And speed up everything did. The day after meeting Paula, the mask fitting, an MRI and CT scan were arranged for the following two days. None of us could work out why it would take two days to make the mask. E suggested it’s made on the first day and I get to go back and bling it up on the second, bond with it if you will. This sounds crackers, but is done at some hospitals for children who need the masks; volunteers paint them as a character the child chooses, such as Iron Man, to make the mask less scary for the poor kids, and help them feel brave. *wibble*
The actual reason for the process taking two days is that it’s not just a mask, it’s a whole head brace, designed to keep your head as still as possible, so that the radiotherapy beams target the tumour very precisely, damaging less healthy tissue. Day one is for creating the back half; essentially an egg cup moulded to your head that you lie in for radiotherapy.
The room devoted to moulding the back half of my head had a row of cupboards and a worktop along one wall, like a kitchen. The rest of the room was bare apart from a plastic sheet on the floor, with a single chair on top of it, facing a full length mirror. It looked like something from a fairly specialist corner of the internet. I put on an hospital gown, sat on the chair, and the technician put a white swimming cap on my head. He then wrapped clingfilm around the rest of my hair hanging below the cap, my neck and shoulders and smothered the whole lot in vaseline. Woah dude, could this get any more niche? Someone, somewhere would pay serious Bitcoin for footage of this shit. He then got old fashioned plaster of Paris soaked bandages, the kind that used to be used to set broken limbs, and started wrapping the back of my head like I was an Egyptian mummy. Once dry, the eggshell was pulled off my head, and we were done for the first part.
That afternoon, I had to return for an MRI. Using some sort of Dosimetrist magic, this MRI would be composited with a CT scan taken the next day whilst wearing my new mask, both to precisely target the tumour, and to act as a pre-treatment ‘before’ photo – something to gauge future treatment success or tumour growth against. For many parts of your body, Radiographers will tattoo small dots on your skin to line you up properly. At least with head and neck radiation, the alignment marks are made on the mask instead. No borstal tears for me!
Walking through the hospital grounds, I stopped to look at all the trees and benches placed in memory of people who had died, read the accompanying plaques and have a think about what they might have been like. This is really important to me since getting my diagnosis, to take care to remember people who haven’t been so lucky as me. These sort of memorials are so touching if you think about it. The person may be gone, but something both beautiful and useful has been placed in their name. The benches provide a place for a moment of contemplation in a busy world, the trees provide colour, oxygen and a long term connection with the person. The annual change a tree goes through remind us of the circle of life. If it comes to it, I’ll have a magnolia please.
All this Thought for the Day style musing made me late, so I had to run for the appointment, and was a bit out of breath when I arrived. Mistaking this for fear of the MRI, the radiographer offered me a sedative, worried I might wig out in his machine. No, we’re cool. I asked if they had an upside down telly, like the MRI in the RVI. No, they kick it old skool in the Freeman. Music only. Bah. He asked what music I’d like to listen to while in there. Is it just me, or put on the spot like that, does everyone’s mind go blank? Does anyone have the wherewithal to say, ‘got any Megadeth mate, but only pre-temporary break up era, obviously?’ So I said “oh I don’t mind, whatever you’ve got” and immediately regretted it. They’d probably choose the Carpenters or Megadeth.
They actually chose Madness’ Absolutely album. It could have been better, but it could have been a damn sight worse. I was about 7 when that album came out. It may be coincidence, but I wonder if they always try and chose music that comes from a person’s childhood, that takes them back to the school playground? If they do it on purpose, it’s a pretty clever tactic for relaxing people. Given that there was no telly, and my brain wasn’t freshly fried from a series of seizures, this MRI was way more boring than the last one I could remember. There must have been a dozen or so separate scans, with a brief silence in between. The scans are noisy, and each has a rhythm of its own. Some sound like the hearing tests you’d have as a child. Beep…beep….beep. Some are more frenetic. To be honest, I’ve danced to worse at 4am in the early 90’s. Nice one, top one, sorted.
Once done, I hopped up to leave and got as far as the anteroom before I noticed the hole where they’d put the cannula for the contrast dye was pumping out blood like a um, vein. I’d left a trail of blood behind me like a horror movie. Still convinced I was a panicker, the radiographers made me lie down again, bandaged me up and hosed the place down while I apologised. The younger one gave me a look and said
It’s a hospital. It’s where adults get to play with gore! We love it!
