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)

Farewell (I hope) Insulin....

Had a phone call with the Diabetic Doctor this morning to talk about lowering my Insulin I take every day. 

The only reason I started Insulin was due to the steroids I was taking (not any more though) raising my blood sugar levels. I haven't taken any steroids for ages now. Absolutely ages. So my logic was that if I'm not taking what gave me diabetes, why am I injecting myself with Insulin every day? It doesn't make sense. 

Unless what I've been told is wrong, of course. My blood sugar readings are around the 5 mark, rarely lower or higher than that - it all feels very average now. 

ANYWAY the doctors is just as annoying as the hospital when it comes to messages about things. So far I've had one on my email, one on my text messages on my phone and I'm not sure where the next one will come from. They keep me on my toes, I guess.... 

Dates

Good lord, I'm still bad with dates. In all my calendars I had my next hospital appointment as a certain day, when actually, it's the day before. It was only because a nurse phoned me to ask me to go in earlier for a blood test which is to be discussed in the second appointment. 

I'm relieved the hospital now has an app I can cross-reference and I'm also glad that I get phone calls like this - I feel so disorganised. 

I have a spreadsheet with every single appointment that we all have so I keep on top of it, as well as duplicating that information in my Calendar. It (mostly) works, I print out the spreadsheet and keep it with me when I'm making other appointments.

Or I make appointments for school holidays and then realise I'll probably be at work. (it's okay, I have annual leave). 

Anyway, just logging dates are getting muddled again. I bet I've already done this and I've forgotten. 

Happy Birthday to Me.

Yesterday was my 53rd birthday. Who'd have thought that I'd have had a nice, fairly quiet one? 

My sister and nephews visited and brought presents - including a life-sized cardboard cutout of Buddy the Elf from the 'Elf' movie. Buddy has made husband jump several times, much to my amusement. 

I'm trying to think of places to hide Buddy to continue being amused. 

We decided that as yesterday was a rainy day we wouldn't go far, but would go somewhere. In the end Polesden Lacey won, we had a nice hot baked potato and a good wander around the grounds - plus they had their deckchairs out, always a good move. 

Sadly my birthday cake is too sweet for my tastebuds, but I'm determined to have some soon. 

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. 

Burpday

"Happy Birthday!" said the National Trust lady as she scanned my card.

I was impressed, I had never had this happen before.

"Is it in your systems?" I asked

"No, you're wearing a badge...."

Oops. I forgot. 

I Remember!

It's really not that exciting, but I remembered one thing.

So since my hands have gone super-dry and cracked, security on my mobile phone no longer works as it doesn't recognise my fingerprint any more. It will again one day, but right now - no chance.

So I'm resorting to pin's. Remembering passcodes. All those sort of things. For someone whose brain is healing it's quite an achievement, so far I've been able to get into everything. My fingers are looking better too so I'm hoping this weird part of it all will sort itself out. 

So yes, if you use your fingerprint for security, maybe set up facial recognition too. You'll thank me for it. I didn't do it and it keeps rejecting me. Sigh! 

My Memory is Bad

So every day around this time I potter around on the laptop, looking up things I need to. Then something happens - and I think "oh, ho ho ho this will be funny to blog!" and go into Blogger. 

Then I open a new page to post something, and whatever it was I was going to post is gone. I retrace my digital steps in case it reminds me, but no - nothing. 

It's irritating. I mean, whatever it is I've forgotten isn't going to change the world. Every time it comes back into my head I'm somewhere like the shower so know I won't remember it by the time I'm on the computer and I can't just write it down.  

So I'm posting to try to think of ways to actually remember whatever it was that came into my head - or in fact I should say, comes into my head repeatedly. 

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. 

"What do you need?"

Disclaimer - I am not picking out any individuals - just writing what has happened. Please don't take offence. 

Back in the radiotherapy days I had a brilliant rota between friends and husband to get to the hospital now I can no longer drive. It was great, we'd chat, catch up, grab a cuppa afterwards and chat more. Then the treatment stopped - and with that the rota was over. I'd have friends occasionally checking in, but more often than not there was silence. Now, I know I could get in touch with people so I'm also at fault here - though the sheer amount of appointments and getting things into the diary (which I spectacularly fail at).

Since early January I haven't had as active a social life. But I think we both know that - there's just one thing I wish happened when I meet people, family, whoever. I wish someone would ask 

What do you need?

