Saturday, 8 February 2014

Ups, downs, and boredom looking at the rain

I successfully halved my dose of Epilim on Thursday. I've been doing this slowly and cautiously over the space of a few weeks and hope to stay on just Keppra eventually because it has less side effects for me. This could have potential risks as I continue to reduce the dose but I go with how my body feels. I've had some bad days this week with fatigue and I still get the usual problems with headaches and dizziness but I feel like I'm looking after myself. I get very down sometimes but it usually passes. 

I'm starting to get very bored of a few thoughts on my mind that won't go away about the future and some personal things but I'm looking forward to less hospital visits after deciding to stop chemotherapy. 

Valentine's Day has also made me think again about something I last had been trying not to think about since I went to the Andrology unit before I started chemotherapy. That was a very strange experience (no romance there!). I'm at the age when you normally start to think about serious relationships but there are so many uncertainties now. I'm not really  a fan of Valentine's Day, it just made me think more. Definitely a lot more than normal.

There is a huge part of me that wants to forget about my condition but my symptoms, circumstances, and the fact I need to continue to go to hospital means that I can't. I feel like I'm in a prison because I can't fully let go of negative thoughts and I'm restricted with what I can do. Even short walks still make me exhausted. I could cope at first but it seems like a long time now. It's about a year ago today when I really started to feel my crushing headaches strongly and started to take paracetamol and sleeping pills thinking it was just stress. 

I got some very strange symptoms last night down my right side and in my head because I stayed up a bit later than I normally do. I won't be doing that again, having to be boring and avoid triggers is tedious but worth it. My tinnitus has improved a lot which is good news.

I know a lot of things could get better with time but when you also know it could get worse with time it's hard to be patient. I'll try as I always do. I envy people who's day is ruined by small inconveniences like the weather or simply having a bad day at work. 

Sunday, 2 February 2014

More steps forward

I seem to be adapting very well now to my decrease in Epilim which is encouraging news. I still have lots of headaches and get tired and dizzy but I feel very little seizure activity. I was able to have a little walk today for a few minutes which was nice (sunny but windy!)

It was also a great privilege to talk at The Brain Tumour Charity Grantholders Day on Wednesday and to hear from the impressive, forward thinking researchers who attended. No money given to The Brain Tumour Charity is wasted and I continue to be amazed by their tireless effort to direct funds on progressive research. I felt very honoured to be invited and I hope to do as much as I can in future. 

Below is a picture of a live tweet from the evening of me discussing my personal experience of diagnosis and what I believe future research should be focused on. I hope to give more talks in future if asked. Stephen Sutton has been a huge inspiration for me to take positive action in this way and although he has so much going on he's always incredibly positive and philosophical. If you're reading this thank you Stephen.