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. 

The Memory Thing, Food and Not Sleeping Too Well (I guess) & AOB

The Memory Thing - my days are getting mixed up again. Why, just yesterday I asked the husband if I went to a cafe with the teen at half term. I couldn't remember at all. I think he may have been surprised I didn't remember too. Mainly as he pointed out to get to the cafe, I'd have had to drive. Oh yeah... I can't drive can I. He was there too. Whoops. There have been more of these happening of late.

Food - I am conscious that my eating has slowed down a lot. These days everyone has finished while I'm only half way through my food. I'm hoping the food aversion isn't coming back again because that was annoying. I finish most things, however am leaving food in the evenings as I get too full. But it feels like it's changing again.

Not Sleeping Too Well - this isn't new. I've always had problems sleeping. I'm even worse at the moment, getting by on a steady five or six hours every night. I miss the days when I'd wake up at 10am, it's more like 6 or 7 these days unless I can get back to sleep quickly. I've cut back my coffee to one a day and none in the afternoon to see if it helps too.

Any other business? Well, yes, actually. This is a new one that's got into my head more than it should. I saw a lady in her seventies (maybe) walking outside, enjoying the sunshine. I felt really sad inside - that might never be me. I want to be an old person enjoying the sunshine, except instead I'm having to limit my time in the sun thanks to burning quickly. For the first time since this whole treatment started I felt quite sad for myself. Not sad burst into tears sad, just sad that something I'd have taken for granted might not happen. But then again it could, such is the unpredictable nature of this annoying tumour. 

Electric Shock - footnote - it's gone. 

Dermatology appointment - I got cream, it's all good. 

THEN

I think I've worked out why I gained (or lost, bear with me, my memory is rubbish, remember?) a day a while back. 

I've clearly forgotten one reading, maybe two. It has happened more than once - but when I get around to filling it in it goes where there's a space, rather than where it should be - this is only if I'm doing twenty seven billion things at once. Actually, it probably takes me doing just two things to forget. 

But that seems the best explanation why a day disappeared or was gained. 

Memories....

So the world of weird has re/appeared these last two days.

In my head I'm staying indoors today because I'm due a delivery from Nespresso and Ocado are delivering our food too. 

The reality is that I did a Nespresso order a week ago and Ocado are delivering tomorrow. So now I'm trying to work out why I've set today aside and I can't remember for the life of me. 

Yesterday we went for Afternoon Tea at Langshott Manor which was nice and empty so we had space from other people. I was still stuffed after two sandwiches and two scones plus a mini lemon meringue tart, so brought the food home with me. Husband fared better only bringing home his mini carrot cake. 

I've come to the realisation that lots of food and how I behave afterwards could have a weird side-effect. I get really tired (blood sugars? Even though I'm not diabetic) and then I need a nap and usually have one. It's a new thing, I'm listening to my body and getting on with whatever I need to. 

I'm also wondering if rubbish sleep equals a rubbish memory. I'd take that over more cancer growth a billion times. 

Electric Shock Revisited (2) (maybe?)

So that electric shock feeling that I got on my body (which I'm still putting down to chemo) has come back. It's a 1/10 level, easily ignored, but it's definitely back. 

I'm now wondering if it's actually a radiotherapy side effect as those are the ones kicking in at the moment. 

Fortunately my skin hasn't dried up, developed a rash or cracked up. 

Hair Revisited (3)

The patch is getting bigger, though I'm not sure how much more could fall out.

Did I Mention?

Back when my skin was peeling, my ears had a split area where the skin had peeled away - the front and the back. It was like having a wound that refused to heal until I found a cream that helped it go away. 

So yes, I had bad ears this year. 

Baby Ants 🐜

Today I haven't seen a single baby ant so I'm confident that they've all gone.

This means I get baby ant sized itches on my legs to really torment myself.

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. 

Hair Revisited (2)

Of course I posted about my head of hair and the lack of hairloss, with it being swiftly followed by my hair falling out.

I had a nap this afternoon, I think just thirty minutes or so. The cushion my head rested on was covered in a fine, white pile of hairs. My first thought "are the neighbours cats coming in?!" then I realised it was my hair.

I sat outside and ran my hand over the area. I got a decent clump of hair, so I'm calling it that the radiotherapy side effects have decided to start. 

This time I got photos. The hair was taken outside, the patch inside. You get the idea, anyway. 

SIGH. 

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. 

Steroids Revisited (2)

Well that's a turn up for the books - I can stop taking steroids without weaning.

I took 4mg which went down to 2mg, and only two weeks worth (says the nurse, I ran out of fingers to count). 

No weaning necessary as it was such a short time taking it.

So now I'm building up to not taking insulin any more as it seems a bit contradictory to be taking it if my sugars aren't being raised by the steroids? 

Driving Revisited

I really miss jumping in the car and getting something from the shops that's that little bit too far to walk to.

That's all.

I really fancy a Feast ice cream and only the shops can satisfy my craving.

I wish I was allowed to drive. 

