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. 

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.

Interesting.

Today I was sent my Blood Count Report by email for the first time. You know when you don't know what is available about you until it arrives then you realise it's obvious such a thing exists because how else would they log it? It's that really. 

All my blood tests from the 15th November for three months. They're fascinating!

So now I can see my platelet levels are low - the current level is 74 though it's going back up. I've no idea when it becomes a good level - possibly from around 150 onwards so there's still a way to go though that should hopefully happen. Hopefully. 

Then my white blood cells. They were way lower than normal though also seem to be going the right way now the chemo has stopped. 0.7 was the lowest and around the time chemo was stopped. 

I also only realised this weekend that there's a lot of information about my Operation that we have filed from the hospital, so I've been doing some reading and more filing. I'm not sure what I've learned from doing this other than I'm looking for words people mention on forums to see if they say it about me. Probably one to add to my list of questions which are currently only about tattoos and alcohol (this is me thinking of absolutely everything I want to ask, honest - I will have better questions by the time I need to ask them). 

Anyway, interesting.

Not Being Rash

Okay, the rash looks like it might, finally, be on its way out. 

It's looking really faint - so I'm going to try as my doctor suggested and take one less (drowsy) antihistamine today, see what happens. If I need it then I can still take it a bit later than usual, I get the feeling that I've turned a corner. 

Last night I ate more food than I've done in a long time, I've eaten things which would have given me a sky high reading (when the rash first started), and my readings were low. LOW. Like, 5-point-something. Not like when they were 20-point-something. 

Last night I ate white pasta, mac and cheese. I had an ice cream. I drank coffee. My blood sugar levels behaved. This cheers me up as when you've had the random things happen during treatment it knocks your confidence a bit - especially when there's very little you can do than keep taking the medicine and hope it passes. 

I'm not about to make a habit of it, but it was nice knowing that it didn't have any knock-on effects. 

For the last few nights I haven't needed any Aloe Vera lotion on my back as well as the itchy/electric feeling stopped, so I was getting hopeful... but the last time I was and thought everything had gone it came back with a vengeance so I'm not going to declare anything quite as quickly - mainly as it could come back. It probably will with Phase 3 when I'm on a higher dose of the same thing. BUT right now I'm happy as I'm not having to think about anything else other than typing up all this. So yes, happy days.

MGMT

 I have to think hard about MGMT, my memory not being what it is, plus - acronym. I used to have a spreadsheet with all my acronym's in as there are so many. 

So this is my little MGMT link page which I'll keep adding to when I need information.

MGMT methylation and nutrition Link 1

MGMT general info Link 2

Leaving the House

Here's an interesting one. Well, it's interesting to me. I completed my Radiotherapy sessions last week, and this ended my Monday to Friday trips to hospital. All of a sudden what was a routine became something in the past which I looked back on fondly. 

The Radiotherapy unit I was placed in were lovely. They'd always chat with me about anything and everything that wasn't what was going on with my brain. We'd chat about Matilda, things we've laughed at on YouTube, things we've watched on tv, music we like, Christmas decorations. Yeah, Christmas. That still feels weird, it was the least festive I've ever felt (understandably). But we did it, we got through six weeks of it. 

Then it stops. I left the hospital with Masky and everything went into limbo. The weather was rubbish, my white blood cells and platelet counts were low so we had a simple way of life - don't do anything until the levels improve as I really don't want to get ill - mainly as I won't be able to fight it as well as if I was full strength. Pumped full of drugs and injections to make me as 'normal' as I can be. 

We also worked out that as the antihistamines I'm taking (for the chemo rash/electric shocks) are drowsy ones this might be why I'm so sleepy. Now my blood sugars are improved and aren't too high I've had a coffee again so let's see what happens there. I mean, it's obvious when written down but we've had so much information about everything it just became another thing. Until it became an "oh YEAH" thing. Which was less than a week ago. 

So if I drink more coffee, arrange to meet friends for coffee, don't push myself too much but keep on moving, get out of the house and to a coffee shop (levels of things permitting of course), then hopefully my stamina will return slowly but surely. Plus I'm getting out of the house so it's good for my overall mood. 

Coffee seems to be a theme here....

Introducing Masky

This is Masky. Masky currently lives on a light in our living room as there's nowhere obvious for them to live right now. I'm also trying to think of a good purpose for Masky so that it's not just another 'thing'.

Masky and I met at the start of my second phase of treatment when a piece of plastic was placed over my swollen face and moulded to the shape of my swollen face. Mid-way through the treatment we had to adjust things a bit when the swelling disappeared (it took six weeks) which was fine, it just required my head to be bumped up a bit to keep everything really still. 

