Planning Ahead

The single most frustrating thing about all of this is that I can't plan anything in advance. I don't know when my treatment will start so I don't know if I'll be on a treatment or recovery week. 

So, for example the teen tells me that "Heathers is going on tour soon" - I can't commit until I know how I react to the treatment, so it's a "you're going to have to tell your dad" moment. 

I had a look at the Annie dates on tour, so far we can get reasonably priced tickets and we want to see Craig Revel Horwood as Miss Hannigan (as we haven't seen him in the role yet, just lots of other people) - but yet again I can't book - though there are two or three options here which aren't too far. 

Uuuhhhhhh!

Fortunately, Come From Away is on tour next year so I'm not thinking about it at all. Plus there aren't any dates announced yet. 

I want to go back to watching football matches (Spurs Women of course) - I'm not quite in the headspace to go now but when things get warmer if dates match up then I definitely want to try. 

I want to do what would have been normal before all this happened, I know my limits and I know I can't just book and go - it's annoying. 

I get the feeling my platelet levels still aren't playing ball. I got slightly annoyed the hospital wrote to the GP and said my throat had swelled up with my new antibiotics allergy (as it didn't, at all and it's guesswork by them as nobody tested me for it). BUT this means that chemo won't start until it does. It's annoying. 

Performance Status

This is a new one. Got a copy of the latest letter from the hospital to my GP (always make sure you get copies, you learn a lot about yourself) and it has a Performance Status for me. 

ECOG Performance Status 2

Karnofksy Performance Status 90

These are both excellent - an ECOG Performance 1 means things are really normal.

Karnofsky Performance 100 the same. The fact my scores are so close is a good thing - if it was the opposite things would be way more serious. This gives me another question to ask at my next hospital visit too. 

This has given me a much needed cheer up (I wasn't too miserable though) - I feel like there's some hope or light at the end of the tunnel.

Legs

Okay, this is interesting. Since I started this journey way too long ago I've had a heavy, cumbersome feeling in my thighs. Walking upstairs has been difficult later in the day - I've previously described it as like wearing a diving suit and being held back by the weight of it. 

Every Tuesday I've cut back by 0.5mg of the steroid I'm taking - and one of its side effects is making your leg muscles feel as I've described above.

This week I'm down to 0.5mg, the lowest I've been on since all this started. Last night I went up to bed and made it upstairs like I used to - there was no heavy feeling in my legs. It felt normal - pre-tumour normal. I got to the top of the stairs and felt like things were how they used to be.

If things go back to how they were (which is possible), I'm glad that I could feel 'normal' again so quickly on a lower dose of steroid - that makes me wonder how much my blood sugars could be affected too. 

I've described this as being like the triangle with taking photos* - you change one bit of medication and the other two parts need to be looked at as well so things don't get really wonky. 

I know this is a positive thing overall but doesn't really change anything, I'm taking the positives though, it's a good mental health thing. 

*technical term there

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. 

Rashly, Flakily

Oh. Interesting. I forgot my evening antihistamine last night - the only one I take these days.

This morning I had no flaky skin. No "hello, I am a rash" on my skin. 

Which is quite interesting. 

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.....