I’ve had the trifecta now, haven’t I – chemo, radiotherapy and surgery. Though of course, now we know the nuances of cancer treatment, we’ve learned that there are loads of other weird and wonderful things like immunotherapy and TKIs and probably lots of other stuff. Some of which I’ll hopefully find out about. Options, options. That’s what we want.
But for now, let’s get in the spotlight……. RADIOTHERAPY!!!!!!
The crowd goes wild.
So the zapping itself doesn’t take too long. First step is to make sure they know what music I want playing that day. It mostly varies. No one else even seems to have music playing while they get zapped but for me, they know to crank it. And everyone else waiting outside gets to hear it too. This week it’s been Franz Ferdinand. I’m unbelievably excited to be going to see Franz Ferdinand live tonight, so I’ve decided to have some build up to it. I saw them first in January 2006 with my bestie Katie at a festival. We were right up the front for it and they were brilliant, we’d gone to the stage early to make sure we had prime position in the front row. I could almost see up Alex Kapranos’s nose. It was fantastic. The next time I saw them was with my dear friend Sean in 2013 in Sydney. I was living in Canberra at the time, but I went to Sydney for the weekend to go see them. We weren’t quite front row I don’t think, but we were pretty close and it was such a beautiful night and one I cherish. In fact I was meant to be going to this gig with Sean too, but it’s a postponed concert thanks to Covid (it was meant to happen back in March) and between then and now, he left me. Flew on back to ol Sydney, leaving me to go to Franz Ferdinand all by myself.
That’s a complete and utter lie, that last bit. I just wanted to wallow in self pity for a moment that my friend dared move away from me. Grumble grumble. What on earth is he thinking, having his own life with his own priorities. Geez.
No, no, I’m going to have a fantastic time. In fact, both my parents are coming with me, as well as my lovely friend Sarah and we’re going to have a bloody ball. But you will be missed, Sean. I’ll send you pics, I promise.
But back to radio, thanks for coming on that tangent with me. What have I got for you.
Exhaustion is the big one. I’ve never been so tired. The two weeks were the worst and then it got a bit better but it’s been getting worse again the last couple of weeks. I’ve also been doing a lot. Perhaps too much. But as someone who never day naps, it particularly stands out when I’m texting a friend somewhere around 2pm and falling asleep at the same time. I’m sleeping pretty well at night time though, which is good. Though it never lasts me long. Tired tired tired.
Deafness. I’ve already lost most of the hearing in my right ear, thanks cancer. Yes, I recorded and mixed a whole album with only one functioning ear. It really takes a lot to hold me back. But I’ve noticed in the last week or two it’s got worse. And the tinnitus in the last few days has been very shouty. But the other ‘cancer progression’ symptoms haven’t got worse, so I’m hoping it’s to do with RT. In fact, one of my RT friends (a post to come shortly on them) said he was warned about the RT potentially affecting his hearing, so that was good to know – I think his was fine, and he’s finished now. I mentioned it to my RT contact person when I had a very quick, informal chat with her which I’m guessing was meant to be some form of treatment review (quick and informal suits me very well), and she mentioned that yeah, it could be the RT. It’s pretty wild not being able to hear or see on my right side. I don’t really notice it hindering me too much when I’m just pottering around at home either on my own or with visitors, but when I’m in a loud, busy place with lots of people, it starts to get a bit trickier. It’s very true that you notice your disability a lot less when you’re in a space catered to you, but when you go out into a very ableist outside world you realise just how difficult it is for you to exist in spaces that other people (including past Jen) don’t even think twice about. What’s that saying that you don’t know what you’ve got until it’s gone?
My jaw opening has been significantly reduced, and it was already pretty rubbish. I knew someone who had radiotherapy on his face (he also had to wear an eyepatch, which is cool! He is now dead though, so that’s not great…) and I remember him telling me it was worse than chemo, worse than any surgery he’d had. I’d heard similar things echoed by other people who’d had RT (radiotherapy – for some reason shortening it to RT really amuses me and I don’t know why. So I’m gonna do it.) on their face. But he couldn’t open his mouth at all. Some combination of the surgery he’d had and the radiotherapy meant he had to talk through clenched teeth and he could only drink his food. I’m not there, thank goodness. It’s not that bad, but I can only fit one finger between my teeth. Not even a thumb. So that’s…. ok… but also not great. So I’m just keeping an eye on that.
