Emergency blood transfusions!!!

So I came in this morning for a quick pre-chemo blood test, expecting to be in and out quickly.

I wanted to check what my platelets and neutrophils were doing so my friend the Australian nurse Charlie said to hang around and they’d be able to tell me the results in about 20 mins time. So we waited.

And good thing we did. My neutrophils were a very respectable 1.9 which was a very pleasant surprise (I’d been tentatively hopeful for 0.5). However, my haemoglobin was very low (63) and my platelets had dropped again (30). So. 3 units of blood ordered asap. We’re ignoring the platelets for now. Apparently 20 is the worry.

Two I’m having this afternoon – I’m currently on my second.

The third I have tomorrow.

Thanks again to the amazing people who made this possible. Blood donors are saints.

Now. Tomorrow. I have a kidney test. This goes for 4 hours. I get injected with… Something… And then I go away for two hours. Then I come back every hour for three blood tests. They worried me by saying I would have to have a cannula and that they couldn’t use my PICC line. I was aware for the injection I would need a needle, but I hoped they wouldn’t need to put a cannula in me all day to take the blood from – that’s what my PICC line is for! And we all know from recent experience that cannulas don’t work. Plus my whole right arm is bruised, swollen and sore.

BUT! I just emailed my CNS (my main nurse contact) and she called the kidney test people who confirmed that they could use the PICC line for taking blood.

OH THE RELIEF!

So tomorrow is dad’s birthday. We’ll come in for the first, mean part of the test where I have a needle. Then we’re going for birthday brunch nearby! That’ll be nice. Then back and forth a bit for a couple of hours. Then back over to haematology for one more unit of blood which will take about 2 hours.

And then we’re free!!!!! Over for a drink in the old booking office for the St Pancras station, an absolutely fantastic building. Then up for birthday dinner in Angel.

Hopefully everything is coming up Jen from now. Just need those platelets to sort themselves out.

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.

Some of the people I have met so far – I am presuming this is only the first instalment of such a post.

I think it goes without saying that all of these people are my friends. Everyone I meet obviously is.

The girl in her mid to late 20s who just had everything cancer and chemo thrown at her and came to ask me about losing my hair and how quickly it happened and what she should do. I told her she would look amazing and to enjoy it. I explained that the head shaving party with your nearest and dearest is fun and liberating and whatever she did, to make sure she had fun and owned it, regardless. She left smiling. I haven’t seen her again since. But I know she’ll be fine. Her attitude was great.

The lady who was having chemo and then stem cells put in a couple of days later. Her chemo went for 30mins on the day we were both in Ambicare, and she had to chain-eat ice lollies which she hated, so she complained and I kept telling her how jealous I was. We became friends after that. I was excited to see her the next day when the fire alarm went off. I liked her. For getting her stem cells in two days later she had to drink loads of water and she came and found me in the Cotton Rooms at breakfast and complained that she didn’t want to drink any more water. But she might not be able to get the stem cells if she didn’t. so I made her promise she would go and drink a whole lot more before she went over. I didn’t get to see her again but I hope she won. Since then I have seen many people have to chain-eat ice lollies in the same way and none of them like it. I did hear one person once had about 12 in one go though so obviously some people don’t mind it.

The lady who must have been about to start chemo because she was about to have her PICC line put in (I later found she was actually re-starting chemo). She had some time to kill before the appointment so she was popping out to grab a coffee and asked if I wanted anything. I said thanks, but I would probably pop out on my own later. I saw her again later, me with coffee in hand, and held it up to her asking if she had enjoyed hers. She said she had, and came and asked me advice for keeping my bald head warm. It is always fun to chat about these things with people and I am always happy to give some advice where I can.

The man I met in the Cotton Cove, the common room at the Cotton Rooms. He was maybe in his 50s, and he was so lovely and a lot of fun. I am glad to have met him and his son. Very good people. It turns out he has myeloma (I think that’s what it was called) – one of those scary blood and bone ones. It’s in his blood and spine. Turns out he’d had it for about a year before anyone knew. He had a sore back and apparently it was due to having multiple spinal fractures, which were pushing down on the same part of his spine. Wow. How do you go about life not knowing you have multiple spinal fractures! He will never be cured, but he will be in remission for any amount of time, maybe many years. But then he will probably need treatment again. His treatment is a lot shorter than mine at least. Of course I am never happy due to someone else’s misfortunes in the slightest, but it’s often quite easy to think how good I’ve got it when I have these people around me who have quite some misfortune. With the exception of my extensive chemo (not many people beat me on that), the majority of people are doing the cancer thing a lot rougher than me. Power to you all. I’m here for you and with you.

The guy who I met in the kitchen/dining room with his mum. She was helping him make some food. He was worrying about the next week when he would be on his own. I said I would be around to help him. I saw him again the next week and he said he had been hoping to see me. We chatted and laughed. It turns out he’d had a really bad motorbike accident and was in for 3 weeks straight having intensive physio. Not everyone in the Cotton Rooms is part of the cancer crew. He was lovely. This is his third week so I hope I see him one more time.