for. At least it’s something I’ve worked against all my life, so it’s something my wife and I have strategies to deal with.

Mine right now, of course, revolves around bikes – taking mine and my family’s’ bikes apart, fixing others’, and volunteering at a bike refurbishment charity (which I’ll continue do as long as I can).

Losing yourself and the life you have, and ending up for a time as just ‘a cancer patient’, must be one of those side effects of the disease that’s rarely talked about, but almost every patient feels.

But I am a father, baby carer, cyclist, writer, improving bike mechanic, brain tumourist undergoing treatment, who isn’t much good at DIY or small talk, and I need a kick up the arse occasionally to stop feeling sorry for himself.

As the treatment progresses over the coming months, I may need reminding of that.

5 Comments

  1. Hi. this is what I went through in 2014. I have a pituitary tumour, it was found in 2010. At first it was 20mm, they gave me Meds to reduce it but it didn’t work. Then in 2012 they operated on it through my nasal cavity and it reduced to 11mm. The neurosurgeon was excellent in the RVH (Steven Cooke). He said he managed to cut the blood supply off to the rumour and it shouldn’t grow any further. In 2014 I felt unwell again and I knew something wasn’t right, my MRI showed that Tommy the Tumour had grown another 2mm. I received 5 weeks of radiotherapy in the City Hospital and your story is quite similar to my own. The nausea was horrendous for me. I felt like giving up at times. My sickness seemed to ease st the weekends and then become fierce again after Monday’s “Zaps” The radiotherapy reduced Tommy to 8 mm. Just waiting on my MRI this June to ensure that Tommy is behaving himself.

  2. Gideon, keep up the writing. You are achieving more than you think by informing and educating others who are or will in the future face similar situations. You write in a way that we can very easily relate to. I say this as a 5 day a week runner with a low grade glioma, presently on watch and wait and radiotherapy will be my treatment as and when things develop.
    Good luck mate

  3. Hi, thanks for allowing us to follow you through the journey. Got out a RVH on Sunday. Temporal low grade. Had it for 5year. 3 operations recently. Got a bit of a language issue this time. Hopefully it’ll go! Hopefully this makes sense as words aren’t coming out as they should…

  4. Hi there, Gideon. My name is Willie am about to embark on the radiotherapy bus journey you are presently on. My oncologist made me aware of your blog as my Tumour, although not the same, is similar. I start my first bout in 3 weeks and have had my face hugger mask made, much to my partner’s amusement, who immediately got her phone out and took a pic for the kids. She also Whatsapp’d the pic (apparently by accident!!!!!) to all her friends. I can only hope to stay as focused as you and will follow the rest of you journey with anticipation!! Many thanks Gideon

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