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.

Tuesday, 25 November 2014

Research supporting metabolic therapy as treatment for neurological disease

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:


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.