Monday, 29 December 2014

Campaigning for improved nutritional support for brain cancer patients

Emails have been sent, more phone calls will be made this week. I am aiming to improve nutritional support for brain cancer patients in this country one step at a time. It is crucial that we do not downplay the importance of this. 

I will have a discussion (preferably over the phone or in person) about nutritional support for brain tumour patients with The Brain Tumour Charity and hopefully also Danone UK (they own Nutricia). 



As an informed cancer patient with a degree in nutrition I am greatly concerned by the poor nutritional advice I received from registered dieticians, in particular the recommendation and prescription of high sugar drinks during treatment. I have a considerable, growing body of evidence that supports the need for radical change and I believe this is possible with small changes over time. The easiest way to start is with these high sugar 'build up' drinks (eg. Fortisip, Ensure, Complan etc.) recommended for brain cancer patients.


Radiation oncologist Colin Champ MD agrees with me. 


As a simple example, we know that high sugar drinks (like Fortisip-Nutricia, owned by the Danone group) will reduce efficacy of the treatment, especially with dexamethosone (hyperglycemia is common as a response and is a predictor of poorer survival as shown below)


It is not uncommon for brain cancer patients to develop type 2 diabetes as a response to this steroid treatment over a period of time. It is worth noting the following...

'Excess pro-inflammatory mediators, some of which can cross the blood brain barrier, may trigger neuro inflammation, which subsequently exacerbates neurodegeneration. Insulin and IGF-1 resistance leads to weakening of neuroprotective signalling by these molecules and can contribute to onset of neurodegenerative diseases.' http://www.sciencedirect.com/science/article/pii/S0165572814001751

Additionally, poor glycaemic control will make it harder for patients to control brain tumour related epilepsy which is also not uncommon. 

I have been trying to contact Danone UK via email as they understand metabolic therapy, the link between blood sugar and brain cancer treatment outcomes, and they have the KetoCal range of products to treat children with epilepsy. I wish to discuss the possibility of a nutritional shake similar to KetoCal for all brain cancer patients (to replace the common Fortisip, Ensure, and Complan shakes). 



I hope that we can substitute the fats with MCT oil or powder as is increasingly common in Japan and South Korea to help manage neurological disease as I have discussed in another post. We already know that MCT supplementation can help to manage epilepsy even while on a standard diet (http://www.hindawi.com/journals/crinm/2013/809151/) so with the significant amount of brain cancer patients that have epilepsy I don't see why this should be too much of a problem to implement clinically. 



I can present all of the strong research I have collected and I believe my opinions will carry more weight if I can get support from The Brain Tumour Charity. 

I remain completely convinced that even this small 'build up' shake substitution will be a step forward for improved quality of life and improved treatment outcomes for patients like myself. 

I already take MCT oil from Nutricia to help manage my epilepsy.


Christmas

I realise I haven't written much about Christmas. I had a really lovely day with family and although it was exhausting I enjoyed it very much. The previous Christmas I wasn't feeling at all well so it felt incredible being able to be so much more alert than I used to be. At the same time I am in touch with others in my situation and sadly I hear a lot of upsetting news so Christmas was also a time for somber reflection for me. 

On a positive note I was able to play with my nephew which I couldn't do last year and I had cuddles with my neice. :-)



Exercise with an acquired brain injury- swimming

I think more swimming pools need to be available for anyone who has had any kind of acquired brain injury. Any kind of exercise in the pool is great and I think there needs to be more support for people in my situation and worse. Being in the swimming pool has allowed me to adjust exercises to my needs and I feel as though any support in this area is not well known. It becomes like a little secret for some reason. I'm very excited about going swimming tomorrow for a second consecutive day which is really tough for me. I always make sure I take precautions, take things slowly and rest, but I still feel very fortunate. 

Tuesday, 23 December 2014

MCT powder and baking- I know nothing and want to learn

I'm working on a cook book with my favourite ketogenic recipes to help others. 

Next week I will be making this low carb bread (4.3g carbs per bun, no grains) and I will be adding my Japanese MCT powder solution to it to see how it bakes. I enjoy experimenting with foods and trying new things. 


