I’ll fill you in on the GP disaster soon but there is something else that takes priority for now. As you know, I’ve had to be checking my temperature every 2 hours to see if it goes up. There’s a chance I have no neutrophils due to my chemo depleting them, and they’re the lil cuties that zap our around our bodies trying to keep infection under control. If I have none and I get an infection, I’m in serious trouble. Often a 38 degree temperature is the only thing that will alert me to anything being wrong.
And indeed it did alert me. So at 7:30pm on Tuesday night, after nursing the temperature border line for about 24 hours, I had to rush into A&E.
8pm: I arrive at UCLH A&E.
They get me in quite quickly, straight into my own room. They immediately order me some antibiotics and paracetamol, taking blood cultures from my PICC line. They say they want to take cultures from another vein too, since ‘the infection is probably in the PICC line,’ but I say no, it won’t be the PICC Line (they always just immediately say it is, because it’s foreign to them, but it never is the problem in my experience). Ain’t my first rodeo and I’ll avoid needles as long as I can. I won’t just take them because ‘it’s what they do as routine’.
They were also panicking about my tachycardia, which everyone already knew about already and wasn’t bothered by.
‘Oh, that’ll just be the PICC Line causing it,’ the oncologist had said the previous week as he dismissed me.
‘Yes, I know,’ I’d replied.
But they ordered an ECG and a chest Xray (all of which I’d had last week but fine, they’re easy, check anything you like, I’ll have all the tests please).
I’m so thirsty. Somehow I’ve managed to leave my water bottle at home, so I keep asking for little cups of water which I drink as quickly as I can (without drowning myself, which I tend to do if I try to drink too quickly thanks to my mouth not being sealed in).
They insist again on taking extra blood cultures from another vein other than my PICC Line. I’m reminded of when I got it put in last week and the nurse said to me ‘when you get admitted, they always assume the infection is in the PICC Line, and it rarely is’. I’d nodded, knowing only too well.
But it gets hard to keep saying no over and over, when they keep pushing. And he was nice, and he said he was good at taking blood, he told me he used to be an anaesthetist (which given my history, is not as reassuring as he might think.)
Then he says: ‘I’ll get the ultrasound machine’ and I knew immediately that it was all over. If he is relying on that, he’d have no chance of getting a vein, he would go for difficult veins that aren’t actually accessible, and it will hurt. And that’s exactly what happened. He convinced himself that he’d seen it on the scan so it was fine to go for, even though I mentioned that was not an accessible vein. He tried and failed, and the pain was immense. He left me with a huge bruise, a lump under the skin and a lot of pain. He apologised for not listening to me, which felt slightly like too little too late. He tried another vein and failed again. Then I withdrew consent for him to keep ‘trying’.
9pm: The snack box.
They move me out of critical care into a different waiting zone of A&E.
I ask a nurse if I could have some water, and she says yes, of course, and asks if I’m hungry. I’m unsure, but I think I am. She gets me a snack box. It has a bread roll, a little tub of butter and a wedge of cheese so I make a sort of sandwich which is really missing some Branston pickle (I’m such a Brit).
I can’t eat the apple because I can’t bite into them and the balsa wood knife I’ve been given doesn’t help. So I throw it in my bag just in case (which makes no sense because I literally can’t get into it but who am I to waste an Apple. It might have meaning yet, who knows) and I start on the yoghurt and orange juice.
10pm: Bathroom stop.
I ask to go to the bathroom, so they disconnect me. I have to give a urine sample. I ask again for more water and they give me another tiny cup of it. I’m sure wearing masks makes you even more thirsty.
Midnight: Cheeky lil midnight CT Scan.
My bed and I are rolled out, off onto an adventure.
I didn’t know anyone had ordered a CT Scan so when I got there, I asked what it’s about.
‘For your chest,’ they say.
‘Oh ok, cool. I just didn’t know I was having one.’
They look at each other then back at me before one of them speaks:
‘Wait… what did you come in to A&E for? Not for your chest?’
‘Nope, I just had a temperature and now I’m trying to find out of I’m neutropenic.’
‘Oh so why do you need a chest X-ray?’
‘I guess it’s related to them panicking that I’m tachycardic.’
‘Oh, right, so that is what brought you in?’
‘No, I think it’s fine. It’s been like that since they put my PICC Line in. My oncologists didn’t seem worried about it at all. ‘
‘Oh well we’ve been asked to do this, do you mind?’
‘Oh, no, that’s fine, of course, all good. Was just wondering what it was for.’
