I’d been sort of going back and forth over whether I should try to find someone to take to my radiotherapy mask fitting and scan. I like doing things on my own, just getting on and doing it, having an adventure and then it’s all done. But I was scared. I am scared. These things are all getting more intense, more serious. The revelation of bringing a friend along to MRIs has made a huge difference to my ability to get through them. When I feel alone, strapped in and left in that machine, zoomed off into outer space, feeling the fingers of my beautiful friends intertwined in mine, hearing ‘apple bottom jeans’ sung back at me, and grasping at the words ‘I love you’ and ‘I can see your whole body’ is absolutely everything.
And I wanted that again. To feel like I’m not alone, going into this next scary stage that they suspect won’t even help, that I might not even make it to… I realised that I needed some support and comfort. So I started asking around to see if anyone happened to be free at 9:30 on a Friday morning. It’s all a bit awkward, really. Of course people are working or doing fun things like going away for the weekend. At the fencing competition the day before, I mentioned to my brother about how I struggle to ask for help, but I think I want it now. It’s just a matter of finding someone.
‘I’m… free tomorrow…’ He said. ‘I’d love to come if you don’t have anyone…’
Oh friends, in that moment I just felt this sudden rush of… happiness and love taking over me. It felt so, so right. Yes, I wanted my big brother with me. How could it be anyone else? They’ve had a pretty full on schedule with fencing so I didn’t really think that he would have a day free but it turned out he did, on the exact day I needed it. And of course there was nothing he’d rather do than come with me on that day.
There’s 16 years between us, and we grew up in different countries – he in NZ, me in Aus. We saw each other regularly enough growing up (well, for me anyway – he was almost grown up already by the time I appeared on the scene) and I always looked up to him so much. My big brother whale who would come visit and splash around with me in the swimming pool and we would fill the spa with bubbles so thick we could hardly see for the foam. He got the first tattoo, and he had children so I didn’t have to. Two brilliant children who I love so so much. Though they’re practically adults now – 16 years between me and my nephew and 18 to my niece. Wow. What an absolute privilege it’s been to be able to see so much of their lives and see the incredible humans they’ve turned into.
Jules seemed really happy to be able to come to my big mask day with me. This is something I have learned – people actually want to help. They want to hold my hand and drop food around and come and cook for me. They don’t do it out of some sort of forced obligation, they actually want to be there with me. I don’t always have the energy to accept, but when it’s something like this, I realise how much I want him there and it’s nice to realise how much he actually wants to be there too.
So it came to Friday and off we went. There were tube strikes and I was going to bus but decided last minute to get an Uber. But of course everyone was getting Ubers. We’d planned to get there early, so all was good but Jules got there before me and went off on an adventure to get us coffees. When I arrived and got to drink it, I declared it one of the best coffees I’d ever had. I don’t know if I just needed a coffee, or any number of things, but it was right up there.
I’d checked that I was allowed to bring an emotional support human – the Cancer Centre is still not allowing any additional people in but the main hospital is and thankfully, the latter was my destination. So the whole troupe of us – Me, Jules and Clarence – made our way to the basement and were called in quite quickly.
The first step was making the mask. I think I said quite early that I was scared and the guy explained all the details of why the mask is so important and why we need it. Obviously I know it’s necessary and important, but it’s somehow comforting and calming to hear all those details. He told me that at any time through the process, I could just put my hand up at any point it got too much and we would pause. I’d heard there were a few different ways to make the mask and one involved strips of plaster, which I really wanted to avoid. I don’t think wet plaster would go well with the dressings covering the huge hole in my face. But thankfully we weren’t going down that route. They got this big bit of heavy sort of gauze-y plastic with holes in it and heated it up, which they would then pull over my face and it would cool down and set as it perfectly shaped to my face. But first, music. ‘The Beatles, please’ I said. Everyone seemed happy with this decision, keen to embark on a Beatles dance party on our Friday mornings.
So I just sort of lay there and they just sort of pulled the thing over my face and clipped it in place. Without much fanfare, it was on. It actually felt quite nice and warm and not too scary. I had a moment of feeling like I might stress when she said ‘just another 12 minutes, you’re doing great!’ 12 minutes felt like a long time. But then I got distracted trying to mumble through the mask that it was a cover of ‘A Day In The Life’ playing, not the original. Then I tried to tell Jules to take photos, which the mask making radiographers translated for me – not their first rodeo, I’d say. Mumble mumble.
We got through it! And yes, I wore my skeleton dress, pirate boots and a lot of fishnets. The radiographers all seemed to appreciate the outfit.
Then we had to go to the scan bit. Jules came in with me to paparazzi for a bit but I figured they’d kick him out for the actual scan. They seem not to want members of the public to get any random radiation. They put the mask on me again and it felt more stiff and uncomfortable than it had (Jules later told me they explained that it would start a bit cold each time before warming to my face. I missed that. Thanks bro). They’d mentioned that they could cut holes in the mask to see through but hadn’t, so I requested eye holes. Then I had a moment when I went to ask why they only cut me one, not two… Oh how we laughed.
They cannulated me super easily for the scan, without any issues, which is always very appreciated (see, it is possible!). The radiographer pulled down my fishnet glove to put the cannula in and straight in it went. Rock’n’roll, baby. It always makes me laugh when I have someone there with me and it all goes smoothly – like… I swear it’s sometimes quite traumatic!! But not today. The scan went pretty quickly and my brain is slightly hazy on the order of these next things but they basically gave me my radiography schedule and told me to sit in the hallway with Jules while they checked the scan.
Jules was brilliant at coming up with some great questions to ask, which I nodded at, feeling slightly overwhelmed. Then he asked if I wanted him to ask them for me, and I just wanted to hug him. Yes, I did. I really did. I wanted someone else to take over for a moment. I’m always having to be so on it, so vigilant during these difficult conversations, and it was just so nice to have someone else help me out for once.
Ok so here are the details. The radiotherapy will start on September 8th, and will go every week day for a week at a time. I guess we reassess things at the end of every week and then ideally will go on for another one, for something like 6 weeks. So that’s about 2.5 weeks away, which feels like a long time with still no treatment, but it’s the quickest they can do it, it takes that long to get it ready. And 3 weeks is much better than the 6 week wait I’d originally been told to expect. Apparently some people are having to wait for 2 months so I’m glad they’re taking me seriously and getting me in quick. I need it.
Mask task successful, it was time for adventures and Jules and I went running around UCL taking awesome photos and having a brilliantly fun time. Then we went and found a rooftop garden for some lunch and a pint. And I insisted we get shots of black sambuca, because what else would you do after a radiotherapy mask fitting?
It’s funny think that I’m sitting here looking back on a pretty big scary day with smiles and good memories, but this, I think, is important. The day I got diagnosed with cancer I went straight to my favourite rooftop bar after, and it’s a tradition I try to keep up – follow a difficult thing with something fun. Make good memories to sit alongside the hard ones. Take back control of days that threaten to swallow you whole. I hope this is something I can influence you all to try and take into your lives. We can’t control what happens to us, but we can do everything in our power to make the most of the rest of it. So bring on the rooftop bars, hot chocolates, brunches, bottles of champagne, fish and chips for dinner, whatever fun event can follow the hard ones. It can be big, or small, but whatever you do, try to accompany each hard thing with something that makes you smile. Because smiles are free and available in great numbers and though they might not always feel accessible, there will always be one there hiding somewhere, just waiting. Don’t plaster it on if it’s not the right time, that won’t help anyone, least of al yourself, but remember it’s there waiting for you.