Hello everyone, I’m literally confirmed today I have glioblastoma, I’m awaiting my first bout of treatment, any help or advice however small would be so appreciated regards Sean x
Hi Sean. its a scary place, being newly diagnosed. Happened to me in July. Is your diagnosis following surgery or is that yet to come? Honestly, my best advice is stay positive. You have probably googled, looked at you tube and read some of the postings here. Maybe feel a lot worse for having done so! we are all different but my story so far is a positive one. (See time line in my profile) hopefully you will go the surgery/ radiotherapy/chemo route…and have many healthy years ahead! Do feel free to ask me any more specifics.
Hiya Tashie and bless you for replying! Absolutely spot on I’ve looked at a few articles and yes it’s been a bit of a minefield! I had my operation on the 2nd dec and after the mri scan was told they’d removed everything so a clean slate. Now awaiting chemotherapy and radiology face to face appointment
thank you for your offer and I’ll gladly take you up on that glad your all ok so far, was the tingling your only symptom?
Oh brilliant…they got it all! Me too!! Yes, I just had tingling which initially I ignored and even cancelled the first MRI as I was going on holiday, which I did.
Probably now, they will make a mesh mask for you and you will have 6 weeks Mon to Fri of radiotherapy. You will have oral chemo at the same time.
I had no side effects from these.
Then, another scan, then stronger chemo for 6 months which I am going to take before bed today, but this will be only 5 days in 30.
One thing worth mentioning which my oncologist said the other day…if you have a hobby, painting, musical instrument (piano in my case) do this a LOT. Apparently other parts of the brain then take on more of that control, so if as happens, the treatment affects heathy cells, it will not matter.
sounds very encouraging for you I’m so pleased for you, I had small weakness on lhs of body, which I’d put down to a fall at work from tiredness which I thought was from an undiagnosed diabetes fatigue! Literally diagnosed on the 25th nov spent few days in hospital had op on mon dec 2nd so still bit sore and then returned yesterday to see the neurological team who confirmed the glioblastoma.
my problem is I’m recovering at my parents in south wales so having to change the oncology I’m going to have my treatment, so dealing with op, diabetes and obviously the forthcoming treatment!
That’s interesting information thank you, I must admit I got a lazy brain but I’m determined to do things to tax it in my time!
First appt, you will have mask fitted, then marked up, all takes about an hour. First session, takes a little while to get positioned, and the mask clipped into the bed. Then the radiographer leaves the room ad you slide in the tunnel, the”brain fry” is about ten minutes. Diet. I have always been vegetarian. I keep sugar intake low, but I havent changed diet. I did have a chat with the surgeon about diet and he didnt feel it relevant.
My husband is 17mths post diagnosis and is doing comparably well.He had the majority of his tumor removed and was back working part time now full time fairly soon after op.
He is still on chemo once a month and hasn't had any major side effects.He trains and coaches sports 3 times a week.
His main issue has been short term memory and I suppose emotional side effects being his tumor is frontal lobe so he's personality is a bit different - but then again I'm not entirely sure he is aware of this, so that's more my issue..But for now things are stable and normal as they can be.
I wish you well Sean , I've found this forum very supportive and informative.
