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. 

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. 

Computer v Phone v My Waffle

Up to now the posts I've done have been on my phone. Quite easy to do via the Blogger app and something that if I really wanted to speak up could be done fairly quickly.

However, this has meant I'm no longer using a computer. So to balance things this post is. I've also tweaked the blog theme as well. Stuff you can't do on your phone, or if you can I don't have the headspace to work it out. 

So, updates. So many phone calls. I have lost track and poor husband rushes around with his book of notes writing it all down so we don't forget. 

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. 

(I'm noticing I type more on the computer btw)

I have so many messages to reply to, so many emails to thank people, so many names to remember that it's really overwhelming at times. 

I'm also getting some lovely post from friends, with messages that really cheer me up. 

I'm also tired, more stuff for another post I'm sure!