Around four weeks into RT (radiotherapy), two weeks from the end, it started to really hit me hard. I had been so blasé about it – last time I was writing, recording, editing and mixing my album after I got home from the hospital each day, making sure I met the deadline to get it to my mastering engineer, about a month into my RT. But this time, the RT came straight after chemo, it was the second time irradiating the same tumour (and new ground for them, I later learned), and I now had to navigate the world blind – everything I do now takes a lot more work on my side to pull it off. My head and face were so inflamed I was puffy and swollen and sore. I was exhausted in a way I had never before experienced, and needed naps every day. I could hardly open my mouth at all anymore, and my mouth was so sore that most foods hurt it. And the huge hole/wound in my face had taken to sporadically bleeding, sometimes multiple times a day. I didn’t have the energy most of the time to even listen to messages from my friends, let alone wrestle with Siri to reply, and I was really feeling that disconnect. I was just concentrating on getting through it. But each day got harder and harder to keep going.

I was scheduled to finish on Wednesday the 27^th of March. On the 21^st, the Thursday before, Dad arrived back from his adventures in the Great Southern Land, and he rejoined our last few daily pilgrimages in to the hospital, even on the very day he arrived, turning up at the flat a mere half hour or so before we were heading off.
On the Monday before I was set to finish – only three more days to endure – as I was dragging my poor shattered body around, slowly trying to get ready to go in, Mum came to me with a thought so profound, something that had just never crossed my mind.
One hand placed gently on my leg for reassurance she said: ‘You don’t have to go in if you don’t want to. You could just… not…’

When we get our cancer diagnosis, we are immediately plunged into a world of places we need to be, appointments we have to make, treatments we need to have. Stripped of our autonomy, we become automatons – just one of the many patients crunching away in the great cancer/hospital machine, showing up while various extreme and often traumatising things are done to us. I’m very grateful for my access to such things, but I’ve learned (through experience, and also a lot of research) that it is important that we find ways to take control of our own health and treatment, using our various med professionals to help us out where we need them, more as members of our teams of many experts and options than the ultimate God-like status that it often feels closer to. They can certainly be very helpful at times, but I have learned just how much they don’t know, and they are just making educated guesses a lot at this stage. And inevitably, it’s a powerful realisation to make.
But with all the appointments they kept  organising without telling me, as well as often being made to feel like I was being  called in to the Vice Principal’s office, I had to keep trying hard to actively remind myself that all of this was supposed to be about ME, and if an appointment was causing me more distress and difficulty than I could take, then I could just say no. I actually said to the receptionists about one of the appointments I was told to hang around for but she couldn’t tell me who it was with or what it was about: ‘Can I just decline it? I need to get going and no one told me anything about it.’
Her answer still confuses me slightly:
‘You can… But I’m going to have to let them know…’
‘Um… yeah… that would be great thanks! Please do.’
I guess they didn’t come across someone saying no very often.

But the idea of saying no to treatment felt incredibly foreign. So I kept going. And three long days later, I was free.

They asked me to get a quick chest x-ray on my way out, but other than that, I was truly done. I handed out boxes of Monty Bojangles vegan truffles (officially the most delicious food in the world – thanks for introducing me, Sarah, I’m now obsessed, and always ensure there is a box in my cupboard) and cards to my darling rotating Zapper friends.  And I was OFF! I had my follow up appointment with my fave Dr. A, a few weeks later, but lots of time in between to try my best to sleep off the previous 6 weeks. And that is really about all I was capable of doing.

But before long, it was back in to see Dr A. It was just a routine check in/follow up. This time it was just me and Dad – Mum had trotted back to Aus for a bit, as her Aussie passport only grants her 6 months in the UK at a time.
I told Dr. A a bit about how RT had gone, how much harder it had been than I expected, or even experienced before. He told me that he had actually spotted me from a distance one day when Ma and I were getting in the lift. As the doors closed and he got that brief glimpse of me, it worried him. I looked grey, he thought. Not like my usual self. Apparently there was a lot of talk about whether they should pull the plug on it entirely and stop the RT earlier than planned. I had triggered their ‘Quality of Life’ alarm bells. But they didn’t stop it (thankfully), and I’d had no idea at the time that they were even considering it.

The other thing I hadn’t realised before that appointment was just how much we were adventuring into new ground with this treatment. So, I was expecting him to just book me my follow-up scans, but he came at it from a slightly different angle, once again not holding anything back…
‘I don’t want to force you to get a scan if you don’t want to,’ he told me frankly. I never felt like a naughty school kid in his office, I felt like an equal. An expert, even. ‘The fact is that no matter what it shows, there is nothing more we can do now, no more treatment we can give you, no more options. So I don’t want to alert you to there being cancer progression that you may not be experiencing any symptoms from yet, and then have nothing I can do to help. I don’t want the scan to be the thing that breaks it to you. I think in this situation, ignorance may actually be helpful, if not quite bliss.’
I got what he was saying. I didn’t like it, but I got it.
‘Would it be ok to get the scan? I want to know. Then, I get it, you’re done with me.’ it hurt to hear it and even more to say it. But it was the truth. ‘If you’re happy to scan me and don’t see it as a huge waste of time (and maybe even if you do), I want it,’
‘Oh, well in that case, I would love you to do it! We’ve never done this all before – giving someone RT twice on the same tumour – I’d love to have the scans in order to complete the whole picture! But that’s not a good enough reason on its own to make you have scans.’
‘Well lucky for you, I want them. So gimme.’

I took him in a little present that day – a copy of my novel and CD and a card. I wanted him to have tangible proof of the difference he has made, and continues to make. I explained that I’m not sure these would exist without him, and the extra, good quality life he has given me. He was very kind in response, saying that it’s patients like me that remind them why they do this. I asked him him to keep taking risks on people, like he had on me, because he will never know how many other projects and dreams he might be enabling. How far the ripples make their way through the world…