Side Effects Update (4)

Ok, let's get on with it. 

Legs - like lead weights at times, difficult to walk upstairs. I manage but it's tiring. 

Skin - it's behaving at the moment.

Hair - no additional hairloss, lots of regrowth. 

Diabetes - being looked at and adjusted. 

Eyelashes - one side still has very curly eyelashes.

Sleep - I am sleeping. A lot. 

Appetite - very good at the moment, eating lots of food I probably shouldn't. 

Stick - The stick and I stick together. It helps. 

This post is following on from this one. 

Mon-daze

So here we are, another week begins. It's Monday and I have my 'list of things' to do this week (which take forever to get done as I'm rubbish). 

My skin feels like it wants to get going on another rash-spots-dry cycle though thankfully I have plenty of creams to deal with it which makes a huge difference as I'm ready. I managed to lose my scalp massage brush for a few days - though it has pride of place in the bathroom now.  My hands look dry no matter how much water I drink but I have super strong hand cream to try and make them look normal. 

We've had an odd week. Husband got ill - to the point he was in bed on Friday evening as he really didn't feel very well at all - and I was worried in case I caught what he had and dealt with it badly. I kept my distance ("take paracetamol!" "take ibuprofen!" "drink water!" etc)...

I was panicking as he was due to drive us to the hairdressers on Saturday morning, though fortunately everything resolved itself. This is the first time we've had this issue - husband is made of strong stuff (fortunately) - but it made me realise how a Plan B is sometimes necessary. Fortunately he was fine the next day, but it did get me thinking.

And yes, we have to drive to the hairdressers as it's a few miles up the road.  My fault but there weren't any locally we could walk to. 

Last night around midnight we had a pretty big thunderstorm. I was awake for it all, waiting for the big CRASH that was inevitable while hugging husband pre-empting it. My face mask blocked the lightning which was helpful - and once it had passed sleep came quickly. 

Sleep always comes quickly at the moment, and for that I'm grateful. I need it! 

Oh skin, why do you do this to me?

The dandruff-style effect of my dry skin is back. Every time I move clothes which are touching the dry flakes it's like a mini snowglobe without the sparkles. 

Fortunately I have all the moisturising cream in the world prescribed to me so we're back into moisturising everywhere again, the idea of rushing out of the door a distant memory. 

Fortunately I found some E45 bath oil in a large size not too long ago as well - so I don't have to overthink anything, I can just get on with it. 

How annoying though? 

Side Effects Update (2), etc.

I'm pretty sure this isn't the second but guess what? I've forgotten the system I set up. Normal behaviour here, it has to be said. 

I don't have any new side effects I don't think. The problem is that I've forgotten them already. This happens a lot (see above). 

I'm sleeping fine, probably not as many hours as I'd like and I wake up in the middle of the night feeling confused but am able to get back to sleep. My skin is back to normal, hair appears to be starting to sprout again in some places which feels horribly normal. 

I have a really large bald patch at the back of my head from the radiotherapy, currently disguised by the long hair bit I kept because it seemed like a good idea at the time. 

I mean, it doesn't look great does it? But I'm fine with it. 

Plus it's no longer falling out.

My skin is still a bit dry but not as bad as it was when it was really bad. 

My stamina needs a bit of work. I've been so tired with the lack of food that now I'm eating normally again my legs are feeling a bit of a dead weight (like at the start of this treatment) so I'm a bit slower. 

That's that, anyway. 

Second Tumour Stuff

Last week I finished my second session of Radiotherapy. I kept it quiet, apart from a handful of people because I felt a bit like I had failed myself and I didn't need to tell everyone (this happens at times, okay?). 

Initially it was going to be three weeks, but the location of the new tumour (which is still quite small) was close to my spinal cord, so it was decided to make it two weeks and hope for the best. 

I asked my neuro nurse whether my upcoming MRI will show any improvement with the new tumour, and was told that it's unlikely we'll see anything as the imaging will be fuzzy. That's a new one on me, so another to add to the list of things to learn about. 

Neuro nurse said I'm doing extremely well with the treatment - especially as I've had no seizures which I swear they think I should have had by now, the amount of times I'm asked. I've had my nausea/food aversion period, and I feel like I might be going back into the dry skin phase now. Fortunately I have all the moisturisers ever because I'm a sucker for stuff like that. 

We chatted more, and there's a chance I might be on a different chemotherapy fairly soon. I think this is to zap tumour #1 (aka Greebo) and who knows what it'll do to tumour #2 (unnamed). 

I have two Radiotherapy masks now. Got to think of names for them. The only names that come to mind are Hinge & Bracket.  

Nausea and Dry Legs

Oh my word, did the nausea make an appearance. No sickness, just feeling nauseous. 

But it's affecting what I eat (again). So I guess that's a Radiotherapy side effect making a return there. 

So... I'm back on dexamethasone (sad times) at 4mg a day (that I just weaned off), and I'm taking more drugs which have very long names that I can't remember what they are.  Fortunately I now have a spreadsheet with a description saying what each tablet actually is. 

Flipping dexamethasone though. And all the others. 

