Five nights, Five days. That’s all. Then they let me go. Feels quite different from the week and a half of the first hospital admission. Though it is mounting up and I was still incredibly happy to escape.
But I digress. Let me skip through a few ‘highlights’.
On Friday I was having two packets of blood (yum) because my haemoglobin had dropped, as always. I had Lucy that day, one of my other favourite nurses. She mentioned needing to schedule them in around my MRI that afternoon.
‘MRI?’ I said. ;No, I’m not having an MRI today… I had one three weeks ago.’
‘Oh ok, that’s good then, I’ll let the doctor know.’
A couple of hours later, a Junior Doctor came in and told me I was having an MRI that afternoon.
‘No I’m not, I had one three weeks ago…’ I was thinking it must have been some silly doctor doing that ‘maybe there’s an abscess in your face’ business again. I consented to it once, I’m not doing it again, it was a waste of everyone’s time.
‘I know, but I spoke to your consultants this morning and they said you need to have it.’
‘Need? For my cancer? Does that mean the last one was worrying and I need another to check? Or am I now having 3-weekly MRIs?’
‘I don’t think the last MRI has been reported yet.’
‘So am I having another one just because they don’t have results yet? None of these are valid reasons to make me MRI again.’
Poor Jr Doc of course doesn’t know the answers to this question, and here I am crying at him and asking a thousand things. He shows me the email chain between him and the consultants and in it,I see that no one knows who ordered the MRI or why it’s there, but since I’ve somehow managed to get an appointment, it would be nice to have another one.
‘NICE TO’ IS NOT A REASON TO MAKE ME GO THROUGH IT AGAIN.
In the end he gets my consultant on the phone and I cry at him too.
‘Ohhhhh I forgot you’re claustrophobic,’ he says after a while of trying to decipher my sobs. I cry all over Jr Doc’s phone.
I mean… I’m not claustrophobic, but it’s the easiest explanation to him.
He assures me that they don’t have the results of the last one yet, so it’s not in response to anything. He also says that no, we’re not switching to 3-weekly MRIs. But it’s so hard to get an appointment at the moment and they want to take advantage of the fact I somehow have one to get a ‘more granular’ idea of what the cancer is doing.
I can’t really refute this. I’m scared of the cancer. Obviously I suck it up and get myself through the MRIs for that reason. But this feels ridiculous, right? I literally just did it. They don’t even have the results yet and they’re making me do another one. And without all my usual preparation and without my emotional support human.
I also had to have a PET Scan at a private clinic a week ago and it was an experience I really wouldn’t want to repeat if possible (not a great one), and I was slightly dreading the idea of ever having to have an MRI there, so I figured getting another one here, now, was probably a better idea just in case it stops them booking me one there. So ok, bloody hell, prescribe me the Lorazepam, let’s do this.
The radiographers, as always, were just incredible. I had a good looking lad consenting me and he had the right chilled vibe that all the best radiographers do, automatically putting you at ease. I asked my usual – can you please start the scan asap after I’m in. And could you keep a hand on my hand, leg, something, when you’re putting me in.
They both had hands on me as I went in, making sure I felt like I wasn’t alone. Then, as he said he would, he walked around to the other end of the machine and put his hands on my shoulders in a nice sort of hug, just to show me that my head was really close to the opening, as was most of my body.
They didn’t start the scan quickly, but I managed to concentrate on the feeling of his hands on my shoulders and remind myself of the human contact. The rest was fine, as it always was. I chill out once the scan actually starts.
Very shortly after my little MRI breakdown to Jr Doc, my favourite ward doc came to visit me. Lee – he’s the one who I allowed to ‘try’ to get blood from my vein on a previous admission, and he was so successful (and told me I had a good vein) that I let him do it twice. And he was brilliant both times. I feel like we get along well, him and I. We have a good vibe between us. So he came to visit – he wasn’t on Sarcoma that week, but he saw my name and came to say hi. This is something that happens a fair bit when I’m in, and I can’t tell you how much I love it. People popping in just to have a quick catch up, then head off back to their respective roles. Friends. Lots of friends.
On Saturday it was a 9am Chest Xray ordered over temperature panic.
‘Why……?’ I asked, eyeing the nurse who told me it was happening.
‘Because you have a temperature…’
‘What has that got to do with a Chest Xray? I had one when I came in on Wednesday… Nothing will have changed…’
‘We just need to check that the fever isn’t caused by something in your chest…’
‘But it’s not……. We know it’s not……….’
I ended up just having it. It’s easy enough, so whatever. It didn’t show anything, of course.
