Chemotherapy

I hate it. The tablets I can touch and only need to wash my hands afterwards. Whereas if husband does he has to wear gloves.

Their side effects are kicking in big time now, the tiredness. Oh the tiredness. I've napped several times today, we watched 'Andor' and I missed most of it. 

So yeah, just logging my chemotherapy tablet hatred. 

Chocolate

Oh yes, and cappuccino, if it was you elevating my blood sugar levels and things go back to normal again I am SO looking forward to eating (in moderation) all the Lindt Chocolate advent calendar pieces which I haven't touched since this all started.

So Very Much.

Lightbulb

Earlier today we had a lightbulb moment, as you do. 

There are side effects and symptoms to be expected which have arrived and seem to be having a merry time on their Christmas party on my body. I'm covered in a rash over most of my body which spread to my neck today - though this isn't about the rash. Plus I've just got two gigantic prescription bags of self-care bits which will hopefully help calm things down - as it's still not itchy, just blobby. 

Alongside the rash I've been having raised blood sugars. Significant ones, where I'm wondering what on earth I've done wrong, and feeling like I haven't changed anything like washing powder or eating new foods. 

(to add to this, it took me several hours to remember the time I had a bad meal deal* in the hospital canteen then was told to go for a blood test afterwards which I had no idea was going to happen)

Anyway, I think this took us around a week to realise - I have started drinking coffee again, to be more precise, flavoured cappuccinos. I only had to look up "cappuccino diabetes" to get the first page of horror stories, full of sugar, avoid! (Guess who had two cups this morning before another unexpected blood test)

So I'm cutting out caffeine again, it's easy enough for me to do, and I'm really hoping it will make a difference. I didn't even think about caffeine as a cuppa was just part of the day anyway - but it makes sense as it's the only thing I've introduced over the last week or so.

So yes, cappucino and diabetes, not always the best combination. Maybe.

*white bread, cheese, seabrook crisps. All the foods I love. I was wobbly and panicking carrying a tray and my stick and needing to sit down, and I also got very impatient. I made bad choices.

I'll Never Learn

So I did the post about all my side effects and even more have kicked in this week. Sigh! So let's log them onto the list...

This is a weird one. I know it relates to oddness in my body - and I know how to fix it. Cold feet. Weird cold feet. It always happens in the evening and the only way to fix it is having a hot water bottle in bed - then by the morning I feel fine. Except today a new side effect kicked in - chemo rash. The nurse I chatted to on the phone suggested that if the rash doesn't go away that chemo would have to be stopped. I don't know where that leaves things going forwards, or if there's a different chemo for this tumour that I'd be switched to, but it's an annoyance. I've been told I can use aloe vera and take antihistamines to help the rash go away which is good news. Keep everything crossed it works.... 

Fatigue, tiredness. Today it has wiped me out a bit. I had an afternoon nap because I could tell my body needed it - I haven't felt like that since after the operation. It might be because I had an odd night's sleep, but going on how things are right now I think it's probably just the fatigue deciding to kick in because why not, eh? Might as well tire me out as well as all the other stuff! 

Bruising. Oh you trickster you, my body. I have a lovely black bruise on my arm from a week and a half ago which is starting to fade. Yesterday's blood test doesn't look so bad. I have blood tests once a week to check my sugars because diabetes is a pain in the bum and you're forever being monitored. When I rule the world I'll find a treatment for this which doesn't involve blood sugar inducing steroids so that everyone can eat pizza and be happy. However, the chances of me ruling the world are pretty slim. 

The plus side of all this is that I'm not having kidney problems or anything like that. But oh, it will be a PAIN if I'm taken off chemotherapy. A big pain. Does that mean I'd have to start the cycle again? I really don't know. 

Side Effects

 I've been meaning to do a post about this. Do feel free to skip by as it's more for my records than anything else. 

The side effects I've had since my glioblastoma stage 4 tumour diagnosis....

• Fatigue, tiredness. At first this came in straight away, though I think that's probably because I only wanted to stay in bed and process everything - and get ready for the operation. I remember staying in bed until early afternoon and sleeping or napping for most of the morning. I'd like to think that the pressure in my head with the bad stuff made that happen. After the operation I also slept quite a lot, but I'm putting that down to post operation recovery. Once I started Chemotherapy and Radiotherapy I started waking up much earlier in the day and the overall tiredness went away. I can see how it comes back if I talk too much, as I start to stumble on my words... which brings me to....

