Changes and taking control.

Yessss! Goodbye The Royal Marsden! I won't be missing you! 

Undoubtedly a fantastic facility for other cancers like prostate cancer, but I would like more options and more hope with my brain cancer treatment.

Exhausting!

Today was exhausting but productive. I did a lot of walking which is always tough but I surprised myself with how much I was able to do. The other day someone told me not to worry too much about my next MRI scan because I'm LOOKING healthy.

I get this a lot and although I explain it to people so often people clearly just don't listen. I had my brain haemorrhage just after being told I look very fit and healthy so it means absolutely nothing and it upsets me if I'm honest because it just shows ignorance. Obviously it's really nice to look healthy but at times it's not so helpful when I'm having a bad day. Invisible illnesses are challenging for most to understand but if individuals aren't willing to listen it becomes impossible.

Earlier today I became a member of The Berystede Spa which was quite nice as a treat to myself and afterwards I went to the job centre to see what work options are available to me. At first I felt guilty about pampering myself but then I thought I've had such a shit time and some of my good friends have lost their 'battles' with cancer this year so I thought why not! I don't normally swear so I apologise but I get so sad and angry whenever I hear this kind of news. 

Back to the job centre... I must have had the worst poker face ever because the advisor I spoke to could tell I wasn't really ready just yet for work and advised me to try something voluntary first and see how I go. It also made me realise that I would have 0 confidence back in a work situation and I need to gradually build up to it as I did with my PTSD related to train travel.

If I have a good day I do tend to get overconfident and then really suffer from it later which I still find incredibly frustrating but it could always be worse! 

I'm very hard on myself and expect to jump straight back into work but when people remind me of what I've been through I realise it needs to be a slow, careful transition back into it. I'm also reminded about how serious my cancer 'situation' is because every 3 month scan still makes me very anxious. 

After my meeting at the job centre and some useful contacts I got my haircut and I'm pretty happy with it which will be nice for my self esteem. It's been pretty low recently so it will provide a nice 'pick-me-up'. The weather today was beautiful too so it was a good day all round. :-) 

I'm starting to get more seizure activity right now as I'm getting tired but that's completely understandable after a busy day! My tolerance to activity seems to be improving and my diet is well controlled at the moment which I am convinced is a contributory factor. The dark chocolate Brazil nuts were a real success today as a snack!

Here is my haircut 'selfie'

Strange time to be wide awake! Keppra?

Determined to lower these bloody epilepsy meds again! I always get the 'rare side effects'. I've finally snapped out of my zombie like state and it's 3:45am. 

It also appears to put me in extreme emotional states at times. I have a history of depression which I don't usually talk about but I think this contributes to me experiencing the mood disturbances that people can experience when taking Keppra. I take the unbranded type now because the government is trying to make cuts on NHS spending. I received a letter about this. 

Non eventful day today but that's not so bad

I had a fairly quiet day today but felt much better than yesterday. I'm not really sure why because I still went out for a short walk but I'm guessing maybe taking my epilepsy meds an hour later due to the clocks going back an hour helped me in the morning. 

I actually felt quite confident but then after talking for a while with a friend I started to struggle with thinking of words and concentration became more of an effort. It's so hard to explain this to the person I'm talking to and I feel like a bit of an idiot because I can't communicate effectively when it happens. 

This evening I made chocolate Brazil nuts (90% cacao) just for fun so I can have snacks for the week. I have gotten into entomophagy recently so I'm hoping to do this with insects in future! I was reading about it in National Geographic and became curious to try it myself.

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' part of the jigsaw to help manage the disease. Here is a dog with cancer receiving hyperbaric oxygen therapy. Pretty cool!

A few weeks ago now I went to the Global Symposium on metabolic treatments for neurological disorders organised by the charities Matthew's Friends and The Charlie Foundation in the US. Meeting respected researchers from around the world whom I had read so much about previously was a great pleasure. Being around so many intelligent, progressive, innovative cancer researchers felt like a great priviledge and gave me some hope for the future. 

Coincidentally the conference was in Liverpool where my mum's family live and I actually hadn't met them previously so that was lovely on it's own! These kinds of things go on my bucket list, not jumping out of a plane. 

I hope this provides food for thought for whoever is bored enough to read it all. ;-) 

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 about 'auras', it can be quite scary but I feel lucky to have them because I have time to move to safe areas or avoid triggers when I experience seizure activity throughout the day. Sometimes I get problems with words and facial paresthesia is a very common problem for me so that's when I know that I need to rest! 

I also got some new clothes today from ASOS for autumn/winter. I love understated style so I wear plain but classic, stylish clothes and scarfs. My hair is getting longer and curvier and is doing what it wants at the moment which is either hit or miss! It's great for hiding hair loss caused by radiotherapy as you can see below! 

I like my new plain black v neck jumper, it's so simple, yet goes with a lot of things.

I found a beautiful new public footpath today close to home but it felt a bit risky as nobody was around. I kept feeling lightheaded and thinking to myself that this wouldn't be a great place to have a seizure because nobody would find me if I needed help! The wooded enclosures are kept by Imperial College but you can walk through two fences off areas and it's really beautiful and peaceful. I adore nature and fresh air!

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. 

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! 

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. 

Me and my head aren't always friends

Migraines have been pretty bad all day but seem to be improving after a long day in bed. That's my whinge for the day. I'm thankful I have so many positives despite that so I won't dwell on it. I'll be back to looking like nothing is wrong if you see me out next even though I constantly feel as though I'm on a boat. Hopefully not a sinking ship just yet!