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. 

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. 

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. 

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!