It’s quick and like all good CT Scans, it leaves me feeling like I’ve literally weed my pants at the end. Hadn’t had one of them for a while, I’d forgotten just what it feels like and how that very specific ‘too warm’ feeling that comes over your whole body.
The Porter wheels me back to my room (I’m lucky at least that they’ve got me in my own little room with a closing door, because I’m at such high risk of infection).
The lights are SO BRIGHT. I decide to take some form of control and set myself up a bit. They’ve unhooked me, so I take the opportunity to grab my tote bag and pull it onto my hardly-a-bed so that I could rummage around and get my headphones, my charger and get myself set up a bit since it looks like I won’t be escaping any time soon. And I find my water bottle. Jackpot! I DID pack it! I’m so happy. It turns out I’d just packed it in my luggage. What a relief. I drink half of it.
I share the limited Real Estate of my bed with my bag, my drink bottle, and my knitting needles which for some reason I decided to bring (inspired by my friend Anja who is knitting in quarantine. However the last thing I feel like doing is knitting). I don’t dare get Clarence out here. I manage to drop a few stitches throughout the night, as I writhe about. Future Jen’s problem.
1am: Starting to lose my mind.
I’m just on a stretcher bed. There are no pillows in A&E, so I have to use my jumper as a sort of makeshift pillow. My whole body is in pain, my back is on fire. I ask for some oxycodone because I forgot mine. They say they don’t have any of the tablet form, only liquid.
I tell them it doesn’t usually work that well, but I’ll have it if it’s all they’ve got.
The nurse comes in with something that looks like a syringe. I say is that to swallow? She says: No, we’ll inject you with it.
Oh, no thanks, I don’t want it that badly.
She’s angry with me for saying no. She throws it in the bin and storms off.
I’ve had enough things stabbed into me. I just can’t take any more.
So I decide to just eat some of the fudge I’d remember to throw in before I left home. Priorities. I forgot to pack my Kindle, my toothbrush, and who knows what else though. When I have to leave, I have to do it quickly.
The intercom shouts for someone to go somewhere. It reverberates around the walls and inside my head.
‘We’d really like to try stabbing you again to get some blood,’ my nurse says. Yes, this is the exact terminology he used (it’s not, obvs).
I say I will only consent if I’ve got an expert, who is confident they’ll just get it. Because they already have blood and cultures and it’s just not worth the stress to this already stressed body.
‘It’s just what we do,’ he says.
‘I’m aware of that’, I reply, ‘but I am a unique case.’ I am a human with needs, not numbers on your page.
‘I’m good enough at it,’ he says. ‘I can see one there in your hand so I’ll go for that.’
I refrain from pointing out that usually if you can just ‘see’ it, you won’t be able to get it. You need to be able to feel it.
Instead, I try another way to set my boundaries, and I say ‘well, I’ll only allow a master to try again. They’ve already tried twice and failed. People struggle with my veins.’
‘Oh, they’ve already tried? You were probably just dehydrated before, I’m sure it’ll be easy now you’ve had some water.’
If only it were that easy.
He goes away then comes back empty handed. He couldn’t find the bottles that they use to take blood cultures. They’ve run out. He’ll try to chase some down and try again in an hour.
Saved by supply issues.
5am: Are you feeling better?
He’s at my side again, my nurse. Really, he is very kind, very good, very quick and attentive. I do like him, I’m just feeling a bit at the end of my tether.
He’s startled me, appearing at my side. I’d taken my Amytriptaline, which miraculously helped me to get some sleep, though I was freezing from the fever and was only using a jumper as a pillow. Clearly, I was tired. I’d finally properly despaired somewhere between losing my mind (1am) and stabfest (2am) and wailed something at my nurse about needing sleep and how ridiculous it was that I was still in A&E, so he turned the lights out for me. Oh. Yes. That helps. As did a little wind down to the voice of Kathryn Mannix reading her new audiobook (if you only ever read one book in your life though, her first one should be the one. Please do, it’s called With The End in Mind, and everyone should read it. It’s the most beautiful, wonderful book you’ll ever read).
Then my headphones ran out of battery so I just used them as earplugs and managed to get some more sleep.
Somewhere back at 3am-ish, a different nurse came in to do my obs (taking observations) and I remember being only slightly conscious as she shoved the thermometer under my arm.
But at 5am, when I was woken up by the original nurse, he was asking I was feeling better.
I grumbled that I was freezing and needed to go to the toilet. (grumble grumble)
I didn’t mention to him the fact that I had stolen a few more hours with no stabbing. I hoped he’d forgotten.
