Back again

Well I’m back in hospital, as expected my temperature spiked on day 9, same time as it did last cycle. As per usual, I felt fine otherwise, just the high temperature. Then of course my face and mouth started swelling up.

It all went very similar to last time. I arrived at A&E at around 6:30pm. Again, they put me in the resus area because it was the only place with a free room. I then made friends with the Porter who zipped me around for the chest xray they always want to do which shows nothing. He actually had to scan me twice because he misjudged my lungs, which are apparently longer than he had expected. Long lungs, cool. Never had that happen before.

Around 11 they said they’d found me a bed in the ward, however it wasn’t until 1am that I finally got into it. I was verrrry excited to see I had ended up with a window bed again. But there wasn’t much to see yet.

The nurse said he was going to go on his break but then he would come back and do lots of things I couldn’t really keep up with. The bed had one sheet on it but the rest hadn’t been made so I set about making my bed while I waited for the nurse to come back from his break.

Then a whole lot of weird and high energy things happened at around 2am like changing the Picc dressing (I’m not convinced he really knew what he was doing and he almost pulled the metal teeth holding it in place in my arm out). He then set my antibiotics up to drip into me instead of using a pump, and PICC lines don’t really work very well like that, so it meant everything took a lot longer than it needed to. I mentioned it at the time but he was adamant. My nurse the next morning got a pump connected and was confused why it hadn’t been done already. Though I really need two, and they could only find one spare. NHS supplies, eh?

They seem to want to treat me as if all this exists in a vacuum. And it’s hard to know how much to interfere with what the doctors and nurses want to do, it’s just that I know what’s going on and they seem not to.

They panic that I’m tachycardic and can’t possibly work out why. They order ECGs and check my pulse and check again. I explain again and again that it’s a combination of the Picc Line, the chemo and the fever, that it’s been like that for months, that I can have another ECG if they really need me to but it’s not going to show them anything different.

They think maybe they’ll just throw in an ultrasound of the face in case the swelling is an abscess that needs draining. I tell them it isn’t and it won’t show anything. I’ve been through all this before, let’s use some common sense as opposed to panicking again about things that are incredibly unlikely. My face can’t really deal with the pressure and gel of the ultrasound at the moment, last time it negatively impacted my wound. I’m told that’s fine, as the results won’t really have any affect on treatment anyway, they just thought they may as well, but it makes sense not to unless something changes.
‘This is why it’s good to talk to the patient,’ the doctor tells ‘it makes much more sense for you to not have one now.’

The nurses panic that I’ve got a temperature and call another doctor in. Apparently they can’t work out why I would possibly have a temperature.
‘They’ve called me in because you’ve just spiked a temperature,’ the doctor says, coming into my bay at 7am.
‘Well yes of course I’ve spiked a temperature. I have an infection. This will keep happening for a while yet.’
‘Yes, I didn’t think it was out of the blue, I noticed you’ve had a temperature since you came in. Why did you come into hospital? Is it because your face was swollen?’
‘No, because I had a temperature… I’m neutropenic.’
I wasn’t aware this was new information for anyone, but it appears to be.
‘Oh then it definitely makes sense that you have a temperature, you haven’t even been on antibiotics for 48 hours.’
‘Well yes I know.’
I told him it seems like exactly the same as last time, and it was the third antibiotic they tried that fixed it so maybe we could go straight to the antibiotic we know worked last time.
He said this is all new information to him, that I really knew what was going on, didn’t I?
Well yes obviously. I’m baffled that this is all new information, I would have thought it would be on my file.
‘The antibiotic you’re on is quite broad spectrum so it should pick anything up,’ he goes on to tell me.
‘Yes, I know,’ I reply, ‘but it didn’t work last time and the swelling is still going up, can’t we just switch to the one that will probably work? These other two ‘broad spectrum’ ones did nothing last time.’
But no, protocol is that we try two other ones first before going onto that one.
He said he’d look into it though.
He asked if I could remember what the name of it was.
I said no, but surely it’s in my notes.

We’ll see. Next time I get to speak to some doctors (who knows when that might be), I’ll probably push a bit harder. I’m sure I’ve got the answer in my hands, but there’s only a certain amount of interference they’ll allow before you start making a nuisance of yourself.

The other news is that as of Thursday morning, I now have a nice big hole in my face. Or ‘deep chasm’ or ‘cavernous depth’. You can see through to the hardware on the other side within my cheek. The scab completely broke down and it’s now a nice big ol hole. So I’m currently working with my surgeons to look at the best way to start dressing it. Deepti is on annual leave but still calling the shots and sending people in to sort me out while I’m here so in some ways there’s some good timing there somewhere. Hopefully we get a system for dressing it sorted out. But I believe we have finally reached eye patch time, as I will have to cover up this big hole. So like I’ve been having fun with wigs, I’m going to have some fun with eye patches. I’m even looking into making some myself.

7 Comments Add yours

  1. Jane Doherty says:

    It’s crazy they don’t listen when you obviously know what you are talking about.
    Maybe you need a clip board with what to do if….. signed by the surgeon.


  2. maria strobel says:

    God bless you Jen! You are so inspiring 🙂


  3. Kirralie says:

    You are a very patient patient ❤


  4. violetlavender8 says:

    I’m changing the subject somewhat before I cry about you being back in hospital.
    In my country I would say about 90% of nurses are female. You seem to have male nurses on duty quite often. Is that the usual norm in your lovely country?
    I have six wonderful doctors who are making sure these old bones keep rolling on. All of them listen to my input and believe it or not will actually act on my suggestions.
    I wish for you a miracle. That the chemo will quit giving you such horrible side effects and turn your world into rainbows 🌈 with a side of unicorns.🦄


  5. Ash Ross says:

    Long lungs? I always knew there was something special about you Jen, couldn’t put my finger on it until now. It all makes sense 🫁


  6. Ash Ross says:

    Long lungs? I always knew there was something special about you Jen, couldn’t put my finger on it until now. It all makes sense 🫁


    1. Jen Eve says:

      Hahahaha it’s that special something that makes me me. Long lungs 😂


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