Thursday, 29 January 2015

Risks outweighing benefits or benefits outweighing risks?

I've decided to reduce my epilepsy meds again because life is short and I don't trust neurologists. I don't advise anyone else to do this but the further I get into ketosis the more intense the side effects of the medication hits me. I don't know if that's coincidence or not. I'm pretty sure this isn't tumour progression because it always follows the same pattern.

I'm discussing this soon with my neurologist but I know my brain better than they do in many ways. I always feel great before I take keppra and the reaction I get after taking it now is often so extreme that I get searing headaches that make me feel like I'm going to pass out and never wake up again. They call this a risk but it's an easy choice for me. The best decision I ever made in the past was completely coming off Epilim over time so I'm gradually going to reduce Keppra and see what happens. Of course it's scary and I'm bound to get some kind of withdrawal but the harsh reality is that this is a trial and error process.

On the surface I may seem brave but I'm far from it. I can't stand constantly being in pain and discomfort, I'm petrified of death and I'm realistic about the future. Coming off Epilim was the hardest thing I have ever done but I wanted a life so badly. Luckily for me my intuition was correct, Keppra seems to have saved me from seizures in the past so I'm not sure how this will work out but if I listened to all the people telling me what to do I would be bed bound and loaded up on tons of AEDs and paracetomol.

Wednesday, 21 January 2015

Exciting updates- ketosis

I'm feeling very tired today after being very active recently (relatively speaking). It's been a funny yet welcome feeling this past few weeks being virtually free of migraines and having significantly reduced seizure activity.

I've reached my blood ketone and blood glucose goals now and my levels consistently hover around these figures below which is very satisfying. 

The most satisfying thing about it for me is that I know there are improvements I can still make. I'm ready to really push on with this by getting much better sleep, making my own shower gells, hand soap, toothpaste, and shampoo, and monitoring exercise more effectively. I already use a natural toothpaste but I can improve it.

I'm really enjoying experimenting with this diet more now, it used to be a chore because I needed to realise how to make it work for me as an individual. Now that I have I really enjoy it. The picture below is you, me, and everyone.

The biggest mistakes I made when I started the ketogenic diet was eating double cream, dark chocolate, and nuts which are huge migraine triggers for me. Nutritionally I don't think they offer much anyway, apart from small amounts of walnuts occasionally (they offer a more favourable omega 3,6 ratio compared to other nuts). As soon as I removed these foods from my diet the migraines disappeared. 

I'm really enjoying the book 'The Omega-3 Effect' at the moment. It has a lot of science that is explained in simple terms as you can see. I love the cartoons! 

I'm still frustrated by the long spells of fatigue I experience and how random they are but as I have said before the good times are more frequent and much better than they used to be. I make the small amounts of activity I do look easy but it is far from it and at times it feels very dangerous. I'm trying my very best every minute of every day and listening to my brain and symptoms. 

The symptoms I still get can be very worrying and scary and even the best diet in the world can't control them unfortunately. The hope is that healing happens over time to make it more manageable. :-)

Finally, I'm still waiting on a few responses regarding my campaign to improve nutritional support for brain cancer patients so if I don't hear anything by the end of this week I'll have to do some more prodding! I'm still confident about this. Initial responses were somewhat encouraging but I can't talk about it yet unfortunately. Hopefully soon!

Friday, 2 January 2015

My very special day- reflecting on 2014

have been a huge Arsenal fan for as long as I can remember, it's just a part of my life and always will be. 

After my brain cancer diagnosis in April 2013 I was forced to quit my studies, move back with family, and lost a large part of my independence through having poorly understood invisible disabilities. Watching the football had become a real escape when times got difficult, stuck in bed with migraines, seizures, and constant fatigue. 

With diet, rest, and medication my seizures are largely controlled now and I feel lucky to still be here because this is a really devastating type of cancer and my family feared for my life after I suffering the brain haemorrhage on the train that led to my eventual diagnosis. I know I still have difficult times ahead and the only certainty is uncertainty but I can take time to appreciate the 'small things'.

A few weeks after my operation I was told my cancer was aggressive and incurable. I suffered with understandable bouts of depression, anger, and fatigue for a period during radiochemotherapy until I decided to discontinue treatment when I realised it would be ineffective for me. Most importantly I wanted to live life despite the poor prognosis associated with my type of cancer. 

Watching Arsenal became a real escape to the reality of my situation on my bad days. Even if I'm watching a stressful game it's a distraction and something else to talk about other than how I feel. 

When I started to get my energy and confidence back to a functional level in June/July 2014 I heard about Willow Foundation and decided to apply for a special day thinking it would just be a small thing. I told them I was a huge Arsenal fan and how much I would love to meet some of the players if possible. 

I received a response very quickly and it turned out to be one of the most memorable, special days of my life! I could definitely see why they call it a special day because I couldn't have asked to be treated better than I was. I can see why they call it a special day! 

When I arrived at the Arsenal training ground with my brother we were met by former Arsenal goalkeeper and founder of the Willow Foundation Bob Wilson. 

As an Arsenal fan it would have been enough just meeting him! Bob Wilson was a real pleasure to talk to and made every effort to make sure my brother and I felt welcomed and catered to all my needs as I can suffer with debilitating fatigue and seizure activity easily. I think I would have gotten through the day on adrenaline anyway somehow! 

It's hard to explain how overwhelmed I was when we were inside the training ground because we immediately had all the players coming through one by one for training and they all took the time to stop, pose for pictures, sign autographs, and even had little chats with us. They were very willing, happy, and it wasn't like a chore to them at all. Some of the players that didn't have much time to stop even approached us while we had lunch surrounded by players of the first team and youth teams which was a surreal experience. I had expected to meet a couple of the players and we got to spend time with all of them!!

Throughout the day Bob Wilson entertained us with anecdotes as we met the rest of the staff and toured the fantastic, modern, state of the art facilities before we watched the players train. During training the highlight was definitely watching Alexis Sanchez with his outrageous skills and then getting a picture with him.

I could write a book on my experience, it was truly memorable. To spend the whole day at the training ground, meet the players, manager, all the staff, watch training, and be looked after so well by Bob Wilson and everyone at Willow Foundation who helped was a simply unforgettable experience. I look back on that day in August often and it makes me smile even on my bad days. This is a brilliant charity and I'm so thankful for my very special day.  

Thursday, 1 January 2015

My last MCT powder sachet!

My most effective epilepsy medication. It controls my appetite, blood sugar, raises blood ketone readings and controls my seizure activity. This is my last MCT powder sachet, back on MCT oil tomorrow. It's a shame because I can take the powder out with me and it's great after exercise.