1 year update chemo, radiotherapy, surgery.

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

high grade scan results

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

Trial Drugs, Growth, Epilepsy, conventional treatment, 2018 update 1

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,

Fears and Frustrations

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

Treatment Decisions and Post OP Scan Results

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

3 month post op Update

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

2 Month Post Op Complications and treatment options

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