Stuff

I have a lot of posts in draft at the mo, this is the latest one.

My problem is that I can never remember what I was going to waffle on about.

Like now.

Irritating.

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. 

Monthly Donation

One thing I've noticed more than anything in this year I've been off work and life is that there appears to be a huge market for charities convincing you to give them money. 

For example, there are a lot of "we know you don't like funerals, so when your loved one dies they can organise it all so you can do something nice to remember them afterwards" which kind of makes sense.

Within this group of adverts there is one where a (quite clearly not) 50 year old lady is playing hide and seek with her granddaughter. "I'm 50 and a non-smoker" she tells the people down the phone. Now, I've been teaching myself to be kinder these last few... well, I'm not sure how long, but long enough. She is quite clearly not 50, more like at least another 10-15 years older. It isn't even dubbed so you can't blame that route either. For a parallel, I dislike this advert as much as the 'On the beach' one that was on every single ad break in the summer. 

Cars. Lots of "you won't lose your no claims with us" sort of ads. 

Then there are the next lot of adverts. Free wills with cancer charities. Possibly a bit close to home right now but something that needs looking into. Mainly as Shaun won't have a clue what to do with all my rubbish. Another thing is a Power of Attorney - having used ours with mum a lot I can see this is very important. 

Then, there are the animals that need help charities. Donkeys, horses, cats, dogs, rabbits,  oh just name them, they will be covered somewhere. I've noticed these charities encourage you to donate £5 - I'm assuming a month, but I don't actually know. All I know is the animals look like they need lots of love and I hope someone is able to do it. 

Finally, there are the children in poorer countries who can't afford doctors/hospital treatment, encouraging us to donate. I can't remember how much, just how sad the children seem. I'd donate money to most of these but right now we need every penny we can get. So instead I'll watch and wish. 

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. 

Wednesday Thoughts

Ha, see, if I call each post the actual day it's published, maybe that will help me. 

Though right now my biggest problem is that I think of something I want to post here, I log on, create a new post and oh, guess what? The time it took me to do that and stop thinking about what to post, the actual post has now left my brain. Gone. Forgotten. 

The last time I remembered the post was in the middle of the night, not the most practical time. 

It's more than a bit annoying - this is low level memory stuff which is being forgotten (thanks head). 

So the question is, if I wake up at 2am and remember, should I make myself post it? 

Oh, I think I might have remembered something. For the last couple of weeks I've been trying to find the husband's nasal hair trimmer. Yesterday I found it. My long nasal hairs have been trimmed! This has led to me having a runnier nose than usual (not sure why), but it has also led to my nose no longer being itchy. Thus, it's a huge great big R E S U L T as runny noses are a bit irritating. 

Anyway....

 "GASP! Will we get to use your Blue Badge?!" excitedly asked the teen. I told her it was unlikely as there were plenty of parking spaces and we weren't going to take very long. The disappointment.... 

My brain is jumping around trying to work out what day it is. Yesterday (Monday) my head thought it was Thursday - and I ended up quite disappointed it wasn't (Taskmaster, yay) - today it's confused and not bothering. Although on saying that, I'm due at the hospital this afternoon for an appointment we're confused as to what it's about. 

(extra sidenote, our nurse had no idea she had an appointment with me so she was elsewhere for a while as well)

Anyway, everything seems to be done that needs to be. I need to have two blood clot blood tests every year to check everything is working and I need to get (one of my many) prescriptions switched from the hospital to my GP. 

So now we move onto prep for next week's appointments....

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! 

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? 

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. 

Thing

You find out all sorts. The teen and the husband both told me things from last October that they had forgotten.

The teen, I've forgotten again. I'm saving this space for when it comes back to me.

The husband, today I found out that when I was first admitted to hospital I had a full body MRI scan. I was surprised but I guess it makes sense - they wanted to make sure that there were no other tumours anywhere else in my body. There wasn't. I have no recollection of this at all. 

The only thing I ever remember from MRIs is the noise of the machine, mainly as I'll make a little tune in my head with it to pass the time. Seems to work, anyway! 

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. 

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... 

Things

I'm not scared, I'm not upset. 

I'm not worried.

But I can tell you right now that some of the side effects I had at the start, pre operation feel like they might be coming back. 

The main one is the lack of time, date, day.... that I'm putting down to being at home a bit more than usual thanks to feeling so tired. I feel tired of course, because I'm not eating as much as I should. 

That'll be because being around the smell of food when it's really niffy (eg garlic, curry) makes my stomach turn and I start retching. The last time this happened it suddenly went and my appetite came back - so I'm hoping that will happen soon. If only to stop my stomach playing a little "grumbly symphony" when I can't tell if I'm hungry or not. 

We went out to Banstead for some lunch today. I kept my food as plain as possible without dairy to see if I could manage it all - I didn't (the bread slices were pretty thick though), and after I had eaten some food the smelly food and retching came back. So things seem to be shifting the right way but I'm not there yet. I've been referred to a dietician at the hospital anyway. 

So things are coming back, reoccurring, I'm speaking to the hospital about it and part of me wonders if this is another stage with this type of cancer and things are deteriorating? Do I want to know. I'm not sure.

The Pub, Revisited

We have company - husband's sister is staying with us for a while. This is a good thing as I'll have someone else to chat to through the day and I might be able to persuade her to accompany me to Croydon for some last minute presents. (it's Fathers Day next Sunday)

They've all gone off for a nice walk and I'm going to meet them at the pub getting the bus there. I've checked the menu and most things involve cheese - still. 

We have been threatened with a thunderstorm last night - it didn't happen. There's also the potential for one this afternoon, though no signs as yet. 

Husband's sister was in Vietnam before getting to London and picked us up some sweet treats - dark chocolate dipped satsuma pieces. They're delicious. Though by the time we started eating them we wondered why there were lots of small ants on the table. It looks like some Vietnamese small ants are having a little London break. 

So in some ways I'm kind of glad we're not eating at home (ants) as you won't find them down the pub. 

Yet in other ways I wish I was eating at home thanks to the amount of cheese I may well end up eating this afternoon. 

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? 

Tumour Part Deux

The thing I like the most about Radiotherapy is seeing the scans that they use, and today I had more things explained to me. 

So the tumour that is a new one is in the Cerebellum. That section controls balance, but the tumour is so small that it wouldn't affect anything right now - we've caught it very early. (the original tumour is in the frontal lobe)

I've had a few Radiotherapy sessions in this new batch and got to see my scans today - and it's in a different place to where I thought. The cerebellum is a bit lower - and yes, getting near the spinal cord.  This also helped me understand why I am only having two weeks rather than three - because it could damage that area. So I have to try and be positive because I don't know what else to be. It took until 3am before I got to sleep last night. 

You have so much whizzing around your head, so when it stops and you sleep and you process the day's happenings, it's difficult when the happenings aren't the greatest. 

"Pallative" though. Everything is Pallative. Not end of life pallative, just treating the tumours pallative. 

I'm not sad, just thoughtful. Dealing with my thoughts and getting things in order.