Head Clear

can I mention how confused I am again? Only Connect, Mastermind, University Challenge. All quizzy Monday programmes ON A THURSDAY.

Husband and teen are both full of cold so we're all avoiding each other. 

Which is sort of weird as we're used to lounging around in here having random conversations. I'm glad this doesn't happen all the time. 

Instead my head has 'Discoteque' by Le Roop on repeat, a song which came eighth in the finals, though apparently 'We Are the Winners' scored more (and yes, of course we know the words).

Fara Williams, Mary Earps and the teen.

ANYWAY today's update is that I have a wheelchair (not yet needed), I'm getting an emergency box (ditto) and a hospital bed will be on order too. I have also run out of steroids (not wise). 

I always have so much to witter on about, which is often forgotten as it takes me so long to get in here and I'm distracted. Must do better. I'll just say we're delighted Mary Earps won footballer of the year because she's not afraid to speak out - more people should do it.

The teen and Fran Kirby aaaaaages ago. 

I'm having a confidence crisis. Should I post my beige food pics? It helps me remember where I was from day to day, though the actual day might not be right. 

This is my Bill's meal. Oh it was SO good. Inside that big loaf is cheese, cheese and more cheese. 

Bill's fondue and halloumi fries, yum. Beige. Yum.

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. 

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 (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. 

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.... 

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. 

A Long Weekend

I like how when we get an extra day off, a bank holiday it's classed as a long weekend. It also means I have no radiotherapy on Monday because of this - so all back to normal on Tuesday. 

That extra day makes all the difference. 

I can tell I've got a dry cough, not sure if it's hayfever or an actual cold but as I'm so close to the end of this phase of treatment I'm hopeful things will be fine, especially with the extra day. Oh and a nice sunny weekend and a child-free weekend too as she's going off on her practice trek for Duke of Edinburgh Bronze. 

So it feels like it could be a nice time to just slow down, eat well and relax. 

(and miss my child)

Side-effect wise, everything feels normal again other than not being able to sleep properly. My legs are a little bit dry, remedied with some moisturising cream I've been prescribed, and a drowsy antihistamine. I get there in the end, though last night slept from around 11pm until 6.30am which was the old sleep patterns I had back in the pre-brain-injury days. I'm sure tonight it'll get wonky again. I'm sure. 

So this phase of treatment will end soon, then more MRI scans to see if it did any good. Then we'll know more. My sister asked if all the waiting was frustrating, but I don't think about it. I don't think it would be helpful - we get the info when we get it (so to speak). They moved me forward with this Radiotherapy as there was a space and accommodated what needed doing. 

So yeah, who knows what happens next? 

Tumour Part Deux

The thing I like the most about Radiotherapy is seeing the scans that they use, and today I had more things explained to me. 

So the tumour that is a new one is in the Cerebellum. That section controls balance, but the tumour is so small that it wouldn't affect anything right now - we've caught it very early. (the original tumour is in the frontal lobe)

I've had a few Radiotherapy sessions in this new batch and got to see my scans today - and it's in a different place to where I thought. The cerebellum is a bit lower - and yes, getting near the spinal cord.  This also helped me understand why I am only having two weeks rather than three - because it could damage that area. So I have to try and be positive because I don't know what else to be. It took until 3am before I got to sleep last night. 

You have so much whizzing around your head, so when it stops and you sleep and you process the day's happenings, it's difficult when the happenings aren't the greatest. 

"Pallative" though. Everything is Pallative. Not end of life pallative, just treating the tumours pallative. 

I'm not sad, just thoughtful. Dealing with my thoughts and getting things in order. 

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. 

More trips to hospital....

So tomorrow as well as continuing with radiotherapy (which is kind of weird as the laser/zapper is at a different angle), I have my first Dermatology appointment. 

Which is a bit of a pain, as all the reactions I've been having are calming down now. I'm hoping it won't be put down to "A chemo allergy, let's see what happens" and that actually when the appointment begins, I hope my legs flare up with the mother of all itches so they can see what has been happening. 

The only thing that calms it down is a hot bath soak, and at night some of the foot cream I bought a couple of weeks ago. My skin on my feet has almost finished peeling off (such a lovely sight) so it's not even like I can show that. BUT I am good and I take photos of these things. So instead I'll label those..

