Head Clear

can I mention how confused I am again? Only Connect, Mastermind, University Challenge. All quizzy Monday programmes ON A THURSDAY.

Husband and teen are both full of cold so we're all avoiding each other. 

Which is sort of weird as we're used to lounging around in here having random conversations. I'm glad this doesn't happen all the time. 

Instead my head has 'Discoteque' by Le Roop on repeat, a song which came eighth in the finals, though apparently 'We Are the Winners' scored more (and yes, of course we know the words).

Fara Williams, Mary Earps and the teen.

ANYWAY today's update is that I have a wheelchair (not yet needed), I'm getting an emergency box (ditto) and a hospital bed will be on order too. I have also run out of steroids (not wise). 

I always have so much to witter on about, which is often forgotten as it takes me so long to get in here and I'm distracted. Must do better. I'll just say we're delighted Mary Earps won footballer of the year because she's not afraid to speak out - more people should do it.

The teen and Fran Kirby aaaaaages ago. 

I'm having a confidence crisis. Should I post my beige food pics? It helps me remember where I was from day to day, though the actual day might not be right. 

This is my Bill's meal. Oh it was SO good. Inside that big loaf is cheese, cheese and more cheese. 

Bill's fondue and halloumi fries, yum. Beige. Yum.

Hello

Should I do a little catch up on everything? Let's try....

I'm very tired. We know this, I keep going on about it. Lots of afternoon naps are being had, that sort of thing. Yesterday I lost track of everything. Had my tea and then laid down and had a nap, except I forgot I had my tea. So I woke up at some point past 9pm thinking I hadn't eaten since lunch, and I certainly felt it. 

It took husband to go through everything for me to realise I was completely wrong and had only been asleep for ten or twenty minutes tops. I was so tired I could barely sit up though. 

My sense of time has completely gone - I'm distracted by this being a side effect, but not beating myself up. Mainly as I remember this being an issue at the very start and it sorted itself out, so I'm hopeful this time too. 

My skin issues seem to have stopped which is good news. I never enjoy those. No dry skin anywhere either which is additional good news. No itchy scalp which is even better. 

Legs - feel very heavy. 

Stick - can't manage without it (I think)

Diabetes - I've stopped taking insulin. No major worries. 

Hair (back) - lots of thick, dark curly areas. Weird! 

Standing up is a challenge. I feel a bit giddy when I stand up and if I'm not beyond a certain shape I'll just collapse on the settee instead. 

No bruises on the end of my fingers! As I only need to do this once a week now which is great. Even though I haven't yet. 

Vomity

Phew. What a horrible night last night. 

I appear to have caught something. I'm unsure what but I managed to be very very sick last night, couldn't take any tablets and generally felt sorry for myself under the spare duvet in the front room.

At one point I needed the loo which was quite unsuccessful - I stood and fell on top of husband, unable to manoeuvre myself off him. If I hadn't felt so rubbish I'd have had the energy to laugh. Fast forward a couple of days and I've got a pair of quite spectacular bruises. 

Fortunately we worked it out. Fortunately.

I've no idea where this came from, other than every ten minutes or so I had to be sick. That was delightful. 

I did get a very good sleep last night and this morning. As in, I woke up about 10.30-11.00. I'm so very tired still.

We plod on, let's hope this is on its way out....

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. 

Hair

I've always been aware that hairloss would be something I'd experience. 2023 has been the year of the hairloss, most definitely. 

I lost a lot of hair at the front of my head, though it's long at the back. I am currently rocking a prog style cut but I'm hopeful it'll grow back quickly - mainly as I've already got 1cm regrowth in a lot of places. This is where I wish I had kept a log of when things happened rather than guessing (as I'm sure you're aware with my lack of days and time).

I shaved my underarm area over two months ago and it still hasn't grown back. My hair in the more sensitive area has thinned considerably - I can even see my c-section scar again. 

Eyebrows, I remember rubbing them a lot during phase 2 of my treatment (chemo and radiotherapy), they haven't grown back yet, although a few stubborn hairs are sticking around just in case. Eyelashes seem fine which is a relief. 

Generally my body hair seems to be growing (mostly) and none of it seems to be different. So no eighties perm style hair currently. I'm quite relieved.

I've been told the next radiotherapy is in such a small area that I won't lose any more hair too. 

Given I was told chemo would give me total hair loss (and it didn't) I'm going to tread (and brush) carefully...  but I think I'm due some good news, if only so it's one less thing to think about. 

Anyway, here's the hair. Lookin' good.... 

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)

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! 

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. 

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)

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..... )

Open Your Eyes, Look Up to the Skies and See....

So earlier on here I wrote "Health-wise I had a headache, a very low-grade one which was there all day. I mentioned it yesterday at the hospital and I've been put back on steroids to help. So of course, my sugars went up. So there'll probably be more things I have to put into my body to get my strength and be prepared for treatment starting - I have a couple of weeks so there's time. Oh, and the headache has gone now as well. Typical. I had gestational diabetes when pregnant with my daughter so I know I'm high risk when it comes to anything blood sugar related."

This was November 9th last year - I only finally came off the steroids in the last couple of weeks. No headaches are present currently, though let's wait and see what happens once the Chemo starts again later today. 

I think what I'm noticing more than anything; the hospital staff know what I need to be doing - they monitor me fairly closely to check I don't have a bad reaction - but I don't feel like I have any control. Which really I shouldn't be anyway as I'm not the medical professional.

Here's a good example. Husband picked up my chemo medicine this morning, as well as some anti-sickness drugs. I asked him what I had been prescribed - and he told me "Some chemotherapy and some anti sickness drugs" - which I had to point out is why I've got so confused with all this. Tell me the names of the drugs and let me have some knowledge or control over this. I'm not about to guzzle the lot, I'll just know which is which.

I recently only found out that Temazolomide is chemotherapy. Which I probably already knew, but had almost definitely forgotten. I can safely say I thought it was a steroid. So yes, I'm very confused. Still working on that one though. 

Rashly, Flakily

Oh. Interesting. I forgot my evening antihistamine last night - the only one I take these days.

This morning I had no flaky skin. No "hello, I am a rash" on my skin. 

Which is quite interesting.