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. 

Baby Bruise Fingers

If I could get a good photograph of the tips of my fingers I would, but I don't think the lighting works in my favour. 

On almost all my fingers are tiny fading bruises from months of blood sugar testing, pricking the end of my finger and taking bloods to check everything is behaving. 

Then I get a text from my GP who wants to talk about cholesterol. OH Cholesterol. This has always been an issue, it goes back years - back to when I was previously diabetic. I think they just want to phone me rather than have an appointment, I can deal with that. "Did you know your cholesterol levels are higher than they should be?" "yes" "okay, good stuff, bye" would be the ideal outcome here, though I know it'll be "eat less chips - eat less pasta - portion sizes - graze" sort of conversations. Those foods are faves at the moment as they're easy to eat and I don't feel unwell eating them. 

While the small circular bruises disappear back into my skin, only to be reactivated when I choose that finger. The blood thinner tablets are definitely doing what they're meant to... 

The bonus of diabetes was my nurse checking my feet last week and instructing my husband he has to moisturise my legs and feet once a week. Something I don't think I'll forget quickly anyway....

Hello Monday

My head is so tired. There, I've said it. I think this is a hangover from our trip to York and everything that came with it - which was two weeks ago now. But maybe it isn't?

Maybe this is just how my head is meant to go? Every day I need a little lie down on the settee to reset my brain and have a nap. Sometimes the nap is five minutes, sometimes it's over an hour. 

I'm probably due a side effects post, the only new thing (which isn't that new, I just forgot) is the heavy feeling in my legs again, thanks steroids. Dragging myself upstairs every day isn't much fun - though there's very little you can do about it without medical guidance. 

As I'm being very strict about what I can and can't use based on what the GP/NO tell me things take longer to be a part of my daily life - if allowed. 

The main thing is I'm allowed PIZZA and this makes me very happy indeed. That's all. 

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. 

Sleep

I'm definitely feeling the tiredness a lot more at the moment. I'm not sure if it's the colder weather and me snuggling under blankets more, but every day I'm guaranteed at least a thirty minute nap.

At least.

The weirdest part is waking up. I'm no longer remembering when I fell asleep so I'm trying to work it out based on whether it's light or dark outside. This afternoon was fairly easy, last night was confusing. The good news is that it isn't stopping me from sleeping at night although I could do better.

Having my tiredness be dictated by my head is something I wasn't expecting, mind. 

Argggghhhh

I think it may have finally happened. I am getting so many appointment letters, so many alerts on the app, so many texts asking me to book appointments that I no longer know what I'm doing any more. I have appointments I didn't know about and ones which I thought I had logged which no longer exist. 

Fortunately I have a neuro phone call tomorrow so I'm going to go over what I have to make sure I've not missed anything - or logged anything twice. 

The upside of all this is the appointments are in the new cancer centre, Sutton Oak Cancer Centre which is nice and spacious and bright - and it seems quite efficient in there too. 

Anyway, it took nearly a year, but here I am, confused. Ready to work it all out! 

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. 

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! 

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. 

Pills, Thrills and Bellyaches

Yesterday I had my fortnightly call with the neuro team to see where we are with my various pills and things I need to take. 

As I'm managing so well it has been decided I can stop taking the steroids (just like that, which I find weird as last time I had to taper my dose) and we'll see where we stand as we head into September and the next MRI and follow up. How is it almost September? 

I feel a bit weird about it all - I don't know exactly what each medicine does so there's a lot of trust in those who know, I also can't help feeling like I could be some weird experiment. A lot of this stems from not having an active network of any other brain cancer friends so you're comparing with anonymous people on the internet. Not ideal.... 

When we hit September we also get close to the year anniversary of all this happening. Now that is WEIRD. 

You Sound A Bit Rude

Ugh. I have been reliably informed by my nearest and dearest that I can sound "a bit rude".

So : context. I have had tinnitus since around 2003 or 2004 (I don't remember). Since the brain op the ringing has been louder from time to time.

My nearest and dearest speaks very softly, so much that sometimes I can't make out a word he says. Sometimes I respond with a "pardon?!" and today I copied what it sounded like he said, which unfortunately was seen as being rude. 

The ringing right now is loud, not horribly so but enough it's not as easy to ignore. But now I'm conscious that how I respond could be seen as rude. Add to that the teen is in a funny old way about something. 

All I want to do is curl up in the quiet under a blanket and get some much needed headspace.

Also, there's absolutely no way that Eddystone Lighthouse is eleven miles away. 

Things I Can No Longer Do

Oh sadness. Went to the beach today, I managed just over an hour of lying in a tent before I realised I had to get back to the car which where it was a bit more shady. The heat was too much, my arms came out in a rash (which has now gone) so I did the right thing.

This is interesting as it's the first time I've stayed out in the sun without having shade handy. 

The hill back to the car was SO steep. I had to stop several times to catch my breath. 

Smile.

This is something I've noticed more of late. My smile is a bit strange at times. Not noticeably so, but enough that if you know, you spot it straight away.

