Dad

Let's now go back to when I was in a ward, possibly post-operation waiting for something. Maybe waiting for natural light? I don't know.

I was sectioned off from everyone, next to me was an older man. I didn't see him but I could hear him. His name was the same as my dad. 

He sounded like my dad.

He may well have had the same middle name as my dad.

But for obvious reasons, there was no way it was dad. But for those few hours I got comfort knowing someone who sounded like my father was next to me. 

It was a strange feeling. I couldn't get out of bed to look and see, I could only rely on what I could hear. 

It was also quite nice, in my head I had conversations with this person next to me, telling him about his granddaughter who he has never met and anything else which entered my head. 

Eventually I did see him. He didn't look like dad other than being male with white hair - which is probably okay. It might have been too weird otherwise. He was about the same age as dad would have been.

Did I experience some kind of hallucination? If so, then that feels like a pre-op thing. I really don't know. My sense of place and time were non-existent at this point, all the days merging into one big lump. 

Let's Time Travel

 Let's time travel; not too far back, but back to a period I've thought a lot about lately. Not for any great reason, it's just lodged itself in my head - much like the music from ads on tv I'm not paying attention to, but who have lodged their earworm status successfully. 

So... back when I was at St George's and I had the operation, I was initially on a ward where I had to stay in the dark thanks to the dye injected into my head (so they could get bad tumour out and keep good brain in place I think). I got moved to a new room suddenly, with no reason at all. Two porters turned up and said "Okay, let's get you to your new room" which was a bit of a surprise. 

I didn't actually have to do a lot as they wheeled me there but it was yet another occurrence where there was no pre-warning, it just happened. I got used to that, most things were absolutely fine things. 

My new room was me and one other person - and once I was settled we had a good chat. Eventually we found out we don't live far from each other and as things move to the present, we're meeting for a coffee this week, so being moved was a good thing. 

We had an idea of what happened when on the ward based on noise and smell. I could only smell potatoes for a very long time - we wondered if it was a side effect of the operation as I can't imagine people on wards eating potatoes for breakfast (though it does sound good). The noise was different though, beeps and nurses coming to you for various tests and monitoring. 

Every morning at 6am a nurse would come to me. "Time for your blood pressure" "time for blood sugars" and the rest. At first I was the nice polite patient, sat myself up and lots of please and thank you's because it was the right thing to do. THEN I realised it was way easier to stick my arm in the air and they can do what they need to, with me adding a sleepy thank you at the end, which they probably didn't hear. 

It wrecked any sleep patterns I was trying to have, although being in hospital does that a bit anyway. Noise through the night, lights I couldn't work out how to switch off.... alarms going off by patients (like me!) and giving up in the end and making do as my needs were very little ones. 

I should add, everyone at St George's was brilliant - I'm not in any way complaining about any of this. Everything came back as a quite focused memory this week - and how I dealt with it. This could have been one of the first times I was aware of times of day, even if I didn't know what day it was. The not knowing which day being a side effect of the operation and tumour which is slowly sorting itself out now we're further down the line. 

St George's had an interesting food selection - different menus too, and fortunately my roommate had one. So when the nurses came to take our food orders I was able to choose diabetes-friendly food - which was usually an omelette and handful of wedges - which was, quite frankly. heavenly. 

If I was to compare their selection to St Helier, then St Helier wins hands down. They even mark low GI options on their menus and healthy choices. The selection there was way easier to navigate. Although maybe my memory is failing me again and they're all the same? But anyway. I looked forward to my food every day, except the day my eyes swelled up so much (an operation thing) that I couldn't open them so a nurse had to feed me. Fortunately the swelling went down by mid-morning. 

So yes, my general memory of this time is being wrapped in a blanket and sheet, sticking my arm out of it for the nurses and trying to get some sleep but failing.I eventually caught up when I was discharged - I got so much sleep - more than I'm used to. Then the radiotherapy and chemo kicked in and I wake up at 7.30 and that's it. I still get enough sleep which is good - and I know things will get worse as the treatment goes, so I'm taking my moments while I get them!

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.

And so it begins.

