Thunderbolt & lightening

I could break into the Ted thunder song, but I don’t want to offend anyone! I’ll stick with Queen;

 “.....thunderbolt and lightning, very very frightening me!”

Gah! It’s not frightening me, but it’s horribly uncomfortable. Thunder does not agree with brain tumours.... I’ve always struggled with ‘thunder headaches’. Like numerous other possible ‘in hindsight’ symptoms,  I used put it down to dodgy sinuses. Now I suspect it could’ve been indicative of what was going on in my wee brain. 

My head has been thumping all day. Like someone has their hand around my brain and is literally squeezing. My ear feels ‘full’ and I feel tired and a bit dopey. Now the rain has finally hit, I’m hoping it’ll clear the air and my head with it.

On the bright side, I reckon I’ll sleep well tonight! Which is good because I’ve been asked to give another TedTalk tomorrow. To the church group of a friend. I’m happy to do it..... if people want to listen/read, then I’ll continue to talk/blog. The hope remains that telling my story helps me but also hopefully helps others in a small way. 

Other positive news is that I’m continuing to reduce my steroids. I’ve been on them far too long and I have been assured they aren’t serving me any purpose in terms of treatment. Stopping taking them is a slow process, with small bi-weekly drops. I’m persevering though. Another drop this Monday, with a view to being off them completely by the end of the summer. Another big step forward. After that I’ll start looking at the anti seizure medication. (The one I still take, as opposed to the one I was poisoned with!) 

I’ve been vocal throughout about my dislike of medication. I appreciate I may always need to take anti seizure meds at some level, but my aim is to take as little as possible. I’m not stupid and will of course discuss any decisions with the experts, but it’s my body. I also don’t want to live my life completely dulled down or unnaturally drugged up. 

It’s frustrating but I’m learning to be patient with these things. Mostly.....  As I sit here, writing this, a little bird just landed on top of my open patio doors. He sang me a little song and then flew off to shelter from the rain. Moments like that remind me everything is ok and help me relax. 

My other positive news for today is that our Macmillan fundraising total is currently an amazing £7,336. The generosity of my family and friends has been wonderful. Thank you. I am discussing with the charity about how this money will be used to help local cancer patients and their families. Tangible outcomes, not cash going into a charity money pot to be spent on admin or the like. Watch this space; I’ll keep updating. 

“Galileo, Galileo....”!! 

Queen- Bohemian Rhapsody 

Xxx