Escape from my incarceration

I’ve been quiet I know. Apologies. Time for an update!

Monday I was still in hospital. I had a visit first from two doctors who might have been from ICU… I forget. But one of them lived in Sydney for 3 years, in Manly. Her husband is from Newport, literally just down the hill from where I grew up. I am constantly shocked at how small this world is. So that was fun. They were quite happy with how I was progressing from their perspective so that was good.

Then I had a visit from the amazing Patricia Booth and Dr Pauline Leonard from Oncology. These two were my favourites. I told them about my ordeal on Saturday. The trauma was evidently still very fresh in my mind as I held back tears recounting it. The compassion that came from these two was… Overwhelming. In a good way obviously. Especially after the total lack of it I had experienced on Saturday. They apologised that I’d had to go through it. I mean I don’t really blame anyone for it because everyone thought they were doing the right thing but I must admit it was so nice to finally be spoken to by a human who thought my suffering and pain really did matter. By now my arm was so bruised (made worse by low platelets) and very swollen and sore.

They said it was time to stop treating numbers on the page and to start treating the patient. They said no more sodium chloride since I was drinking plenty, thank goodness. My platelets were still the worry, the last blood test had them at 5. Which I didn’t really believe was true. So they ordered another blood test to check. My neutrophils were still low, 0.2, but Dr Leonard said if my platelets were above 20, they would send me home with oral antibiotics. This came as a very unexpected surprise and I hoped and hoped they were at 20.

A little while later I had the bloods, and not long after I was told that I was getting discharged!!! 60 PLATELETS WOOHOO! You can not imagine the relief. So mum and dad came down to meet me and walked me back up the hill to home! Where I had to stay and avoid any potential sources of infection for fear of ending up back there.

Worth mentioning now too that I had some really lovely nurses. Lianta (I think that’s right) was a lot of fun as my night nurse and she monitored my temperature for me when I was worried. Ian was great – he did my last injection of filgrastim for me hopefully ever so that was iconic. Maeve I already mentioned. I also had another fantastic Irish nurse on my last day and I wish I could remember her name. I really liked her. Sorry, it doesn’t mean I appreciated you any less!

And that’s the end of that story. On to the next…

Things are looking better today.

So I had a visit from the doctor this morning saying they think the infection probably isn’t in my PICC line after all. It’s still a possibility, and I’m still worried about one of the lumens now not working as well. But she apologised for the other doctors barging in all guns blazing yesterday. Yes, none of that needed to happen. I get that they thought they needed to act quickly, but they were basing their facts on information that was wrong – someone told them it wasn’t possible to get blood from my PICC line, which I have no idea where that came from because no one had any problems, and the blood results were incorrect, my haemoglobin did not drop to 30 overnight.

I saw Rainer again today and for some reason they thought things were really dire yesterday. I get that my levels of things were low (more on that in a minute) but aside from that, I have no idea why, but it seems they didn’t manage to get their information straight on all counts before running in and giving me the special treatment. But I get that they thought they had to work fast. And that they didn’t realise what chaos would ensue.

I think I really needed those platelets. I no longer have blood coming out of my nose whenever I blow it, so that’s a relief!

All my levels are slowly going back up, they’re giving me potassium, calcium, magnesium, sodium, um… I think that’s it? They were all dangerously low. And platelets. So they’re going back up now.

ALSO I MANAGED TO EAT ALL MY LUNCH TODAY! First food I’ve managed since Tuesday. Mouth ulcers are on the out guys!

I hardly slept last night because they were poking me with things all night, but I got a few hours. I’m tired, but feeling good. I’ll still be here for a couple more days while we wait for my neutrophils to go back up and all my levels to look better. Fingers crossed it’s Tuesday, I’ve got a gig to go to Tuesday night!

So… I’ve had a very big day.

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.

Oh.

My.

God.

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.

Wow. Ok.

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’.

You’ll just…

You’ll…

So…

We didn’t need to do any of that platelets-through-the-cannula thing after all??????

I can’t.

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!

The excitement of nosebleeds

I wanna talk nosebleeds for a minute. I mean who doesn’t right? Riveting stuff. I’d had 2 in my life before now and in the last week I’ve had an extra 3. I was looking forward to catching up on some sleep on my second night in hospital, so after the nurse faffed about for hours, I finally got to sleep at about half 10. My magnesium was low so I had a drip that was due to finish at around half 1. So it started beeping and I woke up and called the nurse to disconnect me.

