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. 

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.

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. 

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....

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. 

A Logistical Nightmare

Things are going well. I currently have four or five hospitals/medical establishments which are issuing prescriptions to me. I've completely lost track of who has issued what and what my medication actually is. 

So my days are phoning the GP, hospital, other hospital and so on to try and work out what is going on. 

Some of my prescriptions are different dosages so I need to make sure I have the correct dose handy as well so I don't run out. Uuuhh.

Too much to think about!! 

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.

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. 

Anyway....

 "GASP! Will we get to use your Blue Badge?!" excitedly asked the teen. I told her it was unlikely as there were plenty of parking spaces and we weren't going to take very long. The disappointment.... 

My brain is jumping around trying to work out what day it is. Yesterday (Monday) my head thought it was Thursday - and I ended up quite disappointed it wasn't (Taskmaster, yay) - today it's confused and not bothering. Although on saying that, I'm due at the hospital this afternoon for an appointment we're confused as to what it's about. 

(extra sidenote, our nurse had no idea she had an appointment with me so she was elsewhere for a while as well)

Anyway, everything seems to be done that needs to be. I need to have two blood clot blood tests every year to check everything is working and I need to get (one of my many) prescriptions switched from the hospital to my GP. 

So now we move onto prep for next week's appointments....

Clean Clean

So for goodness knows how long (we're talking years here) dirty clothes end up on the floor, screwed up in a ball which clearly indicates there's no way it's getting worn again until it has been washed. 

However.

Husband is very tidy. He tidies everything. Everything. 

So all those clothes which were screwed up in a ball on the floor have been picked up, occasionally placed on a coathanger and generally just exist to confuse me forevermore. 

So to remedy this I've put everything* in the wash. 

* not absolutely everything, that'd be silly. 

Date to Date

So of course I checked in with one of my neuro nurses to make sure I hadn't missed any appointments. Except every single appointment was correct. When I looked at my list it didn't even seem as bad. Which leaves me wondering....

Could I see the same thing twice but it's different both times?

I know that sounds ridiculous. 

But it's the only thing that makes sense.

It's a bit weird. 

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. 

Pills, Thrills and Bellyaches

Yesterday I had my fortnightly call with the neuro team to see where we are with my various pills and things I need to take. 

As I'm managing so well it has been decided I can stop taking the steroids (just like that, which I find weird as last time I had to taper my dose) and we'll see where we stand as we head into September and the next MRI and follow up. How is it almost September? 

I feel a bit weird about it all - I don't know exactly what each medicine does so there's a lot of trust in those who know, I also can't help feeling like I could be some weird experiment. A lot of this stems from not having an active network of any other brain cancer friends so you're comparing with anonymous people on the internet. Not ideal.... 

When we hit September we also get close to the year anniversary of all this happening. Now that is WEIRD. 

Taking On Too Much

I'm really good at this. Say you'll do something and it doesn't quite get done. It sort of does, but there's nobody else to pick it up - so therefore the responsibility (which shouldn't) falls on me because there's too much to do. 

So I have all my health things (currently fairly quiet), my Guiding things (currently not quiet but no brain power to deal with it right now), keeping people updated/informed of where I am with everything (I am rubbish), Rebel Badge Club merit badges (it feels like a good fit as most of the badges I fancy working on are things I'm doing so I can push myself a little bit which is ironic considering all the notes above)... the list goes on. 

I mean, I'm working on the readers badge, going slowly, carefully through the books as you do, digesting all the content inside. THEN you find out Will Sergeant has his next book coming out next week. So due to my forgetful nature I should preorder it even though I'll forget I've done this. 

I mean, on one hand it's a nice surprise. On the other it's a "oh.... oops" as I set myself a target of not buying anything. (I'm not doing well on that front it has to be said).

All Mixed Up

Flip. It's happened again. I had something to write about and now I'm here I've forgotten what it was.

This is normal behaviour for me these days, though it doesn't stop being frustrating. It's like, just logging onto Blogger and setting a new post ready is enough to wipe out the thoughts I had. 

Sometimes it comes back. Sometimes it doesn't. I wish my brain didn't get rid of my thoughts this quickly though. Give me enough time to write a note rather than plough through my empty head. 

Anyway. This is possibly the most pointless post yet but I'm going with it.

H....h.....h....

"blah blah blah raw halloumi" said (probably) husband

"Raw Halloumi?!" I exclaimed, confused straight away. "How can you have raw halloumi?"

"You don't cook it?" I was offered back.

"I'm so confused. How can you cook halloumi?" 

The teen looked at me. "Are you getting it mixed up with hummus?"

I was.

That is today's example of my mixing up words. Oh how we all chuckled. 

Smile.

This is something I've noticed more of late. My smile is a bit strange at times. Not noticeably so, but enough that if you know, you spot it straight away.

With everything that's going on at the moment I've found myself taking a lot of selfies. Hairloss, skin rashes, all of that. Amongst most of these pictures is my terrible smile. I think I look pleasant but then I see the picture - and the weird formation my mouth is shaped into.

By the way, don't get me wrong, it could have been a billion times worse if we didn't have phones and had to post off films to be developed like in the old days. At least if the photo is bad I can do a quick retake although most of the time I am too tired or can't be bothered. 

But yes, my smile. It needs work. It's up there with my mum in the eighties when she would start a conversation while having her photo taken, leaving us with a permanent reminder of an odd expression. (I do like them though!)

Anyway, I'm working on my smile. I may be some time. 

Side Effects Update (2), etc.

I'm pretty sure this isn't the second but guess what? I've forgotten the system I set up. Normal behaviour here, it has to be said. 

I don't have any new side effects I don't think. The problem is that I've forgotten them already. This happens a lot (see above). 

I'm sleeping fine, probably not as many hours as I'd like and I wake up in the middle of the night feeling confused but am able to get back to sleep. My skin is back to normal, hair appears to be starting to sprout again in some places which feels horribly normal. 

I have a really large bald patch at the back of my head from the radiotherapy, currently disguised by the long hair bit I kept because it seemed like a good idea at the time. 

I mean, it doesn't look great does it? But I'm fine with it. 

Plus it's no longer falling out.

My skin is still a bit dry but not as bad as it was when it was really bad. 

My stamina needs a bit of work. I've been so tired with the lack of food that now I'm eating normally again my legs are feeling a bit of a dead weight (like at the start of this treatment) so I'm a bit slower. 

That's that, anyway.