It was weird being back in the Radiotherapy dept and seeing some of the Radiographers who obviously don't recognise me (although someone did in my new Radiotherapy room and I only went there before Christmas!) - but nice to be back in there. Everyone is so friendly. 

Right, off to label photos... lucky me. 

Dance Dance Dance to the Radio (therapy)

Radiotherapy will recommence soon. I've had my mask fitting so things should move quickly which is good news. 

Having my mask fitting a second time was weird - I don't remember it being like that the first time, but maybe it was just my rubbish memory and it has been so long ago. 

They asked if I wanted music then forgot to put it on - though I had earplugs and headphones to drown out the clanking ("is that a machine working?!" I asked a radiographer when I was there recently, outside another radiotherapy room. It is loud, incredibly loud). I was looking forward to a bit of smooth eighties movie soundtrack style tunes. 

Anyway, Radiotherapy will recommence soon. Two weeks only. I'm not stressing about it because I like going there (we have normal conversations, although I'm in a different room this time) and because I refuse to think about outcomes and why I'm there. Hopefully by the end tumour #2 will have been blitzed. 

Yes, tumour #2. I don't know what this all means, I'll only know after radiotherapy finishes and I have another MRI (hopefully with music this time). It's very small and we've caught it early. I've been told I won't lose hair with this radiotherapy so let's hope that's the case. 

Hair

I've always been aware that hairloss would be something I'd experience. 2023 has been the year of the hairloss, most definitely. 

I lost a lot of hair at the front of my head, though it's long at the back. I am currently rocking a prog style cut but I'm hopeful it'll grow back quickly - mainly as I've already got 1cm regrowth in a lot of places. This is where I wish I had kept a log of when things happened rather than guessing (as I'm sure you're aware with my lack of days and time).

I shaved my underarm area over two months ago and it still hasn't grown back. My hair in the more sensitive area has thinned considerably - I can even see my c-section scar again. 

Eyebrows, I remember rubbing them a lot during phase 2 of my treatment (chemo and radiotherapy), they haven't grown back yet, although a few stubborn hairs are sticking around just in case. Eyelashes seem fine which is a relief. 

Generally my body hair seems to be growing (mostly) and none of it seems to be different. So no eighties perm style hair currently. I'm quite relieved.

I've been told the next radiotherapy is in such a small area that I won't lose any more hair too. 

Given I was told chemo would give me total hair loss (and it didn't) I'm going to tread (and brush) carefully...  but I think I'm due some good news, if only so it's one less thing to think about. 

Anyway, here's the hair. Lookin' good.... 

"What do you need?"

Disclaimer - I am not picking out any individuals - just writing what has happened. Please don't take offence. 

Back in the radiotherapy days I had a brilliant rota between friends and husband to get to the hospital now I can no longer drive. It was great, we'd chat, catch up, grab a cuppa afterwards and chat more. Then the treatment stopped - and with that the rota was over. I'd have friends occasionally checking in, but more often than not there was silence. Now, I know I could get in touch with people so I'm also at fault here - though the sheer amount of appointments and getting things into the diary (which I spectacularly fail at).

Since early January I haven't had as active a social life. But I think we both know that - there's just one thing I wish happened when I meet people, family, whoever. I wish someone would ask 

What do you need?

Because I'm not sure what I need, but I'm never asked to form those thoughts. When we go out for the day teen hands me my walking stick, the car is unlocked by husband, things are done. So I might have a train of thought of things I need to take out with me, but the more things done by others, the more likely I am to forget them. 

Almost every time we go out I've forgotten a hat and - to be fair - I'm getting really bad at forgetting my stick. Which is why I don't want anyone to take offence. 

So yeah, I'll get back to you with something I need. There will be something, I'm sure. 

Hairloss Update

Oh, so here's a good one - some good news at last. My hairloss has really slowed down - I'm not getting as much hair coming off on my brush every day. Having said that, as my hair is now so thin maybe it's because there isn't as much to fall out? 

A photo which isn't an easy one to identify me, but you can see where my hairline went to, and how thin my hair now is. 

