Tuesday, August 29, 2023

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? 

Monday, August 28, 2023

Wheeeee

Let's keep this short. Straight after the operation I was a bit incontinent. Most of the time I'd get to the loo with time to spare. 

Anyway, over time it all sorted itself out which made me happy.

Cue now, ten months later and I swear I'm weeing more than I've ever drunk through the day. Last night I had to get up every couple of hours. I'm going to bring it up when I'm next in hospital anyway. 

Anyway, that's the state of my bladder. 

Saturday, August 26, 2023

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. 


Thursday, August 24, 2023

You Sound A Bit Rude

Ugh. I have been reliably informed by my nearest and dearest that I can sound "a bit rude".

So : context. I have had tinnitus since around 2003 or 2004 (I don't remember). Since the brain op the ringing has been louder from time to time.

My nearest and dearest speaks very softly, so much that sometimes I can't make out a word he says. Sometimes I respond with a "pardon?!" and today I copied what it sounded like he said, which unfortunately was seen as being rude. 

The ringing right now is loud, not horribly so but enough it's not as easy to ignore. But now I'm conscious that how I respond could be seen as rude. Add to that the teen is in a funny old way about something. 

All I want to do is curl up in the quiet under a blanket and get some much needed headspace.

Also, there's absolutely no way that Eddystone Lighthouse is eleven miles away. 

Wednesday, August 23, 2023

Things I Can No Longer Do

Oh sadness. Went to the beach today, I managed just over an hour of lying in a tent before I realised I had to get back to the car which where it was a bit more shady. The heat was too much, my arms came out in a rash (which has now gone) so I did the right thing.

This is interesting as it's the first time I've stayed out in the sun without having shade handy. 

The hill back to the car was SO steep. I had to stop several times to catch my breath. 

Saturday, August 19, 2023

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).

Friday, August 18, 2023

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.

Monday, August 14, 2023

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. 

Tuesday, August 8, 2023

Thing

You find out all sorts. The teen and the husband both told me things from last October that they had forgotten.

The teen, I've forgotten again. I'm saving this space for when it comes back to me.

The husband, today I found out that when I was first admitted to hospital I had a full body MRI scan. I was surprised but I guess it makes sense - they wanted to make sure that there were no other tumours anywhere else in my body. There wasn't. I have no recollection of this at all. 

The only thing I ever remember from MRIs is the noise of the machine, mainly as I'll make a little tune in my head with it to pass the time. Seems to work, anyway! 

Saturday, August 5, 2023

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. 

Wednesday, August 2, 2023

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. 

Sore Neck

Oof, it hurts. Trying to sit up without hurting my core. My upper shoulder is in pain but behaving.  It's not agonising pain but it'...