Hello

Should I do a little catch up on everything? Let's try....

I'm very tired. We know this, I keep going on about it. Lots of afternoon naps are being had, that sort of thing. Yesterday I lost track of everything. Had my tea and then laid down and had a nap, except I forgot I had my tea. So I woke up at some point past 9pm thinking I hadn't eaten since lunch, and I certainly felt it. 

It took husband to go through everything for me to realise I was completely wrong and had only been asleep for ten or twenty minutes tops. I was so tired I could barely sit up though. 

My sense of time has completely gone - I'm distracted by this being a side effect, but not beating myself up. Mainly as I remember this being an issue at the very start and it sorted itself out, so I'm hopeful this time too. 

My skin issues seem to have stopped which is good news. I never enjoy those. No dry skin anywhere either which is additional good news. No itchy scalp which is even better. 

Legs - feel very heavy. 

Stick - can't manage without it (I think)

Diabetes - I've stopped taking insulin. No major worries. 

Hair (back) - lots of thick, dark curly areas. Weird! 

Standing up is a challenge. I feel a bit giddy when I stand up and if I'm not beyond a certain shape I'll just collapse on the settee instead. 

No bruises on the end of my fingers! As I only need to do this once a week now which is great. Even though I haven't yet. 

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. 

Hair Revisited (3)

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

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. 

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. 

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.... 

Side effects update

Hands : very very dry and peeling. The good news is the peeled area has lovely soft skin. 

Legs : It feels like the heat - rash - peel and itchiness might be spreading to my lower legs. There is nothing better than scratching my legs raw and then having a bath to cool my skin down. 

Upper back : itchy. Helped when I insist husband or the teen put cream on. They're very good indeed. Current itch out of 10, probably 2.

Scalp : dry skin patches, fairly easily fixed with a nice massage oil. I have a Kiehl's one which smells great and works. The biggest downside is I can't smell it.

Appetite : Coming back slowly. I am eating three meals a day, sharing anything I can't eat. 

Hair : has FINALLY slowed down falling out. I can no longer stuff a teddy with it. Now I just have the world's smallest ponytail.

Walking : I can walk, I need the stick. Today we went to Bluewater and by the time we got home my legs had seized up. Husband and teen are doing a sponsored walk for my hospital. Lovely stuff. Since I came off the steroids my legs have functioned normally which I am forever grateful.

Hair

I haven't shaved my underarm area for two months or more. A chemo side effect.

So I thought I'd shave my legs for the first time in a year as it'd be better for cream, plus the hair won't grow back.

Except it has. More fool me. 

Itchy World of Pain

Oh my word. The itching. It was a whole new level of torture under my skin with no creams stopping it, just giving me a break until tiredness took over.

I am aware I'm scratching, itching my arms, legs, elbows until they hurt because I'm too tired to put more cream on. 

That what's left of my hair is probably hairs and flakes because there's not a lot up there right now, so hairs fall out with a lump of flaky scalp at the same time. 

I'm hoping tonight will be better. All I do is moan on here. 

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. 

Hair We Go...

I appear to have lost a lot of hair suddenly. I was expecting something to happen but not as much at once. I've been washing my hair (when it has been itchy) and gently combing or brushing my hair. You could probably stuff a baby teddy bear with the hair that comes out. 

Earlier today I asked husband to do a hair check. He can see more than I can in the mirror, plus will happily take a photo so I know what he's talking about. 

"Oh.... there's quite a lot of hair missing" he told me. I knew this, though it looks like there has been a major progression. The other side of my scalp (slightly above the hairline at the back) is now looking quite thin and sparse, hair-wise. 

I knew this - I've tied my hair up in the night at times when it has felt quite static-y and uncontrollable. I've noticed the hair fastener be tighter from week to week - from five times to six, to seven..... so I've been preparing myself for this time. 

The haircut. 

The last time I got my hair cut was in September 2022. I booked another appointment afterwards but my brain decided it was time for a bit of attention so I need six months of tidying up. I decided it was probably better to wait until the hairloss calmed down (I was having visions of a perfectly cut hairdo without thin patches so I think I should probably quit while I'm ahead).

