So the MRI showed what I thought it would – there was no abscess or mass that needed to be drained, so we just stayed on the antibiotics. We changed to a third different type on Friday to see if it would work. My Haemoglobin and platelets were low, so a few transfusions were ordered here and there. My body didn’t seem to be holding onto them though. Though the annoying thing is that foreign platelets don’t survive inside you for long. They can boost your numbers initially, give your body a little boost, but they die off within a few days, so the effects are temporary. Blood does stay in you of course, the kindness of a generous stranger weaving into your veins and mixing with your own. Unfortunately mine still kept dropping.
‘Are you sure you’re not bleeding from anywhere?’ the doctor asked.
‘No. I promise I’m not.’
As of today, Tuesday, I am having another packet of both. I asked if they had any idea why it kept dropping and the doc just shrugged and said it was probably just a late effect of the chemo.
It feels like my body is already running on empty, but I’ve got to go again with chemo next week so… I can keep having blood transfusions along the way but if my platelets don’t somehow boost up… Well, I don’ t know. I don’t know what it means, I don’t know what they’re thinking. I think they’ll just see how I go with today’s.
I’m expecting at some point they might switch me to having my chemo on the ward rather than in the Cotton Rooms because then they can monitor me more closely and keep topping me up with things as needed overnight.
But we shall see. No one has suggested that, it’s just something I’ve wondered.
On Sunday morning, my favourite doctor came in to see me (am I allowed to have favourites?). It was a beautiful morning, the sun was streaming in through the windows as I ate my bowl of rice crispies.
He had also been there through the infamous ‘there is no cage’ conversation.
‘Jen,’ he said, ‘I don’t know what’s happening. I don’t understand why this one infection marker just keeps going up. It’s still going up.’ We hadn’t had the results of that day’s blood.
I wish I had some great solution for him.
‘I don’t want to stress you, because this isn’t based on us being worried, things are generally looking like they’re getting better, but I just want to try and sort out this one CRP that keeps going up, do you mind if we just do a whole lot of tests and swabs? We’re not reacting to anything we’ve seen, it’s just this one thing. So don’t stress out about all the tests, I’m just going to throw anything I can think of at it.’
‘Yeah, sure, that’s fine, I don’t mind at all.’
I liked how sweet he was being. I really didn’t mind, I wanted to find out too.
Before he left, he congratulated me for getting through the MRI.
‘Mate, I smashed it!’ I told him with a big smile, I really appreciated his congratulations. ‘Honestly I did so well!’
I’d tell anyone who listened.
There were a lot of vials of bloods taken and about 3 different swabs – if you find getting swabbed once up your nose and throat is a bit rough, try going back for more. And again. But fine, I didn’t mind. (If I say ‘I don’t mind’ any more times I think someone might accuse me of over compensating for something).
On Sunday afternoon was the Formula 1 Grand Final and E4 had negotiated getting it on free to air, which I only realised the evening before. So Clarence and I sat in my hospital bed, with my parents watching it in Sydney, and we watched one of the most exciting races I’ve ever seen. Made even more exciting by the fact, and I still can’t believe it, that MAX VERSTAPPEN ACTUALLY WON!!! I was very excited, and he raced incredibly. What a beautiful bit of joy and normalcy amidst all the swabbing and testing.
One of those many swabs was for flu. Just normal regular flu. Remember that? I obviously didn’t have any symptoms or anything, I don’t have the flu, it’s just one of many things they’re throwing out there. But precautions dictate that once you have been swabbed for flu, you must be quarantined. So I had to be moved into a private room and off my beautiful bed on the ward. Thankfully it had been a really easy ward to be on. But I am never going to complain about a private room (with my own bathroom and shower!). So off I went.
Within the two hours of being in my new palatial suite (which I was told not to get too used to because I’d be going back as soon as the results came back) I had amassed quite a clump of hair on the floor around my bed. It’s been depositing itself anywhere it can find and it’s almost all gone now. I’m nearly going to finally get to see the huge scar across my head from my surgery last year, so that’s exciting!
My private room also allowed me to do a few things that weren’t possible in the shared ward, like have a proper shower, and I also asked the nurses for a pair of scissors (they only had tiny ones) so that I could cut my hair up a bit shorter, which felt so much better. I felt so refreshed. What do they say about a change being is as good as a holiday?
I’ve also had some amazing friends drop a few little supplies off to me, as well as a surprise visit from a friend who works in the hospital, which has been lovely.
And finally, when we got the results back from the Sunday morning bloods, it looks like that final CRP (infection) marker started retreating, and the infection is starting to retreat! The new antibiotic is the one! My neutrophils have also been inching up. So things are looking like they’re going in the right direction, finally.
One last thing for now – my other favourite doctor said there had been some issues with my bloods the last couple of times – not huge problems, but for some reason there’s been some haemolysis of the blood from my PICC Line (meaning it’s breaking down). It hasn’t caused too much of an issue mostly, but it’s meant they haven’t been able to check phosphate levels (and maybe a couple of other things). So he asked if could take some blood from a vein. NOPE! I said defiantly. He asked a few more times, he has a cute smile. Eventually he wore me down. I said ONE expert could have ONE go. And that is all I would allow. He took that deal. I asked if he was an expert, he said he was pretty good and I was like NOPE!!! I did a lot of shouting nope. Anyway, I eventually agreed. The time finally came and he had a little feel around my arms and went for the one that I know is one of my good ones. After a moment he said ‘oh yes, that feels like a good one,’ and I knew immediately that we would be ok. Anyone who does it by feel and is happy to go for that one on the outside of the inside of my arm, they always get it. And he did, and it was absolutely fine. So everyone was happy.
I told him he had now officially been promoted to expert. He’d earned his badge.
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It feels like a privilege to be reading your blog, thank you for sharing it. Sending a big virtual hug 🤗
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Thank you so much for saying, it really means a lot xx