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 

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. 

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. 

One Month Until ..

Well that's an interesting idea, post on social networks that we're a month from Christmas Day. I mean, how has it come so quickly?

So I checked today's date - it's the 29th. Ho hum, I lost a few days there didn't I?

We're in that funny phase where I thought I'd been ill for a handful of days but husband tells me it's a week and a half. So now we're working out if we need to phone someone medical. The GP will probably send me to A&E (no sleep, choice of foods), the new hospice will probably send me to A&E (as above) and the old hospital will probably ask me to go in (and again ..) so it's a no-win situation as far as NOT going to A&E goes. 

I don't actually want to go there. Mainly as I can't get discharged easily as they see the diabetes on my notes so it ends up being a weekend stay. 

Here, have a Dave Grohl pic.

Stuff

I have a lot of posts in draft at the mo, this is the latest one.

My problem is that I can never remember what I was going to waffle on about.

Like now.

Irritating.

Discharge

I re-read my discharge letter from the Royal Marsden. It's quite bleak. 

This happens a lot, I read something but then go back to it and I re-read as something completely different. 

Essentially I've been told any new side effects will be managed by the hospice, though I can still request appointments at The Marsden.

I also still get GP phone calls and prescriptions. 

But yes, the 'sorry we can't help you until you need help' letter feels a bit more "you're dumped" than I thought. 

Which I'm not, really, kind of. But I sort of am too. 

It's so confusing being me. I might also feel a teeny bit upset for the first time too. 

Forgetfulness

Yeah yeah, the f-word again. Sorry. 

I'm forgetting a lot at the moment but am being told not to worry and just focus on my steroid reduction. Which I was anyway, I like a good project to keep on top of. 

Anyhow, we reduced my dose by 0.5 this morning, I used my last test strip (prescription central!!), and I need to get more. Now.

I still have the one head, I feel a bit unwell (like a 2/10) and am ready to plod on with whatever is required unless it involves long walks which I'm currently not able to do as it makes me feel tired. 

My week used to be organised by the daily puzzle on Animal Crossing however, I'm now forgetting to do the puzzle. Today is Monday but in my head it's Thursday. It's SO confusing. Those closest know, they make allowances too. We get through it. 

It's weird having excuses and reasons for the way you are and them being accepted without any questions. 

Vomity

Phew. What a horrible night last night. 

I appear to have caught something. I'm unsure what but I managed to be very very sick last night, couldn't take any tablets and generally felt sorry for myself under the spare duvet in the front room.

At one point I needed the loo which was quite unsuccessful - I stood and fell on top of husband, unable to manoeuvre myself off him. If I hadn't felt so rubbish I'd have had the energy to laugh. Fast forward a couple of days and I've got a pair of quite spectacular bruises. 

Fortunately we worked it out. Fortunately.

I've no idea where this came from, other than every ten minutes or so I had to be sick. That was delightful. 

I did get a very good sleep last night and this morning. As in, I woke up about 10.30-11.00. I'm so very tired still.

We plod on, let's hope this is on its way out....

Chocolate

I can't stop eating chocolate. It's like a weird addiction, I see the biscuit, the biscuit has to be eaten by me. So it is and oh GOD it's so good. 

This was assisted by my friend bringing me biscuits yesterday and me stuffing my face full of chocolatey sugary badness. I'm sure my blood sugars went for a little party at this sugary smorgasbord of treats, though fortunately I wasn't due to test myself. 

ANYWAY. We are on the "let's mess with my medication" mode at the moment, with the purpose of no insulin or dexamethasone in the coming months unless something happens. Which we know is probably likely. 

I'm getting a lot of phone calls and I'm struggling to remember who is who and who I've had a conversation with at the moment. I have prescriptions to pick up, medicines to take and general confusion with it all which I'm sure will pass with time. But I also have my chocolate. 

Side Effects Update (4)

Ok, let's get on with it. 

Legs - like lead weights at times, difficult to walk upstairs. I manage but it's tiring. 

Skin - it's behaving at the moment.