"...and you have a lot of dry skin on your scalp as well" this makes sense with the itchiness. Well, off to the bathroom I go to give my scalp a bit of kindness and to hope it washes all the flakiness away. 

I spoke to the hospital this morning about my dry eyes and mouth, I'm getting something in my next prescription from them which is good, though still a couple of weeks away. I'm now wondering what's good for a very dry scalp. Other than itching it. I'm such a scratcher. 

Let's try to be coherent. AKA "this is what it's like on chemo"

This blog started out as somewhere to keep notes, but I think is lacking coherent content. So until my brain forgets what I'm writing about, let's try and do a "this is what it's like on Chemo" post. 

I have finished my first chemo session. I was taking 220mg (I think - need to double check) whereas before with radiotherapy I was taking a lot less.

I break my treatment sessions into three groups to keep things simple:

Phase 1 - my craniotomy and steroids kicked in, insulin too. 

Phase 2 - the daily radiotherapy and chemotherapy (1x20mg capsule + 1x140mg capsule once a day) plus steroids and insulin. 

Phase 3 - chemotherapy and insulin.

Phase 4 - Getting really irritated, more than I ever have been, by Ant & Dec, the 'On the Beach' ad and most perfume adverts. I warmed slightly to 'We Buy Any Car' when I found out two were filmed locally. They're still irritating though. 

ANYWAY.

I want to list my Phase 3 side effects as this is what is most recent in my head so I'll remember more. 

Swollen eyes. Ohh it looks like someone has whacked me in the eyes - they're so swollen. Fortunately they're hidden behind my glasses, but I feel quite self-conscious about my eyes. This is the first time I've felt this way about any side effect - probably as it's my face. 

Hairloss. I mean, I may as well brush my hair and watch it all come out, I don't have a huge amount left. I can make a tiny, thin, ponytail at the back of my head. Otherwise known as "it's probably time to get your hair cut" - but. There's always a "but" isn't there?

That electric shock feeling under my skin. I haven't found anything which comes close to this in lists of side effects. The feeling came back on chemo which says to me it's definitely the chemo I'm allergic to, not the antibiotics. On the couple of days leading up to the rest days I had to have the teen rub my back and husband rub my head as it felt like a thousand ants having a rave under my skin. It was not pleasant. I need to find something to calm it down for next time, especially as I think they might increase the chemo dose depending on how they think I've done. 

Sleeplessness. I managed to stop sleeping. It was like the old days! Lying in bed wondering when I was going to fall asleep again.... it just came from nowhere. The plus side is I'd keep sleeping until 11am, though that then sends everything completely out of whack, so isn't the best. I guess this is why they call them recovery weeks.

Lack of appetite. This one is a bit frustrating. I've never been a slow eater, I've never had no appetite. Yet here I am, taking forever to eat food, if it's spicy I can't deal with it. If there's too much of it I'll probably only get through half. Desserts are back off the menu, mainly because I'd be sitting there a week later still eating it. Maybe. 

Raised blood sugar levels. Yeah. 

Edited, added later. Spots. I found one on my neck. Another looked like an infected hair follicle. There's one on my bum. They're in very random places - the only thing they have in common is their itchiness and that it's more like a boil than a spot, and there's only ever one of them in that part of the body. 

Edited, added even later, I now have several hives all over my body and thankfully a good supply of painkillers. Let's see how we go. 

Other side effects of TMZ - forgetfulness. There was something I was going to bring up and guess what? I've forgotten it.  I've had a few times where I've forgotten what day it is - but that could be put down to poor sleep patterns so I'm not committing that one there yet. I did panic yesterday "I've not had my chemo!" to which husband and teen both said "It's Sunday, you don't take it on a Sunday" showing they're way more clued up to all this than me! 

I had one evil cold sore which was fixed with mouthwash and hasn't reoccurred. I've had a skin rash which looks like it could be coming back (the teen has been monitoring my skin very carefully) - so we'll revisit during the next part of the treatment as it's difficult to say this time around. 

