Ben's Brain Tumour Blog

I’m 4 weeks out from surgery now. Recovering well, the scar is doing fine. Still a lot of swelling in between all the cuts that doesn’t seem to want to go anywhere. Bubble Wrap The air has finally started to leave my brain. There was a pocket of air where my tumour used to be but they said that it would find its way to the surface eventually. This happened for the guy who had surgery on the same day as me within 3 days. Whereas it’s taken me four weeks. People describe it as a bubble wrap popping feeling. And I suppose it does. i can hear it as much as feel it. It sounds and feel like popping corn going off inside my head. Diet My diet has changed all over again. Upon further research on ketogenics it turns out all the success was coming from glioblastomas which I do not have and are genetically different to my tumour. it’s likely my tumour can use ketones to grow. So that extremely challenging diet probably wouldn’t help me that much. Calorie restriction on the other hand s...

I was a bit worried that the journey home so soon after the Op would be problematic due to weakness/pain/nausea but in the end I was perfectly well, if not as strong as normal, the main trouble was public transport. With the tube strikes getting around London on road was slow and painful, then with the floods destroying our trainline home my brother had to pick us up halfway. Being home post-surgery is nice; I have had a large weight taken off of my shoulders, and I can now move on with the rest of my life. I feel very fortunate because as far as I know surgery was relatively successful, i.e. a good resection with no side effects which is important because the studies about resection size that I’ve read suggest the amount of resection makes the difference of months in high grade tumours and years in low grade tumours. Although until my post-op can exact amount of resection cannot be established. I also had a nicer diagnosis than expected, although this is up for debate also as diffe...

Okay so today was going to be one of the defining days of this whole blog. Depending on the results from today would completely alter my treatment plan. If it was high grade it was going to be radio and chemotherapy. If it was low grade it would be a watch and wait with regular scans sort of action. Anyway, so my diagnosis is an infiltrative diffuse oligoastrocytoma, which is more than I could hope for. Diffuse means its low grade or grade 2 instead of 3/4, which means a number of things such as slower growth rate and less aggressively invading surrounding healthy brain tissue but it still does hence 'infiltrative'. 12.4% of tumours are low grade. Less than one percent of all brain tumours are diffuse oligoastrocytomas astrocytomas are the most common type of brain tumour and include glioblastomas which are the really scary ones.  However my tumour has another type of glial cell present in it called oligodendrocytes, which from my understanding are the cells that cr...

So this will just be a follow up from rene’s update a few days ago. Its going to be a very long description of this week from my point of view. I’ve now been discharged on day four post-surgery. Which I’m thankful for because hospital felt like one very long sleepless day. The only good sleep I had was during surgery. Since then getting comfortable on my ward bed has been an impossible task. Either due to head pain or hot flashes that I seemed to keep getting, felt like I was going through the menopause. Maybe it’s a reaction to the cocktail of drugs I was on. Maybe not. The ward was extremely hot anyway and no real way of cooling yourself down during a hot flash. Rene was a good carer though and seemed to enjoy pouring freezing water from damp cloths on me to shock me and cool me down. On the Wednesday we turned up and waited in surgical admissions for a while, where I met the other tumour patient who was having surgery the following day. Nice guy, who seemed far calmer than me ...