This experiment should be interesting, I've been doing more research on the Maillard reaction (I didn't know much about it before, but it's a baking thing!) to see how the MCT powder might react to baking and I think it will be ok. The Japanese manufacturers of the powder suggest that it should be ok but I'm not sure about the UK equivalent (I will compare in January out of interest! I am also wary of going crazy will ground almonds so I'm going to experiment with alternatives, have a play to see what works and what doesn't. I'll do this all after Christmas which I'm finally getting excited about!

Monday, 22 December 2014

Sleep is important!

Sleep is vital, your brain loves sleep. I am a sleep genius so I know. ;-)


I enjoy learning about sleep, this website is pretty good. We all know it's important but we seem to like to see sleep as an inconvenience rather than a priviledge.

Why not take the Sleep IQ quiz yourself or simply learn more about sleep? I certainly appreciate it much more now. 





Sunday, 21 December 2014

Japanese MCT powder- how we compare

I finally tried one of my many samples of MCT powder from the Japanese company Nisshin OlliO Group. It was actually more palatable than the oil for me and easy to transport in these little sachets. It looks quite milky when you mix it! It made me think a lot.


Translation of the packet:

Front:

Name: Powdered fat: Ingredients: Medium chain fatty acids, dextrin, modified starch.
Contains: 13 g. Best before: See base.
Storage: Store in a dark place away from moisture or heat.

Back: 

To Eat
- As it melts easily into hot or cold foods, it can be added to a variety of dishes.
- Using one 13g pack at a time, use three packs a day as a guideline.

Nutritional Information
Per pack (13g)
Energy: 100 kcal
Protein: 0 g
Fats: 9.7g
Carbohydrates: 3.1g
Sodium: 3.5 mg
Potassium: 0.16 mg
Phosphorus: 0 mg

Medium chain fatty acids: 9.1g


Here is the patent showing how they make it into a powder- I was curious!


Can be used to treat protein energy malnutrition (PEM). 



More about what is happening in and around Japan with these products:


My thoughts: 

It is quite striking to me that in Japan and South Korea these types of products are being used mainly in clinical settings and for the elderly while in this country use appears to be primarily for superficial reasons or for the dietary treatment of malabsorption syndromes (primary use of MCT oil since the 1950's). We have started to improve focus in this area but culturally we don't seem to value the research as much. I feel we are moving forward but still at snails pace.

In this country we are still in the stage where nutrition in care homes and in NHS hospitals is still not appropriate and we are only just starting to recognise how useful MCTs can be for treating neurological disorders and diseases. Imagine how fantastic it would be if a cancer patient received these MCT sachets rather than this sugar filled junk that they love to chuck at us!




It wouldn't be typical, for example, for a brain cancer patient with epilepsy or an Alzheimer's patient to buy our equivalent to the powders! When people see this they think about the body more than the brain which I find ironic.


Tuesday, 16 December 2014

Augmenting Cancer Therapy With Diet: Dr. Colin Champ

Augmenting Cancer Therapy With Diet: Dr. Colin Champ


Diet and cancer- what we know now and what we need to know! This is a superb video and it answers a lot of questions cancer patients typically have regarding this topic.


Research explained by radiation oncologist Dr. Colin Champ and great questions at the end. 


http://youtu.be/ot96y5-D_K0




Monday, 15 December 2014

Cold and flu

I still have a cold (boooo!) but I'm feeling alright now so it's just a mild, snotty irritant that I can cope with. No swimming today but I'm feeling pretty good relatively speaking! :-) 

I have started to drink homemade chicken broth which is great for the immune system and it's something I would like to continue even when I get better. 

I first considered doing this after reading an article by Ben Greenfield. I knew this before but I can be quite lazy. Some good reading here, Ben is a clever guy and is very well qualified to write about this.   




As I say I can be lazy so I followed these instructions for home made broth or stock or whatever you like to call it! 


This is also pretty good, ketogenicdietresource is very useful. 


Thursday, 11 December 2014

Lots of coughing, not sure what to do

I seem to have a cold. Not sure how this will affect me as I haven't been sick for a very long time. My facial paresthesia has come back and I keep coughing, pretty sure the two are linked. I know that having a cold can be a seizure trigger.


