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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…

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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.                                

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Positive day

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 steroids (this is a good thing but very tiring!) Physically my first goal was to take a few steps down my hallway at home and now I can walk very confidently despite being quite dizzy and tired. Most people can’t see this but I’ve kind of gotten used to it unless it becomes too much. It feels kind of like being hungover all the time! Today I did light exercise in the gym and I’m getting more confident in this environment even though there is a lot going on around me. I go to a class which was set up for young people who have had stroke and I’m very thankful for someone who…

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Challenging day

I’m having a very challenging day today with migraines and tinnitus but it seems to be improving well. I used to get anxious by this but I don’t seem to have pressure on my head and no fever so just waiting it out, staying calm and taking paracetamol. I’ve been in bed all day and it really hasn’t been much fun but usually the day after a long rest I can relax and try to do things sensibly. Using my phone with the brightness all the way down is always a challenge! I’ve been so much worse than this so I can take it.  On a positive note I’m very excited about having been asked to talk at The Brain Tumour Charity Grantholder Day in Farnborough. Being involved with much needed positive change helps to provide some hope for the future. I just wish more people knew about how serious this is because I only like to go out when I’m having a good day. I’m thankful that I am able to have good days at all because many people in my situation can’t. 

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An attempt at real positivity

Last year was extremely bizarre and always will be remembered for all the wrong reasons. I’ve decided to write a blog to keep people up to date with what has happened/will be happening with me regarding my brain cancer diagnosis and continuing treatment. I wanted to do this for a while as you can see from the date of the first post but I wasn’t in a good place mentally. It got worse when my Mum was diagnosed with oesophogeal cancer towards the end of last year. Writing this now and reflecting on what happened is so surreal but it’s nice to have an outlet for my emotions. I will occasionally become negative and say stupid things but I want to make a real effort to try my best to be positive. This week I’ve had a few crazy moments mentally but I’m doing well with a few things I hope to share soon. Please remember that I’m still coping with side effects of radiotherapy, chemotherapy, and I have epilepsy related to brain trauma. My brain can’t take too much at once and still needs lots of rest. It would be really good if people understand this when talking to me. Thank you. 🙂 Below is a nice picture of a brain for you because I’m sure that was boring to read…

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There are no words… but I want to try

This has been the worst year of my life since hearing the news I have brain cancer at 27 caused by a malignant brain tumour. I have been diagnosed as having an Anaplastic Astrocytoma in my left temporal posterior frontal lobe. It Is aggressive, cannot be cured and treatment aims to slow down its growth. I have been through a great deal of physical and mental pain resulting in a major brain operation and will be receiving chemotherapy and radiotherapy very soon. My future is uncertain and prognosis is generally poor. Research in this area is seriously lagging behind other cancers so please please give all you can to this worthwhile cause on my justgiving page.

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