Was There a Party?

Oh don't mind me, it's another "did this happen?" moment.

I know this memory happened when I was on the ward at St Helier, so pre-operation and when I wasn't getting a good rest. Or at least, did it?

Everyone seemed to be wandering around, patients, family, nurses. 

I know I came out of the bathroom and was told off by husband for taking so long (to be fair, my sense of time had been invaded by the glioblastoma so I had no idea what was going on). Husband and teen were sat on my bed looking concerned. But everyone was having a party. 

By 'party' this was moving around being sociable and chatting rather than a full on rave.

I'm imagining party food too though I can't think I had any as I must have been diagnosed with diabetes again by then?

It's a strange memory, but it's so vivid. 

===

I asked the teen about the party, did it happen? She confirms that no, no such thing ever happened. It was just her and my husband sat on my bed waiting for me to get out of the bathroom. The brain is a peculiar thing. Definitely no party.

Let's Time Travel

 Let's time travel; not too far back, but back to a period I've thought a lot about lately. Not for any great reason, it's just lodged itself in my head - much like the music from ads on tv I'm not paying attention to, but who have lodged their earworm status successfully. 

So... back when I was at St George's and I had the operation, I was initially on a ward where I had to stay in the dark thanks to the dye injected into my head (so they could get bad tumour out and keep good brain in place I think). I got moved to a new room suddenly, with no reason at all. Two porters turned up and said "Okay, let's get you to your new room" which was a bit of a surprise. 

I didn't actually have to do a lot as they wheeled me there but it was yet another occurrence where there was no pre-warning, it just happened. I got used to that, most things were absolutely fine things. 

My new room was me and one other person - and once I was settled we had a good chat. Eventually we found out we don't live far from each other and as things move to the present, we're meeting for a coffee this week, so being moved was a good thing. 

We had an idea of what happened when on the ward based on noise and smell. I could only smell potatoes for a very long time - we wondered if it was a side effect of the operation as I can't imagine people on wards eating potatoes for breakfast (though it does sound good). The noise was different though, beeps and nurses coming to you for various tests and monitoring. 

Every morning at 6am a nurse would come to me. "Time for your blood pressure" "time for blood sugars" and the rest. At first I was the nice polite patient, sat myself up and lots of please and thank you's because it was the right thing to do. THEN I realised it was way easier to stick my arm in the air and they can do what they need to, with me adding a sleepy thank you at the end, which they probably didn't hear. 

It wrecked any sleep patterns I was trying to have, although being in hospital does that a bit anyway. Noise through the night, lights I couldn't work out how to switch off.... alarms going off by patients (like me!) and giving up in the end and making do as my needs were very little ones. 

I should add, everyone at St George's was brilliant - I'm not in any way complaining about any of this. Everything came back as a quite focused memory this week - and how I dealt with it. This could have been one of the first times I was aware of times of day, even if I didn't know what day it was. The not knowing which day being a side effect of the operation and tumour which is slowly sorting itself out now we're further down the line. 

St George's had an interesting food selection - different menus too, and fortunately my roommate had one. So when the nurses came to take our food orders I was able to choose diabetes-friendly food - which was usually an omelette and handful of wedges - which was, quite frankly. heavenly. 

If I was to compare their selection to St Helier, then St Helier wins hands down. They even mark low GI options on their menus and healthy choices. The selection there was way easier to navigate. Although maybe my memory is failing me again and they're all the same? But anyway. I looked forward to my food every day, except the day my eyes swelled up so much (an operation thing) that I couldn't open them so a nurse had to feed me. Fortunately the swelling went down by mid-morning. 

So yes, my general memory of this time is being wrapped in a blanket and sheet, sticking my arm out of it for the nurses and trying to get some sleep but failing.I eventually caught up when I was discharged - I got so much sleep - more than I'm used to. Then the radiotherapy and chemo kicked in and I wake up at 7.30 and that's it. I still get enough sleep which is good - and I know things will get worse as the treatment goes, so I'm taking my moments while I get them!

One

 Since the detection of the brain tumour I've noticed something weird with my head. There's always an uneven number of something and I need to find a single thing to make that uneven number even. 

That's probably the clumsiest way of explaining it - it is never anything that matters, always something that can be forgotten, often forgotten straight away other than I need one to keep things even. So my dreams are the quest for the single thing to make things okay again. If things are wonky then maybe it's a bad luck thing? I'm not about to try and find out, I know it's nonsense and something which has no meaning with anything, but it's a recurring dream which keeps coming back. 

The odd thing is I can never remember what the single thing is I need, but I get it. Then what? Dream forgotten, gone until the next time it comes back. Every-single-time. Every-single-night. 

I'd love to know what it means. It'll be mind games, the single thing being the path out of tumour land (which is unlikely to ever disappear until it takes me away) - and while I can find that single something in my dreams it's all okay, there's hope. Maybe. Hopefully. 

It is really odd though. I remember being in hospital at St Helier and trying to find the something I needed which took longer than usual. St George's? Yep, again, found it, a bit quicker this time as the ward was quieter and there was less other noise going on. 

So now at home it just comes every night. "Hello! You have uneven somethings and we need this single something to make it even then you can sleep again and not worry about things. Do hurry and find it, okay?"

I wish I knew what it all related to and why it's always needing just one. I'm not about to spend time figuring it out, I just wish it didn't happen every single night!

The Start

October 2022 and husband had enough. I wasn't listening, my menopausal brain fog was making me tired. 

He dialled 111 and the person he spoke to told him to take me straight to A&E. So the idea of a no fuss rest and recharge wasn't happening any more.

Things get hazy around now. I don't remember a lot about A&E other than I was there for a long time.

At some point I was sent off for a CT scan of my head, and it was confirmed that there was a brain tumour there. I'm fairly sure I stayed in hospital for the weekend, coming home on the Monday. 

However, my sense of time was non-existent. Evidence:

- I could easily spend two hours on the toilet without realising it had been that long.

- I'm easily distracted.

- My days are broken down into what is on TV that night and that day's Animal Crossing tasks. 

- I forget all of the above.

Moving onto a ward, I knew two other patients which was nice, however, both have dementia and kept me awake overnight. One was convinced she was about to be killed, the other was distressed and wailed all night. It wasn't great.

My memory of this is getting the brain tumour diagnosis while on the ward though my husband disagrees and says it was in A&E. 

Everything is hazy with bits of clarity. 

At some point I was discharged from St Helier with instructions to prepare for an operation at St George's in Tooting the following week. Things were moving very fast. Too fast possibly. I needed headspace but too many people needed me - and if I didn't start treatment then my life expectancy would be significantly lowered. 

(At this point we didn't know what stage it all was, this was later confirmed to be stage 4)