It then gets scary. What style should I get my hair cut? I mean, I'm facing up to losing a lot. I had a lot of hair once (read - six months ago). There are so many chemo hairstyle suggestion websites but I'm in the 'shave it all off and wait for it to grow' phase of it all. Probably. Then I have to visit my mum as it has been a very long time since I've been face to face with her. "Oh hi mum, I just fancied a shorter hairdo" probably isn't going to work. 

I've still got time to work on that one anyway. 

Let's Have a Dry Skin Update

Firstly, I'm not worried about it. I can see that dry skin is a common side effect when you stop chemotherapy and radiotherapy. 

Up to now I thought it could be something else (HELLO DR GOOGLE!) but now it feels more like a condition called 'Topical Steroid Withdrawal (TSW)' - which also doesn't feel like a fit as I'm still taking steroids, but feels like we're in the right sort of place.

Evidence!

 - the rash. This is part of TSW

 - my skin is flaky - a dandruff like sort of flaky. I collect dandruff-like skin parts in my clothes, amazed at how much my skin flakes actually create. To help counter it I'm putting on plenty of MooGoo Udder Cream which helps. ALSO - "Our Skin Milk Udder Cream is also used in Oncology hospitals and clinics across Australia as a moisturising cream for dry and damaged skin following radiation treatment and chemotherapy." So when the time came to check creams with the Oncology department this was approved quickly - and I had an order placed for the following day. 

So this is what we thought was probably a chemo rash (taken a few weeks ago), though could be an antibiotic rash - maybe it's TSW. However, now the rash has gone the skin where there was a rash is flaking, dandruff style. It's the skin healing and getting back to how it was, there's no indication how long it will take before it gets back to normal (which is normal). 

Now for the grim bit. My body is so good at collecting all the flaky skin that I can see it in the bathroom on our mats and on the floor, so can imagine it's just as bad in other places (under t-shirts, pants, trousers, etc). Nothing a wash/vacuum of the area won't fix, but I'd much rather not be doing that - it makes me tired anyway. 

A lot of this feels like guesswork, so that appeals to my 'must know everything' nature. 

Steroid Reduction

This morning I've had my first steroid reduction, down from 2mg to 1.5mg. This is going to be a long, slow, gradual reduction as if you do it too drastically you can end up having to increase your dose back to what it used to be. It's a week by week thing, which quite frankly if you're me, each week is flying by but now we're talking about reducing medication it feels like everything is a million years in the future. 

I'm twiddling my thumbs waiting to see if my head wants to have a headache or just get on with things - so far it's the latter. Keep it up, head. 

I've noticed over the last week my appetite has gone back to how it was before all this happened. On Saturday I ate so much more than usual I felt uncomfortably full - and that was the first time I had done that since last October. My appetite was fine, I just couldn't eat a lot at once - whereas this was a proper stuff your face I-NEED-FOOD sort of thing 

The only thing which makes sense is the chemotherapy and radiotherapy leaving my system - that's another one to look into. 

One thing I'm mentioning now, I'm becoming a bit forgetful again. Random words, chatting and stumbling over words. I think it's tiredness rather than anything more serious, but we all know what happened last time when I thought it was menopause rather than a bloody brain tumour. 

Holding Pattern

The MRI scan results from last week weren't completely in, just partly in. So we don't have all the answers, we have some. 

Plus we realised we never asked what the objective of all of this was when the journey started all those months ago. My little brain of storytelling felt that we'd be told the tumour had shrunk when they compared it post-operation to now because that felt like the obvious conclusion. We found out today that the tumour is still the same size as post-op, hospital are happy with this as it hasn't grown and my side effects are the ones I keep going on about on here. 

So I'm meant to feel happy knowing things haven't got worse. Oh, and to add to that, what we called my chemo rash might be an antibiotic rash actually - it wasn't tested when I was having all the blood tests of the last few weeks so things are vague there. Though I won't be having antibiotics this time so if I come out in a rash then we know it's chemo related. 

So I'm feeling a bit in limbo, stuck in a holding pattern. Waiting for things to start moving again. I had a blood test this morning and my platelet levels are still low - too low to start chemo right now. I'm that aeroplane trying to land but being told to wait a bit longer until it really is time to start the next part of the process. I'm not frustrated by this - I felt like it might happen, that there'd be a delay. So I'm back next week having another blood test to see if I'm able to start the treatment or not. 

