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. 

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... 

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.

I'm Falling

Today we went to Mayfield Lavender. Our local massive lavender field with three different types growing. The calming scent of the lavender would be good for me, I thought.

However, I didn't take into consideration that I'd spot a bee on some lavender and have to crouch to take a macro shot of it. Having got a few photos I went to stand up. Except... I couldn't.

It was like when I was taking steroids when my legs felt so heavy. When I struggled to climb the stairs in the evenings and had no energy.

I had to get help to stand. My sister was in front of me, sister in law behind and husband kept hold of all my stuff.

Honestly, I was taken back six months to the days when I had hair, just the one tumour and I had no idea what 2023 was going to bring. 

But the weird thing today was that I haven't had heavy legs since I stopped steroids a while ago. 

People

There's a new quirk starting to show itself. Apart from not knowing what day it is (Tuesday! Tuesday!) I also forget who is here. I'm able to stop myself in time, but I've come close to calling for people who aren't here.

For example, my sister - who is currently up North. The teen when she's at school. Workmates! Honestly, if you were to name someone I've probably got close to calling their name out.

Also, we've a new way of communicating here. If I've forgotten something from upstairs and the husband is still upstairs I'll call up to him. This now results in no response, with him coming downstairs. "What did you want?" He asks. I let him know that I was asking him to bring down my belt which (of course) I had forgotten to put on. 

So I end up doing it myself and forgetting what I was doing in the "now". But I've got my belt which is pretty important at the mo as I'm losing weight again. The world doesn't need to see my pants.

Repeat to fade.

Now, I was looking for a t-shirt and whether any exist with a certain phrase on it. Can I remember the phrase? Course not. I'm so good at the distraction technique I can do it to myself. Sigh.

Food, Glorious Food

I think my problem with food might be returning. I'm back to eating smaller portions which is kind of annoying - food doesn't excite me at the moment - I just eat because I have to. 

I remember the time I ate a whole pizza a month or two ago. We had pizza on Friday and I left half of it. It's little things like that where you wouldn't know if you weren't around me all the time. 

Yesterday I was starving - we went to a cafe but there was no food for the other two, so we gave up. In the end I bought a Waitrose Egg and Cress sandwich which took me forever to eat as I passed the weird hunger window. 

We had a burger for tea, I managed half of my veggie burger but had to leave it as I didn't have the energy to eat. Stuff like that, lots of little things. 

Then I had a rubbish night's sleep, getting to sleep sometime around 1am and waking at around 3.30am, 4.30am and 5.30am. But my brain read the time as a different time altogether.