Serious

Okay, so all of this is way more serious than I previously understood.

I'm on palliative care with the hospice as the hospital can do no more for me. So as and when I'll get scans is anyone's guess. 

I can request them which I'm considering. My days memory has gone. There's also leaky bladder time (sorry). I asked husband, do we think the oldest tumour is growing maybe? We don't know. Those are old side effects that are new. 

All I know is that if it is/they are growing the only way we'll know is with yet another MRI.

Which then means if there's a treatment we'll work it out. But if the hospital won't offer me treatment (current position) then what happens next? Super powered painkillers? Except I'm not allowed stronger than paracetamol. Uhhh. 

Anyway, as I cross the pathway back to the world of "oops, she sort of understood" I can't help think about some of the scenarios we've found ourselves in. Hospitals that smell of baked potatoes. Beeps. Bleeps. No sleeps. More bleeps.

My hospital friend isn't replying to texts. Given how terrible I am at replying it could be nothing. That's what I'm hoping.... 

Final

Saturday night and it's the Strictly final. We're unsure who we want to win*, but we want to be entertained and that is definitely happening. 

Husband has been to the shops and we're in for burgers tonight. Yum. 

* Possibly Layton and Nikita.

Another Post, Another Title

I know I have lots of things to write about, also not helped with my fingers missing hitting the correct keys on the keyboard and me also forgetting how to spell things which slows everything down. 

But we work through it all and fix it. Hopefully.

On saying that, when the teen gets home from school sometimes she lets me know that she doesn't have time to chat right then. That's progress.

I've started talking about deeper feelings I'm going through with the husband and teen. I don't want or need sympathy but I do need understanding why I'm so weird at the moment. i wish I could rewind life and start it again from a familiar previous place - like, say when we went on holiday. 

Anyway, Guiding is selling this badge and I'm still not sure why.

Hello

Should I do a little catch up on everything? Let's try....

I'm very tired. We know this, I keep going on about it. Lots of afternoon naps are being had, that sort of thing. Yesterday I lost track of everything. Had my tea and then laid down and had a nap, except I forgot I had my tea. So I woke up at some point past 9pm thinking I hadn't eaten since lunch, and I certainly felt it. 

It took husband to go through everything for me to realise I was completely wrong and had only been asleep for ten or twenty minutes tops. I was so tired I could barely sit up though. 

My sense of time has completely gone - I'm distracted by this being a side effect, but not beating myself up. Mainly as I remember this being an issue at the very start and it sorted itself out, so I'm hopeful this time too. 

My skin issues seem to have stopped which is good news. I never enjoy those. No dry skin anywhere either which is additional good news. No itchy scalp which is even better. 

Legs - feel very heavy. 

Stick - can't manage without it (I think)

Diabetes - I've stopped taking insulin. No major worries. 

Hair (back) - lots of thick, dark curly areas. Weird! 

Standing up is a challenge. I feel a bit giddy when I stand up and if I'm not beyond a certain shape I'll just collapse on the settee instead. 

No bruises on the end of my fingers! As I only need to do this once a week now which is great. Even though I haven't yet. 

Sore Tuesday

My GP doctor visited today, she's great. Lots of long cancer-esque conversations, no conclusions but lots of options.

Before that the Rapid Response team visited, fitting stair rails for me. So now I'm trying those and it doesn't feel quite so bad. 

I've even eaten. Just the best crisps, mind. Handpicked. Tubes!

My sleep cycles are difficult to understand so please don't try. Last night I fell asleep around 1am, my sleep ready to go. Then before I knew it, it was 5am and I was wide awake. 

Then I fell back asleep for a few more hours, probably waking around 11:00, when I was kindly brought breakfast in bed. Which was cold but I'm not complaining. 

Tomorrow my food will be warm!

🍞🥐🥨🫕🥣🍽️

Ouch

This is not the start of the evil headaches though this one is making sure I know it can. 

It's painful in a 2/10 constant ache where paracetamol doesn't touch it. 

Manageable but irritating. I want to sit in the bath and relax but I probably won't be able to get out of the bath. (this happened the other night)

I want to smell good again (always guaranteed with a bath). 

We chatted with hospice doc today as husband is concerned about my side effects whereas I think it's part of it all. I think I'm right, thanks Dr Google. 

Hospice nurse is visiting tomorrow. I like her, she's very straightforward. 

We're chatting with so many people I'm losing track again, sigh. 

I'll Be Surprised If She Comes Back

The first rule of anything is don't do anything. You might find something you didn't want to read. Then you want to make sure everyone knows that's not the case.

"Well how on earth do they know that?" says one of my imaginary friends. They don't.

But when you find out that people are wondering when I'll be back you feel like you're kind of wanted in an unexpected way.

Which is nice too.