Shout, Shout, Let it all Out

I'm trying to organise my non-brain-tumour time accordingly, ensuring I'm doing good stuff. So that's things like eating. drinking, reading and so on - the easy stuff. Except I can't do it because apparently if I don't do it when I'm asked I'll never do it (not sure about that).

So we've had a disagreement. These things happen. I'm the unreasonable one apparently. Okay. 

It'll sort itself over time I'm sure. The head doesn't want to deal with arguments right now, it's too much.

I have also developed a very dry cough, just like the one husband and teen have got rid of. The joys. 

Today is going to be a "get stuff done" sort of day. Priority is with the nail clippers, mind. 

There are no spooky ghost crumpets any more, alas. 

The Quietest Time of Night

is now. 

Husband always suggests I come to bed at midnight, however my sleep patterns are really messed up.

I usually lie on the settee, volume low and drift off to the tv. It's all fine. However, tonight the volume was lowered even further so there was no point. So instead I'm lying in the silence, the ringing in my tinnitus ears at high volume just in case I really fancied having a little nap or something.

Which comes way easier than it used to. I'm cross at things, at life. Things that didn't bother me seem to do a bit more than before. 

You know the weirdest thing about this tumour? It never goes away it just keeps growing. That's quite irritating. 

I've noticed lots of end of year lists, so let's give it a go. Bearing in mind I've little to no idea what came out this year. 

ALBUMS

Pale Saints - In Ribbons reissue (4AD)

Big Thief - can't remember its name

Air Miami - Me Me Me (4AD) always a classic album, always

The National - their last album (beggars/4AD)

Lucy Dacus - Home Video (Matador)

ARXX -  Ride or Die

TV
Happy Valley (binged)

Ted Lasso (binged)

Squid Game

Taskmaster (obvs)

I should probably try sleeping....

newest blood blister 

People

THEN there are people.

The most bizarre one is getting my sister and daughter mixed up. 

Teen was born in 2009, sister 1973. Big gap.

But yet I'm confused and I know I am. It'll get worse I'm sure. 

Probably as to whether Home Alone or Die Hard are Christmas films (they are). 

When your brain fractures into several variations it's very confusing. Especially when your brain says they're all correct. 

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.