Forgetfulness

Yeah yeah, the f-word again. Sorry. 

I'm forgetting a lot at the moment but am being told not to worry and just focus on my steroid reduction. Which I was anyway, I like a good project to keep on top of. 

Anyhow, we reduced my dose by 0.5 this morning, I used my last test strip (prescription central!!), and I need to get more. Now.

I still have the one head, I feel a bit unwell (like a 2/10) and am ready to plod on with whatever is required unless it involves long walks which I'm currently not able to do as it makes me feel tired. 

My week used to be organised by the daily puzzle on Animal Crossing however, I'm now forgetting to do the puzzle. Today is Monday but in my head it's Thursday. It's SO confusing. Those closest know, they make allowances too. We get through it. 

It's weird having excuses and reasons for the way you are and them being accepted without any questions. 

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. 

Cold Nose

The end of my nose is cold. This isn't a new thing, it's one of those things I have forgotten to mention here.

Last night I insisted husband checked my nose temperature, and he agreed it was pretty cold.

This wouldn't be so weird were I not wearing my Quokka Oodie which is unbelievably toasty. I'm warm everywhere except my nose. Obviously now I'm looking at a gazillion side effects but nothing obvious is coming up. Maybe I'm just meant to have a cold nose. 

The side effect (which dates back to the craniotomy in October 2022) where my nose runs when I eat is still there. I think that's one I'm stuck with, alas. 

But it does make me wonder if the two things could be related in some way. 

Side Effects Update (3)

Shall we?

Skin - generally okay, though I can see where new hairs are growing how it pushes a kind of small spot-like bit of skin out, giving me the appearance of an oddly dandruffed woman. MooGoo cream seems to fix that thankfully.

Hair - no flakes. I'm sure they'll be back, but I now have a scalp massager so I'm hopeful I can keep it away.  No hairloss either. 

Diabetes - I'm still sitting in that middle range blood sugar reading place where I'm not concerned if they're a bit higher, though I need to watch myself in case I eat something I shouldn't.

Eyelashes - oh they're beautifully curly in a way they have never been before, and don't seem to have straightened in any way. With the adverts on tv and the kids who are now blind because of an eye thing they've picked up I guess I probably should have minor alarm bells ringing.... in a 'just in case' way.

Leg muscles - they're getting heavier feeling again, a common steroids side effect. There isn't much I can do about it other than keep moving around. 

Sleep - I'm sleeping. However, I do wake up early every morning (sometimes even around 2am in need of the loo). The bonus with this is I get snuggles with the teen while her dad makes her some breakfast - assuming this is after 7.30am of course! 

Appetite - it's back at the moment, we'll see if it sticks around or whether I stop eating again.... 

Stick - I'm still using a stick when I am out walking, often I need it to help get me moving, other times it's there as a support. It's used every day anyway. I did go through a short phase of forgetting to take it out, but always remembered in time. 

Hungry Like the 53 Year Old Woman I Am

I vowed if I was near the laptop and hungry I'd blog, so here I am.

I'm SO hungry. I had my usual lunch, I've had a mid-afternoon biscuit because I was still so hungry. Yet I'm still hungry, needing food for my groaning, croaky stomach which is making sure I don't forget it needs feeding. It's a bit of a pain. 

My hunger needs are definitely on the side of "feed me NOW" (a la Little Shop of Horrors) - though I am able to not eat. Then I just think about food - which we don't have as much of as I've been eating. Plus - diabetes.

I'm also annoyed as the Eat Real multipack crisps I'd been buying no longer seem to be available at my online shopping place. I don't have the energy to check all the local supermarkets so am doing without or am just splitting a large bag into smaller portions. Not quite the same but btter than nothing I guess....

I have more than enough to eat at lunchtime, it's the steroids switching my appetite around again I think. 

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. 

Been Quiet.

I was back at the hospital this week. What was going to be a three appointment visit ended up being an epic six appointment one instead - including a two hour wait. We were there for a long time, a very long time. No lunch either - I didn't want to move away from where we were as our phone batteries were low - we're talking 5%. Whoops. 

So my tumours are stable. I'm not sure what that meant, but I'm not worrying about it as it seems like all is well. The consultant was apologetic as she thought I had been told. This is another good reason why being anxious about test results isn't a good thing - I'd have probably been very stressed had I realised the results were on my records a good couple of weeks before I was even told. 

There are concerns about my bloods, there's another level which isn't playing ball so I've been given injections which I'm phasing into the earlier part of the day so I can take around the time I take my insulin (I'm more likely to remember then). So I go back into the cycle of medicines and restarting the steroids and all the things I'm not a fan of. The most drastic thing that we found was my weightloss. The previous weight check was done in March 2023, and I've lost 12kg since then. If only losing weight was that easy! I'm not enjoying the lack of appetite though. It's improving again, I only left three slices of pizza last night although that might be the lack of lunch too....

So now I'm getting more appointments towards helping me get towards whatever my new 'normal' will be. Dietician appointments (I know what I can eat, it's what doesn't make me retch - although it is improving). Stuff like that. I will go to them because I'll gain something from them I'm sure - and to be honest, being at home for a lot of the day you really need to get out of the house. Not helped when the weather is rainy and windy like it is at the moment. 

I'm Falling

Today we went to Mayfield Lavender. Our local massive lavender field with three different types growing. The calming scent of the lavender would be good for me, I thought.

