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. 

Sore Tuesday

My GP doctor visited today, she's great. Lots of long cancer-esque conversations, no conclusions but lots of options.

Before that the Rapid Response team visited, fitting stair rails for me. So now I'm trying those and it doesn't feel quite so bad. 

I've even eaten. Just the best crisps, mind. Handpicked. Tubes!

My sleep cycles are difficult to understand so please don't try. Last night I fell asleep around 1am, my sleep ready to go. Then before I knew it, it was 5am and I was wide awake. 

Then I fell back asleep for a few more hours, probably waking around 11:00, when I was kindly brought breakfast in bed. Which was cold but I'm not complaining. 

Tomorrow my food will be warm!

🍞🥐🥨🫕🥣🍽️

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. 

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....

Chocolate

I can't stop eating chocolate. It's like a weird addiction, I see the biscuit, the biscuit has to be eaten by me. So it is and oh GOD it's so good. 

This was assisted by my friend bringing me biscuits yesterday and me stuffing my face full of chocolatey sugary badness. I'm sure my blood sugars went for a little party at this sugary smorgasbord of treats, though fortunately I wasn't due to test myself. 

ANYWAY. We are on the "let's mess with my medication" mode at the moment, with the purpose of no insulin or dexamethasone in the coming months unless something happens. Which we know is probably likely. 

I'm getting a lot of phone calls and I'm struggling to remember who is who and who I've had a conversation with at the moment. I have prescriptions to pick up, medicines to take and general confusion with it all which I'm sure will pass with time. But I also have my chocolate. 

There's Tiredness and There's Laziness

The teen helped at Brownie camp this weekend so husband and I had the house to ourselves from late on Friday. It was a bit weird, the quietness - though I was used to it with madam always taking herself off upstairs to do whatever it is she has planned (which is hopefully homework....)

It was like the old days - we could keep the tv volume up, we didn't need to close doors to keep it quiet for the teen and generally we had a different kind of freedom. This wasn't then helped by us both falling asleep in front of the tv though. 

I set aside a time to go and have a shower, but it wasn't to be. Strictly started and I wasn't going to miss Angela Rippon doing a routine to 'Do-Re-Mi' from The Sound of Music. Marvellous it was too. 

So I was left in a happy place in my pyjamas (and new Oodie) while feeling a bit lazy with it all. I was tired too, but this was definitely more on the lazy side. To make up for it I had an early shower today. I'm not sure if the gods of cleanliness will care though. 

Yesterday was also a year since I first went to A&E. That was a weird milestone to pass. 

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. 

Dietary

There I was sitting on my phone when my hospital app alerted me to a phone appointment which was starting in 30 minutes. It was new, I knew nothing about it. It wasn't a mystery though as it had been suggested the last time I was in the hospital.

They'd had someone cancel so it was my turn. We talked about my diet (improving) and what and when I ate (increasing), how much I drink (happy) and my blood sugars. 

From the time we talked about the appointment in hospital to now I'm like two different people. The one that tried to eat versus the one that can't stop eating. So we had a positive call with me being told to get in touch with them if anything changes. 

So that was nice as I feel like unless something happens maybe I've a month or so off all of this. 

(I know better than to assume this though)

They're happy with my management of all my eating anyway. I think they're probably impressed with the delicious Marmite toast my sis-in-law makes me every morning. She's GOOD! 

🍞

Side Splitting

So here I am, no longer updating daily like I was. Mainly as my repetition is quite obvious when I post things, but also there's nothing new to log.

I'm on my phone, so constructing the above paragraph has made me forget what I was going to post about. Irritating!

School holidays have started so the teen is at home through the day, apart from right now as she's watching the Barbie movie with her school friends - dressed up as Ken. 

I am currently administering injections daily to make me healthy which seem to be helping - I had an irritating dry cough which has shifted, they spotted some blood clots too so chemo is on hold until things are a bit more stable. They're bigger needles than my insulin ones, my stomach now covered in tiny bruises and a slight stinging feeling as my skin calms down. 

My overnight sleep pattern is good at the moment though I find myself waking at strange hours, I'm able to get back to sleep easily. 

Anyway, that's my Tuesday update. 

Memories....

So the world of weird has re/appeared these last two days.

In my head I'm staying indoors today because I'm due a delivery from Nespresso and Ocado are delivering our food too. 

The reality is that I did a Nespresso order a week ago and Ocado are delivering tomorrow. So now I'm trying to work out why I've set today aside and I can't remember for the life of me. 

Yesterday we went for Afternoon Tea at Langshott Manor which was nice and empty so we had space from other people. I was still stuffed after two sandwiches and two scones plus a mini lemon meringue tart, so brought the food home with me. Husband fared better only bringing home his mini carrot cake. 

I've come to the realisation that lots of food and how I behave afterwards could have a weird side-effect. I get really tired (blood sugars? Even though I'm not diabetic) and then I need a nap and usually have one. It's a new thing, I'm listening to my body and getting on with whatever I need to. 

I'm also wondering if rubbish sleep equals a rubbish memory. I'd take that over more cancer growth a billion times. 

Hunger Revisited

Seriously. This hunger is too much.

Husband reckons it's steroid related, I'm not so sure. Other than right now I need a giant bag of crisps and that's with husband outside starting the BBQ. Which we have lots of food for.

Which I need to eat now.

I'm not starving but I'm the hungriest I've been in a few weeks. 

It's becoming a bit of an obsession. 

Diabetes

I had my phone call with the diabetic doctor today. It was an interesting call - mainly as I got a lot of answers to questions I hadn't thought about properly up to now, or had only rambled on about here. 

In summary, I can lower my insulin further as I'm managing with the decrease fine. However, my doc wants me to do a blood sugar test an hour or two after food - which should say whether I'm diabetic or not. I couldn't work out why, and mentioned how my consultant had said I probably am diabetic now as I'm not reacting while I'm still taking insulin. It didn't make sense to me, so I asked the doc what she might have meant. 

So... the insulin I have is a slow one which releases the insulin over a 24 hour period. (I didn't know this but it makes sense) because it's a slow release injection there's very little chance of me ever having a hypo. If I was using the fast insulin then it's more likely, but I've only ever used it 2 or 3 times in the last almost seven months. 

Doc suggested that I do one test a day after food which will give me more of an idea if I'm diabetic or not - if it's over 7 I have diabetes. If it's under 7 then I don't.** So I did that after lunch today (a cheese toastie and a pack of healthy crisps), and my reading came in - 6.7! So that's great, and is making me feel positive. 

Anyway, we both decided* that my diabetes check should happen when the radiotherapy session finishes. 

* Okay, it was just the doc. 

** two days later, two under 7 results, it's looking promising....

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.... 

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. 

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..... )

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! 

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. 

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?