God

I am not religious in the slightest. I can go into a church and it can take my breath away, though any connection to God is unlikely. 

What actually goes on in my head is the idea that someone somewhere made up a story and it has been passed down through the years, and it's the bible.

My 13yo basically told me this story too and explained why she's a non-believer. She did it way more eloquently than I currently can. I'm pretty sure I haven't influenced her in any way, besides, I've lost the ability to express myself like I used to. 

Sometimes I walk into a church or cathedral and it truly is a work of art, depicting stories from the bible within. You know, if you like that and it moves you that's great - it's probably up there with me having something I love and it being around me. We're all different and it's good.

The thing I'm finding difficult at the moment are a lot of the support groups. A lot of messages ask for prayers to their god and how could god be so cruel to inflict this tumour on their relative?

Everyone is different with this tumour, there's one common thing. We've all had evil treatment to make the evil tumour go away. But we all know it doesn't go away forever unless you're lucky. Like, 5% lucky. 

Otherwise this is a tumour which will be a nuisance and will insist on you having other operations, it'll try to weaken you and if you're really unlucky the steroids you're on will also give you diabetes - and you have to wean yourself off the steroids carefully otherwise you might have seizures.

I've never had a seizure, so I'm not sure what to expect should it happen. On saying that I might just stick with diabetes and steroids for a while instead. 

Tomorrow we find out more about my head. We find out about the chemo I'll be on and how I might react. I hope. 

I'm not being ungrateful about god, btw. Just thinking out loud. 

Was There a Party?

Oh don't mind me, it's another "did this happen?" moment.

I know this memory happened when I was on the ward at St Helier, so pre-operation and when I wasn't getting a good rest. Or at least, did it?

Everyone seemed to be wandering around, patients, family, nurses. 

I know I came out of the bathroom and was told off by husband for taking so long (to be fair, my sense of time had been invaded by the glioblastoma so I had no idea what was going on). Husband and teen were sat on my bed looking concerned. But everyone was having a party. 

By 'party' this was moving around being sociable and chatting rather than a full on rave.

I'm imagining party food too though I can't think I had any as I must have been diagnosed with diabetes again by then?

It's a strange memory, but it's so vivid. 

===

I asked the teen about the party, did it happen? She confirms that no, no such thing ever happened. It was just her and my husband sat on my bed waiting for me to get out of the bathroom. The brain is a peculiar thing. Definitely no party.

Missing Life

Here's something I hadn't thought about when all this started. The teen is hitting her GCSE choices at school - so there are meetings, workshops and many other things that parents are expected to get involved with. 

Except I can't. Firstly I can't drive so that's automatically a husband thing. Secondly, potentially I'm around people who might have colds - and that's not a good place to be when you're in between chemo treatments. I don't want anything to delay the next phase. Maybe it won't? But I'm not wanting to find out. 

So instead husband and teen go to school and have an excellent meeting, coming back and telling me all about it - which is another first! I ask teen every day how school was and usually get an "I don't remember" type response - so getting actual information is a great thing.

On saying that, we have now found out she has to choose between woodwork or media studies for one of her GCSE choices. I am quite envious having had neither of those options when I had to make choices - kids these days have some really interesting stuff to learn. 

They also have some bad things - like having to do all three sciences. Sorry kids, you can't have all the good stuff. 

The teen is also doing her Duke of Edinburgh Bronze, another set of meetings that I can't attend for all the reasons above. 

Add to that, if she chooses Media Studies apparently she gets to go to the theatre in London A LOT. I may be a little envious.... 

Antihistamine Reduction

I've reduced my antihistamine tablets to one per day (in the evening) and things seem to be okay 

I still get a rash on my legs though it disappears quickly (especially in the bath) - so I'm not too worried.

One of my other issues is my low platelet score. Now I have my scores I can see how much they dropped by. I can also see a huge great whopping bruise on my arm where a cannula was fitted yesterday. 

And I can't help wondering if that might delay things. Or then again it might not. 