I think that's everything. I'm sure I'll have forgotten something. I mean, we went to Nyman's National Trust yesterday and I forgot (yet again) to order the Tagine there and made do with a lukewarm baked potato instead (hmm, new blog..... )

Thin Hair

I thought it was the right time to add a photo showing how thin my hair is from the side these days. Whenever I brush my hair I get a generous helping of grey dried out hair on my brush as the hair on my scalp disappears.

Husband said he could see lots of dried skin in there too. I'm such a looker these days!! (we won't add my swollen red hands which really cap off the look)

Things and Stuff

So it is definitely something we need to do - get my life things sorted out. Hopefully we'll never need to use them or have access, but then again we might. Or maybe I'll need access to husband's because I'm going to live forever. Who knows. 

Today I was in a shop, it might have been WH Smiths, somewhere like that and they were selling wills you could do yourself. I forgot to check the price, they have power of attorney too. Things which we'd need to look at, quite possibly.

I've been keeping myself occupied filing all my books into spine colours. There's no reason for this other than it looks different. I have a pile of books upstairs with more downstairs too. 

I ordered a Thrift+ bag to get rid of old clothes that I won't wear any more which arrived today, ready to be stuffed full of nice clothes. 

Oh and child is adding an extra 5 minutes onto her start of the day by putting on makeup to cover her pimples. Proper teenager there - pleasingly she admitted it which is good. I mean, I knew what she was up to so I'm pleased she's told the truth! 

Adverts

Every other advert on tv is a cancer-related funeral care one. 

Every other advert on tv is a bank. They'd love you to leave some money to a charity (in your will) when you die.

Every other advert on tv is a chocolate one. This wouldn't be so bad if I wasn't fighting off a cold with higher blood sugar levels so chocolate has gone back on the not-a-chance list until things calm down again. 

Every other advert on tv is a takeaway service - like Just Eat or Uber. I get so many emails every day from Uber it's getting a bit silly. Uber, cool it down a bit, eh? 

I tell you what I could do with some adverts for - chemo-friendly eyebrow reconstruction people, hairline growing fast shampoo (as I could stuff several cushions with all my hair that keeps falling out). I had the most hair fall out today which actually did enough to block the plughole - that was a first. 

Today is also the last day of me taking all my medication unless it's decided that I need to go back on anything (and of course there's starting chemo whenever that happens). So I'm also wondering if this means my diabetes days could be coming to a close. That would be nice - if only to have a break thinking about what I'm eating... 

Stuff

Oh you know, there's only so long you can go on about missing hair, thinning eyebrows and flaky skin before you run out of things to ramble on about. 

That's okay. I guess if anyone read this and came across it in one day it'd be a bit repetitive. 

I'm finding that my thing at the moment which is really getting to me is loneliness. Which considering my sister and nephew came to visit us at the weekend is a bit ironic - we were busier than usual but I wasn't really - I sat watching. 

On saying that, they had a house-wide game of hide and seek which was very funny - husband and I were both amazed there were that many places to hide here. I didn't join in as I felt tired, but supervised (and apparently looked quite guilty like I was covering up for someone hiding - I wasn't) and laughed at my sister hiding behind the door as she wanted to watch tv rather than join in with them. 

The loneliness is weird. Teen is on half term and needs time to decompress after six weeks of school - I get that - whereas I'm on my fourth month of being at home and hoping that I can go for a walk down the hill to the local cafes at some point (which I'd talked about with teen). I'm definitely needy because of this. Teen did actually tell me to stop being like this - I am now worried I'm making her feel guilty because I don't want her to feel that way, but I'm pleased she was able to speak up. 

Ultimately, all I need is someone to walk with me to the bottom of the hill as my confidence levels are pretty low - the last time I did it was on Saturday and before that it was December (mainly due to the bad weather). It's the coming back up the hill which gets me - my legs still aren't great from being on dexamethasone (now weaned back to 0.5mg!) and I have to stop as they get wobbly - I feel better being with someone than on my own. I'm also a lot better walking where it's flat - so once I'm down the hill it's much easier to deal with. 

So yeah, half term is a bit weird right now. Hopefully tomorrow and onwards things will be better. 

Hairy

It feels like a hair-focused week this week. 

