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!)🏃🧘🤸🤾🦂🕷️🪱🍟🥨🍕

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. 

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. 

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.

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. 

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. 

Not Using the F-word

So we're all more than aware how little my head retains. It's irritating, especially when the teen and husband tell me about a conversation we've had the previous day and I have zero recollection. 

At first I wondered if there was a parallel universe where these had happened with another me, which would explain why I don't remember. But that feels way too complex. 

Nope, it's happening, I don't retain it and then I feel like my life is confusing. 

So if I then accept the conversation happened, do we move on? Nope. We talk more about it until I get tired.

Side Effects Update (3)

Shall we?

Skin - generally okay, though I can see where new hairs are growing how it pushes a kind of small spot-like bit of skin out, giving me the appearance of an oddly dandruffed woman. MooGoo cream seems to fix that thankfully.

Hair - no flakes. I'm sure they'll be back, but I now have a scalp massager so I'm hopeful I can keep it away.  No hairloss either. 

Diabetes - I'm still sitting in that middle range blood sugar reading place where I'm not concerned if they're a bit higher, though I need to watch myself in case I eat something I shouldn't.

Eyelashes - oh they're beautifully curly in a way they have never been before, and don't seem to have straightened in any way. With the adverts on tv and the kids who are now blind because of an eye thing they've picked up I guess I probably should have minor alarm bells ringing.... in a 'just in case' way.

Leg muscles - they're getting heavier feeling again, a common steroids side effect. There isn't much I can do about it other than keep moving around. 

Sleep - I'm sleeping. However, I do wake up early every morning (sometimes even around 2am in need of the loo). The bonus with this is I get snuggles with the teen while her dad makes her some breakfast - assuming this is after 7.30am of course! 

Appetite - it's back at the moment, we'll see if it sticks around or whether I stop eating again.... 

Stick - I'm still using a stick when I am out walking, often I need it to help get me moving, other times it's there as a support. It's used every day anyway. I did go through a short phase of forgetting to take it out, but always remembered in time. 

Wednesday Thoughts

Ha, see, if I call each post the actual day it's published, maybe that will help me. 

Though right now my biggest problem is that I think of something I want to post here, I log on, create a new post and oh, guess what? The time it took me to do that and stop thinking about what to post, the actual post has now left my brain. Gone. Forgotten. 

The last time I remembered the post was in the middle of the night, not the most practical time. 

It's more than a bit annoying - this is low level memory stuff which is being forgotten (thanks head). 

So the question is, if I wake up at 2am and remember, should I make myself post it? 

Oh, I think I might have remembered something. For the last couple of weeks I've been trying to find the husband's nasal hair trimmer. Yesterday I found it. My long nasal hairs have been trimmed! This has led to me having a runnier nose than usual (not sure why), but it has also led to my nose no longer being itchy. Thus, it's a huge great big R E S U L T as runny noses are a bit irritating. 

Hungry Like the 53 Year Old Woman I Am

I vowed if I was near the laptop and hungry I'd blog, so here I am.

I'm SO hungry. I had my usual lunch, I've had a mid-afternoon biscuit because I was still so hungry. Yet I'm still hungry, needing food for my groaning, croaky stomach which is making sure I don't forget it needs feeding. It's a bit of a pain. 

My hunger needs are definitely on the side of "feed me NOW" (a la Little Shop of Horrors) - though I am able to not eat. Then I just think about food - which we don't have as much of as I've been eating. Plus - diabetes.

I'm also annoyed as the Eat Real multipack crisps I'd been buying no longer seem to be available at my online shopping place. I don't have the energy to check all the local supermarkets so am doing without or am just splitting a large bag into smaller portions. Not quite the same but btter than nothing I guess....

I have more than enough to eat at lunchtime, it's the steroids switching my appetite around again I think. 

Mon-daze

So here we are, another week begins. It's Monday and I have my 'list of things' to do this week (which take forever to get done as I'm rubbish). 

