Ben's Brain Tumour Blog

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...

the residual tumour mass is a large C shape occupying the superior, inferior and lateral borders of the cavity with most of the mass at the superior and inferior poles. no growth to be seen anywhere, slight shrinkage of the inferior mass even! no uptake of contrast on the gadolinium scans so there isn't an abnormal blood flow going to the tumour. the right lateral ventricle that was once squashed to non existence by the tumour is now larger than the left because the shrinkage of the cavity has pulled on it, so their is visual evidence of my brain changing shape which explains the symptoms when i get them. it was a long day travelling from swansea to london and back with rene. but i got to see matt in london and it was good results so it was a good day really. i had a bit of a seizure on wednesday night unfortunately and i took extra keppra to get through the night which has left me zonked today. but its all good. i can concentrate on uni and norway now :)

I'm still currently on placement in carmarthen (west wales). its going well so far and i am enjoying it. it has had some challenges, frequent headaches and lots of fatigue but its been managed okay with pain killers and naps after work. last week didn't go so well because of the stress and worry of the upcoming scans on tuesday i haven't been sleeping so well and because of that, the seizure activity has increased also. the level of anxiety regarding next week is making me feel physically sick. a feeling every one of you who has check-up scans post treatment will know all about. anyway, i hope everyone is doing well, and i'll check in again after tuesday.

just a quick update, I’m back at university for my final year of radiography, which starts in placement exactly a year after being diagnosed. So I’m back in hospital working this time which is much nicer. As expected fatigue is quite high, but its manageable at the moment. Good to be back in a normal life. Only One or two people here know about the tumour so I’m treated normally, so it doesn’t come up in discussion, so I pretty much forget all about it, the supplements and meds have become such a routine now that I don’t really think about why I am taking them so it rarely crosses my mind apart from when I get headaches. All in all, I’m very happy and fortunate to go back to an almost normal life for now. next scan on the 21 st October.

Return to Wales As the title infers, I shall be returning to university next month for what will hopefully be my final year in radiography. Until this month it’s been far to the back of my mind. However, every night this month I have been having nightmares involving returning to university, so subconsciously I must be quite worried about it. Although, it makes a nice break from nightmares about the tumour growing again. Because I’m going into another new university year group (for the fourth time in my life) and everybody I know from Cardiff has now moved on elsewhere, I only know a few people in the city now. So I decided to return to university halls to make things simple with going back instead of finding a room etc. However, I will not be in Cardiff for the first 6 weeks of university because the third years are returning straight into clinical placement. I don’t know where I will be yet. Unfortunately it feels like I have forgotten everything I should know, and trying to re...

a few things to discuss this month, some good, some not so good. I went back up to London this week to meet a neurologist who specialises in low grade gliomas. it was 10 hours on a train for a 10-15 minute meeting. thats not anybodies fault its just what we deal with our appointments because we chose london. my coccyx is still sore today from all that sitting. so the discussion was to be about my genetics primarily but everything else came up in discussion too. he pointed out the area in my cavity in which he believes all the residual tumour is left. i knew that there would be some, but actually looking at it still there in my brain made a difference in my mind as to how real it all still is, because in between appointments i don't really think about brain cancer at all. i did all the research as to what i want to do about it as far as lifestyle changes goes and i have been doing it long enough now that they have become habit without really thinking about why i'm doing them...

so yesterday was my MRI scan and we got the results back today. no new growth, the tumour cavity still looks a mess and has changed shape a bit which is the likely cause of the seizures. so all good news their. the anxiety of scan and results days takes it toll. i am exhausted now. in weirder news, i got a message on google + from a guy in america saying some lady was using my scans to gain attention and money. it had gone so far that even william shatner had retweeted her. i'm not really sure of the extent to all of this, and whether she really was sick or not. but its weird all the same. she had shaved her hair and borrowed pictures of chemo drugs from other blogs aswell. i've scrubbed out her name

sorry about my absence from the blogging world for the past two months.  Stuff has been happening but I just never got round to writing it down and now I guess I’ve forgotten most of it. I’ve been keeping up the general plan of action but it hasn’t gone as smoothly as I’d have liked. I’ve had a few minor seizures and a lot of myoclonic jerks and headaches in the past few weeks and similar feelings in my left leg to what I had pre-surgery. Obviously I’ve found this both disappointing and quite worrying. But reading other blogs has made me aware that symptoms’ coming back doesn’t necessarily mean the tumour has come back, although sometimes it does. Anyway, I have a scan on Monday to see what’s going on inside my brain, hopefully it’s just changing shape again. Also a fellow astrocytoma blogger made a post about studies showing that glutamine being the primary carbon source for astrocytoma growth. Glutamine is the primary amino acid in most foods containing protein. I was on t...

I felt bad leaving my blog on such a depressing note since my mood and outlook has been better for a good week now. Just like with diagnosis, it took a few days to accept the new prognosis, and then you get over it and move on with life. I’m fairly symptom free at the moment so its easy to forget you have any sort of life threatening disease which does wonders for my mood. I’ve had a few  headaches, but the anxiety I used to have is almost non-existent so it doesn’t worry me. I know the headaches are just the brain changing shape and not new growth. my nerves are knitting themselves back together on my scalp, and i get a feeling of running water down my face everytime this happens. Birthday I had my 24th birthday this week which was nice. Rene was down and I went out for a meal with family and friends and jack managed to get the chef to make me a vegan meal. So that was nice. I got a lot of vegan chocolate for my birthday. And I ate over half a kilo of it in the 3days foll...

Scan I was expecting nice clean lines and a cavity, maybe even no hole at all. All of the pot resection scans I’ve seen are removal of outlying tumours near or on the surface, they always seem to be very neat and tidy. Mine was nothing like that. Hopefully one day I can get a copy to show. It hasn’t been reported on yet so I don’t know the official verdict but it looked a mess to me. The cavity held different density fluids and there were some areas of uptake that were hopefully scar tissue rather than residual tumour. But I wouldn’t be able to tell the difference. They might not either. If it doesn’t grow it means its just scar tissue, if it does it’s tumour. I’ll have to update when I have an official report Genetics There are a couple important genetic factors to look for that affect prognosis. Positive for IDH1 – most Gliomas that are grade 2-3 contain this gene, it is beneficial to survival to have it as not having it people tend to be classed as pre-glioblastoma. H...

One of the largest problems facing people with cancer is the feeling of helplessness because your life is sort of out of your hands, but there are a few things you can do to perhaps have bit more control. Obviously this is touching the surface and only going to go so far, but to me it’s better than sitting back and letting fate happen. After much research in the past few months I compiled an action plan to follow. By research I mean loads of books and hundreds of studies based around lifestyle choices and a few about treatments. But for the most part treatment is out of my hands so I didn’t go to deep into that for long. Although there is up and coming stuff that looks great. Just not ready for general human consumption yet. I’ve had this action plan for about 6-7 weeks now but decided to post it as a blog post because this blog gets enough views through people searching google about brain tumours that It might help someone else as not everyone would have the time or inclination...