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. 

Sleep

I'm definitely feeling the tiredness a lot more at the moment. I'm not sure if it's the colder weather and me snuggling under blankets more, but every day I'm guaranteed at least a thirty minute nap.

At least.

The weirdest part is waking up. I'm no longer remembering when I fell asleep so I'm trying to work it out based on whether it's light or dark outside. This afternoon was fairly easy, last night was confusing. The good news is that it isn't stopping me from sleeping at night although I could do better.

Having my tiredness be dictated by my head is something I wasn't expecting, mind. 

Told

Mum has now been told, face to face.

It went okay, as well as could be expected. There were tears, and we were asked (by mum) to leave to give her time to process it all. Which we did.

It's weird telling your parent you have a terminal illness, especially when she wants to do something to help. But there isn't anything, just what we're already doing. 

I didn't cry, just lots of hugs and trying to make sure mum didn't get too upset. We don't know how much she'll retain that she has been told. The key thing is the C-Word - cancer. 

It's all a bit rubbish really.