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.

Loneliness

Here's one that I keep meaning to type up, maybe I already have. Who knows? Anyway.... loneliness. 

It's a weird one. I quite enjoy my own space, my own headspace, being on my own. Occasionally I crave company, usually when I'm feeling chatty (which can be anytime). But obviously, being signed off work for almost a year now with a few visits from lovely people who come see me isn't a huge amount - and more often than not, lately I've felt a bit lonely. 

This isn't helped by the teen being off school for the summer holidays, nor the husband working - both are brilliant, by the way. But it's just not having someone there at the point you need them. This isn't something that can be fixed easily and I'm content and accepting of that. 

We're all getting a bit snappy at each other now though. Not to the point it's a problem but I see it on a daily basis. The teen isn't happy I suggested adding food she likes to our weekly food order, for example. The silly little things we can do something about. 

There are the things we can't do anything about. I had my MRI follow up consultants appointment yesterday where Tumour #2 hasn't got bigger which is a good result. I'm not sure what it means going forwards because I've got quite slow about questions, thank goodness for email, eh? Tumour #1 has a new growth though that may have been covered in my first course of treatment last year with the radiotherapy. But the new growth isn't necessarily bad, it might be leftover "stuff" (my term) from the first treatment, growing in to remind us all that this isn't a cancer that's going away - it's a cancer which is going to be a proper pain. A proper pain which nobody knows when it's going to strike and get worse. 

Overall my consultant is happy with how it's all going. She's happy with me and my positive outlook. She was surprised I didn't look more poorly. 

I celebrated with cake and a 9.1 blood sugar reading afterwards. Not wise. 

The bonus of the new growth is a more frequent MRI schedule to keep an eye on it. Oh MRIs, how much I like you, lying there listening to Magic FM or whatever is on and trying not to bop my head to the music. It's quite relaxing to lie there with nobody bothering you (which I guess is now the exact opposite of being lonely, typical!) and live in your little world for half an hour or so. I preferred radiotherapy appointments as they were every day and quick so I'd get to chat to various radiographers or even bump into other cancer patients waiting for their treatment, it was like we had a little social club - and then it's stopped when you reach the end with just your plastic face mask to take away from it all. 

Anyway, this is just to say occasionally I feel lonely, there's not a lot I can do about it, but writing about it is always a good purge of the brain. 

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. 

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. 

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. 

Second Tumour Stuff

Last week I finished my second session of Radiotherapy. I kept it quiet, apart from a handful of people because I felt a bit like I had failed myself and I didn't need to tell everyone (this happens at times, okay?). 

Initially it was going to be three weeks, but the location of the new tumour (which is still quite small) was close to my spinal cord, so it was decided to make it two weeks and hope for the best. 

I asked my neuro nurse whether my upcoming MRI will show any improvement with the new tumour, and was told that it's unlikely we'll see anything as the imaging will be fuzzy. That's a new one on me, so another to add to the list of things to learn about. 

Neuro nurse said I'm doing extremely well with the treatment - especially as I've had no seizures which I swear they think I should have had by now, the amount of times I'm asked. I've had my nausea/food aversion period, and I feel like I might be going back into the dry skin phase now. Fortunately I have all the moisturisers ever because I'm a sucker for stuff like that. 

We chatted more, and there's a chance I might be on a different chemotherapy fairly soon. I think this is to zap tumour #1 (aka Greebo) and who knows what it'll do to tumour #2 (unnamed). 

I have two Radiotherapy masks now. Got to think of names for them. The only names that come to mind are Hinge & Bracket.  

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.... 

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. 

Michael J Fox

There's a great* article about Michael J Fox in The Guardian. He talks about his Parkinsons diagnosis and how he won't live to 80. This part stuck with me though, it applies to anyone who is feeling the way I am currently, and I'm sure millions of others. 

He added: “I recognise how hard this is for people and recognise how hard it is for me but I have a certain set of skills that allow me to deal with this stuff and I realise, with gratitude, optimism is sustainable. If you can find something to be grateful for then you find something to look forward to and you carry on.”

It's so true. The hospital tell me that every time. I can do doom and gloom as well as the next person, but when it comes to me and my own way of dealing with things, this sums it up. 

* I realise talking about something which is eventually going to kill you or contribute to it is not a good thing, but I think it's really good to talk about it. Awareness is so important. 

Battle! Fight!

One thing that bugs me a lot, when other people describe someone who has been diagnosed with cancer, they'll tend to refer to it as 

"(insert name here) and their brave cancer battle"

or

"Fighting cancer - what a warrior" sort of stuff. 

