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. 

Memories Fade...

Not a lot to report other than the usuals but I'm making a point of logging these now for hospital use. 

What day is it? What am I doing today?

My skin is dry.

I'm eating a bit more. I'm drinking plenty of water. I like fizzy no alcohol drinks. 

My regrown hair is looking longer at the front which is good, I've no idea about the back.

I'm tired. We had visitors this weekend which was lovely - lots of noise which I wasn't used to, though it led to a nice nap afterwards. 

That's that. 

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. 

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.  

Nails.

The latest side effect is ridges on my nails - see the photo. These weren't on my nails yesterday. Weirdness...

Fortunately my sister was around to take a nice macro picture of them. And a crumb. 

Itchiness Be Gone

I'm now at the stage where I don't have to put as much cream on the itchy areas (other than my feet) which is great.

I'm guessing it's as chemo and I are becoming further apart in time I'm regaining things which I lost. 

Like no more itchy, flaky skin! 

BUT

We have ants. Ants in the kitchen, though we think we've got rid of them - until today. Husband and teen are on a walk and I spotted an ant on our table in the living room. Then I spotted two more on the carpet. I can only think that there's a nest we haven't found yet. This is not good. Not good at all. 

Worst of all I have little itchy patches on my body and my brain is overplaying it, imagining I have ants crawling all over me. 

I think I should go back to bed. 

Ugh.

So we were back at the hospital today to discuss the results of my MRI from last week. Plus talking about chemo, the side effects and the next steps 

It's a weird meeting. My first notification from the hospital gave me a time tomorrow. Then I received an amended time for today. Then I received a phone call to amend my time today to a bit earlier. (which isn't a good idea as we're waiting for blood test results based on the blood test taken an hour beforehand) 

Then while we were waiting there was an announcement that appointments were running up to an hour and a half late anyway. 

Incredibly they found a vein quickly for my blood test which helped - unlike last week and the cannula. 

We did that part, and waited for the follow up meeting. It was the first time I've seen our Neuro nurse properly - she's worn a face mask up to now at appointments. 

We talked about the side effects. I need to be phoning/calling them if I get a rash, although it won't be due to this chemo as we've decided I should stop taking it. Now that sounds drastic and it is. My tumour is meant to respond well to that chemo, which overall it seems is working. But my side effects are too much. 

However, I have a new, very small, probable growth. Another tumour in a different part of my head. It's small, that much I do know. 

So we decided that I should have it treated with radiotherapy. At this point I said "oh brilliant! I love it there!!" (I really do) so now my consultant and nurse think I'm weird, as apparently nobody else has said that before. 

I asked my usual pointless questions which I got satisfactory answers for. I've been told to take photos of weird skin reactions (as I have my first dermatology appointment soon) - what are the chances that I'll be absolutely fine? High, I suspect.

When we got home we told the teen. She knows a lot and now knows a lot more. There were tears and hugs and all of us promising to communicate better. 

I still haven't cried. I'm still not sure why. 

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)

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. 

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.

Dry hands

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

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...