However, I didn't take into consideration that I'd spot a bee on some lavender and have to crouch to take a macro shot of it. Having got a few photos I went to stand up. Except... I couldn't.

It was like when I was taking steroids when my legs felt so heavy. When I struggled to climb the stairs in the evenings and had no energy.

I had to get help to stand. My sister was in front of me, sister in law behind and husband kept hold of all my stuff.

Honestly, I was taken back six months to the days when I had hair, just the one tumour and I had no idea what 2023 was going to bring. 

But the weird thing today was that I haven't had heavy legs since I stopped steroids a while ago. 

Steroids Revisited (2)

Well that's a turn up for the books - I can stop taking steroids without weaning.

I took 4mg which went down to 2mg, and only two weeks worth (says the nurse, I ran out of fingers to count). 

No weaning necessary as it was such a short time taking it.

So now I'm building up to not taking insulin any more as it seems a bit contradictory to be taking it if my sugars aren't being raised by the steroids? 

Steroids Revisited

This one is an odd one. When everything started and all manner of drugs were being prescribed to me, one of them was dexamethasone - a steroid. This was to help reduce the swelling around the tumour, and was one of the medications I successfully weaned myself from. 

But then chemo #2 started and for the first time I vomited - so I contacted my team who put me back on the dex at the high dose as well as a few others.

NOW. The thing is - the first time I took dex my legs became like lead weights. I could barely walk upstairs - every night was a real effort, though it helped me be tired. I weaned off the tablets and my legs went straight back to normal. Then I started taking the tablets again - but this time my legs are unaffected - there's no additional issues at all. 

(I find stuff like this quite interesting)

It feels like some weird lottery where I don't know what's going to happen other than something *probably will*.... 

(this also takes me back to the phone conversation about chemo where I was told 'no hair loss' 'some hair loss' and 'total hair loss' by different people on the team - and it was in fact 'no hair loss' which won, as radiotherapy was the hair removing treatment I had)

So I'm waiting wondering if my legs will start doing that again, hopeful it won't be the case as it should have happened by now.... 

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? 

Steroid Reduction Update

BTW, decreasing to 1.5mg last week was fine, so I've decreased to 1mg this week. No headaches in the last week, I'm hoping for the same this week. 

If I get a headache then the Steroids will have to be increased again. 

Chatting to my sister on the phone and I compared this to learning how to take proper photos on a proper camera and the triangle rule where the three main parts of the photo have to balance to get the right picture. So they have to balance my medication so I don't have a seizure/hypo/anything else that's possible with these chemicals. 

Let's Have a Dry Skin Update

Firstly, I'm not worried about it. I can see that dry skin is a common side effect when you stop chemotherapy and radiotherapy. 

Up to now I thought it could be something else (HELLO DR GOOGLE!) but now it feels more like a condition called 'Topical Steroid Withdrawal (TSW)' - which also doesn't feel like a fit as I'm still taking steroids, but feels like we're in the right sort of place.

Evidence!

 - the rash. This is part of TSW

 - my skin is flaky - a dandruff like sort of flaky. I collect dandruff-like skin parts in my clothes, amazed at how much my skin flakes actually create. To help counter it I'm putting on plenty of MooGoo Udder Cream which helps. ALSO - "Our Skin Milk Udder Cream is also used in Oncology hospitals and clinics across Australia as a moisturising cream for dry and damaged skin following radiation treatment and chemotherapy." So when the time came to check creams with the Oncology department this was approved quickly - and I had an order placed for the following day. 

So this is what we thought was probably a chemo rash (taken a few weeks ago), though could be an antibiotic rash - maybe it's TSW. However, now the rash has gone the skin where there was a rash is flaking, dandruff style. It's the skin healing and getting back to how it was, there's no indication how long it will take before it gets back to normal (which is normal). 

Now for the grim bit. My body is so good at collecting all the flaky skin that I can see it in the bathroom on our mats and on the floor, so can imagine it's just as bad in other places (under t-shirts, pants, trousers, etc). Nothing a wash/vacuum of the area won't fix, but I'd much rather not be doing that - it makes me tired anyway. 

A lot of this feels like guesswork, so that appeals to my 'must know everything' nature. 

Steroid Reduction

This morning I've had my first steroid reduction, down from 2mg to 1.5mg. This is going to be a long, slow, gradual reduction as if you do it too drastically you can end up having to increase your dose back to what it used to be. It's a week by week thing, which quite frankly if you're me, each week is flying by but now we're talking about reducing medication it feels like everything is a million years in the future. 

I'm twiddling my thumbs waiting to see if my head wants to have a headache or just get on with things - so far it's the latter. Keep it up, head. 

I've noticed over the last week my appetite has gone back to how it was before all this happened. On Saturday I ate so much more than usual I felt uncomfortably full - and that was the first time I had done that since last October. My appetite was fine, I just couldn't eat a lot at once - whereas this was a proper stuff your face I-NEED-FOOD sort of thing 

The only thing which makes sense is the chemotherapy and radiotherapy leaving my system - that's another one to look into. 

One thing I'm mentioning now, I'm becoming a bit forgetful again. Random words, chatting and stumbling over words. I think it's tiredness rather than anything more serious, but we all know what happened last time when I thought it was menopause rather than a bloody brain tumour.