I can hereby confirm I have not yet had a battle nor do I feel like a warrior. I feel like me. Boring, ordinary old me. I just have this crappy thing in my head which I can't forget about easily. 

The crappy thing will remain in my head, and I should find out how things are going fairly soon. Hopefully the crappy thing won't have grown but let's not think about that right now. 

My days are spent working through my to-do list and trying to move around as much as possible - which is easier when the teen isn't at school (strikes, nothing more sinister). Also, Daytime TV. It's generally awful, however I've been able to pass on words of wisdom to a few people with things I've spotted. So yeah. 

It doesn't seem like a battle. The only time I feel something is when I want to fall asleep or my legs seize up when we're out of the house. 

I remember wondering what it would be like to have a month off work, but couldn't ever do it. Here I am six months off work and okay, I'm recouperating and learning what I can or can't do (DRIVE! DRIVE!), but I do miss not being around people. 

Tiger Bread Feet

So after hating my now-healed hands, the dryness has spread to my feet. 

Cracked palms vs cracked soles, the feet lose big time. So off to the chemist I go for a decent foot cream that I'm able to use. My toes are peeling, my soles are dry and spiky. Truly, chemo side effects are no fun. They're talking about increasing my dose for the next batch. 

In other news, I have a rash all over my neck. We all know what's going to happen next, don't we? 

(p.s. this is not a good photo of the rash, it's way more defined but you get the idea)

Dates

Good lord, I'm still bad with dates. In all my calendars I had my next hospital appointment as a certain day, when actually, it's the day before. It was only because a nurse phoned me to ask me to go in earlier for a blood test which is to be discussed in the second appointment. 

I'm relieved the hospital now has an app I can cross-reference and I'm also glad that I get phone calls like this - I feel so disorganised. 

I have a spreadsheet with every single appointment that we all have so I keep on top of it, as well as duplicating that information in my Calendar. It (mostly) works, I print out the spreadsheet and keep it with me when I'm making other appointments.

Or I make appointments for school holidays and then realise I'll probably be at work. (it's okay, I have annual leave). 

Anyway, just logging dates are getting muddled again. I bet I've already done this and I've forgotten. 

Progress

Last night I slept all the way through and didn't need cream to calm the itching.

That's all. 

"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. 

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.

Dry hands

Chemo side effect? Look at my wedding ring finger. Fortunately some skin has peeled away so the skin feels less tight. 

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. 

Flaky Skin Dandruff

Oh this is horrible. Previously when I've had dry skin I've had a few days of intense moisturising and it's gone. It has stuck around a couple of extra days this time, and oh can you see where I've been sitting. I'm leaving lovely deposits of flaky skin dandruff. 

The worst thing is there's so much of it this time around. It's everywhere. On the settee, on the carpet, in all of my clothes, little white flakes. I've dealt with dandruff in my teenage years when you'd have a delicate flaking of them on your shoulders - but never before have I knowingly dealt with it where it's on my body and flaking off everywhere. Even my neck is flaking. 

We have a gig tonight (I bought tickets ages ago) - and while I'm not paranoid about it (I could wear my long waterproof if it's really bad) I wish it was next week. These things are sent to try us - I hope they don't have fancy UV lighting, though I'm happy I'm in the accessible area and I have a seat. 

I'm hoping it'll be gone in the next couple of days, though that means that something else crops up instead. 

Chemo minus one

It's funny how when you stop taking the tablets, certain side effects disappear. 

So for example, I'm itchy, but not as much. My skin is flaky everywhere. Even my eyes and mouth. 

My retching around food is calming which pleases the teen as being sick is one of her phobias. 

Chemo day five

Aaaand that's the second lot done. 

My skin has alternated from burning hot, pale with a rash or the always familiar electric shock feeling. 

Today we went to Emmett's Gardens however the queue to get in was huge. It's not the biggest of places, however, Chartwell is. So we went there instead where we got a parking spot straight away and my food aversion led to me being able to eat a quarter of a flapjack. 

My eyes and mouth have lots of dry flaky skin for the first time. I took moisturiser with me which mostly helped  I felt quite self conscious about it though, I wasn't able to do a lot of walking (hills) so I sat in the car while husband and teen did. All good. 

Overnight and the flakes have come back and made themselves heard. My only sense of calm is knowing they'll have gone by next week. Please.

Quite a lot of my skin is flaky right now. I don't mind when it's small areas but when it's almost all of my body I just feel defeated. 

I slept though. Oh yes, I slept.