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. 

Longhair the Nasal Nose

New side effect. This one is SO attractive. 

I appear to now have long nasal hairs. Not quite long enough to stick out of my nose, but long enough that I'm occasionally checking them, primarily for loose bogies but generally in case they really have grown and are making an escape up my face. Let's face it, I'm used to things just appearing from nowhere and this sounds like another one of those scenarios. 

Fortunately things don't seem too bad right now. I am ready to buy a nasal hair trimmer if necessary (or go to a Tiger Stores - they always have them) but oh, long nasal hairs. WHY?

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? 

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. 

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. 

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.