Well, sunscreen. It makes me come out in rashes, or if it’s Banana boat, more like hives. Too much hugging of shirtless friends wearing sunscreen can do it too.
And there was a time in my past when I was a much smaller Jen when they decided I might be allergic to penicillin. I guess it made me vomit? But I’ve had it so many times in my life that I think we can probably safely say it was just a phase, whatever it was, not actually an allergy. My love of horses wasn’t just a phase, neither was my aversion to pink.
Do you have any allergies? It’s a question you get asked in hospital almost as often as you get asked to say your ‘full name and date of birth’. (a lot)
When I was admitted to hospital a week or so ago, there were those first few days where my infection markers weren’t coming down and no one knew what was going on (as is always the case when I go in with a temperature when I’m neutropenic) so they kept switching antibiotics every two days until that marker started going down. I said goodbye to whichever one seemed to be healing the damn wound on my face and hello to the one that would get me out of hospital. Priorities, I guess.
On the Sunday morning, if we remember, one of my favourite doctors came in, leant on the end of my bed and said to me ‘Jen, I don’t know what’s happening. I don’t understand why this one infection marker just keeps going up. It’s still going up.’ Doctors, I’ve found, don’t like having a problem they can’t solve. I often appear to be that unsolvable problem. We hadn’t had the result of that day’s blood test yet. A few hours later I was delivered it – my infection marker had finally turned around and started coming down. We were moving in the right direction, baby!
But he’d decided to try something else anyway. An anti-fungal.
‘I’ve got a new idea, let’s try this,’ he’d said.
‘Woohoo! New things!’ I’d said.
I was in a good mood, it was Formula 1 Day and the sun kept peering out from the clouds at opportune moments. It was also they day they moved me to a private room because he had ordered a flu swab, among many other swabs. I had been sad to leave the beautiful view from my original bed, but who grumbles about a private room, they’re like gold dust. So off we went.
My nurse had been giving me updates on this anti-fungal thing. I liked her a lot, we got on well. This whole new drug seemed like a massive hassle, though. She had to mix it over an hour and it had to be put into these little vials and apparently it’s quite common to cause a reaction, so they just give a tiny amount at first and see if you have any shortness of breath, rashes, etc. then proceed to a higher dose if all is good.
Finally, around maybe 4 or 5ish (I don’t really remember what time, but it was dark), it was ready. As night time descended on London, and the lights of the North part twinkled, my nurse came in and hooked me up. She said she would pop over every now and then to keep an eye on me and make sure I was ok. Then she disappeared. Cool. A few moments later someone came in and asked if I wanted tea or coffee.
‘Oh! Yes, tea please, with milk, no sugar.’
She went off, leaving the door open. Suddenly I started to feel a bit odd. My upper back felt warm. I tried to breathe and realise it was difficult. Something was happening. I pressed my call button, but knew that it could take 10 minutes for someone to come. So through the open door, I called ‘help!’
No one appeared so I did it again. And again. And again.
I could feel my throat starting to close over and I knew that I could survive longer if I just lay back and stayed calm, but there was still no one there. I figured I had one more ‘help’ in me before I couldn’t shout anymore. So I weighed up the options and thought I’d do one more.
I was spent. My throat was properly closing now, I hoped I’d done enough. Finally, a group of people burst in – nurses, my (maybe not favourite anymore) doctor.
‘I can’t breathe, I can’t breathe,’ I managed to gasp out. I think they’d worked that out.
One sat by me and said ‘ok, stay calm.’ And I nodded. I’d discharged duty of care so I no longer had to manage my own anaphylactic shock. So I relaxed my shoulders, I closed my eyes and I waited. An oxygen mask was put over my face. My throat felt huge, it had completely blocked over. My face, my shoulders, my arms felt huge too. I looked down at my wrist, and it was significantly bigger than I remembered it. My watch was suddenly tight around it so I reached down and unclipped it to let my arm balloon unaided. The original nurse put some stuff in my PICC Line that was meant to counteract it I guess, plus some steroids. After a short time, I coughed.
‘She’s back!’ Someone said.
Sure enough, after that cough, I managed to start taking some gasping breaths. It took a while to properly get air in my lungs. I’d experienced this sort of thing before – being winded having been thrown off horses (not a phase). You gasp and gasp and no air comes in and you think ‘gosh, I’m truly going to die here. I may never be able to breathe again’. But after a while of gasping, it finally starts to work, the air goes in.
As I gasped back to life, I said first: ‘that was really scary having to call out for help.’
First, the educator.
Then, ‘Well… I’ve gathered you all here today…’
Second, the comedian.