My skin feels like it wants to get going on another rash-spots-dry cycle though thankfully I have plenty of creams to deal with it which makes a huge difference as I'm ready. I managed to lose my scalp massage brush for a few days - though it has pride of place in the bathroom now.  My hands look dry no matter how much water I drink but I have super strong hand cream to try and make them look normal. 

We've had an odd week. Husband got ill - to the point he was in bed on Friday evening as he really didn't feel very well at all - and I was worried in case I caught what he had and dealt with it badly. I kept my distance ("take paracetamol!" "take ibuprofen!" "drink water!" etc)...

I was panicking as he was due to drive us to the hairdressers on Saturday morning, though fortunately everything resolved itself. This is the first time we've had this issue - husband is made of strong stuff (fortunately) - but it made me realise how a Plan B is sometimes necessary. Fortunately he was fine the next day, but it did get me thinking.

And yes, we have to drive to the hairdressers as it's a few miles up the road.  My fault but there weren't any locally we could walk to. 

Last night around midnight we had a pretty big thunderstorm. I was awake for it all, waiting for the big CRASH that was inevitable while hugging husband pre-empting it. My face mask blocked the lightning which was helpful - and once it had passed sleep came quickly. 

Sleep always comes quickly at the moment, and for that I'm grateful. I need it! 

Loneliness

Here's one that I keep meaning to type up, maybe I already have. Who knows? Anyway.... loneliness. 

It's a weird one. I quite enjoy my own space, my own headspace, being on my own. Occasionally I crave company, usually when I'm feeling chatty (which can be anytime). But obviously, being signed off work for almost a year now with a few visits from lovely people who come see me isn't a huge amount - and more often than not, lately I've felt a bit lonely. 

This isn't helped by the teen being off school for the summer holidays, nor the husband working - both are brilliant, by the way. But it's just not having someone there at the point you need them. This isn't something that can be fixed easily and I'm content and accepting of that. 

We're all getting a bit snappy at each other now though. Not to the point it's a problem but I see it on a daily basis. The teen isn't happy I suggested adding food she likes to our weekly food order, for example. The silly little things we can do something about. 

There are the things we can't do anything about. I had my MRI follow up consultants appointment yesterday where Tumour #2 hasn't got bigger which is a good result. I'm not sure what it means going forwards because I've got quite slow about questions, thank goodness for email, eh? Tumour #1 has a new growth though that may have been covered in my first course of treatment last year with the radiotherapy. But the new growth isn't necessarily bad, it might be leftover "stuff" (my term) from the first treatment, growing in to remind us all that this isn't a cancer that's going away - it's a cancer which is going to be a proper pain. A proper pain which nobody knows when it's going to strike and get worse. 

Overall my consultant is happy with how it's all going. She's happy with me and my positive outlook. She was surprised I didn't look more poorly. 

I celebrated with cake and a 9.1 blood sugar reading afterwards. Not wise. 

The bonus of the new growth is a more frequent MRI schedule to keep an eye on it. Oh MRIs, how much I like you, lying there listening to Magic FM or whatever is on and trying not to bop my head to the music. It's quite relaxing to lie there with nobody bothering you (which I guess is now the exact opposite of being lonely, typical!) and live in your little world for half an hour or so. I preferred radiotherapy appointments as they were every day and quick so I'd get to chat to various radiographers or even bump into other cancer patients waiting for their treatment, it was like we had a little social club - and then it's stopped when you reach the end with just your plastic face mask to take away from it all. 

Anyway, this is just to say occasionally I feel lonely, there's not a lot I can do about it, but writing about it is always a good purge of the brain. 

Oh skin, why do you do this to me?

The dandruff-style effect of my dry skin is back. Every time I move clothes which are touching the dry flakes it's like a mini snowglobe without the sparkles. 

Fortunately I have all the moisturising cream in the world prescribed to me so we're back into moisturising everywhere again, the idea of rushing out of the door a distant memory. 

Fortunately I found some E45 bath oil in a large size not too long ago as well - so I don't have to overthink anything, I can just get on with it. 

How annoying though?