With everything that's going on at the moment I've found myself taking a lot of selfies. Hairloss, skin rashes, all of that. Amongst most of these pictures is my terrible smile. I think I look pleasant but then I see the picture - and the weird formation my mouth is shaped into.

By the way, don't get me wrong, it could have been a billion times worse if we didn't have phones and had to post off films to be developed like in the old days. At least if the photo is bad I can do a quick retake although most of the time I am too tired or can't be bothered. 

But yes, my smile. It needs work. It's up there with my mum in the eighties when she would start a conversation while having her photo taken, leaving us with a permanent reminder of an odd expression. (I do like them though!)

Anyway, I'm working on my smile. I may be some time. 

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. 

Then the scary stuff is popped into your head...

I'm back at the hospital next week, and they want to check out my cough. It might be nothing or it might be something. The most extreme something is a blood clot. 

Given I'm going to be having a chest x-ray I'm now making sure I'm looking after myself. Especially when someone posted on a cancer FB group about their parent dying because of their blood clot which was recently detected.

So yes, getting checked out for that. 

So let's hope for a nothing result... 

Meh

I have moments, moments where it all comes back and the enormity of all this rests itself on my shoulders. Just reminding me that it hasn't gone anywhere even if I pretend it has. If you're in denial or refusing to accept what you're told are you pretending, or is it self-preservation?

This is mainly from having being told different things about the same thing from different health professionals. Everyone knows what they know, but it isn't necessarily the same thing. So who to believe? 

Ultimately, I take all the opinions. They don't know. They only know how they're answering to me - and everyone is different. So I can ask to get some guidance but I shouldn't take it as being how it actually is, as it may well not be.

However, they do know how these types of tumours work. Some people get a short time, some people get a long time. We have no idea what happens next other than I've got to look after myself.

Yesterday I received a card from an old friend and neighbour. She heard about my health issues and was really sympathetic. Weirdly, this feels like the first time someone has addressed it directly other than health professionals. I know that's not the case - I've had many conversations with my sister and husband about it all, going over and over certain things - but never with a "why me?" angle - just a "this sucks" and a ton of positivity. 

How do I stay positive? Probably the self-preservation/denial. Probably. 

A Long Weekend

I like how when we get an extra day off, a bank holiday it's classed as a long weekend. It also means I have no radiotherapy on Monday because of this - so all back to normal on Tuesday. 

That extra day makes all the difference. 

I can tell I've got a dry cough, not sure if it's hayfever or an actual cold but as I'm so close to the end of this phase of treatment I'm hopeful things will be fine, especially with the extra day. Oh and a nice sunny weekend and a child-free weekend too as she's going off on her practice trek for Duke of Edinburgh Bronze. 

So it feels like it could be a nice time to just slow down, eat well and relax. 

(and miss my child)

Side-effect wise, everything feels normal again other than not being able to sleep properly. My legs are a little bit dry, remedied with some moisturising cream I've been prescribed, and a drowsy antihistamine. I get there in the end, though last night slept from around 11pm until 6.30am which was the old sleep patterns I had back in the pre-brain-injury days. I'm sure tonight it'll get wonky again. I'm sure. 

So this phase of treatment will end soon, then more MRI scans to see if it did any good. Then we'll know more. My sister asked if all the waiting was frustrating, but I don't think about it. I don't think it would be helpful - we get the info when we get it (so to speak). They moved me forward with this Radiotherapy as there was a space and accommodated what needed doing. 

So yeah, who knows what happens next? 

Nausea and Dry Legs

Oh my word, did the nausea make an appearance. No sickness, just feeling nauseous. 

But it's affecting what I eat (again). So I guess that's a Radiotherapy side effect making a return there. 

So... I'm back on dexamethasone (sad times) at 4mg a day (that I just weaned off), and I'm taking more drugs which have very long names that I can't remember what they are.  Fortunately I now have a spreadsheet with a description saying what each tablet actually is. 

Flipping dexamethasone though. And all the others. 

I had my dermatology appointment today - and the doc was impressed I had so many photos of my side effects. I have dry legs apparently, so have been prescribed more creams which will help. So I'll be reporting back on that in a few days... 

I tell you what though, feeling nauseous and having the world's worst itchy legs is not a great combination. At all. 

Michael J Fox

There's a great* article about Michael J Fox in The Guardian. He talks about his Parkinsons diagnosis and how he won't live to 80. This part stuck with me though, it applies to anyone who is feeling the way I am currently, and I'm sure millions of others. 

He added: “I recognise how hard this is for people and recognise how hard it is for me but I have a certain set of skills that allow me to deal with this stuff and I realise, with gratitude, optimism is sustainable. If you can find something to be grateful for then you find something to look forward to and you carry on.”

It's so true. The hospital tell me that every time. I can do doom and gloom as well as the next person, but when it comes to me and my own way of dealing with things, this sums it up. 

* I realise talking about something which is eventually going to kill you or contribute to it is not a good thing, but I think it's really good to talk about it. Awareness is so important.