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September 2014

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Pain pain go away, come again never

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) say there isn’t much I can do about this. My last scan was stable and the blob of whatever it is only measured about 12mm so these migraines I’ve suffered with for a year and a half could be anything. 

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Lack of posts

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. 

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Today

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! 

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