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. 

Steroid Reduction

This morning I've had my first steroid reduction, down from 2mg to 1.5mg. This is going to be a long, slow, gradual reduction as if you do it too drastically you can end up having to increase your dose back to what it used to be. It's a week by week thing, which quite frankly if you're me, each week is flying by but now we're talking about reducing medication it feels like everything is a million years in the future. 

I'm twiddling my thumbs waiting to see if my head wants to have a headache or just get on with things - so far it's the latter. Keep it up, head. 

I've noticed over the last week my appetite has gone back to how it was before all this happened. On Saturday I ate so much more than usual I felt uncomfortably full - and that was the first time I had done that since last October. My appetite was fine, I just couldn't eat a lot at once - whereas this was a proper stuff your face I-NEED-FOOD sort of thing 

The only thing which makes sense is the chemotherapy and radiotherapy leaving my system - that's another one to look into. 

One thing I'm mentioning now, I'm becoming a bit forgetful again. Random words, chatting and stumbling over words. I think it's tiredness rather than anything more serious, but we all know what happened last time when I thought it was menopause rather than a bloody brain tumour. 

Holding Pattern

The MRI scan results from last week weren't completely in, just partly in. So we don't have all the answers, we have some. 

Plus we realised we never asked what the objective of all of this was when the journey started all those months ago. My little brain of storytelling felt that we'd be told the tumour had shrunk when they compared it post-operation to now because that felt like the obvious conclusion. We found out today that the tumour is still the same size as post-op, hospital are happy with this as it hasn't grown and my side effects are the ones I keep going on about on here. 

So I'm meant to feel happy knowing things haven't got worse. Oh, and to add to that, what we called my chemo rash might be an antibiotic rash actually - it wasn't tested when I was having all the blood tests of the last few weeks so things are vague there. Though I won't be having antibiotics this time so if I come out in a rash then we know it's chemo related. 

So I'm feeling a bit in limbo, stuck in a holding pattern. Waiting for things to start moving again. I had a blood test this morning and my platelet levels are still low - too low to start chemo right now. I'm that aeroplane trying to land but being told to wait a bit longer until it really is time to start the next part of the process. I'm not frustrated by this - I felt like it might happen, that there'd be a delay. So I'm back next week having another blood test to see if I'm able to start the treatment or not. 

I'm looking into extra ways to increase my platelet count. One way is folic acid though you have to be careful not to have too much as it can interfere with B12 levels. Seeing as I'm enjoying a lot of Nooch at the mo, I'd like to think my B12 levels are doing okay, though I do feel I should have more. 

ANYWAY I have good news (this sounds like I don't think the brain tumour news is good news, I'm still processing it, okay?). I am being weaned off the steroids. It's a slow four week process which may or may not work, the only thing I could say was "I'm celebrating with a WHOLE PIZZA" which probably sounds like I'm not taking this entirely seriously (I really am), I just miss pizza. So that's good news - hopefully. I'm not banking everything on this as things have a habit of going wonky, I'm keeping my fingers crossed and that'll be that. 

I've also been promised I'll get a copy of my head scans on a disc. I joked "amazing! That'll be a fun movie night" because that's how I'm still dealing with this, humour. Got to keep it going for the sake of my sanity even though I feel a bit shellshocked with it all. Time to reflect a bit probably. 

God

I am not religious in the slightest. I can go into a church and it can take my breath away, though any connection to God is unlikely. 

What actually goes on in my head is the idea that someone somewhere made up a story and it has been passed down through the years, and it's the bible.

My 13yo basically told me this story too and explained why she's a non-believer. She did it way more eloquently than I currently can. I'm pretty sure I haven't influenced her in any way, besides, I've lost the ability to express myself like I used to. 

Sometimes I walk into a church or cathedral and it truly is a work of art, depicting stories from the bible within. You know, if you like that and it moves you that's great - it's probably up there with me having something I love and it being around me. We're all different and it's good.

The thing I'm finding difficult at the moment are a lot of the support groups. A lot of messages ask for prayers to their god and how could god be so cruel to inflict this tumour on their relative?

Everyone is different with this tumour, there's one common thing. We've all had evil treatment to make the evil tumour go away. But we all know it doesn't go away forever unless you're lucky. Like, 5% lucky. 

Otherwise this is a tumour which will be a nuisance and will insist on you having other operations, it'll try to weaken you and if you're really unlucky the steroids you're on will also give you diabetes - and you have to wean yourself off the steroids carefully otherwise you might have seizures.

I've never had a seizure, so I'm not sure what to expect should it happen. On saying that I might just stick with diabetes and steroids for a while instead. 

Tomorrow we find out more about my head. We find out about the chemo I'll be on and how I might react. I hope. 

I'm not being ungrateful about god, btw. Just thinking out loud.