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. 

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! 

Memories Fade...

Not a lot to report other than the usuals but I'm making a point of logging these now for hospital use. 

What day is it? What am I doing today?

My skin is dry.

I'm eating a bit more. I'm drinking plenty of water. I like fizzy no alcohol drinks. 

My regrown hair is looking longer at the front which is good, I've no idea about the back.

I'm tired. We had visitors this weekend which was lovely - lots of noise which I wasn't used to, though it led to a nice nap afterwards. 

That's that. 

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? 

Hospital Stuff

Went in for my April appointment today, where things are now different within the hospital. I had been given a bloods appointment but knew their systems well enough that it wouldn't be an actual appointment in my name. Probably. 

So instead husband got me a number ticket, and I queued to check in. Which went okay, other than we were waiting in the bloods area for about an hour and a half. Long. This meant the actual appointment I definitely had I was then running late for. Which I probably forgot to apologise for. Sorry. 

Waiting in the blood rooms isn't the most exciting of things. Fortunately we both had our phones charged. Unfortunately all the games I wanted to play wouldn't connect to the internet. Never mind. 

To add to the general chaos of it all, I didn't have an appointment on my records. The hospital app shows one, so my blood test nurse had to find a doctor or consultant to be able to make it visible so she could extract some blood. Incidentally, chatting with a mum who has had cancer, she has been told she can never donate blood again. So that's something I can't start, because I'm fairly certain they'll tell me the same. 

The appointment was added, the blood test taken, I headed to the area for my second appointment and got a "Oh thank god! We didn't know where you were!" sort of reaction (which was quite nice!). Got sorted there and we decided that I should stay on the same level of chemotherapy as last time because of the rash, lack of appetite, sleeplessness... I'm happy with that. 

While we were there my up to date platelet levels came in, and are looking better than they have for a while. They're not perfect but they're moving in the right direction. This new app the hospital is using gives you test results though all I got was glucose. It seemed high, but I'm not sure if that's because I'm still taking insulin every morning (which I don't think I need to).

Anyway, altogether we were in the hospital for a Very Long Time. My prescription is now ready to be picked up so I can restart my chemo today. It's all good. 

Yet again I have forgotten to do a blood sugar reading before eating. It's so annoying, though most of the time you have a rough idea what it would be. Bloody annoying though. 

Feeling Hot, Hot, Hot

This afternoon I got out of bed at 3pm.

I was feeling tired, probably down to this cough I have.

I was shaking and felt a bit weird.

Husband has said he's going to be taking my temperature. I just want to lie down and sleep.

If I was to go back to yesterday I was very shaky - so today's hiccup fits with all this. 

Anyway I don't think I have any more plans to go anywhere now. 

Forgetfulness

Okay, forgetfulness is well and truly back. My short term memory isn't great. Longer term is - though it's a bit weird. For example, husband asked what I'd like for lunch today - I said I quite fancied a croissant with cheese (as that feels quite a treat right now). 

At this point husband says I asked if we needed anything else and he said "bread" - though I don't remember asking it, but I do remember wanting to make sure we got some. So it probably happened, I'm just not sure. 

I would add as an additional "this might be why" as I've had this awful cold and am trying to stay away from everything - though I've hit the night 'cough-all-night-long' thing which is really irritating. I'm up several times in the night - mainly when the coughing won't stop. Being upright usually fixes it. 

I've actually got to the stage where I insisted husband sleeps downstairs so I don't disturb him in the night which might have worked. 

But my lack of sleep might explain why my head isn't retaining much at the moment. So do hurry up and recover, body. I mean, the last thing I want is to start chemo, but it's also exactly what should be going on. So let's get it underway with me feeling strong and ready to fight. 

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....

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!

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.