Going Out

I bought tickets for the three of us to see Dick and Dom in Da Bungalow, which ended up being moved from last October (lucky) to yesterday. 

School night gigs never work well, though fortunately as this show finishes fairly early and it's a twenty minute drive home it was manageable.

It was kind of funny - the front rows were empty. Dom decided to encourage everyone to move to the front which actually worked well. We stayed put as I had a good seat with minimal steps. Even though I'm no longer taking steroids I know that could change and my leg muscles will feel heavy again. So the atmosphere improved and I stayed put. 

Being out and around people was strange. It was good but still weird being so close. I'm glad this is a recovery week as I can tell I'm going to need them. 

I can't imagine going out on a chemo week. 

In My Head

"The cells look very abnormal. These are the fastest growing tumours. They often come back after treatment and can spread to other parts of the brain and sometimes the spinal cord. You usually have treatment with radiotherapy and chemotherapy."

This is like a giant brick being carried above my head using a fishing rod, all day every day. Yeah, we're going to treat you but sadly it'll probably come back and you'll have to go through all this again. You're not allowed to forget about this. I can generally ignore it, but occasionally it bugs me - like now.

It feels like I'm moaning about something which nobody else truly understands - and to some extent that's true. But there are people around me who know about certain things. Husband has done almost all of my care.

Teen has helped as well. We're a good tight unit. But I can tell it's getting tiring for them both. I'm tired too. I've stopped sleeping again (3am last night). This whole EVERYTHING about EVERYTHING keeps going around my head.

My big, round, flaky head. The flakes are pretty big now, all over my scalp. So I'm looking into a hair oil I can use to help the flakiness disappear. That or I wear a hat all day (which is fine but could get hot)

Even my ears are flaky. It's really not a great look.

Hair We Go...

I appear to have lost a lot of hair suddenly. I was expecting something to happen but not as much at once. I've been washing my hair (when it has been itchy) and gently combing or brushing my hair. You could probably stuff a baby teddy bear with the hair that comes out. 

Earlier today I asked husband to do a hair check. He can see more than I can in the mirror, plus will happily take a photo so I know what he's talking about. 

"Oh.... there's quite a lot of hair missing" he told me. I knew this, though it looks like there has been a major progression. The other side of my scalp (slightly above the hairline at the back) is now looking quite thin and sparse, hair-wise. 

I knew this - I've tied my hair up in the night at times when it has felt quite static-y and uncontrollable. I've noticed the hair fastener be tighter from week to week - from five times to six, to seven..... so I've been preparing myself for this time. 

The haircut. 

The last time I got my hair cut was in September 2022. I booked another appointment afterwards but my brain decided it was time for a bit of attention so I need six months of tidying up. I decided it was probably better to wait until the hairloss calmed down (I was having visions of a perfectly cut hairdo without thin patches so I think I should probably quit while I'm ahead).

"...and you have a lot of dry skin on your scalp as well" this makes sense with the itchiness. Well, off to the bathroom I go to give my scalp a bit of kindness and to hope it washes all the flakiness away. 

I spoke to the hospital this morning about my dry eyes and mouth, I'm getting something in my next prescription from them which is good, though still a couple of weeks away. I'm now wondering what's good for a very dry scalp. Other than itching it. I'm such a scratcher. 

Let's try to be coherent. AKA "this is what it's like on chemo"

This blog started out as somewhere to keep notes, but I think is lacking coherent content. So until my brain forgets what I'm writing about, let's try and do a "this is what it's like on Chemo" post. 

I have finished my first chemo session. I was taking 220mg (I think - need to double check) whereas before with radiotherapy I was taking a lot less.

I break my treatment sessions into three groups to keep things simple:

Phase 1 - my craniotomy and steroids kicked in, insulin too. 

Phase 2 - the daily radiotherapy and chemotherapy (1x20mg capsule + 1x140mg capsule once a day) plus steroids and insulin. 

Phase 3 - chemotherapy and insulin.

Phase 4 - Getting really irritated, more than I ever have been, by Ant & Dec, the 'On the Beach' ad and most perfume adverts. I warmed slightly to 'We Buy Any Car' when I found out two were filmed locally. They're still irritating though. 

