That night, the one after the day with Glenda and Gabby, was a long one. You know the types. My oxygen alarm was going off over and over again. I called the nurse to ask if there was a problem and she said it was just a faulty alarm then disappeared.
The alarm kept going.
My anxiety rose.
If the alarm is faulty… well… why do they have it? Is my oxygen really fine? Why has it been fine up until now? How does she know that it’s fine if it’s constantly saying it’s so low? Why does my mouth feel so weird? It feels all slimy and like it’s disintegrating. It wasn’t like that earlier…
I’ve been here before, of course. Back in the original story, the flap started dying overnight. And they had to rush me into hospital to save it. I know I don’t have a flap this time but what if something is going wrong? My oxygen alarm goes off again.
I call the nurse again, who seems confused and annoyed. I ask to see the night doctor. The doctor has no idea.
It’s 6am. My mouth is so slimy. My alarm goes off again.
I’m making a bit of a scene now. They take some blood and say ‘oh, your blood oxygen levels actually are low… we should give you some oxygen…’ They ask if I want a mask or a tube. I don’t know how to decide. I don’t know what the right answer is. The tube sounds less claustrophobic. They put the tube under my nose. It’s one of those ones that goes up your nose but it doesn’t really fit in mine because my nostrils are blocked off. Well, one is. But I try to keep one of them in. I breathe deeply. The oxygen alarm doesn’t go off again.
Someone who I am told is part of the head and neck team comes and has a look in my mouth. He pulls at my lips and they split. A lot. He tells me they’re so dry and says I need to be prescribed some vaseline. He says he thinks it’s fine in my mouth. Ok. Right. It’s probably fine then. I guess.
I make it to the morning, of course. But there was a glimpse of my life hanging in the balance once again. I speak to my consultants when they arrive. The crisis seems to have passed.
The day doesn’t really stop being rough though. They take my temperature in the morning and it is going up. They forget to take it again. After a little while I realise my left arm is swollen. Really swollen. I can’t close my hand. That was the arm that had been in so much pain immediately after surgery. No one does anything but i keep trying to move it, trying to shake it back to normal.
‘I can dance’, I say as I shake it, I’m not sure who I’m saying it to. My team come around again later. I show them my arm and they ask why no one has taken my temperature for so long. So the nurses decide to check it. It’s high, well over 38 degrees. The nurse draws a line around my arm with red marker, I’m unsure why.
The temperature makes everyone panic. ‘It’s the cannulas’ they say. They want to take them all out. I don’t want them all out… My Registrar and I agree on taking the ones out of my swollen arm, and my other hand, but leaving the femoral line in my groin. I don’t want to lose all of my lines because we know how difficult my veins are with cannulas and anything going into them. So I let them take out those while leaving me with one. I’m told that the femoral line can be an infection risk and they don’t like leaving them in for too long but 7 days should be fine. It’s only been 2. So I agree to that, and we discuss starting to move all of my medications to oral forms. I feel comfortable with this. I feel in control.
Then other random specialists keep coming in and out and saying all sorts of things. I don’t know who they are, they’re not my people. One comes around and as she has guns blazing, I guess she’s someone related to microbiology or something, I’m unsure. She says all my lines must come out and I’ll probably get a PICC line for my last couple of days in hospital. I tell her I love PICC lines, I had one for 7 months, but that is a very drastic measure and no, I will not be needing a PICC line.
I’m not sure we come to any agreement.
After many backwards and forwards with people I’ve never seen before, my assigned nurse for the day comes in and says she’s taking all (yes all) my lines out and I don’t get a say in it. I tell her that’s not happening, my team and I had decided I would keep one. She said no, that would not be the case. She would be taking them all out right now and I would be getting a PICC Line.
I am glad that years of this has given me confidence to know that my body is mine, not theirs to do with whatever they wish, but sometimes it’s hard to remember that. Especially when… well… it kind of is theirs… most of the time. But you have to know when you get it back. And who to trust and who not to. This gave me flashbacks to the time when they kept trying to take my PICC line out when I was at Whittington hospital during chemo, with neutropenic sepsis. I didn’t let them have it then, I won’t let them have this either.
At around the same time, someone comes in saying they need to take my blood. I’ve had so many people cycle through, I don’t know who this is. She comes in and says she needs to take it with a needle. I say ok, I can deal with that but I’m not losing my last line and I’m not getting a PICC line.
