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.

I'll Be Surprised If She Comes Back

The first rule of anything is don't do anything. You might find something you didn't want to read. Then you want to make sure everyone knows that's not the case.

"Well how on earth do they know that?" says one of my imaginary friends. They don't.

But when you find out that people are wondering when I'll be back you feel like you're kind of wanted in an unexpected way.

Which is nice too. 

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. 

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....

Leaving the House

Here's an interesting one. Well, it's interesting to me. I completed my Radiotherapy sessions last week, and this ended my Monday to Friday trips to hospital. All of a sudden what was a routine became something in the past which I looked back on fondly. 

The Radiotherapy unit I was placed in were lovely. They'd always chat with me about anything and everything that wasn't what was going on with my brain. We'd chat about Matilda, things we've laughed at on YouTube, things we've watched on tv, music we like, Christmas decorations. Yeah, Christmas. That still feels weird, it was the least festive I've ever felt (understandably). But we did it, we got through six weeks of it. 

Then it stops. I left the hospital with Masky and everything went into limbo. The weather was rubbish, my white blood cells and platelet counts were low so we had a simple way of life - don't do anything until the levels improve as I really don't want to get ill - mainly as I won't be able to fight it as well as if I was full strength. Pumped full of drugs and injections to make me as 'normal' as I can be. 

We also worked out that as the antihistamines I'm taking (for the chemo rash/electric shocks) are drowsy ones this might be why I'm so sleepy. Now my blood sugars are improved and aren't too high I've had a coffee again so let's see what happens there. I mean, it's obvious when written down but we've had so much information about everything it just became another thing. Until it became an "oh YEAH" thing. Which was less than a week ago. 

So if I drink more coffee, arrange to meet friends for coffee, don't push myself too much but keep on moving, get out of the house and to a coffee shop (levels of things permitting of course), then hopefully my stamina will return slowly but surely. Plus I'm getting out of the house so it's good for my overall mood. 

Coffee seems to be a theme here....

Forgetful Focus

Maybe it's because I'm well into the flow of hospital appointments and amazing friends (and family) taking me there, so I have other things to focus on. I'm getting a bit forgetful again. Nothing alarming or anything - just a general brain fog sort of thing. I'm not concerned. 

So, for example I think "oh this would make a useful blog post" - I get the laptop, I open Blogger and I start a new post. 

But that took too long - I've already forgotten what I was going to post about. It'll come back I'm sure. Probably while I'm mid way being zapped by the radiotherapy machine.

OH! I've remembered! 

I've been having low-grade CT scans this week. The monitor in the room has kept the scans of my head visible, so I've been going over at the end and admiring it. I'm no expert here, but you can see that the treatment is helping and the tumour is smaller, though I don't know which image they're comparing it to (as if it's before the main operation then of course it'll be smaller). 

But it's a nice positive. I've also had a couple of friends tell me about people they know with the same tumour I have who are still around four years later, back at work and living a vaguely normal life. Now THAT is a good positive thing to focus on. 

Anyway, I then thought maybe nobody knows what a radiotherapy machine looks like, so here's one from the Marsden. 

Where Did it Start?

 Laptop time again so it's easier to type and keep up with my thoughts - though also difficult to keep up with my tangents. 

There has been a lot of time to reflect on all of this, I'm five or six weeks in (if my sense of time is keeping up) and I'm looking back at things in the past that could be more of a brain tumour thing than a general day to day one.

For example, back in July we went to Australia. There are chunks of the visit I don't remember. It's very strange - looking at photos I try to place where I was and what I did. I get there in the end but it's not immediate - it's like looking back on a holiday that happened ten years ago. 

When we were in Australia we went to Rottnest Island and hired bikes. My bike was the worst, and also a bit lopsided as I only hired one bike rack. Obviously I fell off, husband found me with the bike on top of me trying to get untangled, and while that could be put down to the bike rack, it was definitely something I found a bit more difficult than normal. I switched bicycles with husband right at the end and cycled fine, so I think it might be the mismatch of machine and me a bit as well though. Bike rack? The thing you carry things on the back with. Can't think of the name. 

