27th of the Twelfth

Technically this project bit is over. I haven't finished though, oh no no. I could probably write forever and it'd make no sense.

This is the phone v laptop argument. I know I communicate better on my phone, but it makes less sense. Whereas I can spend ages on the laptop rewriting things which still make no sense.

I have managed to develop an unnatural fear of people. The idea of answering the door in my pyjamas makes me feel queasy.

It goes much further though. I have to be out of my pyjamas by 11am and ready to leave to stand a chance for anything to happen that day. No phone call pics here, let me tell you. 

(I don't actually want anything to happen, I'd rather a few days off and if I can read and write at the same time, then job done!)🏃🧘🤸🤾🦂🕷️🪱🍟🥨🍕

Merry Christmas

25th December seasonal greetings to all!

My presents are unopened, this will be rectified. 

Hi ho ho! 

Breakfast in Bed

Up to now the ultimate treat in anything is Breakfast in Bed. For me it's nice and simple - a buttered bagel, a cappuccino and all my various medications. As I've often said, "if you pick me up I'll rattle".

I have simple, practical tastes. Plus a bagel tastes so good with that. 

The teen has the same, however, her routine means she must leave half of everything for my husband. We're all not sure why. 

The last few nights I've had some odd dreams about Adam Green and his Moldy Peaches songs. In my dream all the too-cool US bands have got together and covered the Moldy Peaches, with various papers streaming a track so everyone can hear. For some reason I have the job of looking after it all. 

Anyway, I checked Wikipedia & Discogs and it doesn't exist. Like I need another excuse to listen to it all :-)

My favourite BiB must be lightly toasted bagel, Marmite and a fried egg on top. For extra flavour some vegan salami could be added (because we need flavour). All served on a plate on a tray with no additional phone calls. Voila. 

Rottnest Island

Head Clear

can I mention how confused I am again? Only Connect, Mastermind, University Challenge. All quizzy Monday programmes ON A THURSDAY.

Husband and teen are both full of cold so we're all avoiding each other. 

Which is sort of weird as we're used to lounging around in here having random conversations. I'm glad this doesn't happen all the time. 

Instead my head has 'Discoteque' by Le Roop on repeat, a song which came eighth in the finals, though apparently 'We Are the Winners' scored more (and yes, of course we know the words).

Fara Williams, Mary Earps and the teen.

ANYWAY today's update is that I have a wheelchair (not yet needed), I'm getting an emergency box (ditto) and a hospital bed will be on order too. I have also run out of steroids (not wise). 

I always have so much to witter on about, which is often forgotten as it takes me so long to get in here and I'm distracted. Must do better. I'll just say we're delighted Mary Earps won footballer of the year because she's not afraid to speak out - more people should do it.

The teen and Fran Kirby aaaaaages ago. 

I'm having a confidence crisis. Should I post my beige food pics? It helps me remember where I was from day to day, though the actual day might not be right. 

This is my Bill's meal. Oh it was SO good. Inside that big loaf is cheese, cheese and more cheese. 

Bill's fondue and halloumi fries, yum. Beige. Yum.

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. 

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. 

Bruise Glorious Bruise.

Saucy shoulder shot. It's slowly going....

Do the Collapse

This is not going well.

I keep randomly falling over. Apparently I have a bruise on my forehead, and I definitely have a bloody blotch on my leg. 

I was getting out of the bath, lost my balance and a couple of crashes later and I'm looking suitably war torn. Maybe.

My hospice nurse was wonderfully sympathetic, though there's very little we can do other than wait for it to heal. 

So I'm off baths for the time being and hoping that showers won't be as problematic. I get randomly dizzy and that's when the problems start. 

I wish it was all nice and straightforward.