So I was in for 9am on Monday.
I was dragging my heels a bit. I left my packing until late on Sunday. Then I stayed in the bath for an extra hour when I probably should have gone to bed in prep for my big week. Then instead of leaving on time on Monday morning, I decided to voice note a couple of friends who had sent me lovely messages and drink a smoothie. My way.
I ended up arriving at 9:30. But that’s fine – I didn’t have a specific appointment, they weren’t relying on me to be there at that time specifically, it was more just ‘get there at the beginning of the day’.
And I think doing it on my timescale made me feel like I was in control, at least a tiny bit. And as a result I turned up feeling prepared and properly ready. And full of a beautiful energy bestowed upon me through text messages from friends and a beautiful long voice note from my friend Ash in Australia.
I was ready as I’d ever be.
They didn’t get my chemo ready until midday anyway, so I hadn’t held them up. My pulse was high – 135 bpm. I said I’d noticed it was high over the weekend, which is my body’s reaction to getting a permanent cannula shoved in it (the PICC line). But they worried and called the experts (a good idea), who said to pull the line out by 1cm. Last time, they had to do this twice in the first week and the pain it caused in my fresh PICC line wound was wild. But this time I hardly felt it! I think Liz did a good job of putting it in on Friday – she’d told me they’d put the metal teeth securing it in place in really deep in the hole that it would minimise the pain. So whether it was that, or the fact that I’m taking oxycodone for the pain in my face (don’t know, don’t care right now), it was so easy. Phew. My heart rate went down a bit after that so it was decided chemo was fine to go ahead.
It all went pretty smoothly. It runs a bit differently this time – I’m not actually getting the chemo itself for the full 24 hours of each day, like I did last time. I have about 6 hours each day in the cancer centre where they connect me to my Etoposide and then my Ifosfamide, and they send me off with just the 3L of water which has some special bladder protecting thing in it called MESNA. These chemo drugs affect my bladder and kidneys (and potentially brain but hopefully not) so that’s what we’re watching out for this time. I get to wee on a little strip thing which tells me if there’s any traces of blood, which so far has all been fine. Thankfully I don’t need to measure all my liquids input and output this time, which is nice.
Another beautiful surprise is that I’ve had a nurse who I had when I was here 4 years ago, and she was always one of my favourites. We caught up on everything that’s been going on with me – when/where the eye went, my holiday in Australia before the rediagnosis, all the way up to my re-rediagnosis, and being back here again. It felt like coming back and seeing an old friend which… I just can’t really describe how wonderful that was. She’s an absolute delight and I am so glad to have her on my side.
A less good thing is that for the 6 hours I spend in the cancer centre each day, there has been basically no phone reception and no wifi, which feels a bit isolating, but I can always find ways to entertain myself. My phone reception seems to be hanging in so far today, but I’m waiting for it to cut out at any time, as it has the last two days.
Rosa and I had a lovely first evening. They’re now doing microwave meals at the Cotton Rooms so we both got a pasta and sat in the little restaurant and ate it. Rosa cut up a pear for me too which was lovely. Then we went back to our room, chatted and made a tea and watched a movie. Every time I fumble my words or can’t quite get them straight, we wonder if it’s encephalopathy (the scary side effect I hopefully won’t get) but I think it’s just me so far.
I even slept well that first night, remarkably well. I was clearly quite tired. I thought for sure I’d need to at least get up during the night to shed some of the 3L of water they’re constantly pumping into me but I was out like a light and didn’t properly wake up until my alarm went off, which is pretty much unheard of for me anyway. As a result, I was feeling pretty damn good on my second day, which I also didn’t expect! I appeared to have retained a bit of liquid though (probably because I didn’t get up during the night), so we went for a bit of a walk after chemo to try and dispel it from my ankles (Because where else would you hold it? I’m not a camel, I don’t have a hump on my back, so ankles it is).
Day three now, doing well so far. I woke up three times during the night, but my weight was the same this morning as yesterday, so I think it’s evened itself out. I was feeling great yesterday, but I’m starting to feel quite tired today, and random parts of my body are starting to ache. Chemo makes myalgias (muscle pains) worse and as someone who already has fibromyalgia, and has been through this all before, I’ve been expecting it. Not that I was ready for it – it took me a while to work out why I had all these sore patches. All good. I’m sure it’ll all keep going downhill from here – I’m only half way through my chemo and they usually say the side effects are at their worst around day 10 (currently only at day 3).
Guess who sweet talked the nurse into getting his own wrist band? Such a little diva (just like his Jen). But we love him.