Oncologists Meeting 9th October

October 9th

So yesterday was my first meeting with my neuro-oncologist and specialist nurse. Both very nice, and had a positive natured outlook. Talked about a lot. Surgery risks due to my tumour location we’re more than a little overwhelming. But I am allowed to reduce my dose of steroids in the next few days to half current dose which should be really positive in terms of side effects and will be an interesting process. A positive meeting but one that left me and mum completely and utterly exhausted.

I received a phone call from Cardiff cancelling my neurosurgery appointment for next week, so now a bit lost in the dark. Although my scans are going to an MDT meeting in Plymouth this week hopefully. But a large time set back.

Had a mild panic attack and a couple of hours of brain fog when I got home. Struggling to process the days information. Read a blog that affected me quite deeply. Hadn’t had too many thoughts about how it would end until now. Not finding the nature of the mechanism of death in this disease particularly nice. But then how many are. balancing my thoughts on reading others blogs for support is tough, it can be both terrifying and extremely educational and helpful.

I’m finding cooking a lot quite therapeutic and time consuming/distracting, so I’m enjoying trying a lot of experimental cooking. had one of my best friends from uni over for dinner whos now working in cornwall which was really nice although i know i'm not the best company at the moment. A physio friend of mine has sent me some exercises to be doing to try and maintain my balance and strength which will be awesome as I have lost a lot of muscle mass and strength since ive been on the steroids. and gained all sorts of fat!  Still considering learning piano and Spanish to give me something to do during the long days.  Something else to put my mind on.

must stay positive :)


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