I go into the same toilet I went into before, but now I realise that there is blood smeared all over the toilet and floor and walls.
I back out and go to find my nurse.
‘I think… it’s dirty…’ I say.
‘Oh yes, we’re waiting for someone to clean it…’
He directs me to a different toilet.
And I wonder what night they’ve had as I’ve napped
6am: An Epiphany.
‘Do you want me to close the curtain so the light doesn’t get in your eyes and keep you awake?’ my nurse asks.
Oh. Yes. Of course I do.
I ask to be disconnected so I can go to the toilet. They haven’t cleaned the one across from me yet. A strange nurse answers my alarm and doesn’t bother flushing the line when she disconnects me. When I get back and ask to be reconnected, the line is already blocked. I knew I should have pushed for them to flush it. I’m just so tired. I’ve asked so many times already I hoped once without will be OK. It’s not.
‘Oh this one doesn’t work,’ she says when she connects me back up. ‘Do you just use the one?’
‘No, they both work. Or at least they did 15 minutes ago.’
She shrugs and hooks it up to the other lumen of my PICC line and goes to walk off.
‘Can you give it a flush please? It shouldn’t be blocked, it can’t be blocked…’
She goes and gets a flush.
I now only have one working line. Why is it up to me to ensure I get the correct treatment?
9am: That’s Entertainment.
They wheel a poor lady in a wheelchair into the bathroom that still hasn’t been cleaned. A nurse comes and from what I can see, gives it a little wipe down with some paper towels. (the toilet is directly across from my door so I can’t help but see). Evidently the lady doesn’t lock the door, so three people walk in on her. The first two, healthcare professionals, the third, another patient. She then starts yelling abuse at the third.
9:30am: Still no answers.
I am stressed that my PICC line is now blocked in one lumen. I’m sure there’s no way I’m neutropenic, but no one will tell me the results of my blood test. I know they have it because someone came in and hooked me up to potassium. But they won’t tell me. If I’m not neutropenic, surely I can go home. This is not helping, it’s hindering.
I was meant to go in to the cancer centre today for a blood test to see if I was neutropenic. That is… If I hadn’t already ended up in A&E with a temperature (well we know how that turned out). I had to send my Clinical Nurse Specialist an email when I’d done it. So I email her and tell her everything they’ve ordered and that my bloods should be in the system, but they won’t tell me the results, and that I’m struggling. I also mention the worry of the blocked PICC Line lumen.
I meet my new nurse and I babble at him about my PICC line.
‘Let’s sort that then, shall we?’ He says.
He goes off, gets a whole lot of flushes and flushes both lumens, which are now working brilliantly. Good. The first thing is ticked off my mental lists.
11am: The doctor is in the house!
I’ve never met him before but he tells me immediately that yes, I am neutropenic. My neutrophils are 0.01.
I start laughing.
‘Oh, I really need to be here,’ I say.
‘Yes, you really do.’
12pm: Upwards, there’s a bed ready for me on the ward.
The view is lovely, the ward is empty. In previous times, a few years ago, I was put in a private room because I was neutropenic, (but that was at my local hospital, who kept trying to kill me, so I refuse to ever risk getting interned there again). But I’m just put on a bay this time. I assume they just don’t have any spare rooms and have deemed me to not be at risk. All I’ve heard all night is that there are no available beds. I glimpse a flyer on the door that says ‘something something Covid Outbreak something something’ and I laugh. It feels comical. I know they wouldn’t put me somewhere dangerous so it doesn’t bother me. I’m in cancer land now, T14. They know what they’re doing, these people can be trusted to know what to do. Finally.
The view from my bed is phenomenal. London looks so beautiful in the midday sun. I’d been essentially underground at A&E and hadn’t really been able to see out and when I emerged, I said ‘wow,’ as did the guy who was pushing me. We took a moment, both pausing to just look out and marvel at the spectacular day stretching out in front of us.
‘I hadn’t realised,’ I said.
‘Neither had I,’ he said. ‘It’s classic A&E.’
He then went back underground, and I got to stay gazing at London, my life’s great love story.
1-3pm: hospital things.
I’m the only one in the ward. I get drugs, chat to nurses, eat some stuff. Clarence is safe to come out here and he starts making friends. I feel my face is swelling. I think I know where the infection is. In the exact place it always is, since that surgery in 2018.
All my nurses and just brilliant. I’ve never been on a chemo/cancer ward before so Clarence and I are excited for the new experience.
4pm: The check in call.