• Stumbling on words. This was most noticeable post-operation when I'd forget simple words I knew - it would also appear if I did a lot of talking and got tired. I put this down to overall tiredness as it seems to have fixed itself and I've done it way less than I had been. I was forgetting words like 'chair' for example,  nothing too complex - and I found it quite frustrating that the word was an easy one that wasn't coming to me straight away. These days this might happen once a week whereas prior to that, and closer to the operation it was several times a day. I do still forget where I am with sentences and often forget what I'm saying. I know my brain has found new pathways so that these things will go away, so I'm not panicking too much about it. 

• Incontinence. It happened a lot right before the Operation. Quite frustrating and annoying - my brain wasn't getting the signals when I needed to go, and I felt useless and as if I couldn't go out in case I had an accident in public. I know there are things you can wear to help, fortunately after the operation this resolved itself. I have since read this is a common side effect of my type of tumour, so am guessing if it comes back then that's not a great sign. These days I can wake up at 2am and sort myself, everything is fine. I'm not getting the same kind of signals though I am aware when I need to get moving. 

• Flaky skin. That's a new one for this week. There I was, my favourite black Snag skirt, however, it was covered in flakes, more precisely, flakes of my skin. It's like I have some kind of skin dandruff which seems to be all over, but not on my scalp (we'll get to that next). E45 seems to help though I need to apply it several times daily. I'm going to look into other gentle skincare options to help with this (like a nice bath oil if I'm allowed) as I'm stuck with it for a few more weeks - maybe longer if it's a chemotherapy side effect. 

• Hairloss. I am accepting of this, I am dealing with it, it does not make me sad. It intrigues me. I have hairloss all over my scalp though most noticeably at the front where the Radiotherapy area is. I currently have a higher hairline than usual, and thinner hair. I've noticed clumps from the back of my head though husband says he can't see any bigger patches. I am ready with scarves and hats for this cold weather and keeping the area as pain-free as possible as that's another side effect that could happen. I have (had?) very thick hair, the majority of the hairloss comes out when I brush my hair, and I'm shrugging and getting on with it - and pointing it out to friends when I see them. "Look! No hair!!" sort of thing. 

• Stroke / fitting etc. I have not experienced this and hope not to. 

• Weak muscles. This was the first symptom to appear. My calves feel heavier and not as strong as they used to. I take the stairs when I know I can, and walk as much as I can. I have a stick to help hoist me up when I'm sitting or in a car as well as my leg muscles get wobbly and it gets difficult to stand for a long time. This is a known side effect of the steroids that I'm on - I need to keep walking as much as I can. Stairs are easier in the morning, manageable in the afternoon and I feel like the slowest person in the world in the evenings! This does also affect how I get in and out of the bath (which makes me wonder if bath oil is a good thing, maybe I'll end up stuck in the bath unable to get out!) - too much time to think about everything! 

• Grumpiness. I am grumpy. Husband is worried I'm taking it out on him, I'm not noticing that I am but have seen it's a side effect of two of the treatments I'm on. I've reassured him it's nothing personal and to ignore it as much as possible. Then I feel terrible as it's not nice being grumpy to someone who is looking after you. But then I think, those kind of feelings come out with the people you're closest to, so as long as he's able to ignore we'll get through it. Plus I have a bit of a problem with emotions right now so if I get upset I won't cry. 

• Emotions. Yeah, that which I waffled on about yesterday. I don't really laugh hysterically, I don't cry. I'm in an emotional limbo. Apart from the grumpiness. 

• Steroid swelling. I put up with facial swelling for six weeks after the operation, that has gone now, and I'm left with steroid swelling. My puffy little cheeks, subtle but I can see it. I also have fluid retention around my tummy area which will go if I'm ever taken off steroids. Hopefully. 

• Weak teeth. So far no breakages, if I have any issues then it costs me to visit the dentist, so keep everything crossed. My teeth are very sensitive at the moment with cold water so I have to make sure everything is a bit warmer than I would have done which is working. I need to drink lots of cooler water for reasons I will go into on the next point.....