The journey to and from Oz I didn't sleep. That's not like me - I get little naps here and there but instead played a game the whole time. I had no patience for a film despite wanting to watch  'Belfast' . Little things like that make me wonder how much the tumour was already squeezing what was in my head. 

The key things which led to action were things I was saying in the week leading up to being taken to A&E. Disagreeing with things I knew were completely wrong. Saying things that were just bizarre. The people around me were worried, concerned, asking if I was okay. Of course I was okay, it's just menopausal brain fog, right? But as we know, it wasn't. But I had my answer. That was until husband phoned the GP and they told him to get me to A&E.

I suspect a lot of this is repetition, I'll go over it again and again looking for answers. Where did it come from? How long has it been there? How long before it grows back? I don't have any answers and I doubt I will. But my spirits will be kept up and that helps. 

I have also accepted that for the forseeable future I'll be taking steroids to keep the brain tumour from swelling too much (I think that's why I take them). So because of that I will have diabetes, though it is managed well. So if I accept it, then I don't have pizza or chocolate for a while apart from in moderation (like, a slice if I'm lucky).

You've got to pick your battles, and I think when I'm ready for the next round I'll choose it wisely. I'd rather have low level battles than higher as they feel easier to pick and choose. 

Radiotherapy started today and was quite painless and quick. Suits me right now.

One

 Since the detection of the brain tumour I've noticed something weird with my head. There's always an uneven number of something and I need to find a single thing to make that uneven number even. 

That's probably the clumsiest way of explaining it - it is never anything that matters, always something that can be forgotten, often forgotten straight away other than I need one to keep things even. So my dreams are the quest for the single thing to make things okay again. If things are wonky then maybe it's a bad luck thing? I'm not about to try and find out, I know it's nonsense and something which has no meaning with anything, but it's a recurring dream which keeps coming back. 

The odd thing is I can never remember what the single thing is I need, but I get it. Then what? Dream forgotten, gone until the next time it comes back. Every-single-time. Every-single-night. 

I'd love to know what it means. It'll be mind games, the single thing being the path out of tumour land (which is unlikely to ever disappear until it takes me away) - and while I can find that single something in my dreams it's all okay, there's hope. Maybe. Hopefully. 

It is really odd though. I remember being in hospital at St Helier and trying to find the something I needed which took longer than usual. St George's? Yep, again, found it, a bit quicker this time as the ward was quieter and there was less other noise going on. 

So now at home it just comes every night. "Hello! You have uneven somethings and we need this single something to make it even then you can sleep again and not worry about things. Do hurry and find it, okay?"

I wish I knew what it all related to and why it's always needing just one. I'm not about to spend time figuring it out, I just wish it didn't happen every single night!

The Start

October 2022 and husband had enough. I wasn't listening, my menopausal brain fog was making me tired. 

He dialled 111 and the person he spoke to told him to take me straight to A&E. So the idea of a no fuss rest and recharge wasn't happening any more.

Things get hazy around now. I don't remember a lot about A&E other than I was there for a long time.

At some point I was sent off for a CT scan of my head, and it was confirmed that there was a brain tumour there. I'm fairly sure I stayed in hospital for the weekend, coming home on the Monday. 

However, my sense of time was non-existent. Evidence:

- I could easily spend two hours on the toilet without realising it had been that long.

- I'm easily distracted.

- My days are broken down into what is on TV that night and that day's Animal Crossing tasks. 

- I forget all of the above.

Moving onto a ward, I knew two other patients which was nice, however, both have dementia and kept me awake overnight. One was convinced she was about to be killed, the other was distressed and wailed all night. It wasn't great.

My memory of this is getting the brain tumour diagnosis while on the ward though my husband disagrees and says it was in A&E. 

Everything is hazy with bits of clarity. 

At some point I was discharged from St Helier with instructions to prepare for an operation at St George's in Tooting the following week. Things were moving very fast. Too fast possibly. I needed headspace but too many people needed me - and if I didn't start treatment then my life expectancy would be significantly lowered. 

(At this point we didn't know what stage it all was, this was later confirmed to be stage 4)