I'm looking into extra ways to increase my platelet count. One way is folic acid though you have to be careful not to have too much as it can interfere with B12 levels. Seeing as I'm enjoying a lot of Nooch at the mo, I'd like to think my B12 levels are doing okay, though I do feel I should have more. 

ANYWAY I have good news (this sounds like I don't think the brain tumour news is good news, I'm still processing it, okay?). I am being weaned off the steroids. It's a slow four week process which may or may not work, the only thing I could say was "I'm celebrating with a WHOLE PIZZA" which probably sounds like I'm not taking this entirely seriously (I really am), I just miss pizza. So that's good news - hopefully. I'm not banking everything on this as things have a habit of going wonky, I'm keeping my fingers crossed and that'll be that. 

I've also been promised I'll get a copy of my head scans on a disc. I joked "amazing! That'll be a fun movie night" because that's how I'm still dealing with this, humour. Got to keep it going for the sake of my sanity even though I feel a bit shellshocked with it all. Time to reflect a bit probably. 

Chemo Evilness

I guess this journey into the unknown was due to bring up all kinds of oddities along the way as the toxic medicine makes its way out of my system, leaving behind little things to make sure I don't forget it. 

Because, ultimately, if you've never had chemo before, you don't know what to expect as you stop taking it. There are lists, long long lists. "You might have this happen" "You're less likely to have this happen, but you might" and so on. 

So let's do a new list. I have completed Phase 2 of this treatment (Phase 1 being my original craniotomy, Phase 2 being the steroids/chemo/radiotherapy for six weeks). Phase 3 is on the horizon but only once my body has recovered from Phase 2. So let's go into my Phase 2 side effects.

Hairloss. Predominantly around the area the craniotomy/tumour is, though I've noticed some from my hair overall. I used to have lovely thick hair, now I'm rocking a seventies prog look and am being indecisive. Not too worried about this one as it should grow back. Hats are my friend! 

Mouth Ulcers. A new one to the list. I developed the most evil of ulcers in my mouth, fortunately was prescribed a good mouthwash and a week later they've pretty much disappeared. This feels like a chemo side effect so I'm ready if more appear during Phase 3. Which they probably will. The worst two things about this was not being able to eat properly, and not being able to say my name properly when checking in at the hospital. Annoyances!

Blood in my mouth. Another new one - possibly related to the previous one, it has only happened once, possibly from me giving my mouth a good clean maybe? One to keep an eye on anyway.

Itchiness/electric shock feeling. Still going. Sometimes it likes to keep me awake most of the night, sometimes it gives me a night or two off. Definitely chemo related. Poison, be gone! (and please take away some tumour at the same time if that's not too much to ask, ok?). I've had MooGoo products approved to use on my skin so they're slowly arriving and making me feel happier. Feeling happier is a good thing and so much of the fight with this. 

Tiredness/napping. This cranked up a gear when Chemo stopped. Maybe Radiotherapy makes you tired, I think it does. Anyway, proper daytime naps are happening at the moment, usually for an hour or so. I'm not used to it, but I need it. 

The rash. Related to the itchiness/electric shock feeling, my skin is covered in hives (apart from my face) and they disappear at bathtime, reappearing further into the night as I'm trying to sleep. My only happy thing to say about this is I'm not leaving the house at the moment so if I need to sleep, I sleep. If I need to itch I slap a load of cream on my skin so I don't. If I get the electric shock feeling then ditto. A chemo side effect almost definitely. Willing to put money on it - 5p, mind. 

Here's a new one. My fingers do the typing, though sometimes they type something completely different to what I think I should type. I feel like it's something learning a new pathway, I can still type normally and quickly, it's just a weird one to keep an eye on. It's like forgetting words and that being a lot better, it's just a different part of the body. 

ANYWAY. That'll do for now. I do not feel sorry for myself in any way, I am getting on with things, but listening to my body. I have my Radiotherapy mask which I will take a photo of at some point because when you complete your treatment you're given it at the end. Daughter is horrified I am thinking about making it into a plant pot, whereas the Radiographers requested I send them a photo when it's done....

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!).

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.