A few of the amazing nurses on my first trip to ICU

The first thing was to work out a way to communicate with people. How else would I make friends?

The first notebook Dad got for me said on the front ‘Be your own kind of beautiful’. Seemed fitting, since I would definitely be challenging the normal ideas of ‘beautiful’ for some time (someone did just tell me I was totally rocking the look hehe – the ol swollen face look).

The scribbles start to make sense after a few pages, as the initial anaesthesia wore off. I was never far from my felt-tip pens or notebook. In fact everything was covered in pen – my arms, my sheets, my gown, at one point I even managed to draw on my Physio.

After the first couple of days of confusion, things got a bit clearer. I was helped through by some amazing people as I was recovering in the ICU.

Anna was the Portuguese nurse from Porto. I promised her that once I was better I would prioritise visiting her home town. She said to drink their special ‘Porto wine’, I of course agreed. I realised later we were talking about Port. Yes please, I will drink it all.

Then Maria took over. She was lovely. She had a brilliant knack of explaining things to me really well as she was doing them, putting me at ease and making sure I was informed about everything that was going on. This appeals to me so much. Looking through my conversation book from Maria’s shift, it appears I finally managed to work out the reason as to why my neck was sore – something that had been plaguing me – of course, they made quite a big cut in my neck to connect the blood supply, I’d known his all along but for some reason this was when my re-realisaion epiphany happened. I also wrote ‘Elephant’ and underlined it, so I’m sure that was important. The lovely Maria also came and popped in at another time, a few shifts later, she crouched by my bed and held my hand. She was great.

Then there was the amazing Rebecca, with a pixie haircut that gave me massive hair inspo, beautiful straight teeth, a great smile and very pretty eyes. It was Thursday, day 3 post surgery. My memory of my day with her is surrounded by sunshine. We put the radio on in the morning and had it going all day, managed to find a station that was just playing an awesome mix of retro songs. We boogied through the day and she would pop over to come have a chat/write with me. She also knew Sydney, which was fun. When she went on her break, she had a tea on my behalf because we drink it the same way. I got up and danced to the radio as my bed was made. Kat the Physio came by and decided it was time to go walking! So I got all my lines and drains bundled up and with Kat on one side and Rebecca on the other, Clarence under one arm and my parents as cheer squad/photographers, my support crew and I went thundering down the corridor. I, of course, was certain I was fine and was trying to do everything myself and quickly. It became a common theme of my friendship with Kat that she would spend a lot of time telling me to slow down, calm down. I appreciated that. I need these sorts of reminders when I’m not well. Later in the afternoon after everyone had left, Rebecca and I went for another walk. We danced down the corridor, and she took me on a short tour of the floor outside of our ward. We recommended each other our favourite Ramen places (Kanada-ya: mine, Koya: hers). I told her my legs were randomly itchy and she said it’s a side effect of the morphine and that I had a drug on my file that would counteract that! Brilliant! I was sad when her shift ended, I’d had such a fun day.

I was lucky however, as it wasn’t long until I met Ronnie, who took over from Rebecca, and had actually been there that first night with me in the ICU as I was coming out of anaesthetic. I didn’t really remember of course but I wanted to know all about it. Well, I was distressed and thought I was being choked (start the 11 day obsession with getting rid of the thing hat had been choking me – my tracheostomy). Apparently I was so stressed they got someone in to have a look if there was something wrong with it. Nope nothing wrong, but my body did think this new invader was trying to kill it. Anyway, we chatted and learnt about each other as she pottered around doing her work tasks (entertaining me was obviously the number 1 task). I wrote out my ‘list of demands’ that I wanted her to fill for me before bed (cheeky). In the morning, she cleaned my eye for me and put ointment and drops in it, and for the first time in 3 days we saw my left eye!

During this whole time I was in a shared ward, though our bays were big. The room felt so different with each person who was looking after me in that time that in my mind, each time the shift changed, I also changed location. This of course didn’t happen, but it could have! Someone could have been trying really hard to mess with me!

At some point someone described me in this time as a ‘big personality’. Just goes to show that you can be dopey and not able to speak and still get yourself across.

The roller coaster ride that puts me in the ward… then puts me back in the Cotton Rooms the next day… But now we need home tomorrow please!!!


This is going to be a bit of a roller coaster. post.

This morning kind of went from bad to worse…

My hopes to get out tomorrow (Friday) in time for our Christmas lunch on Saturday were slowly to rapidly slipping away from me.

And my hopes to get out of the ward and back into the Cotton Rooms today appeared to have gone entirely. I was less worried about that, I just want to get out tomorrow! But they got my parents to go over to the Cotton Rooms (thanks parents, you are amazing), check me out and bring all my things over to the hospital.

So I met with my Oncologist this morning, well he came to visit me in the ward. And basically he thought they’d be keeping me over the weekend unless I did some super human, never-before-seen type Methotrexate clearing. And he said it’s possible (likely) that this is what I’m looking at for my final 6 Methotrexate treatments. Hospitals and weeks that drag out longer. Ugh more hospitals.

As a result, he also said we would be putting off next week’s chemo by a few days. Which means goodbye to all free weekends for the foreseeable future (until the schedule needs to be put off again).

I’m not going to lie, this was all getting me down. The thought of my last 10 weeks of chemo probably now being pushed out, maybe even for months. It’s hard to manage. BUT you know what? Last week I ran into one of my fellow Ambicare Crew (he’s in my next ‘people met so far’ post so I won’t give away too much right now), and he was having a bad week. Sure I was having a bad couple of weeks too. But he had received some bad news, and I can only guess, but perhaps he found out that his chemo isn’t working. Or there may be some other big complication that means his prognosis is not so good. It seemed somewhat serious.

In terms of that, I have had only good news the whole way. My chemo has worked, my scans have been good, I’m finally meeting with the surgeon in a couple of weeks.

Sure, it might take a bit longer, and yeah it will be frustrating and no it’s not what I want. But at least we’re still going in the right direction, even if it’s at more of a crawl. All that will sort itself out.


Anyway, then my blood results came back, and they were… good. Back to what you would expect for a Thursday! So but an hour after my parents packed everything up and walked it over to me, we were all packing it back up and walking it back to the Cotton Rooms.

So that is good!

I went back into Ambicare, and they think that result is borderline for clearing by Friday afternoon and getting to go home. BUT BORDERLINE IS BETTER THAN THE ‘NO CHANCE’ I HAD THIS MORNING!!!

Not sure what’s going to happen with next week, I was meant to go into clinic tomorrow morning, so I’ll just go and do that and see what happens.

I’ll still get a disrupted sleep tonight, with alarms and bathroom stops, but nothing like last night where people kept coming to shout at me about unimportant things that I’d already told them every half hour to hour.


Once again, please cross all your fingers! It appears to have worked for getting me out of hospital by Tuesday last time (even though I had to miss my gig), this time we need to get out of here Friday afternoon. Please please just let me get out tomorrow afternoon. Whatever happens after this week will happen but please just give me this weekend, even if none others.

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.




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…



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.