Maybe my biggest.
I hardly even know how to start.
So they’ve been taking blood cultures to see if any bacteria grow, and it turns out in one of the cultures they grew something. They think there’s an infection in my PICC Line, which they told me yesterday they can just give me the antibiotics, and it’ll clear it all up no worries. They said they would take some more blood cultures later today but I guess they forgot to.
Today, two doctors came in, brazenly telling me that there was an infection in my PICC line and they’ll just take it out and for now they’re going to put a cannula in me which I have to have the rest of my antibiotics through.
Wait, what? You’re doing… what? Ugh.
Obviously I said no, you’re not taking my PICC line out, especially not without talking to my doctors first.
So what ensued was an hour of them attempting to get a cannula in my arm. They tried in three spots before they finally succeeded in the fourth, right up near my right armpit.
I finally got to see an ultrasound machine which they use for finding veins, which was cool, but it did little than to tell them that my veins are almost non existent.
Doctor Rainer was good, he tried to distract me from the pain, which didn’t work but I appreciated the effort. I could have sworn he was South African but it turns out he’s Dutch! He didn’t sound like any of my Dutch clients! He was nice though, I liked him.
Anyway, after much screaming and shouting and tears from me, I had a cannula in my arm. It hurt. And after a while I couldn’t even straighten my arm anymore. Anyway, they started putting antibiotics through it.
I have never been in so much pain, it felt like someone was splitting my arm apart from the inside with a burning hot poker. And the pain intensified as time went on. I got through about two or three minutes before my pain and screams of agony were too much that the nurse stopped it. After about 10 minutes the pain started to subside. They switched the antibiotics back to my PICC line and left me for a few hours.
A lovely microbiology doctor came in, Valentina I believe, and said they’ve tested the bacteria they found and for some reason I don’t quite understand, they decided it’s perfectly fine to keep giving the antibiotics through the PICC line, no worries. THANK GOODNESS! So we’re all good again. She also said they’re not entirely sure it actually is in the PICC line. So all of that stuff with the doctor rushing in saying they were taking the PICC line out… completely unnecessary.
INSERT SIDE STORY. They took some samples of my blood, and my haemoglobin came back as dropping from 79 to 30 overnight, which is super crazy. So they were talking about prescribing transfusions and all sorts. But it turns out they just got it wrong somehow, and when they did the bloods again my haemoglobin was fine. Um… ok… what they did find though was that my platelets were low. I believe them on this one, I already knew this, as my chemo drug knocks them out. That can be to thank for my never ending nosebleeds at the moment!
So they prescribe me platelets. In this time, Ma, Da and Charlie all turn up, and we have a few hands of Uno. That’s fun, and an awesome distraction.
Then my amazing nurse Maeve (shoutout girl, I love you, best nurse ever) came in with another nurse and a bag of platelets. They connected them up to my PICC line and they started dripping through but very slowly. Things drip slowly through my PICC line, that’s fine. But the other nurse (we will call her PN, short for pushy nurse because she was not very nice) was not happy. Apparently the whole bag MUST go in within half an hour. I said they could try in my cannula but I can’t imagine it will be any better than the last time. I was hopeful it was just the antibiotics that was hurting so much and the platelets would be fine.
So PN pushed a flush through with no delicacy, which hurt a lot, and then hooked it up the platelets and walked out. Good riddance. Maeve set them to drip through really slowly and said she would keep an eye on me to see how it went. It started ok, no pain, but within maybe 30 seconds the pain was building up. I think I withstood it for a couple of minutes before it was unbearable and I was once again screaming in agony. She stopped it, and after about 10 minutes, I stopped crying in pain. It turns out getting it in within half an hour wasn’t as important now. In fact it wasn’t necessary at all.
It still hurt, but it was less, so she started again, this time she let it drip through quite quickly. I understood her idea, it’s going to hurt anyway, let’s just try and get as much in as possible while we still can. Once again the agony returned and I was screaming and clenching my fists. My poor audience had to sit through all of my fits of agony. It can’t have been nice to watch. Eventually she decided it was too much and stopped it again. Once again, it hurt more afterwards for about 5 minutes, and then started to get a bit better. They gave me codeine and paracetamol, but it hadn’t started kicking in yet.
Another awesome nurse who I had seen a couple of times today came in and said to stop, and that they would talk to the doctor and get the cannula taken out because this can’t be the solution. Of course this was a relief to hear, but my first thought was oh gosh where are they going to try and put a cannula now? The doctor who put it in said I’d better hope this one is fine, otherwise they’re just going to have to find another one somewhere. Where?!! You’ve already exhausted all my veins! And also it’s not going to hurt any less…
Rainer popped back in and the nurse explained to him that microbiology said it’s fine to use my PICC line, so he said remove the cannula. I asked how on earth I was going to get the platelets then?
He said ‘oh we’ll just get a pump to push it in’.
We didn’t need to do any of that platelets-through-the-cannula thing after all??????
So… that was essentially a day of me unnecessarily being caused the worst pain I’ve ever felt. I mean I understand the reason behind them putting the cannula in, and of course they never thought it would be that much of an ordeal. And I understand the nurses trying to use it because they didn’t know there was an other option. But everything is pumped into us in UCLH, I don’t know why it seems such a foreign concept here at the Whittington…
On a side note, one of the lumens in my PICC line has suddenly got resistance in it, which means only one is now working… So we are hoping firstly that it keeps working fine, and secondly that that’s not going to be an issue for the rest of my chemo… Because otherwise, I’m worried I might need a new PICC line…
It’s been a big day. I’m currently waiting for the second bag of platelets to finish going – I need to keep pumping up the pressure every now and then. And then I can finally catch some sleep.
My right arm is swollen and very sore, as well as incredibly bruised in all the places they attempted. I also can’t straighten it – I think they’ve done something to my muscle. At least the cannula is out now.
I think I’ll sleep well tonight. At least I’d better!
8 Comments Add yours
A huge day, Jen. It was tough being there and see you going through so much pain but I wouldn’t have been anywhere else.
I felt so pathetic trying to console you by rubbing your back but I had to do something.
Hoping today is better for you. It certainly couldn’t be much worse.
Onwards and upwards.
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I think surely it can’t be worse than yesterday! But then again, I don’t want to jinx it because I’m sure they are able to find new ways to torture me. But hopefully better from now.
Thanks for the support xxx
The back rub was nice 🙂
A big day, and a horrendous day too. I suppose the only consolation you have with the pain is that it does stop. My thoughts and love go to you. Today will be a good day.
The consolation now is that the cannula is out and the swelling and pain should go away soon and hopefully I won’t have to deal with that ever again!
That sounds horrendous. I’m sorry you had to go through that.
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Just glad it’s all over. What doesn’t kill you and all…