One down five to go

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Yesterday marked a whole week of radiotherapy/chemotherapy. With the build-up, the dread and the various tales of what might or might not happen, I’d expected something worse. I have a long way to go, yes, but while it’s not pleasant, overall I feel – here it comes – positive about it. Dad and I have got into a kind of routine where he drops Bun and I off on the moors, goes to do the shopping, gets his papers and returns to collect us. We then do our Derriford stint.

The timing of everything seems inordinately complicated, to the point where I’m considering volunteering the problem as a SATs question for 6 year olds. But how much is due to my still slightly less than agile brain? I have to take my usual meds, which include the steroid, early. For these I need some food so I have toast and tea. I have to take the Temozolomide one hour before the radiotherapy starts because its role is to render the cancer cells more vulnerable to the radiation. The radiotherapy time varies between late morning and mid afternoon, and is planned to the minute. So I take the T on the five minutes before the hour, because by the time I’ve opened the four little sachets a couple of minutes have passed.

Now, I must also take the T on an empty stomach, which means at least two hours before the last food (which includes drinks with milk and so on, though water is fine I think). So when Dad offers me shortbread, I’m not supposed to eat it… ooops. I must also not eat or drink tea for one hour after I’ve taken the T. Oh, and then there’s the ondansetron. The T makes me feel quite nauseous in a stomach-churning way. So I take ondansetron thirty minutes before the T.

Yesterday, Dad and I had a plan involving going into oncology early so I could have my weekly bloods taken (reading up on this, there’s a point called the nadir when blood counts, and thus resistance to infection are lowest, and this is from 7 – 10 days). So I’ll take the T en route, grab my ticket, get the bloods done, and we’ll dash off to B&Q to pick up a few bits including the paint for my front door which my brother Dave is going to paint for me. Then we’ll return for rads at 1.38.

I open my sachets as we pass Runway Road, and promptly drop a capsule which slips between the sachet and my mouth as I hold my water bottle up to wash it down.

Stop! I’ve dropped one! Dad obeys, and the water slaps from the water bottle over my face and down my front. We stop in the bus stop but I can’t find the capsule. It’s not on the floor, it’s not in my scarf, or hiding in the folds of my coat, or by the side of the seat, or under the mat.

In your bag? Says Dad? I must admit that very many lost items show up in my bag, including swimsuits and elderly bananas. So I empty it – and yes, there it is, a glimpse of lemon yellow, nestling right at the bottom in the seam. I yam it fast with the remaining dribble of water.

We arrive at 12.25. I grab my ticket, number 22 for bloods, and 21 is on the display so things are looking up. Fifteen minutes passes. No change. Do I ask? I know they have other things to do, and maybe there’s a problem. So I wait. It’s now 1250, and they close for an hour from 1-2. The phlebotomist appears and places the bag over the ticket machine – so I tell her I’ve been waiting – oh I didn’t know you were here I was looking for 21 and they’d gone! I’ve been restocking, you could have come in straight away! Drat. My veins are still missing on the right.

So, bloods done, Dad and I race to B&Q at 1. I choose the paint colour (I was torn between a lovely bright turquoise, a burnt orange and pink, but plumped for the pink – I have standards to maintain). I leave my request at the paint mixing counter and we dash off for the rads…except there’s a complete jam outside and we can’t get out of the car-park.

Finally we creep onto the road with minutes to spare, and I make it through the doors at 1.36. The minute I check in with my barcode I get called and wander down to the waiting area, stopping for a wee on the way – I don’t want to be uncomfortable. I’m getting to know some of the faces in the oncology waiting area, and wonder at the constitution of the waste products being flushed down these toilets. Not much can be alive in the sewers beneath Derriford; the recent research that mentions the amounts of medication finding its way into the water supply via excretion have nothing on this cocktail. These must be among the most toxic toilets in christendom.

Having wondered about the type of tree in the ceiling light panel of the radiotherapy room, I have noticed that each radiotherapy treatment area is named for a tree. Mine is Acer. There’s my clue then. On the wall by the tiny waiting space is a series of oak plaques carved with a poem. It’s taken me five days to decipher with the odd fluorescent light casting shadows in the wrong places, but I rather like it. There’s also a second hand book shop run by POOCH, a fundraising charity founded by a local man I know called Dave Hocking.

I’m getting to know my radiographers now, and we chat about this and that. I know exactly where to put my bum on the gel pad (much closer to the head than you’d think), and I know when I’m central, and which part of my neck needs to press into the rest, and the angle to place my nose and chin so the mask clamps without pressing. As one of them said, correct positioning is as much about me knowing it’s comfortable as it is about them measuring and lining up. The mask clamps, I wiggle my head slightly, there are some minor adjustments as they check either side, everyone except me leaves the room and we’re off.

