Welcome to the Cancer Chat community Ronstar although I'm sorry about your recent diagnosis.

Hopefully some of our members who have been on this journey will share their experiences with you soon but in the meantime it may be worth giving our team of cancer nurses a call as they may be in a better position to help with your questions. If you'd like to speak with them, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Wishing you all the best with the next steps.

Kind regards,

Steph, Cancer Chat Moderator

Good morning I was diagnosed with level 4 glioblastoma in July last year was taken to hospital same night, had the operation a week removed 100% of the tumour  and touch wood apart from occasional headache feel good. I have been told it is treatable but not curable but hey ho it's good to be alive 

Ouch sounds painful and im sorry to hear this happened to you. Im still waiting for a treatment plan so I'm guessing they aren't overly worried about the tumour ? No news is good news as they say. 

This covid doesn't help but they will have a plan in mind. My wife has been badgering my consultant recently because my MRI appointments are normally every 3 months and consultation is over the phone and they not keeping us upto date with regularity.

In regards to the tablets, yes I am on a cocktail of meds daily, had problems initially as my platelets were low so was having blood tests weekly (hate plasters) but ok now. Do you wake up about 3am I still do even now. 

Yes covid has a lot to answer for at the moment, im due a phone consultation with the doctors in just over a week so hope to get more answers then. Yes 3am is the usual time for me to start staring at the ceiling. 

It seems to be the norm to people with our condition I have been told. They seem to have an idea if they have booked in a phone consultation. Have they said what tumour and level you have? Sorry if prying

No, it was diagnosed in a local hospital close to where I live and then passed to a larger more specialist hospital (apparently not allowed to mention the name )

I'm just completely in the dark with it all very frustrating  

I was originally diagnosed as having had a stroke and taken to local hospital. It was there after CT and MRI they said believe tumour, when transferred to larger hospital they said not a tumour it is an abcess but as I said a week later was confirmed by consultant it was a tumour. 

If they are worried they will call you in straight away. Just see what they say and fingers crossed for you 

Mine was originally thought to be epilepsy as I had had a seizure at work but after several scans I've been told I have a tumour that is located on both the left and right side of my brain. I have a neurology nurse phone me once a week and have been for more advanced mri but apart from that I've not really been told much more ? Just want to know now. 

I can understand that it is the not knowing that is the worse. Mine was on the left hand side of my brain. If it was bad I dont think they would keep you in the dark that long.