I think I need to rest as much as possible and continue to eat well. I've had a rest day today, it's pretty boring but necessary. If I was otherwise healthy I would just plough on through it but I need to be sensible and look after myself. 


I have reflex epilepsy since I had my brain haemorrhage in April 2013 so if I keep things under control I should be ok. 

Sunday, 7 December 2014

These are days when I feel like I'm ill

I've been feeling absolutely exhausted today and I've had a few strange sensations in my head so I've been a bit down and a bit moody but in between rests I've been working on my d├ęcopatch penguin and it's been quite calming. I'll finish him tomorrow evening.


MCT oil for drug resistant epilepsy- adult patient

I found this interesting. This is why I do what I do.



Wednesday, 3 December 2014

5 crucial facts to be aware of if you're on AEDs

1. 'Anticonvulsants can interfere with calcium and vitamin D metabolism. They cause an increased rate of bone turnover, thus affecting bone density. It is recommended that anybody who is taking anticonvulsant medication should also be taking additional vitamin D.'


'Many doctors, however, are not aware of the association between anticonvulsant medication and bone disease and less than 10 percent of neurologist recommend taking calcium and vitamin D to protect against side effects of these drugs.'


From countless studies including:


http://www.sciencedirect.com/science/article/pii/S0920121114001661


And


http://www.sciencedirect.com/science/article/pii/S1059131107002385



2. Switching from branded meds to unbranded does make a difference and can result in breakthrough seizures. The government has recently made branded medications less available to cut costs.

http://www.ncbi.nlm.nih.gov/m/pubmed/21521860/

3. Simply asking your GP for a FREE vitamin D test can definitely help you to control your seizures better. 


4.  Hyperglycemia lowers seizure threshold.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387262/

5. Brain tumour related epilepsy needs special considerations that I don't believe are currently being met. 





Getting back to exercise

I have started doing a bit more in the gym which is very cool. I suffered a tremendous amount of fatigue for over a year after my radiotherapy and this has improved significantly recently. I honestly thought it never would and felt very down about it. I work very hard to learn about when to rest and how to control what fatigue I have now. Sustained concentration is still very difficult. There are many exercises I still can't do that put pressure on my head so I think it's a great idea for anyone with an acquired brain injury to build this up very slowly by doing water based exercises using water dumbells. I use the ones pictured below and I have help from a friend who instructs aqua so that I can work at the right intensity. 


I have epilepsy and migraines that can be triggered by exercises so I need to be very careful with what I do. All of my exercises and rest periods are carefully considered and so is my food. I can't do cardio on land and I need to be very careful with my body temperature. The brain is very sensitive to changes in temperature, personally when my body temp goes up I get very dizzy. I swam properly for the first time yesterday which is a huge thing. 


Yesterday, all my troubles seemed so far away

Usually I find that 'recovery' from my cancer treatment about a year ago does not follow a nice linear path to progressive health but recent times have been much better than expected. I have felt this way before and then suffered big setbacks with fatigue, migraines, and increased seizure activity but all that is under control now.

I know that this is a combination of luck, the ketogenic diet, and avoiding personal known migraine and seizure triggers. At the moment I am doing much better than I had ever hoped. I say at the moment because like I say it can all be taken away very quickly so I have to remain cautiously optimistic. With time I have learned what foods I tolerate best.

Yesterday I went to the gym and had a little swim, something I couldn't do just a few months ago. This was a huge deal, I don't push myself and I have to be very careful with exercise selection because I am one of those individuals who can trigger seizures with exercise if not controlled. I am looking to add a supplement called 'ketoforce' to my diet before I go to the gym soon so it is easier to remain in nutritional ketosis and hopefully it will also help my exercise. 

http://www.bestsupps.co.uk/prototype-nutrition-keto-force-480ml

Initially when I started the ketogenic diet I suffered with debilitating fatigue, migraines, increased seizure activity, and what is often called 'keto flu'. This is typically caused by loss of electrolytes, resulting in feeling sluggish with little energy. After introducing more potassium into my diet and regularly taking micronutrient supplements this improved drakatically. I think this can be a common problem because we are typically so used to having a lot of potassium in our diets from foods like potatoes which you can't have on a ketogenic diet. We love potatoes in this country! Here is more info about 'keto flu' and how to prevent it. This is the biggest problem people have when initiating a ketogenic diet for the first time so I believe it is crucial to know about it. 