Steroids Revisited

This one is an odd one. When everything started and all manner of drugs were being prescribed to me, one of them was dexamethasone - a steroid. This was to help reduce the swelling around the tumour, and was one of the medications I successfully weaned myself from. 

But then chemo #2 started and for the first time I vomited - so I contacted my team who put me back on the dex at the high dose as well as a few others.

NOW. The thing is - the first time I took dex my legs became like lead weights. I could barely walk upstairs - every night was a real effort, though it helped me be tired. I weaned off the tablets and my legs went straight back to normal. Then I started taking the tablets again - but this time my legs are unaffected - there's no additional issues at all. 

(I find stuff like this quite interesting)

It feels like some weird lottery where I don't know what's going to happen other than something *probably will*.... 

(this also takes me back to the phone conversation about chemo where I was told 'no hair loss' 'some hair loss' and 'total hair loss' by different people on the team - and it was in fact 'no hair loss' which won, as radiotherapy was the hair removing treatment I had)

So I'm waiting wondering if my legs will start doing that again, hopeful it won't be the case as it should have happened by now.... 

Revisiting the old Runny Nose thing

This hasn't gone away. Every time I eat my nose runs. It started after the operation and was something I hoped would move on eventually, but no, it's quite happy sticking around. In most cases I can deal with it, however, there was one occasion which threw me - though was resolvable. 

Back at the start of the year we went for lunch at The Clink at the prison near the hospital. There's a strict list of things that you can't take in with you - from the obvious (phones) to the lesser obvious (tissues). After chatting with staff at the restaurant it was obvious why - you could smuggle in drugs on a tissue for an inmate who is working at the Clink. Whether you would or not is by the by - it could happen, so you don't get to take in tissues. 

However, all is not lost as The Clink has toilets next to the dining area, so you can get your loo roll which works just as fine, it just isn't as soft. 

The annoying thing about my nose is I can eat the mildest of foods and it happens, the spiciest of foods and it happens - so I'm resigned to this being something I'm stuck with unless my head decides to find a new pathway to fix runny noses. 

Hair Revisited

I have done hair-on-the-head updates but not elsewhere. So here's a brief elsewhere.

Underarms - this hair still hasn't grown back post chemo (we're talking December chemo here too). I am delighted as underarm shaving is a bit boring. 

Legs - hair fest. The mistake I made was shaving them which triggered the whole lot to grow even thicker. I can't be bothered to shave them again. 

Eyebrows - thin. Looking at makeup options to make them visible. Although I've never been great at them.

My head hair has over 1/2cm of regrowth now, it's fluffy and looks better than when it was shorter. No further head hairloss since radiotherapy #2 and the brief chemotherapy #2. 

Hearing Revisited

Have I mentioned my hearing? For the last god knows how many years (since maybe 2004?) I've had tinnitus. I get on with it all, it doesn't stop me from doing anything. 

But.

I am wondering whether the radiotherapy has affected what I can hear. It's possible. But maybe not. 

Earlier today we went to the cinema with the Brownies. I found some dialogue in the film difficult to follow - things I might have heard clearer in the past. Song lyrics too. They kind of blurred into something that made no sense.

(edited to add - when I went to the ENT dept back in the early 2000s I was diagnosed being only able to hear either vowels or consonants as each has a different frequency. I can't remember which way round it was though - but that's my hearing for you anyway).

It was weird. I've noticed that husband's voice seems quieter than usual, the teen too. But what if it's actually me with the problem and they're doing what they've always done? 

One to keep an eye on. 

Hunger Revisited

Seriously. This hunger is too much.

Husband reckons it's steroid related, I'm not so sure. Other than right now I need a giant bag of crisps and that's with husband outside starting the BBQ. Which we have lots of food for.

Which I need to eat now.

I'm not starving but I'm the hungriest I've been in a few weeks. 

It's becoming a bit of an obsession. 

Second Tumour Stuff

Last week I finished my second session of Radiotherapy. I kept it quiet, apart from a handful of people because I felt a bit like I had failed myself and I didn't need to tell everyone (this happens at times, okay?). 

Initially it was going to be three weeks, but the location of the new tumour (which is still quite small) was close to my spinal cord, so it was decided to make it two weeks and hope for the best. 

I asked my neuro nurse whether my upcoming MRI will show any improvement with the new tumour, and was told that it's unlikely we'll see anything as the imaging will be fuzzy. That's a new one on me, so another to add to the list of things to learn about. 

Neuro nurse said I'm doing extremely well with the treatment - especially as I've had no seizures which I swear they think I should have had by now, the amount of times I'm asked. I've had my nausea/food aversion period, and I feel like I might be going back into the dry skin phase now. Fortunately I have all the moisturisers ever because I'm a sucker for stuff like that. 

We chatted more, and there's a chance I might be on a different chemotherapy fairly soon. I think this is to zap tumour #1 (aka Greebo) and who knows what it'll do to tumour #2 (unnamed). 

I have two Radiotherapy masks now. Got to think of names for them. The only names that come to mind are Hinge & Bracket.