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. 

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. 

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... 

Platelet Levels

Okay, so here's my next question. I've been thinking about it way too much.

As I've gone on about for the last few weeks, hospital got concerned about my platelet levels and I was taken off chemo a week early. That was okay as I benefitted from the time I was taking it. All I had to do was get my levels up again and hope the evil rash would go away sharpish.

Alas, the rash loves sticking around and does still make an appearance (it's easy enough to make it go though), and I'm still taking antihistamines last thing at night to help me sleep and to help the rash disappear (it's probably the former than the latter here though). 

SO. If my platelet levels raise high enough that it's fine to start phase 3 with the chemo, that's a good thing. However, if being on the same chemo then lowers my platelet levels (and I should add here, I'm being put onto a low dose to see how I go with it before it gets to the more powerful one), what happens next? Because if my levels were low and only just recovered I feel like they're likely to go low again rather than keep raising.

Unless it's the antibiotics I've been allergic to all this time. But I don't know that because nobody tested at the time. Sigh. And I didn't ask because I didn't think about it. 

So this is why I've been thinking about it way too much. Will I start and then it doesn't work out so we go onto a different plan? Does anyone actually know? 

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.