Ben's Brain Tumour Blog

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

October 9 th So yesterday was my first meeting with my neuro-oncologist and specialist nurse. Both very nice, and had a positive natured outlook. Talked about a lot. Surgery risks due to my tumour location we’re more than a little overwhelming. But I am allowed to reduce my dose of steroids in the next few days to half current dose which should be really positive in terms of side effects and will be an interesting process. A positive meeting but one that left me and mum completely and utterly exhausted. I received a phone call from Cardiff cancelling my neurosurgery appointment for next week, so now a bit lost in the dark. Although my scans are going to an MDT meeting in Plymouth this week hopefully. But a large time set back. Had a mild panic attack and a couple of hours of brain fog when I got home. Struggling to process the days information. Read a blog that affected me quite deeply. Hadn’t had too many thoughts about how it would end until now. Not finding the nature

October 5 th Went to A&E after a whole night of severe abdominal pain, intravenous paracetamol  was enough to control the pain. Ate a lot of food along with current GI distress from all the drugs probably just too much to handle. An ECG revealed I have a heart arythmia, likely to be Wolff Parkinson syndrome apparently. Starting to feel like all of my health anxiety symtpoms have been real physical symptoms all along. Still haven’t seen any specialist about oncology/neurosurgery/cardiology and its all a bit overwhelming and lonely atm. Also my girlfriend leaves on the 7 th and I’ll be loosing my comfort blanket. October 8 th Went gp’s yesterday to be referred to a cardiologist. Had a bad day with the use of my limbs. Just didn’t feel like I owned them, strange feeling of having someone elses clumsy legs attached at my hips. This sort of feeling has been coming and going across the past two weeks but seems to be getting worse. Slopes and gradients are stairs are espec

September 23/2013 Was discharged from the hospital after the Cardiff MDT meeting agreed upon the glioma being probably of low grade. Huge news that made everyone feel instantly better. Told to continue with drugs and return to Cardiff in 3 weeks for an appointment with a neurosurgeon. Very happy day for the family considering low grade gliomas are the in the minority compared to the much more aggressive high grade blastoma variety. My family and closest friends I have told and they have all been fantastic. News got out through church circles and I’ve had lots of prayer and positive thoughts my way. I just hope mentally I stay stable. October 2013 Physically feeling a lot worse, balance, coordination, eyesight all getting poorer. Legs feel pretty gimpy. Having all sorts of gastric problems. Haven’t had a normal bowel movement since starting all the drugs. Lots of hot flushes and heart palpatations also. Also some severe joint and rib pains occasionally that will take my b

The diagnostic process with my brain tumour was probably a year- long slog of confusion from start to finish. its not over yet either (no histology yet). It’s a bit of a long read so you more than welcome to skip to the end because the end result is the same, but for my own benefit I’m going to document the years process.. In summer of 2012 I started having panic attacks out of the blue while on medical leave from university due to a particularly bad spell of IBS that prevented me from attending enough lectures to be allowed to continue. Mostly due to this being an NHS funded course in which 20 weeks of work for the NHS was required per year as a diagnostic radiographer. So any time off sick was taken seriously. I’ve had IBS since I was 16 after a stomach infection picked up on a holiday in Portugal. It can be an extremely debilitating at times and often prevented me from doing normal stuff a teenager would want to do, but it wasn’t too bad. The initial bout of severe anxiety