I've been doing a bit of Googling about my situation, as I'm not sure if my hairloss is permanent or not. Some sites say yes, others say no. The consultants say it'll grow back, the nurses say it might not. You see how this gets confusing now?

I've learned not to take anything to heart and that I'll probably get a few different answers to the same question. This seems to work quite well as that way I'm never disappointed, or at least if I am it's short-lived. It wasn't that long ago I was being told I'd have "total hair loss" with the chemo I was on. While I'm not a member of the medical profession, the site of my hairloss is where my radiotherapy beams were targeted - nowhere else. (oh and the exit site too) 

You can end up taking so much from someone's words and ultimately, there will be statistics that this is based on which they'll tell you which you then find out aren't your statistics. 

So it's actually easier to go on a day by day basis and have zero expectations. It works a treat for me - and the pressure is also off. 

Whether things change in the future as the treatment goes on and the next phase starts is another matter altogether, but we'll cross that bridge when we come to it. 

Anyway, it's half term now. I get to hang out with my child for a week if she'll let me - apart from on Valentine's Day as she's going to hang out with her friend as they're both "Single Pringles" apparently. 

Hair We Go

Last night as I was getting ready for bed, I was in the bathroom with my reading glasses on - something I often do as I'm tired and actually just need to be able to see. However, reading glasses are stronger glasses so I can see a lot more than if I was just using my regular ones. 

My H&M long cardigan wasn't looking its best. As in - it was covered in grey hair. My grey hair. So I removed the cardigan and stroked it gently where all the hair was. There's still quite a lot... so I'm still moulting. I'm wondering if the hairloss gets worse when I wash my hair - though I'm still using very gentle baby shampoo rather than anything which could react in some way - even though my scar on my head has healed. 

Anyway, there were clumps of hair all woven into hairballs, serving no purpose other than to remind me my hair is getting very thin (after years of glorious thick and fine hair). Which is something that I'm more than aware of... and again, I am accepting of and it isn't a problem. 

Teenager's favourite thing to do right now is rub my back and collect loose hair then show me just how much there is. We might as well stuff toys with it there's that much! 

Although I'm not sure what the toys might look like..... 

Side Effects Check In

I guess a check-in is due on this - though it's better news than previous updates. 

Hairloss. Still losing hair though it feels like it's slowing down. Previously in the shower I'd have quite large amounts of hair fall out whenever I wash my hair, whereas these days it's a much smaller amount. My hairline is about 2cm higher, you can't see the scar from my craniotomy unless you look really hard so it all looks vaguely normal - though my hair is much thinner everywhere - especially underneath where I have the smallest of ponytails thanks to the lack of hair there these days. 

The rash. That has gone now - though I'm still taking a sleepy antihistamine at bedtime so I fall asleep quickly - and a bit of a rash appears then but disappears quickly (like it's reminding me that it hasn't quite gone yet). Nothing some aloe vera/good moisturiser doesn't fix anyway. 

Dry skin. Where it was just around small areas it's now around my body - but no irritation, I'm just making sure to drink lots of water and put lots of decent moisturiser on the area which seems to help. It's very dry, flaky skin which is a bit like dandruff, there isn't a huge amount of it but enough you notice it. One to keep an eye on.... 

Platelet levels. I've gone on about this one over the last couple of posts on here, but they're low and I'm wondering how low they're allowed to go once they're high enough to commence phase 3 of treatment. 

I think that's it right now - I'm almost a month since my last Radiotherapy appointment (how did that happen?!) so it's a good indication how I'll deal with the next phase. Whenever that starts... 

Eyebrows

 "Mummy, I hate to have to tell you this but your eyebrows are looking really thin these days"

said the teen. She's right. I'm not vain enough to do anything about it (yet, I'm still admiring my new hairline which is 2cm higher than it used to be) but I have noticed how thin and shapeless they look. Of course, one of the questions I should have asked is "when can I have tattooed eyebrows" although going on what the hospital said about proper tattoos I suspect it'd be at the end of the treatment anyway. 

Which would mean I should do without because the idea of me drawing my eyebrows on fills me with many comedy laughs as I can't imagine I'd be very good. I mean, my hands are REALLY shaky as it is.