Ben's Brain Tumour Blog

Brain:  i had a functional brain MRI last week. This was in London, and it comprised of an hour in the MRI scanner doing various movement tests and other cognitive tests such as word association. the idea being when i move my hand, blood will rush to the area of the brain controlling this and the scanner can identify its location in relation to the tumour. relatively simple test to do. shame about the 10 hour journey and nausea. I'm in a clinical trial now looking at the benefits of intra operative MRI.. i get the results in the clinic on the 9th of Jan. Heart:  i had an adenosine ecg this wednesday. worst experience of my life. they told me it would feel like a heart attack and would cause a lot of panic but that it wouldn't last long., and i suppose it did. really quite painful crushing feeling in the chest. pains down all my limbs, struggling to breath. unfortunately it took three attempts to stop my heart and get a diagnostic scan in which they had to triple the dose

December Update Hello everyone, just a quick update because it’s been a short while. The only treatment update to tell of is increasing the dose of my anti-seizure medication due to an emergence and increase of twitching all over my body which could be minor seizure activity. The only other change in symptoms is an increase in quantity and intensity of my headaches but nothing that’s particularly difficult to deal with, it’s more just the anxiety it can cause. Heart scan is on the 18th and I have to have a filling next week, and I’m really not a fan of the dentist. Anxiety and Tumours A 2003 Finnish study discusses the links between tumour locations and anxiety prevalence in patients. The results indicate that patients with tumours in the right hemisphere of the brain (e.g. Me) had significantly higher levels of anxiety than that of left sided tumour patients. The good news is patients with right hemisphere gliomas showed a general decrease in anxiety after surgical interve

Back from Queens Square London, the meeting with the surgeons went well, they offered me a more aggressive surgery than the other centres, not sure whether that’s because they are more confident in themselves or what? Anyway they are going to dig a little deeper than the others and aim for a 90% resection. They have a theatre with an MRI scanner in it, and I’ll be in and out of the scanner throughout the surgery. Surgery is booked for the 16 th January and a functional MRI sometime in December to view the motor tracts. He said the most likely side effect will be left sided weakness/paralysis which is usually temporary. All further future scans will have to be at London too. After the appointment we went to an Italian restaurant for lunch and then on to the British museum before our train home. Rarely do I leave an appointment day feeling better about everything but I did this time. I’ve got Christmas to look forward to knowing I’ve got the best treatment I can get. Too m

After discovering my referral to London had been sitting on a secretary’s desk for two weeks instead of being sent, it was nice to see queens square process everything so fast and get me in the following week. So tomorrow we’re travelling up to London on the train which is really expensive for 3 adults. I haven’t fully recovered from a stomach bug yet and I’m a bit stressed about all the travel. The appointment is on Wednesday morning so hopefully afterwards we can go into the British Museum which is next door before we travel home so I’m looking forward to that! I’m having an increasing frequency of headaches which I’m not sure if its stress or cancer but I think it’s about time it came out. hope you're all having a good week, nearly Christmas :)

No news on the treatment front yet, so this is mostly going to be a boring blog about cancer metabolism theory and me trying to implement it. If you have cancer it might be vaguely interesting to you. If you don’t it will probably bore the socks off you. Bit of Depression I t’s been my roughest few days mentally since diagnosis; I’ve slipped into depression for a couple reasons. My girlfriend started her job five hours away from my home so that means seeing a lot less of her. My current year group is back in university this week after 6 months apart from each other away on placement, whilst my old year group have all started their careers all over the UK and all over the world. It feels like the life that I should be having has left the station without me on board. Also, It doesn’t take many negative thoughts to let the rest of them come flowing in. I’ve known this week would be rough. But it’s harder than I thought. I know there’s a chance that I will be able to re-join un

