Discharge

I re-read my discharge letter from the Royal Marsden. It's quite bleak. 

This happens a lot, I read something but then go back to it and I re-read as something completely different. 

Essentially I've been told any new side effects will be managed by the hospice, though I can still request appointments at The Marsden.

I also still get GP phone calls and prescriptions. 

But yes, the 'sorry we can't help you until you need help' letter feels a bit more "you're dumped" than I thought. 

Which I'm not, really, kind of. But I sort of am too. 

It's so confusing being me. I might also feel a teeny bit upset for the first time too. 

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? 

Wheeeee

Let's keep this short. Straight after the operation I was a bit incontinent. Most of the time I'd get to the loo with time to spare. 

Anyway, over time it all sorted itself out which made me happy.

Cue now, ten months later and I swear I'm weeing more than I've ever drunk through the day. Last night I had to get up every couple of hours. I'm going to bring it up when I'm next in hospital anyway. 

Anyway, that's the state of my bladder. 

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. 

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. 

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! 

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. 

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. 

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..... )