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Encouraging progress (physically at least but also mentally)

I often feel frustrations about how I tire easily and can’t do as much as I could before I was diagnosed with my brain tumour but I’m still here and when I look back I have made very encouraging physical improvements. I remember when I had very bad photosensitivity and when I would struggle to get out of bed. Taking a shower and having short walks in the garden would be the hardest parts of my day and now I’ve managed to get out on my own for hours at a time! It has been a long journey and it will continue to be but there is always hope.  This last picture in the 4 below is me early in July 2014 after a little set back, a bit scary but I improved quickly. The first two are before and after my op and then just after radiotherapy and chemo for 6 1/2 weeks which I now regret for a number of reasons, especially for a grade 3 brain tumour after surgery but I could write a book on that!  27 April 3013 A week after op in hospital- May 2013 After 6 1/2 weeks chemoradiotherapy just after my birthday early September 2013 July 2014: People often use the term ‘fighting cancer’, as though it is a battle of wills but in my case I like to ‘fight’ it by improving my knowledge about the nature of the disease. As I have a background in nutrition and health I am greatly encouraged about emerging research on ketogenic diets and hyperbaric oxygen therapy for brain cancer. I realise that cancer is very complicated and I would be naive to suggest that there is a simple solution but my new oncologist believes these changes to diet and lifestyle could provide a ‘crucial’…

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Love independence, hate the risk

There is so much I could write about this issue and it has dominated my day so far. I’ve been trying to push myself out of my comfort zone lately while trying to stay safe at the same time. I feel as though I push myself right to the edge at times but then I take measures to stop just before I get there. This is what life with ‘reflex epilepsy’ is all about for me. I get ‘auras’ throughout the day and I avoid triggers to try and stop the progression into a full seizure.  Today I felt disoriented when going for a walk and felt like I was floating accompanied by light-headed ness and impaired concentration. After I say down for a while and took my ’emergency snack’ I was getting better and once I had arrived home I felt exhausted so had a rest in bed. I had really pushed myself walking for an hour in total with rest breaks but I did get some bizarre sensations around my craniotomy scar. It seems to be related to changes in heart rate, fatigue, blood sugar changes, and body temperature fluctuations so I’ve become a lot better at staying calm. If it was accompanied by intracranial pressure I don’t think I would be as calm though, especially with my next MRI scan coming up soon!  I buy my ’emergency snacks’ from The Natural Low Carb Store, fitting them into my ketogenic nutrition plan. They have a fantastic blog too about low carb dieting if you ever want to read it! Great for epilepsy, especially if it’s a ketogenic diet you are aiming for to control drug resistant epilepsy. If anyone actually reads this blog it’s worth a look at the link below! http://www.natural-low-carb-store.co.uk The picture below provides some info…

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Sleepy day- spoon theory in practice

It’s so easy for me to get swept up in a sea of dark thoughts on bad days so I pushed myself through it today, ignored facial paresthesia, had a shower and went for a walk. I felt dizzy many times while walking but made sure I was safe and carried on. A lot of days this isn’t too much of a problem but I was clearly tired. I realised I’m not quite ready for work because that short walk felt like running a marathon and I’ve been struggling with headaches and tiredness today. It was great to be out though and I stayed away from busy roads- my kryptonite, saps my energy! On a good day I can do a lot but it’s still so unpredictable and more than a bit frustrating! I feel rushed by society to push myself back into some kind of work. I’m desperate to do it for my own dwindling self esteem too but I don’t know what to do. I’m going to investigate tomorrow and see what help I can get. I don’t mind what kind of work it is so long as I can manage it.  I walked to the spa at The Berystede Hotel today to relax which helped but I was almost stuck there as I was so exhausted! I’m sure I will have a lot more energy tomorrow to investigate work options as I do feel ready to ease into it. I was thinking of helping others with neurological disorders and diseases but I have decided that I would prefer a distraction. I have had days where I feel more like the old Andrew so that is very encouraging.  I enjoyed this ‘relaxation room’ today. It helped a lot. 

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Beautiful day

Today was a really beautiful day and I’m sat reflecting. Every day can be so different but for whatever reason I had a great day today and was able to sustain my energy levels well throughout the day. I went for a lovely walk in the quiet bit of Windsor Great Park that nobody goes to and I took my keto snacks with me that I bought online from the Natural Low Carb Store in case I got hungry or tired. My head felt heavy and my ears felt a bit weird at times but these things are small compared to the symptoms I experience normally. I get so many invisible symptoms that feel almost impossible to explain so I don’t know why I still bother trying! I’ve decided I should add pictures to these posts because they would be pretty boring otherwise! Here is me in the park in the beautiful autumnal weather. People hate the chills when the wind picks up but cooler weather is great for my head for some reason! 

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Being proactive

Today I had the most awe inspiring meeting with consultant neurosurgeon Mr. Kevin O’Neil. It was very refreshing to openly discuss new, promising alternatives to chemotherapy and radiotherapy and to learn about more advanced surgical techniques along with prevention strategies to at least slow down tumour regrowth. I was also fascinated at having my blood tested for Biomarkers and advanced scanning methods which I have never had before.  As a result of all this I will be moving all my treatment to Charing Cross Hospital and Mr. O’Neil is very keen to get me on the ketogenic diet trial coming up soon. 

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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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Fundraising for me, you, or the collective good?

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 a long time. I have many weaknesses but I would like to try and play to my strengths which I am aware may make me unpopular to some. 2. Do we really need celebrities and people in the public eye to influence people to give money? Again, I would like to try and do this by having the opportunity to speak and giving to causes where people know what the money is being used for. I actually find the power of celebrity quite disturbing. I will set up a text number because many people are inherently lazy.  3. For me fundraising should have the end goal of letting people know where money is going and specifically how people are going to benefit. I dislike how…

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