Thin Hair

I thought it was the right time to add a photo showing how thin my hair is from the side these days. Whenever I brush my hair I get a generous helping of grey dried out hair on my brush as the hair on my scalp disappears.

Husband said he could see lots of dried skin in there too. I'm such a looker these days!! (we won't add my swollen red hands which really cap off the look)

I've got a broken brain

Today was the first weird day. I woke up at around 10am after having had another unsettled night of coughing.

"Where is mum?!" My head immediately alerted me. "What have we done? Where is she?!"

I panicked. Because all my head knew was that my mum wasn't there and I needed her here.

Then I remembered. Mum is safe. She has never been with us. It's all okay.

But right then my head was pretty convinced she was.

A new side effect to the chemo has resulted in my skin looking a bit red and swollen. It doesn't feel like last time but I'm keeping a close eye on things. 

I've got a Broken Face

Today's "uuurghhh" moment is my face swelling up.

Under my eyes - I think my days of using the MooGoo eczema cream may have to stop - underneath each eye is what looks like a roll of skin which is swollen. 

Fortunately I have plenty of creams I can use from the first chemo/radiotherapy sesssions so I'm not panicking in any way. 

Yet. 

I was on a lower dose of TMZ the last time which is why I'm not sure how I'll react this time. Keep everything crossed that nothing plays up! 

Feeling Hot, Hot, Hot

This afternoon I got out of bed at 3pm.

I was feeling tired, probably down to this cough I have.

I was shaking and felt a bit weird.

Husband has said he's going to be taking my temperature. I just want to lie down and sleep.

If I was to go back to yesterday I was very shaky - so today's hiccup fits with all this. 

Anyway I don't think I have any more plans to go anywhere now. 

Open Your Eyes, Look Up to the Skies and See....

So earlier on here I wrote "Health-wise I had a headache, a very low-grade one which was there all day. I mentioned it yesterday at the hospital and I've been put back on steroids to help. So of course, my sugars went up. So there'll probably be more things I have to put into my body to get my strength and be prepared for treatment starting - I have a couple of weeks so there's time. Oh, and the headache has gone now as well. Typical. I had gestational diabetes when pregnant with my daughter so I know I'm high risk when it comes to anything blood sugar related."

This was November 9th last year - I only finally came off the steroids in the last couple of weeks. No headaches are present currently, though let's wait and see what happens once the Chemo starts again later today. 

I think what I'm noticing more than anything; the hospital staff know what I need to be doing - they monitor me fairly closely to check I don't have a bad reaction - but I don't feel like I have any control. Which really I shouldn't be anyway as I'm not the medical professional.

Here's a good example. Husband picked up my chemo medicine this morning, as well as some anti-sickness drugs. I asked him what I had been prescribed - and he told me "Some chemotherapy and some anti sickness drugs" - which I had to point out is why I've got so confused with all this. Tell me the names of the drugs and let me have some knowledge or control over this. I'm not about to guzzle the lot, I'll just know which is which.

I recently only found out that Temazolomide is chemotherapy. Which I probably already knew, but had almost definitely forgotten. I can safely say I thought it was a steroid. So yes, I'm very confused. Still working on that one though. 

Ring, Ring....

We all got a bit lost in translation yesterday. Fortunately it wasn't a pain for us (probably moreso for husband as he was working) - we gave up after hanging around the hospital for a further hour and headed home.

This was actually the sensible thing to do as the doctor who had told us we'd get a result in 30 minutes meant we had to phone and check in to see - but we weren't told that. 

Which is fine. I don't do 'being angry with other people' very well. 

Husband phoned the hospital but nobody was picking up (they have a new system that they're breaking in), and eventually I got a call from our Neuro contact who explained everything which made a lot more sense. 

So we decided to go ahead and start chemo today rather than yesterday - and that I'll take a tablet on Saturday to make up for it. 

So we're all set, it's all fine. 

I'm waiting, waiting, waiting, waiting....

Here I am after another Monday at the hospital. Today was a bit different to the usual - aside from the waiting involved.

We arrived at the hospital, checked in and grabbed my blood test forms, to then wait for two hours to be called to have my blood taken. By this time my veins were no longer playing ball, after three attempts we got there. It hurt though, it really hurt. 

Back in the waiting room and we sat and waited for me to be called for my blood pressure, weight, all the other stuff I can no longer remember as I'm SO TIRED. Which took forever. Another hour? It felt like it. Maybe not. As luck would have it, I bumped into Nikki who I shared a room with when I had the operation, so it was nice to catch up and see how she's doing. Chemo really does take it out of you, though it looks like she's doing okay overall. 

After that I sat and waited to be called to the Neuro Oncology appointment, and was called, ushered into a side room and then sat waiting for a WHOLE HOUR. Which wasn't doing my already tired head much good. 

Anyway, the good news is that my various levels are now at the level the hospital are happy with so I can start chemotherapy. 

Except I was told I'd get a phone call. Which three hours later still hasn''t happened (I'm kind of glad we left the hospital, it was making me tired). Fortunately we're close enough to the hospital we can pop there when we drop the teen at Guides. Except it closes at 5.30pm. Will I even get a phone call before then?