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..... 

Steroid Reduction Update

BTW, decreasing to 1.5mg last week was fine, so I've decreased to 1mg this week. No headaches in the last week, I'm hoping for the same this week. 

If I get a headache then the Steroids will have to be increased again. 

Chatting to my sister on the phone and I compared this to learning how to take proper photos on a proper camera and the triangle rule where the three main parts of the photo have to balance to get the right picture. So they have to balance my medication so I don't have a seizure/hypo/anything else that's possible with these chemicals. 

My Memory is Working Too Quickly

It's irritating. I can't keep up with my thoughts. 

I think of something, I'm mid-scroll. I stop what I'm doing and log onto the rest of my phone. I look blankly at my phone. Which app was I looking for to find the answer? I only thought about it a few seconds before. 

Most of the time I remember or the memory comes back eventually. Sometimes it doesn't - but I figure it can't have been important. I mean, daytime tv googling is probably what was going on rather than anything deep and meaningful. 

But I can't remember if it is! So I'm just assuming. Which is fine - less pressure. 

This has been the last few months of my life - it was a lot worse before the operation - which I put down to menopausal brain fog - and possibly still would now. It's only when I get irrational and arguing against something I know is wrong that alarm bells should ring. But then who knows when that's the case? 

I'll almost definitely deny it if things are as bad as right before I had the operation. How difficult? 

Answers.

I always get answers when I'm face to face with my consultant who knows I have a need for information so I can process all of this. So it was a good morning to go to hospital for my weekly "can I have chemo yet?" check in. 

By the way, the answer is no, I am not yet able to have chemo. My platelet levels went even lower this week to 60-something. Apparently the levels can be different throughout the day so there's still a chance this next stage could happen. There's also, as the gap gets bigger, the chance that it might not happen at all. 

I've also had it confirmed that if my platelet levels were to go lower when on chemo, the treatment would be stopped. Though on saying that, the chances of that happening are quite slim - though it could happen. But they won't know until I start taking the tablets, I won't be taking the tablets until I'm healthy enough to. I'm currently not... so I'm in limbo. 

It's "very unusual" having low levels like mine too which don't seem to be moving. Diet doesn't help - so there's no supplements I could take to help boost things. 

The whole hospital process is becoming a more efficient use of my time - I get there, get my blood test done (which for the last two weeks has involved no queues), get my blood pressure, weight and temperature checked, then before you know it I'm called in to my Neuro Oncology appointment - usually slightly earlier too. Then we check regularly during the appointment if my blood test results are in (they never are) to find out the levels and whether chemo can start. Sit in the cafe with a cappuccino and wait to get a call for the next steps. 

I am a very patient person, so I'm fine with waiting though know it won't be forever and could be abandoned if there's too big a gap. Which also makes me wonder, as the chemo I'm on (TMZ) responds well to the MGMT in my head in killing off the tumour and is a positive thing, it'd be annoying if I don't get any extra help in that respect. Sod's law, isn't it? 

Oh and my consultant is fairly certain my rash is a reaction to antibiotics. So there's another one I'm probably allergic to.