Stuff

I have a lot of posts in draft at the mo, this is the latest one.

My problem is that I can never remember what I was going to waffle on about.

Like now.

Irritating.

Side Effects Update (4)

Ok, let's get on with it. 

Legs - like lead weights at times, difficult to walk upstairs. I manage but it's tiring. 

Skin - it's behaving at the moment.

Hair - no additional hairloss, lots of regrowth. 

Diabetes - being looked at and adjusted. 

Eyelashes - one side still has very curly eyelashes.

Sleep - I am sleeping. A lot. 

Appetite - very good at the moment, eating lots of food I probably shouldn't. 

Stick - The stick and I stick together. It helps. 

This post is following on from this one. 

Hungry Like the 53 Year Old Woman I Am

I vowed if I was near the laptop and hungry I'd blog, so here I am.

I'm SO hungry. I had my usual lunch, I've had a mid-afternoon biscuit because I was still so hungry. Yet I'm still hungry, needing food for my groaning, croaky stomach which is making sure I don't forget it needs feeding. It's a bit of a pain. 

My hunger needs are definitely on the side of "feed me NOW" (a la Little Shop of Horrors) - though I am able to not eat. Then I just think about food - which we don't have as much of as I've been eating. Plus - diabetes.

I'm also annoyed as the Eat Real multipack crisps I'd been buying no longer seem to be available at my online shopping place. I don't have the energy to check all the local supermarkets so am doing without or am just splitting a large bag into smaller portions. Not quite the same but btter than nothing I guess....

I have more than enough to eat at lunchtime, it's the steroids switching my appetite around again I think. 

Dietary

There I was sitting on my phone when my hospital app alerted me to a phone appointment which was starting in 30 minutes. It was new, I knew nothing about it. It wasn't a mystery though as it had been suggested the last time I was in the hospital.

They'd had someone cancel so it was my turn. We talked about my diet (improving) and what and when I ate (increasing), how much I drink (happy) and my blood sugars. 

From the time we talked about the appointment in hospital to now I'm like two different people. The one that tried to eat versus the one that can't stop eating. So we had a positive call with me being told to get in touch with them if anything changes. 

So that was nice as I feel like unless something happens maybe I've a month or so off all of this. 

(I know better than to assume this though)

They're happy with my management of all my eating anyway. I think they're probably impressed with the delicious Marmite toast my sis-in-law makes me every morning. She's GOOD! 

🍞

Side Splitting

So here I am, no longer updating daily like I was. Mainly as my repetition is quite obvious when I post things, but also there's nothing new to log.

I'm on my phone, so constructing the above paragraph has made me forget what I was going to post about. Irritating!

School holidays have started so the teen is at home through the day, apart from right now as she's watching the Barbie movie with her school friends - dressed up as Ken. 

I am currently administering injections daily to make me healthy which seem to be helping - I had an irritating dry cough which has shifted, they spotted some blood clots too so chemo is on hold until things are a bit more stable. They're bigger needles than my insulin ones, my stomach now covered in tiny bruises and a slight stinging feeling as my skin calms down. 

My overnight sleep pattern is good at the moment though I find myself waking at strange hours, I'm able to get back to sleep easily. 

Anyway, that's my Tuesday update. 

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. 

The Hunger

My hunger issues appear to be over. However, in place of this is the need to be eating all the time, ever.

Right now I want Pringles. It is a bad idea for me to have Pringles as I've just done my blood sugar test and it was high (we had a Greek lunch). But I need to eat. My tastebuds are dictating they need a slightly cheesy crispy thing and they need it now. 

So I have to pretend I'm not hungry and don't need this food more than anything else ever. I distract myself, classic distraction technique, watch some crappy tv to make me think of other things.

But still the taste of the Pringles is in my head. 

I am grateful I seem to be eating normally, but resentful of the Pringles cravings I'm having. At least they're on offer with the supermarket at the moment...

In summary, I'm a diabetic (insulin controlled) as I'm back on steroids and my diet needs to improve. As in, no Pringles. So I think I've done okay today denying this craving. 

Nausea and Dry Legs

Oh my word, did the nausea make an appearance. No sickness, just feeling nauseous. 

But it's affecting what I eat (again). So I guess that's a Radiotherapy side effect making a return there. 

