Ben's Brain Tumour Blog

Its been over a year since I last posted, sorry about that. in June to August 2018 , I had 60gy of radiotherapy to my brain (32 days of treatment) with concurrent temozolomide, lost my hair in the areas which were close to the radiotherapy beams, but hair grows elsewhere. this was nauseating, unpleasant and increased my seizure activity, however, it was tolerable and wouldn't hesitate to do it again if advised. since then, I've been on a cycle of higher dose chemo (380mg p/day x5 consecutive days) every month for the year till today. this was also fairly tolerable once I had found my own way of doing. you're recommended to take at night before bed. however, I rarely slept well doing this. so I changed to taking it on an empty stomach in the morning and fasting till lunchtime minimum. this allowed chemo weeks to be very tolerable (provided I had enough rest) so I didn't work during chemo weeks. the week following chemo tended to be the worst week each month, frequent ill...

i imagine this one will be short. I have some pictures to show this time. so i had my 3 month scan last week and saw my oncologist in london again. the long and short is things are continuing to grow and the enhancement has grown so its now high grade, but that's just a label, the growth rate was always uncomfortably high. Report: ''unfortunately there has been marked enlargement of the substantial right frontal/cingulate glioma with an increase in mass effect, and more prominenet contrast enhancement. Posteriorly the abnormality extends into the base of the parietal lobe on the right hand side as well as into the corpus collosum, and anteriorly/inferiorly reaches the right sided septal nuclei.'' you might remember i talked about the corpus collosum (the connecting bridge between the two halves of your brain) at the beginning of this blog, the fact that its taken 5 years to finally invade it despite the growth rate in other areas is surprising to me. but apparently...

Hi guys, its been a long time coming, sorry, i've been apparently unmotivated to blog as of late, and because of that i have forgotten  a lot of things that probably should be blogged. multiple requests and i finally have a laptop to write it on. Care Oncology Clinic So i was interested in being part of a repurposed drug trial based in a clinic in London that my friend whose doing a lot better than me has been a part of for quite a while. After seeing my tumour on the post surgical scans i felt like it was time to jump into the private clinic and give it a go as i believed in the drugs after a lot of research (i'll make a seperate blog post about the details behind the drugs im on one day) anyway im taking mebendazole and metformin currently. i think i started this trial in december which was 5 months since the post op scan. My lovely friends and colleagues at work raised a load of money for me through bake sales and raffles without me knowing about it whilst i was off work,...

So i had a pretty successful holiday in norway which involved a lot of walking that i've sort of been training for, but since norway anytime i do any walking i have seizures during the night which are new, they involve an aura in my sleep followed by waking up to be locked into position in a very painful spasm, its like lockjaw, but all over. it was terrifying the first time it happened. i remember waking up incredibly confused and sort of gurgling in pain without any control of what was happening to me. Anyway, this has happened a few times now, its starting to get me down, obviously im scared of having unpleasant seizures but im also scared of what this means inside me head, i'm fully aware that new seizure activity doesn't necessarily correspond to growth but i know in my situation its certainly likely and hard to put it out of mind. and because its in the middle of the night again (nobody can tolerate listening to someones death fears anyway), therefore, im just...

I think i'm about 3 and a half months out from my op now and just getting around to making treatment decisions, the fatigue and effects of surgery are still real and heavy, my scan results came back and were unfortunately disappointing so i felt like i needed to go with a treatment option of some sort. This will probably be a long one. its 2am and ive put it off for a few days. Scan Results Unfortunately i didnt manage to get the same slices and sequences for comparison this time. but i will do in the future hopefully. a FLAIR sequence vs t2 should be sufficient for now.  Old Scans in 6 month jumps. These are two flair slices from my post op scan about a month ago. its hard to compare because of the different slice and sequence, but to me it looks like the anterior mass is now of a similar size to 6 months post op, however it seems to be heading south deeper into the brain (making radiation much less tempting). I'm assuming my brain has changed shape significantly...

General Update  okay folks, need for an update as the last post i was about to go back in for more procedures for my hydrocephalus. that didn't happen. we didn't get a phone call calling us in. and eventually i just got better. Ive been better for about 3 weeks now. so no more hydrocephalus. still have some issues but nothing in comparison to what i had. i even went back to wales for a week to see friends and make sure my house was okay (it was). i had a good time but i got tired looking after myself. fell over a couple times and after a week i wanted to come home again. but it was a nice experiment and i feel better now i can do a decent job of self care and getting about. 2nd Opinion so as you know the MDT in London decided they'd like me to have radiotherapy soon for my tumour. i went for a 2nd opinion with my original team in Cornwall, they disagreed and said the side effects outweighed the benefits of having treatment on my tumour at this time. this was my gut feeling...

Things haven't gone so smoothly this month. Last time i had a craniotomy the swelling on top of my head head had died down within 5-6 weeks along with the pain (as far as i remember), however, this time its been coming and going constantly. Alternating between good days and bad days without any reason that we can tell.With the bad swelling obviously comes a lot of pain in my head and around my scalp. Cognition and Mobility is also compromised pretty badly.The pressure build up causes pain down my neck and back as well, at its worse i need help to get up, and i tend to spend the days in bed. It also causes nausea and vomiting. Maybe 3 weeks post op this got to the point where i was unable to hold down any food and went to my gp who referred me to A&E who CT'd me and sent my scan back up to London who asked for me to be admitted untill they had a bed available to sort my hydrocephalus and meningeocoele out. So i had about 4 rough days on a neuro-ward back home where my par...