• Constipation. Hurrah. Evil. Drink lots of cooler water and eat Holland and Barrett bran things as they're lower sugar. I definitely had more of a problem with this at the start of everything, sometimes being on the toilet for up to two hours but not realising. Because....

• Lost sense of time. I have no idea what day it is. Well, I have a better idea post-op but I do still get a bit muddled with it all. But going back to the toilet and being on there for two hours - husband would knock on the door to hurry me along (pre op) and I'd feel like I had only been there for two minutes. The reality was WAY longer - but it didn't register. This is no longer an issue, fortunately. I still get my days of the week a bit muddled, but nothing as drastic as getting up on a Saturday morning and not believing it wasn't a Monday, which happened on the week leading up to me going to A&E.

• Diabetes. This is due to steroids. I had gestational diabetes and knew it would come back, and lo, here we are. I hate it, I tolerate it, I'm working my way through it. I know what to eat and so far everything is agreeing with me. I have a daily chocolate and that keeps me happy. I hate doing the blood sugar tests four times a day because a high reading means they might get me to prick my fingers even more times and quite frankly, I hate it, I'm managing and that's that. Proteins are my friend. 

• Steroid acne. I'm calling it that, little pimples which were on my body which are now gone, replaced by the skin peeling. So I'm glad those spots went, though I wish the skin peeling would go now too. 

I think I'll stop there. That's more than enough to be going on with. Brain tumours aren't much fun, the brain is a powerful thing and it amazes me how much it can do and how it can repair itself. Science lessons would have been way more fun if we'd had things like this (although these days I think they come under psychology which is also an interesting one!).

No Emotions

 This is something I've been wondering about writing about, my lack of emotions with everything. Now, don't get me wrong - I laugh, I giggle, but the laughter and giggles that come out are different to how they used to be. Things I used to find very funny I'm not howling with laughter about any more. Things that would get a reaction from me are met with a quieter laugh.

I know I'm dealing with a lot with the brain tumour, I would like to add that these whole two months I've known about what's going on in my head I also haven't cried. No tears. I was expecting tears to come at some point, but two months in and nothing, nada. Tears, where are you? 

Maybe it's me and my positive outlook (while things are still quite vague) and it's keeping those emotions away, but I'm surprised with laughter. I mean, I can watch an entire Taskmaster episode and laugh a LOT. The current series has just finished and I know I wasn't as cheery as I would be normally. So this leaves me curious - has the craniotomy knocked my emotions somewhere else? Will they come back? 

Healing-wise I've found that some things which were different after the operation are now back to normal, whereas other things are still in limbo. So for example, when I forgot words (regular words like 'chair'), that no longer happens unless I get tired. I can't open my jaw very wide still, that doesn't seem to have changed and I forget to put less food on my fork. There are other things which didn't work before the operation and do now, but the most emotional of emotions, they seem to have disappeared. 

Which leaves an empty feeling, where there could be tears there aren't, where there could be laughter there's quiet. Of course I Dr Googled it to see if it was a known side effect of my operation, and it's on the list - so I'm adding this to my "things I hope get better" pile, knowing it may well not. 

I'm absolutely fine about it, by the way. Not worried. I have too much other stuff to think about really. Just logging it here....

Forgetful Focus

Maybe it's because I'm well into the flow of hospital appointments and amazing friends (and family) taking me there, so I have other things to focus on. I'm getting a bit forgetful again. Nothing alarming or anything - just a general brain fog sort of thing. I'm not concerned. 

So, for example I think "oh this would make a useful blog post" - I get the laptop, I open Blogger and I start a new post. 

But that took too long - I've already forgotten what I was going to post about. It'll come back I'm sure. Probably while I'm mid way being zapped by the radiotherapy machine.

OH! I've remembered! 

I've been having low-grade CT scans this week. The monitor in the room has kept the scans of my head visible, so I've been going over at the end and admiring it. I'm no expert here, but you can see that the treatment is helping and the tumour is smaller, though I don't know which image they're comparing it to (as if it's before the main operation then of course it'll be smaller). 

But it's a nice positive. I've also had a couple of friends tell me about people they know with the same tumour I have who are still around four years later, back at work and living a vaguely normal life. Now THAT is a good positive thing to focus on. 

Anyway, I then thought maybe nobody knows what a radiotherapy machine looks like, so here's one from the Marsden.