So... I'm back on dexamethasone (sad times) at 4mg a day (that I just weaned off), and I'm taking more drugs which have very long names that I can't remember what they are.  Fortunately I now have a spreadsheet with a description saying what each tablet actually is. 

Flipping dexamethasone though. And all the others. 

I had my dermatology appointment today - and the doc was impressed I had so many photos of my side effects. I have dry legs apparently, so have been prescribed more creams which will help. So I'll be reporting back on that in a few days... 

I tell you what though, feeling nauseous and having the world's worst itchy legs is not a great combination. At all. 

Diabetes

I had my phone call with the diabetic doctor today. It was an interesting call - mainly as I got a lot of answers to questions I hadn't thought about properly up to now, or had only rambled on about here. 

In summary, I can lower my insulin further as I'm managing with the decrease fine. However, my doc wants me to do a blood sugar test an hour or two after food - which should say whether I'm diabetic or not. I couldn't work out why, and mentioned how my consultant had said I probably am diabetic now as I'm not reacting while I'm still taking insulin. It didn't make sense to me, so I asked the doc what she might have meant. 

So... the insulin I have is a slow one which releases the insulin over a 24 hour period. (I didn't know this but it makes sense) because it's a slow release injection there's very little chance of me ever having a hypo. If I was using the fast insulin then it's more likely, but I've only ever used it 2 or 3 times in the last almost seven months. 

Doc suggested that I do one test a day after food which will give me more of an idea if I'm diabetic or not - if it's over 7 I have diabetes. If it's under 7 then I don't.** So I did that after lunch today (a cheese toastie and a pack of healthy crisps), and my reading came in - 6.7! So that's great, and is making me feel positive. 

Anyway, we both decided* that my diabetes check should happen when the radiotherapy session finishes. 

* Okay, it was just the doc. 

** two days later, two under 7 results, it's looking promising....

Ugh.

So we were back at the hospital today to discuss the results of my MRI from last week. Plus talking about chemo, the side effects and the next steps 

It's a weird meeting. My first notification from the hospital gave me a time tomorrow. Then I received an amended time for today. Then I received a phone call to amend my time today to a bit earlier. (which isn't a good idea as we're waiting for blood test results based on the blood test taken an hour beforehand) 

Then while we were waiting there was an announcement that appointments were running up to an hour and a half late anyway. 

Incredibly they found a vein quickly for my blood test which helped - unlike last week and the cannula. 

We did that part, and waited for the follow up meeting. It was the first time I've seen our Neuro nurse properly - she's worn a face mask up to now at appointments. 

We talked about the side effects. I need to be phoning/calling them if I get a rash, although it won't be due to this chemo as we've decided I should stop taking it. Now that sounds drastic and it is. My tumour is meant to respond well to that chemo, which overall it seems is working. But my side effects are too much. 

However, I have a new, very small, probable growth. Another tumour in a different part of my head. It's small, that much I do know. 

So we decided that I should have it treated with radiotherapy. At this point I said "oh brilliant! I love it there!!" (I really do) so now my consultant and nurse think I'm weird, as apparently nobody else has said that before. 

I asked my usual pointless questions which I got satisfactory answers for. I've been told to take photos of weird skin reactions (as I have my first dermatology appointment soon) - what are the chances that I'll be absolutely fine? High, I suspect.

When we got home we told the teen. She knows a lot and now knows a lot more. There were tears and hugs and all of us promising to communicate better. 

I still haven't cried. I'm still not sure why. 

Farewell (I hope) Insulin....

Had a phone call with the Diabetic Doctor this morning to talk about lowering my Insulin I take every day. 

The only reason I started Insulin was due to the steroids I was taking (not any more though) raising my blood sugar levels. I haven't taken any steroids for ages now. Absolutely ages. So my logic was that if I'm not taking what gave me diabetes, why am I injecting myself with Insulin every day? It doesn't make sense. 

Unless what I've been told is wrong, of course. My blood sugar readings are around the 5 mark, rarely lower or higher than that - it all feels very average now. 

ANYWAY the doctors is just as annoying as the hospital when it comes to messages about things. So far I've had one on my email, one on my text messages on my phone and I'm not sure where the next one will come from. They keep me on my toes, I guess....