ANYWAY.

I want to list my Phase 3 side effects as this is what is most recent in my head so I'll remember more. 

Swollen eyes. Ohh it looks like someone has whacked me in the eyes - they're so swollen. Fortunately they're hidden behind my glasses, but I feel quite self-conscious about my eyes. This is the first time I've felt this way about any side effect - probably as it's my face. 

Hairloss. I mean, I may as well brush my hair and watch it all come out, I don't have a huge amount left. I can make a tiny, thin, ponytail at the back of my head. Otherwise known as "it's probably time to get your hair cut" - but. There's always a "but" isn't there?

That electric shock feeling under my skin. I haven't found anything which comes close to this in lists of side effects. The feeling came back on chemo which says to me it's definitely the chemo I'm allergic to, not the antibiotics. On the couple of days leading up to the rest days I had to have the teen rub my back and husband rub my head as it felt like a thousand ants having a rave under my skin. It was not pleasant. I need to find something to calm it down for next time, especially as I think they might increase the chemo dose depending on how they think I've done. 

Sleeplessness. I managed to stop sleeping. It was like the old days! Lying in bed wondering when I was going to fall asleep again.... it just came from nowhere. The plus side is I'd keep sleeping until 11am, though that then sends everything completely out of whack, so isn't the best. I guess this is why they call them recovery weeks.

Lack of appetite. This one is a bit frustrating. I've never been a slow eater, I've never had no appetite. Yet here I am, taking forever to eat food, if it's spicy I can't deal with it. If there's too much of it I'll probably only get through half. Desserts are back off the menu, mainly because I'd be sitting there a week later still eating it. Maybe. 

Raised blood sugar levels. Yeah. 

Edited, added later. Spots. I found one on my neck. Another looked like an infected hair follicle. There's one on my bum. They're in very random places - the only thing they have in common is their itchiness and that it's more like a boil than a spot, and there's only ever one of them in that part of the body. 

Edited, added even later, I now have several hives all over my body and thankfully a good supply of painkillers. Let's see how we go. 

Other side effects of TMZ - forgetfulness. There was something I was going to bring up and guess what? I've forgotten it.  I've had a few times where I've forgotten what day it is - but that could be put down to poor sleep patterns so I'm not committing that one there yet. I did panic yesterday "I've not had my chemo!" to which husband and teen both said "It's Sunday, you don't take it on a Sunday" showing they're way more clued up to all this than me! 

I had one evil cold sore which was fixed with mouthwash and hasn't reoccurred. I've had a skin rash which looks like it could be coming back (the teen has been monitoring my skin very carefully) - so we'll revisit during the next part of the treatment as it's difficult to say this time around. 

I think that's everything. I'm sure I'll have forgotten something. I mean, we went to Nyman's National Trust yesterday and I forgot (yet again) to order the Tagine there and made do with a lukewarm baked potato instead (hmm, new blog..... )

Thin Hair

I thought it was the right time to add a photo showing how thin my hair is from the side these days. Whenever I brush my hair I get a generous helping of grey dried out hair on my brush as the hair on my scalp disappears.

Husband said he could see lots of dried skin in there too. I'm such a looker these days!! (we won't add my swollen red hands which really cap off the look)

I've got a broken brain

Today was the first weird day. I woke up at around 10am after having had another unsettled night of coughing.

"Where is mum?!" My head immediately alerted me. "What have we done? Where is she?!"

I panicked. Because all my head knew was that my mum wasn't there and I needed her here.

Then I remembered. Mum is safe. She has never been with us. It's all okay.

But right then my head was pretty convinced she was.

A new side effect to the chemo has resulted in my skin looking a bit red and swollen. It doesn't feel like last time but I'm keeping a close eye on things. 

I've got a Broken Face

Today's "uuurghhh" moment is my face swelling up.

Under my eyes - I think my days of using the MooGoo eczema cream may have to stop - underneath each eye is what looks like a roll of skin which is swollen. 

Fortunately I have plenty of creams I can use from the first chemo/radiotherapy sesssions so I'm not panicking in any way. 

Yet. 

I was on a lower dose of TMZ the last time which is why I'm not sure how I'll react this time. Keep everything crossed that nothing plays up!