 Well, tomorrow morning it does anyway. Those lasers are going to blast away the roots and buy me some time. We've had good news today that the roots should respond to the chemo which is good and helpful. See, when they do tests for all the various things, you don't get everything back straight away. Sometimes it takes weeks - like now. Finding out that things have a good chance of working is a good confidence boost when you're hitting that feeling that it's going to be a really tough slog. 

Which it is - that doesn't change - but it's a bit of good news, and I'll take every bit of good news I can get. 

Overall I feel positive, a bit nervous and ready to start. Support is in place, lots and lots of it from everything everywhere (it definitely feels that way anyway). I'm nervous but once I've done the process the once it'll be time to get into a routine which will be easy enough. I'm lucky in that the radiotherapy shouldn't take longer than 10-15 minutes though tomorrow will be a longer one with it being the first session. 

I guess I'm moving on from the patient who was half asleep stuck in hospital, raising my arm for blood pressure/blood tests/diabetes tests when the nurses came into the room, to the patient who can escape but still has stuff pumped into her to kill off the tumour as much as we can. I'm accepting of that and that makes everything a lot easier to deal with. I'm sure as side effects of the treatment kick in around half way I'll start feeling sorry for myself and will wish for healthier days.

I also found out a few things yesterday and alas, entered the world of Dr Google. Never a good move. 

There's a good chance with this treatment I could end up incontinent. Oh joy. Well we can deal with that can't we peri/menopausal women? Let's just hope it's not too horrid. It brings back pregnancy reminders but of course I'd get the signal to my brain that I needed to go, so we'll have to see what happens there. Keep everything crossed oh toilet gods wherever you may be, and please don't make it too much hassle. Please. 

I'm likely to lose my hair at the front. I can deal with that, and if somewhere further down the line I'm rocking a good Dave Hill from Slade hairdo I will do it in style. (or at least, try, might be too tired)

The fatigue is the one I think will get me. I enjoy being tired and sleeping because it makes up for the YEARS I've not been able to sleep properly. New parent? No sleep. Obvs. Teething baby? No sleep, obvs - although to be fair she was always really good and only had a bad night a week before a tooth cut through so I think we got lucky on that front. The colic, lesser so. 

The one that won't leave my head though, the boyband The Wanted. Their singer had a brain tumour. So I went to see what type it was - a glioblastoma. He had 18 months. He deteriorated quickly at the end not long after his tumour had started to shrink a bit. So in some ways it's a wake up call - I know that if things seem positive that doesn't lead to the same outcome. Everything I'm doing right now buys me more time. People can live for 10 years (a very low percentage, but it does happen). I just need to keep strong and have lots of support. 

I need to read more information. Knowledge is power. It's also too much information and I might become irritating. I'll really try not to. Pinky promise.

Sleep

I have always had tired eyes. Black shaded sunken eyes, in need of some sleep. Photos of me in a group, I'm wearing my tiredness well.

Since the operation I've had a lot of sleep - way more than I used to have. Where I'd average 6/7 hours if I was lucky, I'm easily making 8, and sometimes closer to 10 these days.

When I mentioned it to my consultant she seemed pleased, apparently people on these steroids (dexamethasone) can experience insomnia. Looks like I got lucky there! 

I know I wake in the night, not for long and usually just because I'm too warm. I'm fine with the summer duvet whereas husband needs a blanket which of course gets kicked off onto me :-)

I'm hoping all this sleep will improve my tired old eyes, they could do with it. Unfortunately the only photos I took of myself were in hospital so I look like I've been in a fight with very puffy eyes. Tsk. 

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!

also

Sometimes I'm quite lonely. Other times I crave chat. Sometimes I crave company but I have no energy to deal with it (which is annoying).

I crave a chat with my daughter who has taken herself off to bed for her quiet time. I miss her but know she needs that space. Plus I'm feeling a bit tired, which means having some time together will probably mean we sit in silence together, tucked under a rug keeping warm with nothing more to say than what she had for lunch at school that day.

Mostly I crave chat, can't keep up and get tired. That's a bit annoying and inconvenient though.

Sometimes...