He came in and did all that, did my observations and it turns out I had another temperature, so he took more blood cultures (I’m not sure why a third set was necessary but ok…) and went to get me some paracetamol and left the obs machine beeping.

I got up and went to the bathroom and blew my nose while I waited.

Rookie error.

2am. Nosebleed hits. Great. So I grab a stash of paper towels and take a seat and wait for my mate to come back with my paracetamol and turn of the damn obs machine that’s still beeping.

Half an hour on I figure he isn’t coming back so I press my buzzer and eventually he reappears and promises to go and get the paracetamol and some ice for my nose. This time he delivers, so that’s nice. I didn’t know you should put ice on a nosebleed but then again I’ve never really had them. He said to put it on my nose and tilt my head back. I didn’t heed his second part because I didn’t want it to run down my throat instead. Come on, man.

So I sit there, holding paper towel and a pillow case full of ice to my nose and googling how to stop nosebleeds.

So I have like no platelets in my blood at the moment, which means my nose bleeds and my blood won’t clot. One of the many good cells that chemo attacks. Plus, they gave me an injection yesterday to stop my blood clotting so that’s not going to help anything.

The nurse popped back after about an hour, shocked that it was still bleeding. I asked him for some more ice. Off he went.

4am. I was getting tired of getting up and getting more paper towel and sitting there with it up to my nose, two hours had passed. Two hours! How much blood is that? It seems like a lot! I was feeling tired.

I think I finally got the knack of pinching my nose in the right way because…

4:19. It. Has. Stopped.

The relief is insane. I can finally get to sleep.

What the hell.

So not much sleep on the second night either. My nurse today is nice though so that’s good. Tonight I might be able to catch up on a few hours.

Aaaaaaand we’re back in hospital.

Well, a lot has happened in the last week.

I finished my last lot of Cisplatin, my parents turned up from Australia, I turned 30, and now I’ve found myself back in hospital (hopefully for the last time).

I have found a whole lot of new side effects like nosebleeds, being absolutely exhausted that I can hardly walk or stand up (I’d never quite felt it like this before), numb feet (hoping this sorts itself out sooner rather than later…)

I had a lovely birthday, although it was about the worst I’ve felt on any day yet. Charlie and our other lovely housemate Owen took the day off with me, and mum cooked us all a nice roast. Of course I couldn’t really eat any of it, but it was nice. I got some lovely presents and so many lovely bunches of flowers that just kept turning up throughout the day! I felt very special! We ate cake (for some reason I could eat that!) Then we watched The Commitments, a brilliant movie that we’ve been meaning to watch together for ages.

All in all a successful day. Not the 30th I had planned, but a good one considering.

The following days I just got worse, as expected, I could do little other than send everyone away and lie in bed.

Then the inevitable temperature and trip to A&E, at exactly the same time as the last cycle. This time I waited in A&E for 13 hours until I was finally admitted at about 3am into the last room they had, in the 24-hour assessment part of A&E, the CDU (Critical Decision Unit). Love a good acronym. I held out not too badly for most of the day, feeling ok, entertaining myself with my book.

First they managed to throw out my bloods instead of processing them, so that held things up for a while (how is that even possible?). At least I had a good looking, awesome Doctor to distract me (Hi Andy, it was nice to meet you).

It turns out my neutrophils were at 0.0. They’re the ones that fight infection. Also I had low sodium, which can cause seizures and all sorts of things. I had a couple of the ICU (Intensive Care Unit) team come in to see me – usually they would want to admit me and do something drastic but they were all shocked I looked fine and decided I didn’t need to go into the ICU so they gave me my antibiotics and fluids and eventually at around 3am they found me a room and I tried to grab a couple of hours of sleep. I was exhausted.

So there’s the first scintillating chapter of this part of the adventure, more to come.

My good old friend, pain

So they put this cannula in my hand because they thought there miiiight be an infection in my PICC line (of course there isn’t, but you can’t blame them for trying to cover all bases).

Yeah, it hurt going in.

Yeah, it hurts all the time it is in, either just a dull ache, or a sharp sting. It’s worse when I move.

But, when they put the antibiotics through it, it. is. agonising.