My lovely CNS (Clinical Nurse Specialist) calls me to check in, as I was told in the morning she would. I was looking forward to it. I’d spoken to her the previous day too, we’re in close enough contact. She’s proving to be a really incredible CNS. She says that since I’m on a cancer specific ward, there’s no need for separate rooms for neutropenic chemotherapy patients. The private rooms are for haemotology patients who may be interned and neutropenic for a month or something. My white blood cells will start recovering. She then explains that the ward I am on has been closed down for two weeks following a Covid outbreak so I am the first guest since it’s Quarantine Period ended, just this morning. I love that! Not that they had to close a ward because of an outbreak, fumigate, clean, then leave it empty for two weeks, of course. The NHS/UCLH doesn’t need a whole ward closed. (and I certainly didn’t need it at 4am after 8 hours already in A&E). But as we watched the beautiful evening sun setting over London together, just the two of us (with occasional nurses joining us), it felt like this ward and I had been through a hard couple of weeks, and now we were would come out the other side of these particular storms together.
No one knows where the infection is yet, though they’re growing cultures (which can take days). I’m certain my face is swelling, and I’m a bit worried about how big it’s going to get before the antibiotics stop it. There’s a lot of hardware in there, as well as an already pretty badly fitting bit of plastic, not to mention… you know… a tumour. It’s starting to hurt too, my face, in similar ways to what it had been feeling like in the weeks before chemo started. It makes sense. More inflammation. I tell the nurses, so they have all the information. They tell the doctors. They say the antibiotics I’m being given are broad spectrum enough to catch anything. Cool. I’ve been vigilant, I’ve told them everything I can, I’ve done my bit. I’ve discharged duty of care for that particular thing to them. So I ask for some oral oxycodone which manages the pain nicely.
6pm: Bye lovely Health Care Assistant (HCA).
She does my final obs before clocking off for the day. My heart rate is hanging out around 120, which is lower, but still not low enough. But that’s ok for now. My blood pressure has been perfect the whole time, my temperature is apparently down, which surprises me because I’ve just started shivering again. But it’s been 6 hours since my last paracetamol and damn Jen, that’s impressive! (Or was it actually only 4? Who can remember).
7pm: I’m a Vampire. Glug Glug.
My haemoglobin is slightly low, so I get a packet of blood and it’s DELICIOUS. I am just so grateful to whoever parted with it so that I could have it.
My nurse asks me what I do, and I tell him I’m a writer. He says he so wishes he could write, but he can’t. He’s no good. I then give him all the wisdom I can think of about writing, because it is my passion.
- No one is ‘a writer’. People just write.
- Every first draft is shitty. As Anne Lamott says in her book ‘Bird by bird’, you need to just hope you don’t die between the first and later drafts lest someone finds it and reads it.
- You don’t write ‘a novel’, you write a sentence. Then you write another sentence. That’s all it is.
- No one needs to write for 6 hours a day. Just write for 5 mins, 10 mins, regularly. You’d be surprised how quickly you’ll find you have something to show for it.
- Try stream of consciousness writing, you might surprise yourself. And even if you don’t, you’re still writing.
He says that’s all well and good, but he can’t do it, he’s not one of those people, he’s not a writer.
And I tell him that no one is at first. And that all those thoughts of not being good enough are all just in our heads, we all have them. That’s just self sabotage, it’s holding yourself back, keeping yourself small. That voice in your head telling you that you can’t, that you shouldn’t even try, it’s just the scared child inside you who was once told they weren’t good at [insert creative exploit]. So you protected yourself from ever feeling that hurt again, for ever putting yourself out there again. But you can decide not to listen that voice, if you want to, you can thank that scared, hurt little child for warning you but say ‘it’s ok, we’re just going to do this and we might even enjoy ourselves.’ No one is born thinking they can’t create, every child does it intuitively – it’s how they learn, understand the world and connect. Then somewhere along the way, society and expectations, and moments of ‘creative shaming’ take it away from us and it’s the saddest thing when people give into it.
I told him that yeah, he might be bad at first, but you can’t improve if you never start. You take a step, you fall over, then you get back up and try again. Like a child trying to walk, or a human trying to create. Creating is hard wired into us all, there aren’t some people who can and some people who can’t, there are just people who do and others that remain forever scared of trying. And never trying would surely be the worst option.
7:30pm: A reprise, an Encore.
I need to have my obs taken again to monitor I’m doing ok with my blood transfusion. My fave HCA comes back and I’m excited to see her, because we’d said bye and then she’d come back one more time. We laugh, we chat, animatedly, and I forget, perhaps for a moment, why I am even here.