http://ketodietapp.com/Blog/post/2013/04/16/Keto-flu-and-Sufficient-Intake-of-Electrolytes




Sunday, 30 November 2014

Cannabis oil and brain cancer- current research

Many people question whether cannabis oil can be an effective treatment option for brain cancer moving forward. Researchers are currently experimenting with different ratios of CBD/THC to examine the therapeutic effects on glioma cells in animals and human patients. In future I would like to see this explored further with additional clinical trials for lower grade tumours and radically excised malignant brain tumours. 

Trials are currently underway by GW Pharmaceuticals on glioblastoma brain tumours. Please watch my video recording from ITV News and let me know what you think. In this video Dr. Wai Liu is being interviewed about his research in this area.


Here is some of the research by Dr. Wai Liu and his colleagues. Dr. Liu is based at the teaching hospital where I had my craniotomy- St. George's University of London.

http://www.sgul.ac.uk/media/latest-news/study-shows-non-hallucinogenic-cannabinoids-are-effective-anti-cancer-drugs

http://m.mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.abstract

Tuesday, 25 November 2014

Research supporting metabolic therapy as treatment for neurological disease







http://www.ncbi.nlm.nih.gov/m/pubmed/25301680/
























Sunday, 23 November 2014

Living with disability

I was asked recently if I could write an article detailing my personal experience of a typical day living with my particular disability/illness. The picture below is hilariously appropriate for me as a young man who was once very active.


In my situation illness and disability go together as I have an acquired brain injury caused by a malignant brain tumour. My tumour was discovered after a brain haemorrhage on a train on April 13, 2013 followed my multiple grand mal seizures in hospital. I would go on to receive brain surgery to remove as much tumour as possible followed by chemotherapy and radiotherapy.  Overall my 'acquired brain injury' is mentally and physically disabling and debilitating.

I have some relatively good days where I can surprise a lot of people including myself in a big way, but also some bad days with migraines, fatigue, depression, and increased seizure activity. It can be completely random or it can be triggered by over stimulation in that part of my brain. Every now and then I will go on a run of days where I just seem a bit tired and you can barely tell I have any problems. I'm very good at hiding things on my good days so I celebrate these days and just get on with enjoying every moment as a blessing. I'm actually on a good run at the moment where I'm just tired with a few dizzy spells.


Any kind of acquired brain injury is often an invisible illness so socially people can find it very difficult to understand. Every day I fight against assumptions and ignorance because I don't 'look' like I have incurable cancer or any kind of disability. Even if people do understand I can often get treated like a patient and not a person. The following statement is very apt for my situation. 


It is difficult for me to write an article to summarise what it is like to live with epilepsy and constant fatigue. I have 'auras' throughout the day but my epilepsy is largely controlled with drugs and avoiding known triggers. I live my life by 'spoon theory' and as someone who previously worked as a personal trainer it can be very frustrating when it can be exhausting having a shower even a year and a half after my operation. I find it hard to describe 'auras' and my partial seizures but I think this helps a little. 



There is also the fear about the tumour coming back, side effects of all the epilepsy medication, and continuing to get over the post traumatic stress I experienced after my brain haemorrhage. Leaving the house takes a tremendous amount of willpower at times because activity and social situations can trigger seizure activity for me because my brain can't handle too much sustained concentration. You don't realise how much stimuli your brain takes in until it is damaged. In social situations I try to help people by giving them these cards from Headway when I'm struggling to concentrate and can't get my words out. I feel forced to do this when people assume I'm being rude when I need a break.


The biggest frustration I find is that people use the word 'fight' a lot and say that you can 'overcome' disability and incurable cancer. Sometimes people's assumptions can make a disability even more disabling. I know this because I have been trying to get back to work for a year now and I keep suffering setbacks because I am not ready yet. If I am active for a few days I could be in bed for 1-2 weeks, which for someone who used to be a workoholic is tough and I feel embarrassed when people ask 'what do you do?'. It makes me feel like an illness rather than a person- full time cancer patient.