I had my dermatology appointment today - and the doc was impressed I had so many photos of my side effects. I have dry legs apparently, so have been prescribed more creams which will help. So I'll be reporting back on that in a few days... 

I tell you what though, feeling nauseous and having the world's worst itchy legs is not a great combination. At all. 

Ants

Okay, this ants thing is getting out of hand. Husband is trying to find the nest (no luck so far) but there aren't enough ants to trace it. 

But you can guarantee that when you're not looking for ants you then see five of the things.

They're like London Buses - they all come at once when you don't need one. 

The good news is that despite not doing much yesterday (but feeling pretty tired), I fell asleep quickly and didn't dream of ants. Long may that continue.... I'm sure my next dreams will be peeling feet anyway. 

Battle! Fight!

One thing that bugs me a lot, when other people describe someone who has been diagnosed with cancer, they'll tend to refer to it as 

"(insert name here) and their brave cancer battle"

or

"Fighting cancer - what a warrior" sort of stuff. 

I can hereby confirm I have not yet had a battle nor do I feel like a warrior. I feel like me. Boring, ordinary old me. I just have this crappy thing in my head which I can't forget about easily. 

The crappy thing will remain in my head, and I should find out how things are going fairly soon. Hopefully the crappy thing won't have grown but let's not think about that right now. 

My days are spent working through my to-do list and trying to move around as much as possible - which is easier when the teen isn't at school (strikes, nothing more sinister). Also, Daytime TV. It's generally awful, however I've been able to pass on words of wisdom to a few people with things I've spotted. So yeah. 

It doesn't seem like a battle. The only time I feel something is when I want to fall asleep or my legs seize up when we're out of the house. 

I remember wondering what it would be like to have a month off work, but couldn't ever do it. Here I am six months off work and okay, I'm recouperating and learning what I can or can't do (DRIVE! DRIVE!), but I do miss not being around people. 

Tiger Bread Feet

So after hating my now-healed hands, the dryness has spread to my feet. 

Cracked palms vs cracked soles, the feet lose big time. So off to the chemist I go for a decent foot cream that I'm able to use. My toes are peeling, my soles are dry and spiky. Truly, chemo side effects are no fun. They're talking about increasing my dose for the next batch. 

In other news, I have a rash all over my neck. We all know what's going to happen next, don't we? 

(p.s. this is not a good photo of the rash, it's way more defined but you get the idea)

Spoke Too Soon

Last night I was awake until gone 2am as guess what? My skin was really itchy - all over. 

I am putting it down to taking a drowsy antihistamine too late in the day. Or just sleeping too long the previous day. This might not be helped by me sleeping until gone 10am today. I was tired! 

Progress

Last night I slept all the way through and didn't need cream to calm the itching.

That's all. 

Side effects update

Hands : very very dry and peeling. The good news is the peeled area has lovely soft skin. 

Legs : It feels like the heat - rash - peel and itchiness might be spreading to my lower legs. There is nothing better than scratching my legs raw and then having a bath to cool my skin down. 

Upper back : itchy. Helped when I insist husband or the teen put cream on. They're very good indeed. Current itch out of 10, probably 2.

Scalp : dry skin patches, fairly easily fixed with a nice massage oil. I have a Kiehl's one which smells great and works. The biggest downside is I can't smell it.

Appetite : Coming back slowly. I am eating three meals a day, sharing anything I can't eat. 

Hair : has FINALLY slowed down falling out. I can no longer stuff a teddy with it. Now I just have the world's smallest ponytail.

Walking : I can walk, I need the stick. Today we went to Bluewater and by the time we got home my legs had seized up. Husband and teen are doing a sponsored walk for my hospital. Lovely stuff. Since I came off the steroids my legs have functioned normally which I am forever grateful.

Flaky Skin Dandruff

Oh this is horrible. Previously when I've had dry skin I've had a few days of intense moisturising and it's gone. It has stuck around a couple of extra days this time, and oh can you see where I've been sitting. I'm leaving lovely deposits of flaky skin dandruff. 

The worst thing is there's so much of it this time around. It's everywhere. On the settee, on the carpet, in all of my clothes, little white flakes. I've dealt with dandruff in my teenage years when you'd have a delicate flaking of them on your shoulders - but never before have I knowingly dealt with it where it's on my body and flaking off everywhere. Even my neck is flaking. 

We have a gig tonight (I bought tickets ages ago) - and while I'm not paranoid about it (I could wear my long waterproof if it's really bad) I wish it was next week. These things are sent to try us - I hope they don't have fancy UV lighting, though I'm happy I'm in the accessible area and I have a seat. 

I'm hoping it'll be gone in the next couple of days, though that means that something else crops up instead. 

Itchy World of Pain

Oh my word. The itching. It was a whole new level of torture under my skin with no creams stopping it, just giving me a break until tiredness took over.

I am aware I'm scratching, itching my arms, legs, elbows until they hurt because I'm too tired to put more cream on. 

That what's left of my hair is probably hairs and flakes because there's not a lot up there right now, so hairs fall out with a lump of flaky scalp at the same time. 

I'm hoping tonight will be better. All I do is moan on here. 

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)

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..... )