Hi all, so my 2nd craniotomy was booked in for the 1st june. nearly 3 1/2 years after the first one. this time with the same surgical team and same set up regarding surgical technique with the IMRI again, so i don't need to re-explain the procedure. This time they would use a entry site in the brain to get to the different tumour sites. This meant using the same scalp wound as before, but extending the cranial opening both forwards and backwards to get more access to the tumour that is now wider dispersed. unfortunately i dont have access to my pre-op or intraoperative scans to demonstrate what they did. (not yet anyway). i had non contrast pre-op scans the night before and then a contrast scan the morning of which  i wasnt expecting, but i suppose it makes sense considering at this point it had been a whole 6 months since my last scan. A few things were different  this time. i'd been practicing fasting for health reasons for a couple months before this surgery. but i th...

This blog post will mostly be talking about the Supplementary Motor Area (SMA). So after seeing the surgeons this week they told me my SMA has been invaded and will need to be removed. So basically the plan is to have a large resection of most of the tumour again, anterior, posterior and superior portions of the growth that has is occurred in the last three years. However three years ago they cut out tumour that hadn't as yet invaded important areas of the brain, (those bits were left in). this time however, they are planning on resecting the SMA because it has been invaded in its entirety now. I knew something had happened because of how useless my left hand is a lot of the time. So in the consultation i was told that i would leave surgery with a deficit in my left side. the extent of which was unpredictable, varying from lack of control and clumsiness of the left side to the complete inability to use that side. however this effect should be temporary. Post Operati...

 Hey guys, life is okay atm, i have fairly frequent head symptoms, (dizzyness, headaches etc) but a lack of seizures so in balance its all good. my life is still plodding along as close to normal as i can keep which was the plan all along. anyway, i had a scan on 01/01/17 in my home department in wales and recently got the results in London from my neurologist. i could have the results a lot sooner considering i had the scans on a disc a month ago. but i didn't want to look at them until i had too. so the scan results show more growth again. i'll throw the comparisons down here like last time because i found that helpful. 6 months comparison from the sagittal and 2/3 years on the axial to show you. not sure if the one the right is 2015 or 14. January T2 axial scans from 2017 on left too 2014/15 on right. As you can see the anterior portion in the frontal lobe has grown significantly this year, despite its appearance the posterior growth is more worrying as this is the gro...

Hi guys, its been an awful long time, sorry. Things have been changing i just find it hard to keep putting them up here all the time. or respond to most peoples messages and texts as i'm sure a lot of you have noticed. For some reason one of the effects that has come out of this is the irrational dread of messaging people and responding to messages and for that im sorry. i'm sure i'll get over it at some point. (edit: after a number of messages from people apologising for messaging me after reading this i  think i should state that is meant to be an apology from me as to why it takes so long to get back to you. not a hint to stop messaging me! kk thankyou all who care :) As for an update, i had a scan a few months ago, cant quite remember when, probably april. although this time i had the scan in my home department where i work in wales which was really nice. obviously i had to go to london for the results and to talk to my neuro-oncologist. it did show growth unfortuna...

So i travelled to London on a day off from work today to see my neuro-oncologist and have my scan with my mum and matt. The 10% of the original tumour that was left in next to my corpus callosum has been active and growing again for the past year apparently, not such good news i'm afraid. on left: 26/01/2016 scan               on right: scan from beginning of 2015 scan with tumours highlighted, because lets be honest the scar tissue from surgery looks so similar Scan from pre surgery for a bit of perspective. The post contrast scan wasn't enhanced so its likely still a grade 2, which is nice considering the genetics, and, its not a surprise its back already and to be honest i'm just glad its not a higher grade Although of course, I'm very disappointed and frightened that it has started growing again. Anyway, he said the three choices we have are 1 . watch and wait (recommended as i dont have bad symptoms currently, 2 . have sur...

Sorry its been such a long time since my last post. with starting work and everything else i haven't had much time and not a lot to talk about. I've been enjoying work quite a lot and everyone who works there is great but it's come with a lot of added stress to my life. and i've been upsetting people more often than i used to. i say things now without thinking them through first and have lost a lot of the social skills i used to have. things don't come easy any more and i'm quite paranoid and insecure about my ability to interact with people normally now. people, who've known me for a long time and knew me before the tumour can understand a bit more because they know i didnt used to be like this, but for all the new people i meet at work, this is the only me they know and its quite worrying. i don't really like myself any more. i just hope it doesnt get any worse and its just a phase caused by all the changes and stress in my life. i'm paranoid becau...

