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I've just had the most horrendous migraine but it seems to be getting better now after 4 hours resting in a dark room.  I seem to get all the 'rare' invisible side effects of meds and cancer treatment so the pain and discomfort is largely unseen. If people knew about my bad times I think they would be so shocked at how I can go for spells where I seem to be relatively ok with a smile on my face.  Next time I'm out I'll get the usual 'you're looking well', and I'll just smile and say thanks as I usually do. The reason I am so happy when I feel relatively good is because the bad times are and have been really bad. At this very moment I feel very happy because I'm relieved the pain is subsiding, it was terrifying.  If you see me out you will know it's a relatively good day because I simply don't go out at all when it's not. I get migraines often and my neurologist, oncologist, GP, and even the ENT specialist (it affects these areas too) ...

I apologise for the lack of posts recently, to be honest I had a lot of times where I was thinking very negatively and I wanted to wait until I was mentally in the right place to continue to post about my experiences. I also don't think I'm that interesting most of the time but I hope it helps some people to read this. As you can see by my last post I had an 'interesting' partial seizure earlier and now I'm in bed feeling quite tired all of a sudden. Last week I went away with an amazing, inspiring group of other cancer patients in Bournemouth thanks to Youth Cancer Trust and it taught me a lot. I was also very lucky with the timing because I seemed to have more energy than usual. I'm guessing some of that may have been a change of scenery and the excitement of meeting others that were not only lovely people but also people I could really relate to. I miss them already but hope to see them again sooner rather than later. 

I had a strange simple partial seizure earlier when out but after seeing my neurologist I'm pretty sure it's because I've been pushing myself too much and doing new things. I couldn't feel half my face, had strong pins and needles in my tongue, and felt like I was floating. It was concerning at the time but on reflection it could be so much worse and I'm glad it didn't develop into something worse. I'm encouraged so much by last week that I can cope with this. My neurologist is very happy, I just need to rest more.  The only reason I'm sharing this is because some of my friends might be able to relate to it and others can understand better. I get simple partial seizures every day but this one was unusual for me and interesting. I've learned my true limits which is actually a positive thing although I would love to be in the sun right now! 

I like the idea of having a Justgiving page so that you can see how much money is raised for a specific cause but there are a few things I question about fundraising: 1. Should I really need to do a 'challenge'? I would prefer to fundraise by educating and provoking thought and discussion. I prefer to provide information and will make videos in the near future. I have nothing against people who do challenges but it should not be seen as a pre-requisite. The challenge for me personally is to influence thought and actions with words. It appears many people want something in return for their money to benefit themselves or they want to be some type of voyeur who can visibly see someone suffering. The more suffering someone is experiencing in the public eye the more they give. The achievement should be influencing positive change. It sounds boring but it's true. I'm not a flashy, charismatic person but I speak my mind and I have strong opinions which I have thought about for...

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 no...

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...

I keep getting reminders that every day can be very different. Spending the weekend resting and doing very little helped to settle my head and I feel much less tired today. Everyone who has any kind of brain trauma quickly becomes aware that how you sleep, how you eat, stress, every day makes such a difference to how you cope with symptoms.  Sometimes I get very down on my bad days but when I realise where I've come from I get very encouraged by where I am now. When I have a good day I'm tempted to do too much but sometimes I feel like its worth it. It can take at least a year to recover from some of the side effects of radiotherapy on its own, let alone everything else! If you have radiotherapy to the brain you are aging brain cells so in the long term things get worse and this is a controversial topic but hopefully the benefits really do outweigh the risks if the person gets to this stage.  After radiotherapy I was incredibly exhausted, especially since I was never on steroi...