Steroid Reduction

This morning I've had my first steroid reduction, down from 2mg to 1.5mg. This is going to be a long, slow, gradual reduction as if you do it too drastically you can end up having to increase your dose back to what it used to be. It's a week by week thing, which quite frankly if you're me, each week is flying by but now we're talking about reducing medication it feels like everything is a million years in the future. 

I'm twiddling my thumbs waiting to see if my head wants to have a headache or just get on with things - so far it's the latter. Keep it up, head. 

I've noticed over the last week my appetite has gone back to how it was before all this happened. On Saturday I ate so much more than usual I felt uncomfortably full - and that was the first time I had done that since last October. My appetite was fine, I just couldn't eat a lot at once - whereas this was a proper stuff your face I-NEED-FOOD sort of thing 

The only thing which makes sense is the chemotherapy and radiotherapy leaving my system - that's another one to look into. 

One thing I'm mentioning now, I'm becoming a bit forgetful again. Random words, chatting and stumbling over words. I think it's tiredness rather than anything more serious, but we all know what happened last time when I thought it was menopause rather than a bloody brain tumour. 

Holding Pattern

The MRI scan results from last week weren't completely in, just partly in. So we don't have all the answers, we have some. 

Plus we realised we never asked what the objective of all of this was when the journey started all those months ago. My little brain of storytelling felt that we'd be told the tumour had shrunk when they compared it post-operation to now because that felt like the obvious conclusion. We found out today that the tumour is still the same size as post-op, hospital are happy with this as it hasn't grown and my side effects are the ones I keep going on about on here. 

So I'm meant to feel happy knowing things haven't got worse. Oh, and to add to that, what we called my chemo rash might be an antibiotic rash actually - it wasn't tested when I was having all the blood tests of the last few weeks so things are vague there. Though I won't be having antibiotics this time so if I come out in a rash then we know it's chemo related. 

So I'm feeling a bit in limbo, stuck in a holding pattern. Waiting for things to start moving again. I had a blood test this morning and my platelet levels are still low - too low to start chemo right now. I'm that aeroplane trying to land but being told to wait a bit longer until it really is time to start the next part of the process. I'm not frustrated by this - I felt like it might happen, that there'd be a delay. So I'm back next week having another blood test to see if I'm able to start the treatment or not. 

I'm looking into extra ways to increase my platelet count. One way is folic acid though you have to be careful not to have too much as it can interfere with B12 levels. Seeing as I'm enjoying a lot of Nooch at the mo, I'd like to think my B12 levels are doing okay, though I do feel I should have more. 

ANYWAY I have good news (this sounds like I don't think the brain tumour news is good news, I'm still processing it, okay?). I am being weaned off the steroids. It's a slow four week process which may or may not work, the only thing I could say was "I'm celebrating with a WHOLE PIZZA" which probably sounds like I'm not taking this entirely seriously (I really am), I just miss pizza. So that's good news - hopefully. I'm not banking everything on this as things have a habit of going wonky, I'm keeping my fingers crossed and that'll be that. 

I've also been promised I'll get a copy of my head scans on a disc. I joked "amazing! That'll be a fun movie night" because that's how I'm still dealing with this, humour. Got to keep it going for the sake of my sanity even though I feel a bit shellshocked with it all. Time to reflect a bit probably. 

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.