So my bestie Katie turned up on the Sunday morning. I opened my door and she was standing there on the other side. Katie. In person. On my doorstep. We hugged each other, tears in our eyes. When we finally broke apart, we grabbed each other’s arm weirdly and both said ‘it’s you’.
Yeah, not much gets past us.
The next few hours of sitting on my sofa consisted of many comments like ‘I can’t believe you’re here’, ‘I’m really here!’, ‘this is so strange’, and ‘I love you’. With the right people it doesn’t matter where you are or how much time has passed, everything very quickly becomes normal again. It took a while to realise that the body connected to the voice I speak to weekly from my flat was actually inside it.
Off we set into swims, pub quizzes, pints, walks, catching up with friends, all our favourite things. We scheduled a rest day but ended up talking all day. Oops. By the following day, my face was really starting to hurt. ‘Right,’ I said, ‘tomorrow I need a day where I actually don’t speak or smile because I need to rest.’ So on the Friday she went out and about and I stayed in and remained mostly silent.
But things went kind of downhill from there and by the Sunday evening I was in the worst pain I think I’d ever been in, and it was the type of pain I’d only experienced on specific other occasions – when my tumour was growing. Paracetamol and Ibuprofen wasn’t cutting it. I could hardy sleep from the pain in my face over the Sunday evening and on Monday morning I emailed my Oncology team telling them I was in pain. That pain. They immediately jumped on it, referring me to the Enhanced Supportive Care (pain) people and trying to move my scans forward. Panic mode.
The Enhanced Supportive Care team were amazing. Caroline and Jo hustled, checking in with me once or twice a day and liaising with my GP to get meds prescribed, tweaking doses and sorting it all out, which Katie was then able to pop out and pick up from the local chemist for me. With both of these wonderful women, their compassion leapt out of the phone and I feel held, listened to and supported. It felt so different from the last time I was facing this kind of pain (late last year), when I was getting progressively worse and couldn’t get anyone to listen to me, reply to me, prescribe me meds, hasten my scan, do anything…
My Onc team are just so on it. They have brought forward my PET Scan, which I had on Thursday. They’ve also scheduled me an MRI, which will be on Sunday 31st.
Although I was obviously hoping I would get more time before things started going downhill again, sadly this is otherwise all expected. We have really just been waiting for the day where the tumour starts progressing again and things get worse. None of this should really be coming as a shock to anyone, it’s doing literally what it says on the tin. BUT MUST IT HAPPEN NOW?!!!!!! I knew it wouldn’t take long, but I just wanted a little longer. I wanted to get to make the most of the whole 3 weeks Katie was here, not just 1. I wanted to go to Edinburgh for the Fringe fest, to go watch India fly in a circus in Ireland. For some reason cancer doesn’t seem to want to play by my rules though. Rude. Honestly, cancer mate, I can send you my calendar if you like, let you know when I might be able to fit you in. I think I have some availability somewhere around the year 2071…
We have still been having a lovely time though, I’ve just spent quite a lot of the last week in bed. It’s also given Katie a chance to run around and do a few things around London, then we reconvene for Love Island and a takeaway.
Ok so… Really, everything is pointing to it being the cancer progressing. The pain in my face, the exhaustion, the immediate loss of any remaining hearing in my right ear, my right ear pain, my mouth getting slightly puffy on that side. And so the logical part of me thinks yeah ok, so this is the beginning of the end, it’s time, we’re onto the last stage, the last treatment which may or may not help. As my nurse said, we don’t know yet, but um… you know, we kind of know…
But the other part of me just thinks ok yeah but like give me a week to myself, let me rest, not have to go anywhere or do anything or engage with anyone, and I’ll sort myself out again and we’ll be back on track. I’ve just been doing too much.
The classic old tale of ‘have I done a bit too much or am I actually dying’.
Of ‘I want to make the most of every moment I have, but also physically… that’s not possible.’
I’m actually pretty bloody good at resting, it’s kind of my super power. But you never know you haven’t rested enough until you haven’t rested enough. And then there ain’t much you can do about it.
Anyway, I will keep you posted, obvs. We’re doing fairly well with managing the pain, though I’m taking quite a lot of Oxycodone. A fun side effect is that every single part of my skin feels itchy 100% of the time, which is working on driving me mad, especially in the heat. I’m trying not to tear my skin off, I’m mostly succeeding. The other side effect is ‘difficulty passing urine’, which for some reason is a lot more uncomfortable than I thought it would be – having to squeeze out every last drop is exhausting. But either my body is getting used to the drug, or I’m just making sure to smash a LOT of water, because I think we’re mostly on top of that one now.
I guess the main thing that’s effecting me is how absolutely shattered I am, that for a lot of the time, all I can do is lie in bed. I get so exhausted that I can’t speak anymore, can hardly lift a bottle of water to my mouth, I just need to lie down. I’ve never quite had it to this extreme before. I’m hopeful I’m really just in need of some serious rest. Which is so totally fine and expected. But yeah who knows what’s going on and what’s at play. No one. Hopefully these scans will tell us something. Or more importantly, I suppose hopefully they don’t. Hopefully they show that it hasn’t got any bigger, that the activity hasn’t increased. Hopefully they show no obvious reason for a change to have occurred. Then we’ll all lift our shoulders and shrug. The scans can’t show what degree of ok things are, only if things have got worse. And although everything is pointing to that it probably has, I say we don’t know until we know, so no point in wasting effort on it until then.
So in the mean time, peace out, and if you’re in my part of the world, enjoy this spectacular sun (many apologies to my Sydney/Australia crew who probably don’t remember what a day without rain and floods looks like).