Forgetfulness

Earlier today I mentioned to husband that we hadn't eaten the other half of the lemon tart we bought on Monday. 

"What do you mean?" he asked. 

So I patiently told him we bought a lemon tart in Waitrose on Monday. And that we still had half of it to eat.

"Your memory is getting bad again" he told me. Very simply. He's right. I had a good think and was able to visualise eating the other half of the lemon tart and remember eating it with husband and the teen.

So all is not lost, but this is the kind of thing I'm forgetting. More frequently than I used to. 

It's a bit weird. It isn't listed as a side effect of the chemo that I'm on. 

Daytime tv adverts

If I had ever forgotten about things such as making sure my life is organised or that I've given husband all the permissions he might need, daytime tv reminds me every fifteen minutes or so. 

If I'm not being asked to donate money from my wages (umm, my rental part on the house just went up by almost £100 this year, so no chance), I'm being encouraged to leave them some in my will. 

Oh and if I don't have a will then there's a list as long as your arm of places that will help. 

Don't think a will is going to help though when it comes to anything tricky that I can't answer for myself. We'll also need a power of attorney for both of us. Luckily there is a list as long as my other arm of people offering to do that for you too. 

The advert that REALLY gets me is the lady playing hide and seek with her granddaughter. "How old am I? Fifty!" she says, looking not a day over sixty five. Honestly, if they targeted these ads a little better they might actually get me to part with some cash. (while I still have some, see above note about the rental on this house).  I shouldn't judge people on appearances, but honestly, I look teenage alongside this lady - though that might be my hair (or lack of) helping there...

This is also the point where I point out the 'On the Beach' ad is still the most annoying on TV at the moment. 

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. 

Date and Day

It has started again. Today I was convinced it was Sunday. That the teen wasn't at school (she was) and we were going to do something fun 

Except it's Tuesday, the teen was at school and I have no idea why my head is doing this.

There's a couple of entirely reasonable explanations. One is the tumour is growing (all tests post-op would say otherwise), or I need to be on a low steroid dose. OR I need to lower the insulin I'm taking (hopefully this is the problem). 

Anyway, there's another one to mull over all night and not sleep very well. Tsk. 

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. 

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.

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..... )

Thin Hair

I thought it was the right time to add a photo showing how thin my hair is from the side these days. Whenever I brush my hair I get a generous helping of grey dried out hair on my brush as the hair on my scalp disappears.

Husband said he could see lots of dried skin in there too. I'm such a looker these days!! (we won't add my swollen red hands which really cap off the look)

I've got a broken brain

Today was the first weird day. I woke up at around 10am after having had another unsettled night of coughing.

"Where is mum?!" My head immediately alerted me. "What have we done? Where is she?!"

I panicked. Because all my head knew was that my mum wasn't there and I needed her here.

Then I remembered. Mum is safe. She has never been with us. It's all okay.

But right then my head was pretty convinced she was.

A new side effect to the chemo has resulted in my skin looking a bit red and swollen. It doesn't feel like last time but I'm keeping a close eye on things. 

I've got a Broken Face

Today's "uuurghhh" moment is my face swelling up.

Under my eyes - I think my days of using the MooGoo eczema cream may have to stop - underneath each eye is what looks like a roll of skin which is swollen. 

Fortunately I have plenty of creams I can use from the first chemo/radiotherapy sesssions so I'm not panicking in any way. 

Yet. 

I was on a lower dose of TMZ the last time which is why I'm not sure how I'll react this time. Keep everything crossed that nothing plays up! 

Feeling Hot, Hot, Hot

This afternoon I got out of bed at 3pm.

I was feeling tired, probably down to this cough I have.

I was shaking and felt a bit weird.

Husband has said he's going to be taking my temperature. I just want to lie down and sleep.

If I was to go back to yesterday I was very shaky - so today's hiccup fits with all this. 

Anyway I don't think I have any more plans to go anywhere now. 

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. 

Ring, Ring....

We all got a bit lost in translation yesterday. Fortunately it wasn't a pain for us (probably moreso for husband as he was working) - we gave up after hanging around the hospital for a further hour and headed home.

This was actually the sensible thing to do as the doctor who had told us we'd get a result in 30 minutes meant we had to phone and check in to see - but we weren't told that. 

Which is fine. I don't do 'being angry with other people' very well. 

Husband phoned the hospital but nobody was picking up (they have a new system that they're breaking in), and eventually I got a call from our Neuro contact who explained everything which made a lot more sense. 

So we decided to go ahead and start chemo today rather than yesterday - and that I'll take a tablet on Saturday to make up for it. 

So we're all set, it's all fine. 

I'm waiting, waiting, waiting, waiting....

Here I am after another Monday at the hospital. Today was a bit different to the usual - aside from the waiting involved.

We arrived at the hospital, checked in and grabbed my blood test forms, to then wait for two hours to be called to have my blood taken. By this time my veins were no longer playing ball, after three attempts we got there. It hurt though, it really hurt. 

Back in the waiting room and we sat and waited for me to be called for my blood pressure, weight, all the other stuff I can no longer remember as I'm SO TIRED. Which took forever. Another hour? It felt like it. Maybe not. As luck would have it, I bumped into Nikki who I shared a room with when I had the operation, so it was nice to catch up and see how she's doing. Chemo really does take it out of you, though it looks like she's doing okay overall. 

After that I sat and waited to be called to the Neuro Oncology appointment, and was called, ushered into a side room and then sat waiting for a WHOLE HOUR. Which wasn't doing my already tired head much good. 

Anyway, the good news is that my various levels are now at the level the hospital are happy with so I can start chemotherapy. 

Except I was told I'd get a phone call. Which three hours later still hasn''t happened (I'm kind of glad we left the hospital, it was making me tired). Fortunately we're close enough to the hospital we can pop there when we drop the teen at Guides. Except it closes at 5.30pm. Will I even get a phone call before then? 

Things and Stuff

So it is definitely something we need to do - get my life things sorted out. Hopefully we'll never need to use them or have access, but then again we might. Or maybe I'll need access to husband's because I'm going to live forever. Who knows. 

Today I was in a shop, it might have been WH Smiths, somewhere like that and they were selling wills you could do yourself. I forgot to check the price, they have power of attorney too. Things which we'd need to look at, quite possibly.

I've been keeping myself occupied filing all my books into spine colours. There's no reason for this other than it looks different. I have a pile of books upstairs with more downstairs too. 

I ordered a Thrift+ bag to get rid of old clothes that I won't wear any more which arrived today, ready to be stuffed full of nice clothes. 

Oh and child is adding an extra 5 minutes onto her start of the day by putting on makeup to cover her pimples. Proper teenager there - pleasingly she admitted it which is good. I mean, I knew what she was up to so I'm pleased she's told the truth!