Masky and I laid on that Radiotherapy bench every day, clamped in place knowing the treatment was quick - which it always was at around ten minutes.

"Does it hurt?" - I felt no pain.

"Can you tell when it's there?" - I kept my eyes open so saw when the Radiotherapy zapper was targeting my forehead area

"Have you lost any hair?" - yes - just in the area the zapper got me and from the back of my head where the exit beam would have been. 

"Was it claustrophobic?" - I didn't find it that way, though I have spoken to people who do. The Radiographers were all brilliant when it came to chat and reassurances - I miss them all. 

Anyway, here's Masky. 

Chemo Evilness

I guess this journey into the unknown was due to bring up all kinds of oddities along the way as the toxic medicine makes its way out of my system, leaving behind little things to make sure I don't forget it. 

Because, ultimately, if you've never had chemo before, you don't know what to expect as you stop taking it. There are lists, long long lists. "You might have this happen" "You're less likely to have this happen, but you might" and so on. 

So let's do a new list. I have completed Phase 2 of this treatment (Phase 1 being my original craniotomy, Phase 2 being the steroids/chemo/radiotherapy for six weeks). Phase 3 is on the horizon but only once my body has recovered from Phase 2. So let's go into my Phase 2 side effects.

Hairloss. Predominantly around the area the craniotomy/tumour is, though I've noticed some from my hair overall. I used to have lovely thick hair, now I'm rocking a seventies prog look and am being indecisive. Not too worried about this one as it should grow back. Hats are my friend! 

Mouth Ulcers. A new one to the list. I developed the most evil of ulcers in my mouth, fortunately was prescribed a good mouthwash and a week later they've pretty much disappeared. This feels like a chemo side effect so I'm ready if more appear during Phase 3. Which they probably will. The worst two things about this was not being able to eat properly, and not being able to say my name properly when checking in at the hospital. Annoyances!

Blood in my mouth. Another new one - possibly related to the previous one, it has only happened once, possibly from me giving my mouth a good clean maybe? One to keep an eye on anyway.

Itchiness/electric shock feeling. Still going. Sometimes it likes to keep me awake most of the night, sometimes it gives me a night or two off. Definitely chemo related. Poison, be gone! (and please take away some tumour at the same time if that's not too much to ask, ok?). I've had MooGoo products approved to use on my skin so they're slowly arriving and making me feel happier. Feeling happier is a good thing and so much of the fight with this. 

Tiredness/napping. This cranked up a gear when Chemo stopped. Maybe Radiotherapy makes you tired, I think it does. Anyway, proper daytime naps are happening at the moment, usually for an hour or so. I'm not used to it, but I need it. 

The rash. Related to the itchiness/electric shock feeling, my skin is covered in hives (apart from my face) and they disappear at bathtime, reappearing further into the night as I'm trying to sleep. My only happy thing to say about this is I'm not leaving the house at the moment so if I need to sleep, I sleep. If I need to itch I slap a load of cream on my skin so I don't. If I get the electric shock feeling then ditto. A chemo side effect almost definitely. Willing to put money on it - 5p, mind. 

Here's a new one. My fingers do the typing, though sometimes they type something completely different to what I think I should type. I feel like it's something learning a new pathway, I can still type normally and quickly, it's just a weird one to keep an eye on. It's like forgetting words and that being a lot better, it's just a different part of the body. 

ANYWAY. That'll do for now. I do not feel sorry for myself in any way, I am getting on with things, but listening to my body. I have my Radiotherapy mask which I will take a photo of at some point because when you complete your treatment you're given it at the end. Daughter is horrified I am thinking about making it into a plant pot, whereas the Radiographers requested I send them a photo when it's done....

Electric Chemo Side Effect Withdrawal

Oh my. Chemotherapy withdrawal is pretty brutal. For each good day I have I get bad ones that follow afterwards.

So yesterday and the day before I thought the electric current feeling under my skin had gone. But no, it's back today with a vengeance. Add to this my mouth appears to be collecting ulcers so talking and drinking is difficult and you've me : not a happy bunny.

I guess I'm wondering, if I'm put back on the chemo I reacted to, will it be even worse as it's a stronger dose? Will the withdrawal/recovery days be even worse? For context, it's like there's something in my body playing Whack-a-Mole, moving into different areas as you soothe it. Only to find that area hurts again. Prickly electric current feelings all over, you can't rest or sleep as nothing helps make it go away.

Please let this one just be a one dayer...