The Memory Thing, Food and Not Sleeping Too Well (I guess) & AOB

The Memory Thing - my days are getting mixed up again. Why, just yesterday I asked the husband if I went to a cafe with the teen at half term. I couldn't remember at all. I think he may have been surprised I didn't remember too. Mainly as he pointed out to get to the cafe, I'd have had to drive. Oh yeah... I can't drive can I. He was there too. Whoops. There have been more of these happening of late.

Food - I am conscious that my eating has slowed down a lot. These days everyone has finished while I'm only half way through my food. I'm hoping the food aversion isn't coming back again because that was annoying. I finish most things, however am leaving food in the evenings as I get too full. But it feels like it's changing again.

Not Sleeping Too Well - this isn't new. I've always had problems sleeping. I'm even worse at the moment, getting by on a steady five or six hours every night. I miss the days when I'd wake up at 10am, it's more like 6 or 7 these days unless I can get back to sleep quickly. I've cut back my coffee to one a day and none in the afternoon to see if it helps too.

Any other business? Well, yes, actually. This is a new one that's got into my head more than it should. I saw a lady in her seventies (maybe) walking outside, enjoying the sunshine. I felt really sad inside - that might never be me. I want to be an old person enjoying the sunshine, except instead I'm having to limit my time in the sun thanks to burning quickly. For the first time since this whole treatment started I felt quite sad for myself. Not sad burst into tears sad, just sad that something I'd have taken for granted might not happen. But then again it could, such is the unpredictable nature of this annoying tumour. 

Electric Shock - footnote - it's gone. 

Dermatology appointment - I got cream, it's all good. 

Memories....

So the world of weird has re/appeared these last two days.

In my head I'm staying indoors today because I'm due a delivery from Nespresso and Ocado are delivering our food too. 

The reality is that I did a Nespresso order a week ago and Ocado are delivering tomorrow. So now I'm trying to work out why I've set today aside and I can't remember for the life of me. 

Yesterday we went for Afternoon Tea at Langshott Manor which was nice and empty so we had space from other people. I was still stuffed after two sandwiches and two scones plus a mini lemon meringue tart, so brought the food home with me. Husband fared better only bringing home his mini carrot cake. 

I've come to the realisation that lots of food and how I behave afterwards could have a weird side-effect. I get really tired (blood sugars? Even though I'm not diabetic) and then I need a nap and usually have one. It's a new thing, I'm listening to my body and getting on with whatever I need to. 

I'm also wondering if rubbish sleep equals a rubbish memory. I'd take that over more cancer growth a billion times. 

Electric Shock Revisited (2) (maybe?)

So that electric shock feeling that I got on my body (which I'm still putting down to chemo) has come back. It's a 1/10 level, easily ignored, but it's definitely back. 

I'm now wondering if it's actually a radiotherapy side effect as those are the ones kicking in at the moment. 

Fortunately my skin hasn't dried up, developed a rash or cracked up. 

Stick-y.

Today I finally did it. I got into the car, we were driving to hospital, and I suddenly realised...

"I've forgotten my stick!"

We probably could have gone home to get it, but I figured I probably would be okay without it, and if I needed one I could borrow one from the hospital. 

But yes, today I went out without my stick. Getting out of the car was interesting. My legs seized up as well by the time I got home - which was a good excuse for an oily E45 bath to make my skin nicer anyway.... 

When I was getting a cannula fitted into my arm for them to add dye to me at the relevant part of the scan, another nurse was asked to do it as apparently "you were moving too much" - I had the most pain at one point where I was saying "ow! ow!" rather a lot. I never get like that....

Anyway, nurse #2 was asking some questions about my chemo side effects and said the magical words "Do you get a pins and needle feeling in your hands?" Yes! Yes I do! My Electric feelings! This was the first time someone had confirmed they knew someone else who had that feeling which has done a lot for my overall confidence. She then proceeded to tell me how her friend still doesn't have feelings in her hands six years later but we'll skip that one. 

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.

Hospital Stuff

Went in for my April appointment today, where things are now different within the hospital. I had been given a bloods appointment but knew their systems well enough that it wouldn't be an actual appointment in my name. Probably. 

So instead husband got me a number ticket, and I queued to check in. Which went okay, other than we were waiting in the bloods area for about an hour and a half. Long. This meant the actual appointment I definitely had I was then running late for. Which I probably forgot to apologise for. Sorry. 

Waiting in the blood rooms isn't the most exciting of things. Fortunately we both had our phones charged. Unfortunately all the games I wanted to play wouldn't connect to the internet. Never mind. 

To add to the general chaos of it all, I didn't have an appointment on my records. The hospital app shows one, so my blood test nurse had to find a doctor or consultant to be able to make it visible so she could extract some blood. Incidentally, chatting with a mum who has had cancer, she has been told she can never donate blood again. So that's something I can't start, because I'm fairly certain they'll tell me the same. 

The appointment was added, the blood test taken, I headed to the area for my second appointment and got a "Oh thank god! We didn't know where you were!" sort of reaction (which was quite nice!). Got sorted there and we decided that I should stay on the same level of chemotherapy as last time because of the rash, lack of appetite, sleeplessness... I'm happy with that. 

While we were there my up to date platelet levels came in, and are looking better than they have for a while. They're not perfect but they're moving in the right direction. This new app the hospital is using gives you test results though all I got was glucose. It seemed high, but I'm not sure if that's because I'm still taking insulin every morning (which I don't think I need to).

Anyway, altogether we were in the hospital for a Very Long Time. My prescription is now ready to be picked up so I can restart my chemo today. It's all good. 

Yet again I have forgotten to do a blood sugar reading before eating. It's so annoying, though most of the time you have a rough idea what it would be. Bloody annoying though. 

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. 

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...

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.

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..... )

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. 

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.

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...