... the day disappears. Daytime TV, This Morning, Steph's Packed Lunch, Countdown and the rest and suddenly it's 4pm, I'm still in my pyjamas and I've been horribly lazy. 

I set myself targets the day before, don't write them down and they're forgotten by the following morning. This means I should write them down and break the cycle until my brain processes things like it used to.

There has been a lot of things returning this week, I'm gaining the ability to taste and recognise flavours again which is nice - everything was so bland. I'm remembering some things which is useful. Another good thing is getting signals when I need the loo. At first things weren't great, but these days I'm doing pretty darn well which lifts that level of anxiety. 

One thing which is new to the "things I've lost" pile is the ability to match the lyrics to the song. I'm hopeful it will return, but it's weird not being able to do it. 

Something I'm thinking about - getting a blue badge for when we're out and about. I'm using a walking stick and get tired easily. So I'm thinking about it. However, there are several things that need doing first...

- phone DVLA as I can't drive for two years

- phone the insurance for the same reason

- I'm sure there are more but guess what? I've forgotten. 

Lots of accounts on Instagram are posting videos which I can't watch. They move too quickly, they have subtitles that appear word by word (if you're lucky) and the camera work changes so much it hurts. I've had issues with this since I came out of hospital so I guess this is one of the "hope it sorts itself soon" things. I mean, I was sat in the car, it was dark and I needed sunglasses on as I'm too nosey to close my eyes for half an hour. 

How do you get yourself out of the land of laziness? Write up a tomorrow plan and hope for the best, maybe? 

Computer v Phone v My Waffle

Up to now the posts I've done have been on my phone. Quite easy to do via the Blogger app and something that if I really wanted to speak up could be done fairly quickly.

However, this has meant I'm no longer using a computer. So to balance things this post is. I've also tweaked the blog theme as well. Stuff you can't do on your phone, or if you can I don't have the headspace to work it out. 

So, updates. So many phone calls. I have lost track and poor husband rushes around with his book of notes writing it all down so we don't forget. 

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. 

(I'm noticing I type more on the computer btw)

I have so many messages to reply to, so many emails to thank people, so many names to remember that it's really overwhelming at times. 

I'm also getting some lovely post from friends, with messages that really cheer me up. 

I'm also tired, more stuff for another post I'm sure!

Spoiler Klaxon

I like to think I'm pretty strong and can deal with a lot. However, Stand Up to Cancer and the current EastEnders brain cancer storyline (and it's glioblastoma) are both close enough to me that I haven't missed them but I'm aware.

Poor old husband leaves the room, I'm usually too tired. 

Teen and I end up watching the footage and feeling a bit down afterwards. 

 

I should probably stop for my own mental health - it's going to catch up with me at some point I'm sure. 

the swelling

So there are so many things you notice that change when you're in my situation.

I'd like to write about swollen areas - mainly on my face, on the side the operation was on 

My forehead has what feels like liquid under the skin that creates little lumps of liquid. It sounds weird to write those words - and I know over time they'll go away and I'll probably miss them. They're like puffy clouds of something mysterious which I can't stop touching. The hospital said that at some point they'll disappear "just like that" so I'm making the most of it.

I've also developed steroid acne which are many small, hard bumps on my chest. A good look there. I know this will go soon, I wish it would hurry though.

I'm being inundated with messages, not helped by me posting on FB when I can't work out what to do. I will stop at some point, so that should calm down.

I'm now having an energy crash. 

Thoughts

I have asked the hospital the obvious. This is going to kill me eventually. Fortunately we have time, all being well.

So I'm not dwelling on it, as I know the outcome, just not when it will be. I can live with that. 

But just in case, I'm blogging it all so I don't forget anything - as the previous post says, I'm very forgetful at the moment.

The sense of time and how wrong I've been getting it says I've healing to process and I must be kind to myself. Easily done.

But within these thoughts are all the practicalities. We bought a house, shared ownership four years ago. So our mortgage covers 30% of the house for the next 25 years. 

That's a bit annoying. So I'll stick around a while, thanks. 

The good news is they're basing my treatment on ten year old data, so there's every chance that things have changed. 

 

But it's really scary. 

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)