She says ‘we’ll talk about it.’
I repeat myself, she’s not taking it, I’m getting more stressed by every second. I’ve started talking again, it seems more important right now than staying silent. The nurse starts working at pulling the cannulas out of my hand and I feel my time is running out. I’m crying now. No, no, you can’t take it out.
This specialist gets angry at me: ‘I’ve tried to tell you that it won’t happen right now, but you’re not listening to me.’
I don’t know who has said what at this point but she was clearly quite annoyed and I was taken aback. I was clearly in stress, why was she acting like I was the problem.
‘I was literally just told that this is definitely happening. And that I’m having all my lines taken out right now.’ I say, the panic rising in my voice.
‘Who told you that?’ She asks.
I felt awkward. With my head I indicated the nurse, who was sitting next to me, working on my swollen hand to remove the cannulas.
I said ‘Well…’ as I moved my head in her direction. I fear confrontation. This is the closest I could get.
The nurse eventually said ‘I did say that they all had to come out right now…’
The specialist got my blood first time without drama. She said it wasn’t too hard – you can’t see my veins but you can feel them, she told me. That reminded me of my blood taking soulmate who did it in almost darkness. I forgot his name and I forgot hers. But I told her I might marry her to keep her in my arsenal.
I kept my femoral line in the end. I was told there was a bed ready for me on the ward. My nurse said she wanted to get me cleaned up before I went there but she just disappeared. I felt a bit cautious of having her too near me by this point anyway. She clearly didn’t seem like she was there to actually help me.
She did end up trying to clean my face a bit before we went, but I wasn’t too impressed. And then eventually I went up to the ward.
My femoral line kept working absolutely fine until the day I left hospital, by the way. I kept it for 8 days in the end. And the temperature went down within 24 hours. All they needed to do was wait before creating such a crisis. I was more than a thousand times grateful to myself that I kept it. You see… even if they move you to oral meds, they still keep needing to take blood. And they like to inject you with something every day that does something ‘for your stomach’ or… I don’t know. Acid? Don’t remember. But you won’t last long in there without some sort of access to your blood. Plus my morphine pump kept pumping through it. Not that I felt it touched the pain much… But that’s another story, I think.
Also after my lips had split when that doctor was looking in my mouth, they got infected. I was prescribed some special cream for it. ‘It’s probably just the herpes virus, we all have it inside us,’ they said, ‘we all get coldsores.
I’ve never had a coldsore in my life…To be fair it doesn’t really look like coldsores anyway. Want a picture? I’ll put it at then end because why the hell not. No shame. Though I’m aware that will then be the poster image for this post which is super cute but probs unnecessary. So I’ll also put a pic of Clarence and Toa and my head drain first.
Anything could have caused that temperature… either my lips, or the cannulas in my swollen arm, I guess. There was no need for such extremes. And look, I love a PICC line as much as the next person who has had one that has worked so well, but they need to stop suggesting it for minor things!!! What is super easy for someone to flippantly request, is much less easy for someone to go through. I’m glad I stuck up for myself, but my goodness, it is difficult. We trust these people with so much, it’s impossible to know when to submit and when to fight. In an ideal world you don’t need to be your own advocate. But unfortunately, that is not always the case…
But let me leave you with a beautiful case of my team advocating for me. And oh my goodness I have a thousand and I trust them to the end of the world but they can’t always be there, unfortunately (what do you mean I’m not the only person they treat?) – this is just one example from that time. On either the first or second day after surgery, my Registrar was in checking on me. The nurses came in with a covid test asking to poke it in my nose and mouth. I mean… I am all for a covid test, I had one on the Friday before I went into hospital and then the Sunday I was admitted. But I’m sorry, just after I’ve had surgery on my mouth and nose… I just need a break. I started to panic and my Registrar was so calm.
‘Ok so…’ he said, his voice so quiet, so calm, as I sobbed beside him, ‘she’s had two covid tests within the last few days, can you explain why she needs another one now? I’m just trying to understand why this really needs to happen now.’
‘I guess it doesn’t, we can probably give her a break’ they replied.
YES GIVE THE JEN A FCKN BREAK!!!!!
I had one a few days later, which was also a bit mad, but I did it after the trauma was a bit smaller. And I could do one side of my throat and kinda poke around the corners of my nostrils. Gently. It was negative, obviously.