So it's been a while due to university finals and my dissertation etc. But i can finally say, i passed all my exams and got a 2:1 degree and will soon have a licence to practice as radiographer. I managed to get the job i wanted in royal glamorgan hospital and i am in the process of renting an apartment in a converted chapel in llantrisant. there is lots of paperwork and stuff to go through for both the job and the apartment so i'm not sure when i'll start work yet. I had a scan in cornwall this month, and the results suggested changes in the white matter of the brain but not tumour growth. the scans have been sent up to specialists in London to have a look at and maybe establish a better idea of what is going on. I've been really stressed lately because of exams and life in general really and symptoms have been very present frequently. I went on holiday recently to northern italy for a family wedding which was really nice and i got to strike off visiting venice fr...

Hey guys, I was supposed to have a scan on the 21st but the MRI department had a power cut so it didn't happen. we got off the train at bristol and are aiming to rearrange the scan for after exams. I've also got a job interview after exams too. so busy times ahead. everything is going okay, i built myself up for the stress of a scan and to not have it was extremely disappointing because i've got to do that all over again now. I had my 25th birthday since my last post, which was nice! a study came out recently linking glioma growth to brain usage, which worried me a bit as i am currently writing my dissertation and studying for exams. i suppose with the location that my tumour is in it would be physical activity that pumps blood to my tumour. anyway, using your brain killing you faster is a depressing thought for sure. Hope you are all well :) Go Karting:) http://www.npr.org/blogs/health/2015/04/23/401723235/thoughts-can-fuel-some-deadly-brain-cancers?utm_source=...

hello all, time for a new blog I think. I've only got two months left of what will be five years at cardiff university, which is extremely sad because i love it here. I've had some coursework deadlines and the last of my clinical placements in the past two months. Not sure how the the coursework went as we won't be getting results for a little while yet but my last clinical block was great. The staff and my clinical lecturer were awesome and got me to where i needed to be in time for my clinical assessments in which i got firsts. So things have been going surprisingly well so far considering how worried i was about returning to uni. The only downside to Carmarthen was the hospital accommodation which was a bit grim, but my coursemate made it easily survivable and i spent most weekends in swansea with Rene and her family so time went by really fast. As for future work I've got my research dissertation deadline and exams coming up in May. I've always enjoyed giving ...

I came by this study by mistake, i certainly haven't been looking for more evidence of a shorter survival for me. it just appears every now and then when i'm online. i was actually studying mTOR pathways at the time. i should be studying for my clinical assessment this month but i've been having really bad headaches so i got drawn back into the whole cancer world again unfortunately. i wanted to be a statistical outlier but my genetics suggest that if i'm going to be an outlier then it would be at the wrong end of the graph. ''Correlation between molecular markers was determined using the mann-whitney U and spearman rank correlation tests. eight of the 26 patients with methylated PTEN died during the study as compared to the 1 of 19 without methylation. There was a trend towards statistical significance with PTEN methylated patients have decreased survival (P=0.128)'' http://www.ncbi.nlm.nih.gov/pubmed/19705067 basically PTEN suppresses the mTOR pat...

Catch Up After Norway I had a very indulgent Christmas with lots of family. Which was amazing but I let my diet slip quite massively. I remained vegan but ignored protein and calorie restriction. This theme held up for probably 7 weeks into the new year and I ended up putting on over half a stone. Which isn’t the direction I’m supposed to be heading in at all. I usually find when I’ve lost all motivation it’s because I haven’t read the research in a while and my focus turns onto my everyday life and not what I’m eating when really I need to be able to do both. Anyway I delved back into all the research and I’m leaning towards low methionine diets still. Through this I discovered cronometer which I will explain later. Family Gathering I'm back at university again, mostly coursework at the moment until February when i go back to clinical for my final clinical assessment. And people have started to get jobs already so I need to start applying soon which involves making a co...

Ørnes Ålesund Aquarium Had the wrong lens, moving boat, moving lightsource, completely missed the photograph. Dog Sledding Northern Lights in Troms Tromsø Honningsvåg For those who have been following since last october, you will know that i made a post about my bucket list. one of those items was to see the northern lights. The radiology department in abergavenny that I was working at raised a lot of money for me to do this. after a lot of research i decided the best way to see the northern lights was to go to northern norway in winter and decided upon catching a boat up the coast from Bergen and take in all the sights that coastal norway has to offer. My girlfriend and parents also wanted to come, so they bought tickets too. we boarded the MS Polarlys in Bergen which is basically a posh ferry that is used as an important transportation system of goods and people for coastal norway. we travelled from Bergen in ...

So recently i've had some new symptoms. every now and then i have this feeling like i'm in a lift thats falling very fast. it only lasts  a second or two but it nearly knocks me over when it happens. also i've noticed my peripheral vision is completely blurred. while i'm here there is a couple of recent research breaks in the past couple of months for those who have brain tumours and are interested. studies have shown galectin-1 a molecule that surrounds gliomas is what makes them able to hide from the bodies immune system. which is obviously a bad thing. but if they find a drug to target galectin-1 in the future, that would benefit us greatly. also cannabis has been proven to have strong treatment effects on brain tumours! all the conspiracy theorists who have been saying cannabis treats cancer for years and that the pharmaceutical industry have been repressing it were right to some extent. it seems to do quite a good job. obviously its not being particularly repressed...