I was deliriously coming out of sleep some time during the night, to one of the Health Care Assistants taking my obs and shoving the temperature probe under my arm (because I can’t have it in my mouth because of all the surgery I’ve had). I swing my armpit open and the probe goes in and slips around because apparently I’m super sweaty. I hold it up there for her while we wait. I forgot to ask if my temp was OK (it would have been, it has been for about a day by this point, and she would tell me if it was high) because I got distracted by the fact that I just realised I’m completely wet. The spot I’m sitting in is wet, my clothes are all wet, I’m sweaty baby. And I slightly hallucinated this dream before I woke up that since I still wasn’t getting better they were trying this new experimental procedure on me (they say dreams imitate life). She leaves, and as I’m lying there cold and freezing and just woken up, I actually can’t remember what it is I have to do in order to warm up. I have no actual concept of what it is, what one does, to warm up.
It’s weird because by this stage, my fever has passed. Why am I so wet all over.
A nurse comes in for something else – to connect me to antibiotics, I think. And I ask her if it’s possible to get the bed changed because it turns out it’s all wet.
‘We have a white one, but no blues,’ she says, and I quickly try to translate this into something I can understand. Whites must mean sheets, blues must mean blankets. And suddenly it all just feels too much, getting the lights on, getting the bed remade, and so I say ‘no, don’t worry’.
I shuffle my blankets around at least, find another set of clothes I can wear to go back to sleep in that are dry, and climb back into my slightly wet bed and try and go back to sleep.
When I wake in the morning, it’s happened again. I’m rather confused by the whole affair. My clothes I’d been wearing have a strange sweet smell on them that is certainly not sweat. I can only think that something they’ve given me has caused my body to try and open its pours and cleanse itself of it. There is one different infusion they gave me that evening that I hadn’t had previously, plus an additional traumatic event that happened (yet to be written about). Perhaps they are somehow related. (This same thing happens for the following nights, but to lessening degrees. Always at night, always the same scent. By about fourth night, I appear to be back to normal. Strange.)
When I wake up from that strange, wet, sweet smelling, sleep, I am suddenly so grateful that I’m in my own private room and have my own bathroom. I get up and have a long, cleansing shower. I also take the clothes I had been wearing in with me and wash them too. The scent lessens when they dry, but it doesn’t go completely. Baffling.
I opened the curtains before I showered because I want to see London every second I can. She was still sleeping. The days are certainly getting shorter.
But when I got out, feeling clean and refreshed, the sun was rising and she was waking. Clarence and I had our breakfast by the window, looking out.
The days were slowly closing towards my next chemo and I couldn’t face the idea of not having any of them spent in the outside world. I had a day of appointments on the Friday with pre chemo bloods, Onc chat, and PICC line dressing change. I also had an appointment with the Audiologist, which I was desperate not to miss.
Additionally, I had a package turning up at mine on the Thursday evening that I’d ordered to arrive sometime last week, but I obviously hadn’t been there. I’d scheduled the re-delivery for the latest possible delivery date, which was Thursday. It was a birthday present to myself of a selection of some of my favourite Australian snacks, and I wanted it! So I had my mind set on going home on Thursday. I also wanted to get a couple of other things ordered and so I needed one working day out of hospital for it to happen (even though I wasn’t really going to be home, I’d at least be there to take in any packages that arrived).
So on Wednesday, when I saw my doctor Lee, (I’d called him my second fave previously, but I think he’s just equal fave, really – he’s the ‘one expert, one go’ guy who succeeded with my veins), I said that I was going to go home. He said he’d start chasing up people and trying to make it happen. One potential issue would be that one of my consulting group of doctors might not usually get together and see patients until Friday. I wasn’t going to let some admin get in the way of me going home, so I said either they send me home on Thursday, or I’ll just leave. He also said the same group had ordered an ultrasound, which I was to have that afternoon. Neither of us really understood why, since I’d literally just had an MRI of the same area, but fine. If I had to do it, I had to do it.
My Onc dropped in to see me too, with Lee in tow. He’s the Onc of the infamous cage incident. But I would like to say that apart from that very weird conversation, he’s been really good. He’s taken the time to explain things to me, and to answer any questions I might have, with patience (I have a lot). He listens to everything I have to say, and he never condescends, he speaks to me like I know what’s going on. I’ve really felt like we’ve been working together to work out what’s happening, as opposed to me just being the patient and him being the expert. I’ve even had things to contribute that have been useful for him, and have added in pieces to his puzzle. It’s all been very much appreciated. I will say, there was a follow up to the cage incident when I told him that it was a really unhelpful conversation for me to have had in that moment. He’d then told me that he was not saying those things because he didn’t believe me, but because he was trying to understand why radiology was doing ‘something unnecessary’, since the scans he uses ‘don’t require it’, (I explained again that I’m sure they do). Hilariously, and actually kind of sweetly, they’d put on my file ‘not to use the cage’ for the MRI I had on Friday, so he’d asked if it had been there. I said yes, there was still a cage, I’m pretty sure they can’t do it without it. I think you need to let it go buddy, I really appreciate you trying to make it easier for me, but I don’t think it’s a battle worth fighting. I think the cage is here to stay. It’s cool when I can handle an MRI, the cage doesn’t bother me. It’s just when nothing else is going right and I feel like I’ve been left alone, the feeling of being trapped in gets all encompassing.