The jokes followed as I got more breath. ‘Well, that was fun, wasn’t it!’ and ‘thanks for joining me here’ and ‘not my favourite way to spend a Sunday night, how about you?’ ‘Might not do that again any time soon.’
I’m not saying they were good jokes, but I had an audience, I went straight into performing mode.
The nurse aspirated what she could of it from my line, there wouldn’t have been much to pull back out I imagine. All the excitement eventually dissipated and everyone left. I was left sitting on my bed with my oxygen mask on (I’d asked if I could take it off but my blood Oxygen content was rapidly dropping every time I tried so I had to keep it for a while). My nurse said she’d be back in a little while to check.
So everyone was gone and I was sitting there, wondering what had just happened. And then I started crying. That had been scary. The event itself was OK, I was glad to have experienced that in a safe environment, I didn’t think I was going to die, it was good to know early on that no, I should not be given that stuff. But calling for help with my last breaths, trying to work out whether to prioritise longevity or getting someone’s attention, that was scary. It shouldn’t have happened like that. They knew it was likely to cause a reaction. Why didn’t someone stay with me for at least the first few minutes…
My nurse came back in to find me sitting there sobbing into my oxygen mask. She came over and sort of tried to comfort me.
‘That was not a good experience,’ I said. ‘You left. Someone should have been here. It was just lucky the door was open because someone had popped in for something (this was the tea lady, this detail came back later), otherwise no one would have heard me. You dropped the ball. It shouldn’t have been like that. I shouldn’t have had to yell to be saved.’
She told me she’d just gone off for a minute and I said a minute was too long.
We’d got along really well, but in that moment the energy changed. I needed to say it, and I think she felt it. We didn’t joke anymore, we just spoke in flat tones, all business.
We bounced back, to the friendly relationship we’d had the rest of the day. And later, we talked. Openly, forensically. She told me how she’d never come across this specific drug before, how she’d spent hours on the phone with Haematology (it’s often used in Haem) trying to work out all the specific things she needed to do with it. She didn’t expect me to have such a huge reaction on the tiny dose I was being given because of the nature of the dosing (I hadn’t even realised a full anaphylactic reaction was a possibility). She thought it would be fine. And it was fine. She specifically gave it to me when everyone was around and no one was on their break, hence why I got such an audience. I didn’t think I was going to die at any point, or that they weren’t going to find me. But the point I wanted to get across was that it was scary, and it shouldn’t have been like that. I shouldn’t have been alone.
Also, as we’d been winding down from the crisis and people were leaving, the doctor had said ‘don’t worry, it doesn’t matter that you can’t have it, since your infection markers have come down, we don’t need it.’ Once again, I will say that I am glad I found it out then, not later in my chemo when my body is weaker. But also, I felt angry that both she and I had been put through that scary drug when it wasn’t even necessary.
As I sat in my bed piecing it all together, I realised there was a cup of fairly cool tea sitting on my table and I remembered that it was the quest for tea that had led to my door being left open and I thought in a different reality, perhaps ‘Tea please, with milk, no sugar’ would have been my last line spoken which feels very fitting (and British) of me.
So now as I start my second cycle of chemo (the first drug is done for today, just about to start the second), I wear a red wristband rather than my previous white one because now, when they ask ‘do you have any allergies’, I have to say yes. Remembering the name of the damn thing if they ask is another story. Ambisome. Ambisome. As opposed to Ambicare, where I get my chemo. I’m not allergic to that, and they might get offended if I tell them I am. Ambisome. Never again.
8 Comments Add yours
Wow. What a scary experience…. Good luck with your chemo🌹❤
Wow. What a scary experience…….! I wish you all the best and good luck with the chemo 🙂
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Scary stuff. Weird that there is t a sliding scale for allergies. My daughter has a red band as she gets hives after a platelets transfusions. And because one of the anti biotics messes with her already very fragile kidneys. I don’t think the latter is really an allergy it’s a drug she can’t have for medical reasons. But what you had was a lot different to hives
I think different allergies affect people in different ways – from stomach upsets to rashes to fill anaphylaxis. And then of course there are the side effects mixing with pre existing conditions, as you mentioned. Just reminds me how individual we all are and how we really need holistic approaches.
Oh Jen, That was scary. I am glad you had people arrive.
Me too, much longer and I may have panicked a bit!
I cannot believe this happened! You are your own hero Jen Taylor.
On a side note, your descriptions of this are harrowing, detailed and so well written. I can’t say I enjoyed reading about this awful experience but you had me hooked 😉
Thank you!! That means so much – exactly the reaction I’m hoping for. Love you xx