I'll Be Surprised If She Comes Back

The first rule of anything is don't do anything. You might find something you didn't want to read. Then you want to make sure everyone knows that's not the case.

"Well how on earth do they know that?" says one of my imaginary friends. They don't.

But when you find out that people are wondering when I'll be back you feel like you're kind of wanted in an unexpected way.

Which is nice too. 

Discharge

I re-read my discharge letter from the Royal Marsden. It's quite bleak. 

This happens a lot, I read something but then go back to it and I re-read as something completely different. 

Essentially I've been told any new side effects will be managed by the hospice, though I can still request appointments at The Marsden.

I also still get GP phone calls and prescriptions. 

But yes, the 'sorry we can't help you until you need help' letter feels a bit more "you're dumped" than I thought. 

Which I'm not, really, kind of. But I sort of am too. 

It's so confusing being me. I might also feel a teeny bit upset for the first time too. 

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. 

Baby Bruise Fingers

If I could get a good photograph of the tips of my fingers I would, but I don't think the lighting works in my favour. 

On almost all my fingers are tiny fading bruises from months of blood sugar testing, pricking the end of my finger and taking bloods to check everything is behaving. 

Then I get a text from my GP who wants to talk about cholesterol. OH Cholesterol. This has always been an issue, it goes back years - back to when I was previously diabetic. I think they just want to phone me rather than have an appointment, I can deal with that. "Did you know your cholesterol levels are higher than they should be?" "yes" "okay, good stuff, bye" would be the ideal outcome here, though I know it'll be "eat less chips - eat less pasta - portion sizes - graze" sort of conversations. Those foods are faves at the moment as they're easy to eat and I don't feel unwell eating them. 

While the small circular bruises disappear back into my skin, only to be reactivated when I choose that finger. The blood thinner tablets are definitely doing what they're meant to... 

The bonus of diabetes was my nurse checking my feet last week and instructing my husband he has to moisturise my legs and feet once a week. Something I don't think I'll forget quickly anyway....

Cold Nose

The end of my nose is cold. This isn't a new thing, it's one of those things I have forgotten to mention here.

Last night I insisted husband checked my nose temperature, and he agreed it was pretty cold.

This wouldn't be so weird were I not wearing my Quokka Oodie which is unbelievably toasty. I'm warm everywhere except my nose. Obviously now I'm looking at a gazillion side effects but nothing obvious is coming up. Maybe I'm just meant to have a cold nose. 

The side effect (which dates back to the craniotomy in October 2022) where my nose runs when I eat is still there. I think that's one I'm stuck with, alas. 

But it does make me wonder if the two things could be related in some way. 

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. 

Wheeeee

Let's keep this short. Straight after the operation I was a bit incontinent. Most of the time I'd get to the loo with time to spare. 

Anyway, over time it all sorted itself out which made me happy.

Cue now, ten months later and I swear I'm weeing more than I've ever drunk through the day. Last night I had to get up every couple of hours. I'm going to bring it up when I'm next in hospital anyway. 

Anyway, that's the state of my bladder. 

Side Effects Update (2), etc.

I'm pretty sure this isn't the second but guess what? I've forgotten the system I set up. Normal behaviour here, it has to be said. 

I don't have any new side effects I don't think. The problem is that I've forgotten them already. This happens a lot (see above). 

I'm sleeping fine, probably not as many hours as I'd like and I wake up in the middle of the night feeling confused but am able to get back to sleep. My skin is back to normal, hair appears to be starting to sprout again in some places which feels horribly normal. 

I have a really large bald patch at the back of my head from the radiotherapy, currently disguised by the long hair bit I kept because it seemed like a good idea at the time. 

I mean, it doesn't look great does it? But I'm fine with it. 

Plus it's no longer falling out.

My skin is still a bit dry but not as bad as it was when it was really bad. 

My stamina needs a bit of work. I've been so tired with the lack of food that now I'm eating normally again my legs are feeling a bit of a dead weight (like at the start of this treatment) so I'm a bit slower. 

That's that, anyway. 

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. 

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. 

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? 

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.... 

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. 

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. 

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....