Social pressure pushes me to get back to work and I feel very lonely and isolated so I yearn for a sense of purpose in my life. I'm working hard on this now and hope that my cancer continues to remain 'dormant' for as long as possible so that I can be a young man once again. Disability is on a spectrum so I would like to share the following: above quote- woman in an epilepsy support group responding to an article below about the athletes Dai Greene and Kelly MacDonald 'overcoming' their controlled epilepsy. This can further contribute to a general misunderstanding about the condition as a whole. 



It's not all doom and gloom but I wanted to make sure people understand. I have studied Nutritional Therapy at masters level so I make sure I look after myself. Everything that I do has to be very controlled and considered but I continue to try my best- realistic positivity :-) 




Thursday, 20 November 2014

Seizures in my sleep- ouch, nearly

I had a seizure at about 3am in my sleep. It woke me up and I was conscious with no control this time, strange. I made a lot of yelping noises that woke my mum up and my right side was going a bit mental having a party on it's own. I felt very dizzy and still do a bit and the let side of my head feels very hot. I think maybe it was my own fault as I've been staying up later. 


I'm glad I know it not the tumour because I would be panicking now otherwise. I was snappy and verbally aggressive to my mum which I apologised profusely for not long after. I get like that often after seizures and it's horrible because that's the complete opposite of who I am. I get a lot of strong mood swings where I can get very snappy and agitated and want to be left alone. I know I just need to recover and get on with it and that's what I plan on doing. This is my reality now, at least it's happening at home more than it does in public. I have only had small seizures in public and people usually just think I'm drunk, rude, or a bit weird as my words get slurred, I become slow with everything I do, and I get strange sensations which are difficult to explain. Sometimes I feel as though I'm floating when out so I sit down and I get strange feelings in my face and parts of my body. 


I'm not going to whinge about it now though, it's part of my normal life and although after seizures I have a strong feeling of fragility and low self esteem, once I recover I become stronger mentally every time. The confidence usually take a while to get back but it does come back. This is where it would be very difficult if I was in a relationship. I've been single since just after diagnosis and although at times that was something I thought about a lot, in some ways it's a relief because it's a lot easier to hide this side of me to most people who don't see me often. I can't hide the symptoms that affect me every day but I can hide the big things and the bad days where I'm in bed all day with fatigue and migraines. 

Tuesday, 18 November 2014

Moved from 3 month scans to 6!

Scan results were encouraging, I've moved from 3 monthly scans to 6! My seizure activity has also been improving gradually so I'm hoping to get out the house again this evening. :-)

Sunday, 16 November 2014

MRI results tomorrow

Brings back all these thoughts. I wrote this when I felt overwhelmed and it actually helped me. No change on my MRI scan will, temporarily at least, release a lot of these feelings. 


Thursday, 13 November 2014

Still exhausted, trying my best

Yesterday I finally had my MRI scan but it was different to the scans I usually have. I had an MRI spectroscopy scan which I think all brain tumour patients should have the option of having. I'm exhausted now and feel quite depressed as I keep getting dizzy spells and migraines so I'll be lazy and share this information about MRS. It is from Wikipedia BUT I have checked it thoroughly for accuracy. It's surprisingly quite a good description. They don't do MRS at The Royal Marsden which is one of the main reasons I moved my treatment to Charing Cross. 

Magnetic resonance spectroscopy (MRS), also known as nuclear magnetic resonance (NMR) spectroscopy, is a non-invasive, ionizing radiation free analytical technique that has been used to study metabolic changes in brain tumors, strokes, seizure disorders, Alzheimer's disease, depression and other diseases affecting the brain. It has also been used to study the metabolism of other organs such as muscles. In the case of muscles, NMR is used to measure the intramyocellular lipid content (IMCL).


Saturday, 8 November 2014

Worried and nervous

I'm wondering if you can really tell much from CT scan results. I've lost count of how many pills I've taken today to cope and I'm feeling really unwell. 


I'm not sure I can wait until Wednesday for my MRI scan because I'm feeling so light headed and I've got a funny taste in my mouth. I've been sleeping a lot today and I'm going to try and sleep again now to cope. I really don't know what to do. 

