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...