Because I'm not sure what I need, but I'm never asked to form those thoughts. When we go out for the day teen hands me my walking stick, the car is unlocked by husband, things are done. So I might have a train of thought of things I need to take out with me, but the more things done by others, the more likely I am to forget them. 

Almost every time we go out I've forgotten a hat and - to be fair - I'm getting really bad at forgetting my stick. Which is why I don't want anyone to take offence. 

So yeah, I'll get back to you with something I need. There will be something, I'm sure. 

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.

Dry hands

Chemo side effect? Look at my wedding ring finger. Fortunately some skin has peeled away so the skin feels less tight. 

Hair

I haven't shaved my underarm area for two months or more. A chemo side effect.

So I thought I'd shave my legs for the first time in a year as it'd be better for cream, plus the hair won't grow back.

Except it has. More fool me. 

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. 

Chemo minus one

It's funny how when you stop taking the tablets, certain side effects disappear. 

So for example, I'm itchy, but not as much. My skin is flaky everywhere. Even my eyes and mouth. 

My retching around food is calming which pleases the teen as being sick is one of her phobias. 

Chemo day five

Aaaand that's the second lot done. 

My skin has alternated from burning hot, pale with a rash or the always familiar electric shock feeling. 

Today we went to Emmett's Gardens however the queue to get in was huge. It's not the biggest of places, however, Chartwell is. So we went there instead where we got a parking spot straight away and my food aversion led to me being able to eat a quarter of a flapjack. 

My eyes and mouth have lots of dry flaky skin for the first time. I took moisturiser with me which mostly helped  I felt quite self conscious about it though, I wasn't able to do a lot of walking (hills) so I sat in the car while husband and teen did. All good. 

Overnight and the flakes have come back and made themselves heard. My only sense of calm is knowing they'll have gone by next week. Please.

Quite a lot of my skin is flaky right now. I don't mind when it's small areas but when it's almost all of my body I just feel defeated. 

I slept though. Oh yes, I slept. 

Chemo day four

The sickness/retching has moved up a gear. Husband has suggested I take a second anti sickness tablet to help. I can't eat any more, food makes me feel unwell. 

Last night I slept! I went to bed at 11.30 and woke at 02.25. It was slightly annoying as it felt like longer, but it was sleep! I then realised husband was asleep on the settee downstairs so switched off the landing light (when will I learn?). It took about an hour but I got back to sleep. Woke up at 8.30am and was told off for not staying in bed until 11am. Typical!

My skin seems to be hitting a flaky stage, only moisturiser fixes that.

chemo day three

Shivering, trembling. Very low grade all over body sort of thing. Husband and the teen both noticed it. I know I'm not cold, so the only other thing could be the chemo. 

Swollen eyes, yesterday's photo was taken today. 

Swollen feet too, ditto photo.

My memory is playing up again. Nothing significant though. 

Last night as I went to bed, I was sick with the smell from husband's steak. It's the first time I've reacted like this, I felt very weak stomached. So I need to avoid being around smelly food.

This has been backed up with husband cooking a garlic -heavy tea tonight and me immediately feeling like I was going to be sick. This is weird. 

chemo day two

A serious lack of sleep the night before has wiped my appetite, I feel sick looking at food. I will eat my breakfast though I'm not forcing myself. 

My hands look a bit swollen on the palms - only a tiny bit though but enough that I spotted it. 

My face is burning. I'm taking paracetamol as I've been told Ibuprofen is not allowed which is a pain as I think it'd work faster. I keep shivering and then feeling okay to keep going - it's really weird.

I have swollen eyes, and I'm taking photos. I'm not sure what to take to help the swelling go down. 

You can't really tell here, but I can usually open my eyes wider. 

Then there's my swollen feet - my skin is quite red too, but my phone hasn't really picked it up.

That's two new things this morning. 

Sleep wise I got a few more hours though it took a while to drop off - mainly because of my itchy skin. 

chemo day one

My face flushed the brightest of reds while I shivered and tried to feel normal. 

I went to bed a bit later than usual (we're talking 10/15 minutes) and popped to the toilet, where I had an overwhelming urge to vomit.

Which I sort of did but didn't. It was enough that I needed to get to bed (which is quite cool temperature wise). 

I took the same dose of chemo (220mg) and anti sickness meds. Let's see how we get on tonight.... 

In bed and I didn't get to sleep until 7am. I spent the entire night scratching my itches, particularly the palms of my hands. 

I had a late bath yesterday, where the veins in my legs stood out. This was pre chemo, so not sure what's going on there. 

Swollen eyes too. 

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.