Very sleepy day

I've been asleep for most of today after suffering with vertigo alongside terrible fatigue this morning. I am now starting to feel less dizzy but I have significant heat and pain where my craniotomy scar is. 

My headaches are being controlled relatively well with regular paracetamol which is encouraging. I'm still concerned however because something definitely doesn't feel right and I'm in a lot of discomfort. I'll just have to sit tight and wait until Wednesday!


Anonymous response from another brain tumour patient about my situation with the MRI scan- 

'Apparently only a treating consultant can order an MRI - I've had the same problem which is partly why I don't live in the UK anymore. Everyone goes on about how wonderful the NHS is, but I'd be dead by now if I wasn't so pushy. Do you have someone watching you at home? I would bombard your oncologist and neurologist's secretary with calls monday and till they're on it. failing that, back to a&e :( - good luck.'


Friday, 7 November 2014

Quicker MRI brain scans needed

As you can see even my hospital bed was surprised that I couldn't get an 'urgent' MRI scan until Tuesday at the earliest, even if I had suffered another brain haemorrhage! The doctor I saw in A & E added to 'keep in mind it's also the weekend and we don't operate MRI equipment at weekends.'


I can have as many CT scans as I like though because they are much cheaper and the NHS is trying to cut costs. I won't name the hospital because I could tell the staff were just as frustrated as I was by it all! Kind of regretting this post as I love the NHS! It's a massive shame though and quite sad. 

Luckily I feel as though I can hang on until my routine MRI appointment on Wednesday. It will be my first scan at the brilliant Charing Cross Hospital. I'm actually looking forward to it in a bizarre way despite being anxious as a result of my recent symptoms. 



Tuesday, 4 November 2014

In discomfort but hoping for a better day

I realise that this isn't the typical, ultra positive, sometimes humourous cancer blog that I see from others but I do have an important message that can sometimes get lost:

NEVER BE SCARED TO SHOW THAT YOU ARE SCARED.

This doesn't mean looking for sympathy but to me it means showing all sides of cancer so that people can show empathy through greater understanding of how you feel day to day. This is challenging because obviously you would want to be seen as you and not a disease which is completely understandable and the right attitude to have! 

To me it's about balance, I post positive and negative. At the moment it's negative which probably isn't great to read but when my symptoms are under control I do some really fun, positive stuff! Willow Foundation sent me to the Arsenal training ground not long before my bday for example and it was an incredible experience! I have had a lot of great experiences and I'm very thankful. At the moment my headaches and fatigue is so bad that I can't get out of bed so I'm reflecting on the good days from this year.


With Alexis Sanchez. Watching him train was brilliant


Meeting Kieron Gibbs, one of my favourite Arsenal players


Ellen Macarthur sailing trip

Bournemouth with Youth Cancer Trust

In Liverpool for a conference on ketogenic therapies for neurological disorders.

Cooking with Youth Cancer Trust in Bournemouth. Age range is up to 30 which is unusual but fantastic.


With David Seaman at The Big Match



With my nephew. 



With my neice, cancer makes you think about kids and relationships a lot if you're young and single like me- in good ways and also very sad ways. 




It is very important to let go of negatives but here is another important message to end on a positive. I wrote this down on my trip to Bath in the hotel room after a partial seizure that was making me fearful of leaving the hotel room. I had a rest and explored Bath a bit more, it was memorable. :-)


Monday, 3 November 2014

Anxious and frustrated

I tried to go outside and now I'm in bed exhausted in a lot of discomfort. I couldn't even walk in a straight line and felt as though I was going to feint. Now I'm sat in bed and I feel as though I'm on a boat, something isn't right here. I have a scan for next week but I'm trying to get it done sooner. 


I didn't look too confident on my way out. :-(



Saturday, 1 November 2014

Hospital again

I'm collecting too many of these! Just came back from hospital, feeling very groggy with a splitting headache after an unusual seizure but the CT scan results showed no bleeding. I had a feeling this might happen after nearly having a seizure in public a couple of days ago, stumbling around confused. I hope to get my MRI scan over and done with soon because I still have worries and concerns. 



Friday, 31 October 2014

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.



Monday, 27 October 2014

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'

Sunday, 26 October 2014

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.

Friday, 24 October 2014

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. ;-)