Surgical Decision Made I’ll start with the most important part. We had the meeting with my oncologist two days ago to discuss where to go for a third opinion. The end result is we are getting referred to the National Hospital for Neurology and Neurosurgery which is based at Queens Square London. It has the best technology in terms of imaging and surgical equipment such as intra-operative MRI and probably the most experienced surgeons. However, with this obviously comes longer waiting times. Fair compromise I think. It should be giving me the best chance anyway. This means another multi-disciplinary-team meeting and starting the whole process from scratch for the third time but hopefully it’s worth it, it’s certainly the final time this time. In the mean time: its my parents anniversary and we went for a meal out to celebrate. also following the theme of this blog i  made another cake. i didn't eat it though. oh, and i feel so much better since coming off of the steroids

      i can't sleep because this is weighing too heavy on my mind, I’m also having an attack of my heart arrhythmia I think, I’m over 100 beats a minute lying in bed, but maybe it’s just anxiety.  I’m so grateful for this blog, before thoughts like this would keep me up for days worrying. Being able to write them down and post them allows me to forget about them for a while without actually forgetting so I can sleep and get on with days as if it’s not happening. Good mental health is important, stress lowers your immune system and your bodies ability to fight cancer, cancer grows faster. not good! the problem: Surgeon A said the motor zone was right next to the tumour meaning it would have to be careful conservative surgery with functional MRI for brain mapping before surgery. Surgeon B said the motor strip was far away posterior too the central sulcus so brain mapping not necessary and surgery could be more aggressive in these areas.     Text books that i've read

So this week was the beginning of a long, complicated and surprisingly political surgical process. Its going to be quite an intense blog post so you can skip over it if you don't want to know the in depth details. Cardiff We went to Cardiff on Monday night ahead of our appointment first thing in the morning. My parents, Rene and I met the neurosurgeon in Cardiff who has an interest in low grade tumours. My first thought was he was the spitting image of Robert Downey Jr. He was a very nice friendly approachable guy who asked us how much we wanted to know at the beginning of the meeting and then treated us accordingly. To be treated in Wales I must be living in Wales and registered with a local GP there and thus have the rest of my treatment there too. Radiotherapy, chemotherapy etc. and likewise for England. To be treated in England I must be living in England due to NHS England and NHS wales being completely separate entities. Now, this means I need to decide where I want to

Okay, so were a month post diagnosis now.This blog update isn’t really about any treatment updates other than my own implementations and some drug changes as there really is nothing to talk about with regards to that until next week when I see some surgeons. It’s just more going to be a general update with some pictures to brighten this sad space up a bit! Dealing with five medical conditions means a lot of pills Breakfast! This is my current breakfast concoction for my IBS, Tumour, Epilepsy, Arrythmia and Anxiety excluding the two fish oils. Cutting back on the steroids has been amazing, I’m starting to feel a bit more mobile again and my tummy is getting a bit better also. My physiotherapy seemed easier; I only failed on one of the tasks. Increasing the keppra dosage has had an effect on my irritability and makes me very tired sometimes along with a few other unpleasant side effects but I remain seizure free for four weeks now so it’s worth sticking with for the time b

Future Calendar Dates So, we have some more moving forward with surgical appointments. They will be more than a month after my initial scans but there is no hurry from me anyway. Cardiff looks doubtful as to surgery as I would have to re-register in wales to be under their care but we are going to go for an opinion anyway. Plymouth and then maybe Bristol to follow later. ·          Cardiff Neurosurgery clinic appointment back on for the 22 nd ·          Plymouth Neurosurgery clinic appointment on the 24 th ·          Outlook Therapy 25 th . ·          Bristol for brain functional imaging sometime after? Personality changes and cognitive worries One of the main issues with frontal lobe tumours is that this area of the brain controls personality, and so alterations to the brain in this area often lead to personality changes. Unfortunately I have already had the displeasure of some of this effect with my anxiety issues and shorter temper. After doing a lot of r

Dexamethazone The side effects of dexamethasone have been one of the worst parts of the whole process for me so far, at 16mg a day my tummy just got worse and worse. My IBS was not ready for this. Pretty much house bound most of the time. Also the weight gain and muscle wastage combined with moon face and acne is really a kick in the teeth for self esteem. Watching 2 years of hard work in the gym melt away to be replaced by man boobs and saggy skin at such an alarming rate. I really know there are far more important things happening but I just feel so disgusted by myself at the moment. Thats the shallow superficial side effects. The joint pain and rib ache are also fairly difficult to deal with. I was told all this was fairly normal for dexamethasone so I’m pleased it’s just the drugs affecting me and hopefully this is all a temporary situation. Anyway long rant over. On the upside, now that I have an oncologist willing to alter my intial drug regimen I’ve been told