Anyway, that aside, when i saw him on the Wednesday, he had also reiterated that I should be able to go home on Thursday – from his point of view, there was nothing to keep me here for anymore. The infection was gone, my bloods were as good as we were going to get them. I was going to get way more benefit now from getting out of here for a few days. I also mentioned that I have all my pre chemo meetings on Friday, which he said I probably didn’t need to do, since they’d seen and monitored me so recently. That was a relief! Although I have to go in for Audiology (which I’m keen to do), it would be so nice to have a bit more time outside of hospital/cancer centre walls.
The ultrasound went smoothly, lots of gel on my face, running a big wand over everywhere. Before she started, she’d asked me just a little bit about what had been going on and I filled her in. I said I didn’t expect her to find anything other than just a bit of residual swelling. When she finished, she said she hadn’t found anything other than just a bit of residual swelling. Cool. I’d actually had to walk to a different building for the ultrasound, which meant I was taken through a secret (staff only) tunnel connecting the main building with the brand new Proton Beam building, and the Cancer Centre (we exited here and walked to the ENT building, which was next door but not special enough to be connected via tunnel apparently). I’d gone down it once before and it always feels exciting. Then I just walked back and got some fresh air, which was amazing. Before I went, I’d joked with my nurse that once I’d smelled freedom, I might not come back. She’d laughed and said to make sure I left some things so she could be sure I hadn’t done a runner. I did return, but only because I knew I’d be leaving the next day.
The ultrasound actually caused me some issues later with my wound on my face. I am frustrated beyond belief that we had ALMOST HEALED it last week with the combination of antibiotics. But when we’d switched to the antibiotic that had ultimately been the right one to bring down my infection markers and start getting my constant fevers under control, within a day the wound on my face had opened back up and now it’s huge. (Everyone seems to think it was a coincidence that it almost healed when I started taking the antibiotics and stopped when they switched. They think it just happened for no reason and just happened to coincide with having antibiotics. I said that made no sense and I was certain it was the antibiotics, since the second I started taking them it stopped having pus coming out of it and it started to heal, but we had to agree to disagree, which again left me once again with nothing). I have a huge hole going through to my face (which is scary), and a huge scab covering it. But the ultrasound had softened and dislodged the scab, so in the evening, there were holes around the edges of the scab that I couldn’t get to close up. So I had loads of pus streaming down out of the hole and it’s all just a bit stressful. I don’t like having an open wound in my face (funny that) and I also don’t like having a huge scab on my face (what a surprise) and when, after 4 months of dealing with it, it had almost healed itself, I can’t begin to explain how demoralising it is to have it back and getting so much worse. And no one has anything to suggest to heal it.
I am at least holding out hope that the antibiotics I’ll be given for my next round of chemo might help to get it under control again at least a bit. It’s just so frustrating. I’m almost completely bald and won’t have my hair to fall over it and my huge scab will be on show to everyone. I’m contemplating finally wearing an eye patch over it when I go out. It sometimes starts streaming with pus when I’m out doing things which is pretty antisocial, so I think it’ll be easier to just cover it up with a plaster then throw a patch over it. I could have some fun with that and wearing a cool eye patch will look much better than having a weeping scab.
As one of the last things to sort out before I can leave, they wanted another blood test from a vein, not the PICC. A doc I didn’t know came by yesterday and tried to do it. I gave him my ‘one expert, one chance’ spiel and asked if he was an expert. He said he was. So I said fine, I would give him one chance. I have these two good veins that seem really easy (to the right person). Lee had used one, this guy decided he would go for the one on the other side. He failed, squandered his one attempt, so no blood was taken yesterday. Game over.
But again, on the morning of my LAST DAY, they insisted on getting blood from a vein. So I said I will only allow Lee to do it. He popped his head in to ask about something else and I said ‘apparently I need bloods and I’d said I’ll only allow you to do it.’
‘Shall we do it now?’
So he went and got his things and came back. He went into the same vein he did two days ago and once again went straight in, I hardly felt it, and he got his blood. I thanked him and told him again that he really is an expert. He said it was funny, because he hadn’t ever been particularly good with blood taking (which begs the question why he’d said he was an expert in the first place, but given that he succeeded spectacularly, I’ll let him off), then he said – and get this – you just have good veins.
I’d never been told that before, but he does seem right – for the right person, I do have good veins. The people who struggle are just weird.
5 Comments Add yours
Hi, this has probably already been suggested, but can you have a referral to the wound care team? They should be able to help you. Sending you a big Welsh cwtch (which is a hug).
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When a patient asks specifically for you to take their blood because you always get it and know one else will do, there is an inner happy dance that goes on 😊
You are absolutely right, it’s all down to the ‘feel’ of the vein and not rushing in just because you think you can .. comfortable patient, comfortable nurse, successful blood test.
I hope you get to go home soon. Thank you for sharing, love reading your updates x
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What an adventure! I love the compliment ‘you’ve got good veins’. Yeah you do!
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Your posts always uplift and inspire me. I realize my health issues are nothing compared to what you endure. Whenever the pain or anxiety raise their ugly heads; I think of you and smile. My motto is if Jen can keep on going so can I. My thoughts are with you and sending warm wishes that 2nd session of chemo will be tolerated better.
Ohh that means a lot! If I can make someone smile in a difficult moment, that’s just so beautiful. Here’s to smiling against our adversities (and obvs sometimes having a well-placed cry whenever necessary).