At the moment I’m sitting in my room thinking about all the things I need to do but I’m doing very little about it. This is definitely a case of paralysis by analysis and certainly very out of character for me. I have just had a minor skin operation (I will discuss this more in future) and I am waiting on a number of things so I need to be patient. Everything on the outside is so calm and still yet thoughts inside my head are spinning around rapidly. This time it is predominantly with excitement so I can deal with that! 

May started with me receiving my MRI results which were very positive. Rather than the usual routine I had come to expect from these meetings, we barely mentioned anything about the latest scan results because it was so clear that they were the best they could be and I had recently come off levetiracetam completely so even though there is always a doubt, I was quietly confident. My symptoms were largely resolved and I could see out of the corner of my eye that the scan showed noticeable improvement. 

My oncologist seemed very interested in my unique personal approach to the ketogenic diet and asked me a lot of questions about how I thought it should be implemented. He asked me if I am working at the moment because he is very keen to have me on his team in some capacity to help other patients with the ketogenic diet in clinical settings and to further research in this area with the potential of starting clinical trials. I was delighted with this opportunity and I instantly stressed how keen I am to get started as soon as possible. I have been desperate to get back to work for a long time but was unable to due to fatigue, dizzy spells, vertigo, trigerminal neuralgia, all that fun stuff that I barely feel at all now. I’m still waiting and a little impatient but I have been assured that he will get back to me soon. For my records I asked for a copy of my last 2 MRI scans so that I can compare the 2. 

I’m now going to ask for the CD after every scan so that I don’t have to wait for results. I have found that to be quite a stressful thing in the past, luckily I have a pretty good idea about how to best interpret these scans. In a strange way I quite enjoy it because the brain is so fascinating. Here is a video of my latest scan that I took while I was bored! Below is one of the stills. 

*video coming soon

It is quite clear to me (although these scans can be quite vague), that the unusual looking tissue on the right hand side- left temporal lobe area- is scar tissue and that there is no visible disease here as there was previously. It looks a little menacing but it really isn’t and I’m not overly concerned by it. I will keep an eye on this area and take every action I can to attempt to continue the healing process. Ideally in the future I would like hyperbaric oxygen therapy alongside my ketogenic diet to give me the best chance of achieving this and to potentially give me better survival odds going forward. I firmly believe that I can manage this disease indefinitely with the right metabolic approaches. Having the access to more of these approaches and the opportunity to help others in clinical settings would be a great step forward so I’m very excited about this prospect.