But there’s always a lot of this. I know what’s going on, my Oncs do – on the ward round on Thursday, my Onc was like ‘soooo same thing again then?’
Still didn’t stop the ward doctors panicking every time they saw I had a fever and seeing it in isolation and trying to work out what might be causing it. The Friday Morning doctor ran in after seeing my temperature, looking concerned.
‘You’ve had a fever overnight…’ He said.
‘Yep yep, as expected.’
‘What do you mean it’s expected?’
‘It’s…. the reason I’m in here…… because I have a temperature…. It’ll take a few days for the antibiotics to work, or to find one that will. It’s not going to disappear within 24 hours, it just doesn’t work like that…..’
They never understand.
Which baffles me.
Anyway, I explained to him about chemo and neutropenic sepsis and the way infections work. Lol. And that we know where the infection is, it’s just a matter of getting on top of it.
He still tried to work out if it might be caused by something else with lots of questions and feeling my stomach and blah blah.
On Saturday, one of the doctors decided they needed to try and find out if it was being caused by the flu. No coughing, no sniffling, no nothing. But maybe it’s more likely to be there flu than my swollen face, totally.
It always annoys me when they order this test because it means I’m meant to sit with my mask on all the time until they can find a private room for me. I don’t, I wear it to the bathroom, but not when I’m sitting in my bed.
But as much as it annoys me, it does then mean I get moved to a private room (eventually), which happened the next morning.
It was a nice room. It even had a fridge.
‘Clarence,’ I exclaimed, ‘we’ve got a fridge! But nothing to put in it…’
‘I’m not going in the fridge,’ he warned me.
‘Oh, no, I wasn’t going to put you in.’
‘Ok, good. Just making sure.’
He goes in the whirly washing machine when it’s absolutely necessary and he puts up with being stuffed into bags, but he draws the line at the fridge. I get it, I wouldn’t want to go in there either. I put my water bottle in for a bit though, it didn’t seem to mind.
The view wasn’t quite as good, but I could still see the UCL main building from the far left window, so we set up there.
On Saturday morning, they switched me to the Meropenem (‘the domestos of antiobiotics’, said the doctor) without me even asking (it’s the one we know works) so consequently, that was also when I had my last temperature spike.
The doctor over the weekend was brilliant, I had her both days. She came in on the Sunday and said she was happy with progress and that I know these things better than she does – when did I think it was likely the Oncologists would let me go home?
‘Tomorrow?’ I said, hopefully.
‘Sounds fine by me,’ she said. ‘I think you’re ready…’
So we put together a plan to make it as easy for them to let me leave. She switched me to oral antibiotics and my job was to make sure I got my blood taken in the morning so that the Oncologists had all the information they needed by the time they came around for ward rounds at around 2pm on Monday.
I told her I love her.
They came around for ward rounds.
‘You’re sort of packed,’ said my Onc. ‘Why aren’t you completely packed?’
‘I didn’t want to tempt fate…’ I replied.
‘Well… You can go home.’
I hadn’t even had a chance to ask or plead my case, we happened to be on the same page this time.
Lee was there too, evidently back on Sarcoma. He signed my discharge papers pretty quickly, but like always, I had to wait forever for pharmacy. So at around 9pm, I finally got to walk my way out of the hospital ward. Our fave nurse Luisa was there to send me off and I made my way back to my haven. I’m scheduled to be here for a week before I’m back for my next chemo on Wednesday 16th, but we’ll see how my platelets go – I’ve got my pre-chemo bloods and appointments on the Monday, so that will probably decide whether we go ahead or have to put it off. I think it’ll be fine.
I’ve also got a full-day GFR (kidney test) on Friday so it’s not a full week of no hospital, but I get a couple of days here and there, which is a relief.
I’M OVER HALFWAY BABY!
3/5 through this regime. Bring it.
4 Comments Add yours
You do make me laugh Jen! Glad to hear you’re back home again. Enjoy your haven. Much love Jen x
Great you are back at home – must give you a boost lying in your own bed .🤗xx
I just got caught up on your last few chapters Jen. This blog of yours reads like a good book…I never know what’s going to happen next, it leaves me longing for the next chapter and plugging for the lead character (I’m referring to you there though Clarence is a close second).
It’s always magical to get another glimpse into your spin on the world. Thank you for sharing it with us, x
Such a good writer. Plus good on you for being so on top of your treatment and scans. People should speak up more. We tend to think doctors are always right…when they aren’t. Hope you are enjoying your week off.