It feels like they’re injecting me with acid that slowly moves up my arm and burns me from within. It hurts like hell.

The other weird thing is that it doesn’t always hurt when they do it. Just sometimes. Like… what?

The doctor told me that they have to use the one in my hand and not the PICC line. Actually he told me off for asking for it in my PICC line each time. But hey, can you blame me? But omg it hurts me, and the poor nurses have to deal with me wailing and crying. Not nice for anyone. Especially not nice when they wake me up at 1am (like last night – that was meant to be my 9:30pm antibiotics, but they couldn’t find any antibiotics until 1am – have I mentioned I miss my old ward?) and cause me that much pain. I’ve cried myself to sleep twice now. The pain does die down eventually at least.

No one knows why it hurts. The best they can offer me is to say ‘it shouldn’t be hurting… there’s no reason for it to hurt… would you like some paracetamol…?
Paracetamol, mate?
You try being in this much pain.

I keep coming across these things that hurt me that ‘shouldn’t’, that no one knows why they do, and that no one has a solution to fix, it’s just something I have to put up with. And if I’m lucky I can have some paracetamol.

Yeah… I’ve got no answers to this one.

Still waiting to hear if I can go home today…

By the way, they have no idea where the supposed infection I had is. Just an unexplained temperature for a couple of days… Who knows! It’s gone now.

Anyway, don’t mind me! Hopefully it’s nearly over! And I can only hope that it doesn’t happen again. Only one more cycle contains this horrible chemo drug that knocks me so much though, so if I can just get through that, we should be on the home stretch!

Hopefully my last night in hospital…

Wow so.

I had my fantastic stay when I was first admitted to the hospital in the Mary Seacole Ward, but that is only for the first 24-72 hours after admission from A&E. As soon as I was assessed and my neutrophils were a safer level, it was time to transfer me to another ward.

That was a shock.

I was still hooked up to fluids, so they disconnected me for a bit and wheeled me on up.

Lucky for me I got my own room, though no longer my own ensuite. My nurse from downstairs brought my fluids in, said goodbye and good luck and that she was handing me over to my new nurse. My new nurse said she just had to quickly take someone into surgery and then she would be back in a minute.

Now these fluids run for 8 hours. I didn’t want them being dragged out any longer than necessary. And they’re a pain. I have to ask to be disconnected every time I need to go to the bathroom. Charlie was coming to entertain me with board games at 2pm and I didn’t want the damn fluids to cut into that time too much.

An hour later and she still wasn’t back. Great. More time without the fluids running. I didn’t even know where the bathroom was. Unfortunately it wasn’t too much longer before she came back and she finally hooked me back up. Right. Great.

Earlier I had put my order in for curried goat for lunch, fruit yoghurt and soup, and spicy lamb stew for dinner. I figured it might be a challenge with my mouth, as all I had managed to eat prior to now was soggy cornflakes, cottage pie and soup, but I was looking forward to it!But they moved me before lunch. I wondered if my lunch would be able to find me up here.

Well. When I got up to the new ward, the lunch lady came in and said ‘well all we have left is… baked potato and baked beans…’
Ok… I guess I’m having that then.
For dinner they brought me a cold tomato omelette, with mash potato and gravy, and a pile of sweetcorn.
And extra gravy on the side…
I… have no idea.
Omelette and gravy?
Uhhh…..
They haven’t come to collect it yet three hours later, and my room smells… interesting…

Anyway, I had a visit from the doctor tonight who confirmed that we’re just waiting for 48 hours no temperature, and neutrophils of 0.5 Well, they told me this morning that my neutrophils are 0.5, and sometime early tomorrow morning will be 48 hours with no temperature. So………..

THAT MEANS I CAN LEAVE TOMORROW MORNING RIGHT?

I bloody well hope so.

All in good time to go to work on Monday! I might just check that I’m at a safe neutrophil level (that’s my immunity) to go on the tube/to the office on Monday. Otherwise I might be needing to work from home.

But either way, HOME!!!! Hopefully…

Anyway tonight is Guy Fawkes and I love Guy Fawkes… At least I can hear Fireworks from my window… And it was pretty entertaining spending the afternoon/evening playing Chinese Checkers, Uno and Canasta and listening to music. Thanks Charlie for spending your Guy Fawkes with me.

Happy Guy Fawkes everyone.