I tend to close my eyes for the first minute or so, then once I feel okay with the pressure of the mask, I open them. The circular head of the machine begins overhead, then moves across and the imaging plates appear to the sides. This is the checking and lining up phase as far as I can work out. It’s similar to the feeling I get while sitting in my rocking chair at home, when people passing on the bridleway peer in through the sitting room window. Some even shade their eyes to get a better look.

Then the whirring starts. There’s a clunk and a jerk as the slab I’m on moves into position. At this point there’s nothing in front of me beyond the blurry bone-coloured plastic and the dark ceiling; in my peripheral vision to the right appears the machine head, like a sun rising. Pure 60s sci-fi, ominous, detached yet intrusive. When you feel someone’s eyes boring into your skull, this is the physical manifestation of how that feels, being probed by an alien you can’t quite see.

The machine head swings over the top, close to my face. The central area, glass-covered and framed by white plastic, turns. The machine head moves to the left, tilts on its axis, then begins to swing across and back to the right. The beep comes, and then a sound like a dying wasp trapped in a glass. This is the sound of the radiation, the particles being accelerated perhaps. I can feel it, a slight tingle that oscillates with the frequency of the wasp sound. All the while the dishwasher whirr continues in the background. There’s another beep, and the machine returns from right to left, tilting and stopping just above my left temple. Then it’s back to the middle, the machine staring straight at me from a foot above my face. There are some holes, some grey plastic parts. The reflections hide much. A blank, empty stare. What’s it thinking? The radiographer reappears, unclamps the mask, and I wait for the head to be raised so I can sit. All done. It’s taken maybe 20 minutes in total.

We return to B&Q, but not before I’ve eaten a rather nice fruit scone and then a Crank’s egg and salsa wrap from the oncology café. At this time of day I’m always hungry, and able to eat. Later on, I start to feel yeuch and eating isn’t an option. At the weekend with just the T and no rads, I felt slightly less nauseous. I’m unsure how much is T and how much is rads, but I think there’s a definite effect from the rads. I’ve taken to eating around 8, having popped an ondansetron a bit beforehand.

After three or four sessions in Acer my scalp is becoming sore, and I can feel some heat on both sides. The scar is reddening. Last night I used cold-pressed coconut oil as recommended somewhere on line, and gently covered the warm and sore areas along the right parietal area, and on the left where the rays have come through. These are the areas where my hair will fall out after 2 – 3 weeks, which will actually make it easier to oil, so there is a god.  It felt better, post oiling, although I did look like a Brylcream girl. I washed it out with my gentle shampoo this morning, and it feels far less sore. I also get a right-sided focal headache that begins shortly after the treatment, and worsens till I go to bed. I’m taking paracetamol for that, but it’s perfectly bearable.

Another bonus is I’m sleeping. I feel generally drained, and tired in a can’t-be-arsed to do things kind of way. I can walk pretty well in the morning, but less so in the afternoon. I don’t feel sleepy. When I go to bed, I nod off in minutes (I never do this normally) and wake between 6 and 7.30. I can quite happily nod off again in the morning if I don’t get up. I’ve lost my morning heat sensitivity too, which I think is more down to the low dose of steroids. This morning I showered Bun, who was pretty manky. After that we went for a walk at Long Ash, but it was so hot I couldn’t bear the sun. I’m rocking the keep out of the sun look, but each time I move the hat blows off.

Today I have my weekly review with Dr Pascoe, and she’s happy with how I’m feeling and my blood counts are fine which is nice to know. She asks about headaches and nausea, and warns it’s likely to worsen since I’m only at the end of week one; however, the area being irradiated is relatively small. She shows me the prescribed area – the larger one I noticed at the start is actually a slice taken vertically through the brain rather than horizontally as I’d thought. This corresponds to a 3cm margin around the tumour site. Sarah says we’ll try to stop the dexamethasone altogether by the end of this phase of treatment if everything continues to go to plan.

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IMRT treatment area through the horizontal plane
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IMRT treatment area through the vertical plane

I take my Temozolomide and go up to the Mustard Tree to await my radiotherapy slot; there I get chatting to two women with breast cancer. It’s the first time I’ve really engaged with anyone in the center generally, which isn’t like me at all. I wonder if it’s to do with the can’t be aresed-ness this week. Making conversation isn’t something I feel like doing. Nonetheless it was good to chat. Both of them volunteered that if things don’t work out for them (and I don’t know the details) they’re intending to stop treatment at the point when they become ill, to make the most of what they have left and to let nature take its course. Me too I say. We talk about wills, and about advance directives, both of which I need to address. I also learn the details of their recent marital breakups and we agree that friends and family are where it’s at when you have cancer. All in 20 minutes, cancer’s as much of an icebreaker for letting it all hang out emotionally as wild swimming.

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