Hairloss Update

Oh, so here's a good one - some good news at last. My hairloss has really slowed down - I'm not getting as much hair coming off on my brush every day. Having said that, as my hair is now so thin maybe it's because there isn't as much to fall out? 

A photo which isn't an easy one to identify me, but you can see where my hairline went to, and how thin my hair now is. 

It then gets scary. What style should I get my hair cut? I mean, I'm facing up to losing a lot. I had a lot of hair once (read - six months ago). There are so many chemo hairstyle suggestion websites but I'm in the 'shave it all off and wait for it to grow' phase of it all. Probably. Then I have to visit my mum as it has been a very long time since I've been face to face with her. "Oh hi mum, I just fancied a shorter hairdo" probably isn't going to work. 

I've still got time to work on that one anyway. 

Flaky Palms

Did I mention my flaky Palms?

The softer side of my hand is trying to make the evil rash go away 

The rougher palm of my hand has what looks like skin when a blister has been popped. (Nothing of the sort has happened)

I have more MooGoo cream to soothe my evil prickly body which refuses to sleep because it wants to annoy me. 

The main issue is it feels like I need four different creams to make it all go away until the next time...

Mini Skin Cycle

I just checked, a normal, full skin cycle is 28 days. I know this isn't the case for my weird skin at the moment though. 

Currently I have one hand which is living the later day of the rash, where spots no longer really resemble spots and look more like light skin ulcers. I've been using my National Trust Orange hand cream which seems to be helping. My other hand is fine. 

It's a bit weird, but then having gone through it between Christmas and New Year, I know that chemotherapy and I don't always get on very well. We've got to have the rash, the electric shock feeling and the broken nights sleep. It's all part of the process and now I understand why I get three 'recovery' weeks. It's so I'm lulled into a false sense of security and I forget how inconvenient and irritating having rubbish skin is. 

If I was to have a full 28 day skin cycle then I'd be finishing my chemo week while simultaneously recovering from the previous one. Too confusing. 

My upper back is the only area which is itching slightly (not enough to stop me sleeping - go me, went from midnight to 7.30am this morning) so things are moving, changing - but I know all too well that if something goes, it's likely something is about to appear elsewhere. 

Anyway, I thought what better excuse to write about my rash-covered-hand, eh?

(this is where I should add a photo when my phone is charged)

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..... )