Hair - no additional hairloss, lots of regrowth. 

Diabetes - being looked at and adjusted. 

Eyelashes - one side still has very curly eyelashes.

Sleep - I am sleeping. A lot. 

Appetite - very good at the moment, eating lots of food I probably shouldn't. 

Stick - The stick and I stick together. It helps. 

This post is following on from this one. 

Baby Bruise Fingers

If I could get a good photograph of the tips of my fingers I would, but I don't think the lighting works in my favour. 

On almost all my fingers are tiny fading bruises from months of blood sugar testing, pricking the end of my finger and taking bloods to check everything is behaving. 

Then I get a text from my GP who wants to talk about cholesterol. OH Cholesterol. This has always been an issue, it goes back years - back to when I was previously diabetic. I think they just want to phone me rather than have an appointment, I can deal with that. "Did you know your cholesterol levels are higher than they should be?" "yes" "okay, good stuff, bye" would be the ideal outcome here, though I know it'll be "eat less chips - eat less pasta - portion sizes - graze" sort of conversations. Those foods are faves at the moment as they're easy to eat and I don't feel unwell eating them. 

While the small circular bruises disappear back into my skin, only to be reactivated when I choose that finger. The blood thinner tablets are definitely doing what they're meant to... 

The bonus of diabetes was my nurse checking my feet last week and instructing my husband he has to moisturise my legs and feet once a week. Something I don't think I'll forget quickly anyway....

Hello Monday

My head is so tired. There, I've said it. I think this is a hangover from our trip to York and everything that came with it - which was two weeks ago now. But maybe it isn't?

Maybe this is just how my head is meant to go? Every day I need a little lie down on the settee to reset my brain and have a nap. Sometimes the nap is five minutes, sometimes it's over an hour. 

I'm probably due a side effects post, the only new thing (which isn't that new, I just forgot) is the heavy feeling in my legs again, thanks steroids. Dragging myself upstairs every day isn't much fun - though there's very little you can do about it without medical guidance. 

As I'm being very strict about what I can and can't use based on what the GP/NO tell me things take longer to be a part of my daily life - if allowed. 

The main thing is I'm allowed PIZZA and this makes me very happy indeed. That's all. 

Out Out Out

Tonight is another night out at the theatre. I can't wait! Although I have a horrible feeling we're in similar seats to the last time we went there where I had to take breaks getting up the stairs. The joys.

Tonight it's Annie at the New Wimbledon Theatre - with us finally seeing Craig Revel Horwood as Miss Hannigan. We've wanted to see him in the role for so long now - I think it may have been a Paul O'Grady one before he died though. We've seen so many different excellent Miss Hannigan's now (Miranda Hart, Lesley Joseph (possibly twice), now this.... yes, we are watching the same production we always watch. 

Beforehand we're going to Bill's in Wimbledon who do an amazing fondue in a bread roll - we had it in York the other week for my sister's 50th. Were we not in a restaurant I'd have picked it up and drank it like a drink, it was THAT good. 

I'm wondering if I'll eat as much as I did in York - I ate a lot there - the fondue (shared though), a vegan burger and a spooky brownie for pudding. Too good. 

I guess this is a sign my appetite is back as well.... we're all having conversations about reducing my daily steroid amount - though I can't remember what happened last time. I think I was hungry central probably.... 

Truffle cheese fondue sharer with halloumi fries. Yum. 

Cold Nose

The end of my nose is cold. This isn't a new thing, it's one of those things I have forgotten to mention here.

Last night I insisted husband checked my nose temperature, and he agreed it was pretty cold.

This wouldn't be so weird were I not wearing my Quokka Oodie which is unbelievably toasty. I'm warm everywhere except my nose. Obviously now I'm looking at a gazillion side effects but nothing obvious is coming up. Maybe I'm just meant to have a cold nose. 

The side effect (which dates back to the craniotomy in October 2022) where my nose runs when I eat is still there. I think that's one I'm stuck with, alas. 

But it does make me wonder if the two things could be related in some way.