The next day, I returned to finish off the mask. The mould of the back of my head had somehow been transformed in to a clear plastic shell, balanced on five blobs of wax. Gary, the technician got me to lie with my head in the egg cup, and somehow moulded and shaped the wax until my head was both comfortable, and perfectly lined up with laser crosshairs shining from the ceiling, all the while telling me about his penchant for browsing Malibu real estate websites so he can find his perfect mansion for when he wins the lottery. I then went for a coffee while he somehow turned the wax blobs in to something more permanent. This whole process is some serious magic.
While waiting, I bumped in to Edward, who I’d met a fortnight ago at Maggie’s. Now there’s no reason why someone should remember me, even more so given that he was at the hospital for a monitoring scan, and was therefore no doubt stressed about what it might show, but he clearly had no recollection of me, our long, recent conversation or even the brain tumour support group session, of which he had been a vocal member. Nonetheless, he was his charming self and we essentially had the same conversation we’d had a couple of weeks ago. Given that I’d said when I first met him that you’d never know he had a brain tumour, this showed me how deceptive appearances can be in the brain tumour world. I remember a similar phenomenon with two of my grandparents who had Alzheimer’s. People develop covers for their condition, to reassure themselves as much as anyone else. Charm and force of personality go a long way. There’s a period in the course of that disease when anyone who meets the person in passing thinks they’re perfectly fine. They could probably even fool professionals, but their friends and family know fine well things are very wrong. The covers don’t work because one of you has all your shared memories, the other has none. I hope Edward’s scan showed his tumour was stable, and he can continue to dispense his charm to everyone he meets for some time yet.
In no time, Gary was ready to make the front of the mask. He pulled the swimming hat out again.
Gary: please can you make your hair in to a tube?
Me: A tube?
Gary: Yes, you know, a tube. Like ladies do with their hair.
Me: Do you mean….. a ponytail?
Gary: Is that what you call them? Yes, a tube please.
I still can’t stop laughing at this. How does he not know the word ponytail?
I thought the swimming hat had been a one off yesterday, to protect my hair from the plaster. Oh no. Gary said I would need to wear it for every treatment, and he’d sprinkled it with Lily of the Valley talc, just for me. Bless him, but it had taken all day and a long shower the previous night to shake off the smell of latex, so to find I’d smell like that for a whole six weeks was annoying. Watch out if you come in for a hug while I’m having radiotherapy. You’ll be walking round all day wondering why you keep thinking about hot water bottles. The smell of latex will always remind me of radiotherapy now.
A lot of people are scared of the mask fitting, as it has to be very tight to prevent any movement, so it can be quite claustrophobic. The mask is made from a thermoplastic mesh, which is warmed in water, until it’s soft and really quite hot, then draped across your face and pressed in to all the contours to get an exact fit. It takes a few minutes to cool and harden, and then you’re done. There’s a hole pre-cut for your nose, so you can breathe perfectly easily throughout. Frankly, I found the whole thing quite relaxing. It’s not that dissimilar to a hot towel treatment at a beauty salon. Lying down in the middle of the day with warm plastic on your face and two blokes massaging it? I’m not complaining. One aspect that is a bit weird is that the mask is so tight, you can feel the blood pulsing through the veins in your face. It’s not unpleasant, just unusual. You don’t often get to feel your heartbeat via your jawline.
Like the scanning room at the RVI, all the mould, scanning and radiotherapy rooms have the backlit ceiling panels for recumbent patients to look at. I asked to take a quick photo for the blog. Gary and the other technician, who looks *exactly* like the guy off Modern Family clearly thought I was crackers, and said as much, but here it is anyway.
Directly after the mask was made, it was round the corner for a CT scan wearing it for the first time. In the changing room, the radiographer explained that as a control, during all scans and treatments, every person in the room would need to check my name, date of birth and hospital number. To save time for all of us, they like to take a picture of each patient holding up their hospital number so they can easily confirm it’s you and just ask for date of birth as a double check. However, as the photo constitutes part of my medical record, it may not be published, displayed or reproduced in any way. Good job. I hate having my photo taken at the best of times, and had just spent 10 minutes with boiling hot plastic on my face, giving it an alarming cherry hue. Here is an artist’s impression for you.
Wearing the full mask for the first time was strange. Now it was fully cooled and hardened, there was no room to move, or even open my eyes. It’s moulded to your lips, and chin so you can’t really speak. When the radiographers chat to you, the best reply you can manage is a kind of ‘hnng hinng’ instead of ‘ok’. With your eyes closed, it’s hard to tell what’s going on. The scan couch moves, but you can’t tell in which direction. The quality of light changes but you don’t know if it’s someone moving past you or you’re going in to the machine. For an incurably nosy person, this will take some getting used to.