MRI aye aye

This morning was my follow up MRI where they'll compare the before and after scans. I'm not sure when 'before' actually is, I'm guessing after my craniotomy though. I mean, I would have thought an MRI before then would be a bit pointless. But I don't actually know because it's a question I didn't ask. 

For the first time I was offered music. "Something indie please!" I requested, and had a pleasant acoustic guitar folky set of songs which was a good distraction.

MRI scans take longer - husband was in the waiting room for around 45 minutes while everything was done, though I was also fitted with a cannula for them to inject some dye for the comparison - that was the second part of the scan. 

You also get to wear earplugs and headphones with an MRI scan - which wasn't helpful when the MRI lady was asking me questions as I couldn't hear her. So I repeated what I thought she had said and did a thumbs up which seemed to be okay. 

The music goes into the headphones, though the MRI noise is one you can't get rid of easily - but I'm not complaining. I could hear the music which was enough. 

So this MRI will be what defines the next part of my treatment. Fortunately I'm patient so I can wait until the appointment next week when we'll have answers - instead I'm keeping myself occupied with questions to ask. Unfortunately these are things like "Can I drink alcohol?" (I don't want to) and "When can I get a tattoo?" (probably not any time soon because of infection). 

They injected a dye into me - fortunately I don't have to keep away from sunlight for 24 hours like when I had the op. That was a bit annoying as I hadn't thought the logic through (fair enough, I had/have a brain tumour) - so spent most of the time in the dark because I wasn't thinking logically. 

Anyway, we're edging into phase 3 which will be one of the interesting parts, mainly as it looks like I'm on the same chemo I reacted to. Here's my arm so you get the idea.... 

Chemo rash arm. I had this rash all over my body except my face. Each little spot had an electric shock feeling, pricking my body in different areas at different times, playing its own little game of whack-a-mole on my body. Some nights I'd get to sleep by 5am because of this. Some nights I'd have no additional feelings and I'd get a ten hour sleep in which my body and self desperately needed. 

I was prescribed antihistamines to help with the rash which worked - I'm now taking less of them, keeping my overnight one (as they're drowsy, so helping me sleep is a good thing). It took a while though, and has helped me understand why Phase 3 is one week on, three weeks to recover. I will cry if I get the electric shock feeling again though, if my lack of emotions makes me able to. 

Emotional Lability

Here's a new name. Since the Operation my emotions have been asleep.

There has been no tears for this and my laughter has been missing in action too.

I mean, don't get me wrong, I do laugh, but I'm also aware there's an element of masking involved when I do.

Emotional lability is the term where someone might react in a more extreme way emotionally. For example, some sad and serious news and they (unintentionally) laugh. 

I'm the opposite so I'm not sure this is the correct term, but I have a name so I can do more research on this.

And now I'm logging it here so I don't forget. 

The Rash, The Side Effects, All That Stuff

I do still have a rash you know. It's probably more of a 1/10 rash than when it was raging before, but it's still there to remind me that it'll take its time getting out of my system.

Which in turn makes me realise one week on, three weeks to recover doesn't suddenly sound quite as unreasonable as I thought it did. Do bear in mind I thought I'd be returning to activities around this time, but actually just sewing six badges on a camp blanket using the sewing machine takes up enough energy.

My skin is changing again - now it's dry skin. Only in a few places too - my forehead, the back of my hands and my lower back. So I'm drinking lots of water and hoping it's just a hydration issue - because random things happen and I never know if they're actually meant to. 

It's a bit like one of those eighties computer adventure games. You think you know what you're doing but you end up going back to the same spot with something slightly different. You're not bleeding, you can eat and drink and move around so things aren't in a bad way, so you just keep going. 

I got out my sewing machine today - daughter's new camp blanket arrived so I sewed her name on it, and husband noticed I was shaking quite a lot when we set things up. I'm pacing myself so I don't do too much anyway, mainly so I get everything done without too many issues.