Mucus mucus mucus. Everywhere. En masse. So apparently RT dries up your saliva but makes you produce lots of mucus. For normal people, this means a constantly runny nose. For me, it means it’s all coming out my face. You know, that huge hole in my cheek? Yeah, that. I mean to be honest, it doesn’t mean much other than that I really need to change my dressings more often. And that I’m more likely to have leaks. It’s not pleasant, but it’s also not the end of the world. Hopefully it’ll start to go back to normal when RT ends. Though they say symptoms peak around 2 weeks after it finishes, so I’ve probably got a little longer until it goes back to normal amounts of mucus. My food and drink also tries to make its way through my cheek too so I guess a bit of mucus is the least of my problems.
Inflammation. Everything is puffy. My mouth, my cheek, my face, my jaw. But inflammation-from-RT puffy is better than cancer-rapidly-growing puffy, which was the case a mere 4 weekish ago, and appears to have abated a bit. So I prefer RT puffy. All the types of puffy make the hole in my face bigger though, which means more things attempt to escape out of it, which is always wild. But the fact that the cancer-rapidly-growing puffy seems to have receded slightly gives me all the hope I need that the RT is doing what we hoped it would, keeping cancer progression in check for a little longer…….
That hope is really keeping me going. The hope that it might be working, that it might buy me more time. I mean… the chemo only bought me 4 months so we are looking at such tiny numbers, but I’ll take it, if I can get it. And things have been a lot better since they stopped talking about my death constantly. Though I did have another little reminder yesterday…
A nurse I don’t know grabs me after my zapping sesh, I’m still dancing down the corridor to Franz Ferdinand, which is still blasting.
Him: Can i ask you a question?
Me: of course (wiggle wiggle, shake shake, step step)
Him: Do you have the form?
Me: The form?
Him: The doctors form.
Me: What doctor’s form.
Him: The one you have to bring every day.
Me: (pause) Are you talking about the Do Not Resuscitate form for if I die on the table?
Me: No. I don’t do that.
Him: Oh ok.
Me: And we don’t talk about it.
Him: OK, sorry.
He took the dance out of my step, but at least he let it go and didn’t push it. But gosh, was it a reminder how much that had been affecting me for those first few days. I’m beyond grateful to my pain-team-of-dreams for asking them to stop it. I know I always refer to them as my ‘pain team’, and I suppose that’s the main function they perform for me, keeping my pain managed, which is working really well at the moment and is what allows me to keep living around this treatment. But they also do so much more, and having them there to talk to and check in about all the things every few days, or week (depending on need) has been just… everything.
So. Two more days of zapping, Can you believe it? I’m so nearly finished. 6 weeks done. Wow. On Saturday I’m finally getting my tattoo!!! While I’m there, I’m also going to see if they can fit three people in sometime over the next few weeks for MUM, DAD AND I TO GET MATCHING TATTOOS while they’re here. How cool is that?!!!!!!! We’ve decided on the design, and I can’t wait to show you all once we’ve done it! But for now, hopefully I’ll get my first one, the one I was meant to get ages ago. Watch this space.
Then on November 12 my album will be released! Gosh, it’s all happening! Then on November 21st, I’ve got a phone consultation with my Oncologist……. No scans or anything booked in at this point so that’s interesting… Perhaps they’ll appear in my app at some point, but I get that they need to wait some time post treatment for things to settle down before they scan. Cancer and inflammation can look very similar, for example so they need to wait for everything to settle down before they can scan again. So back to the waiting game, which is always scary. But I’ll do my best to enjoy my time and hopefully things stay stable for a while…
My parents have come to a couple of zappings with me and of course we always turn it into an adventure…