New to the group

Hi Mike and welcome to the club,  I'm Lee, I was diagnosed with glioblastoma incurable Brain cancer , was given 14-18 months prognosis that was 13 months ago and I feel great,  only on last week I had a change in medication and had 14 seizures in 1 day and waiting on a Brain scan , I feel great and put it down to the medication change,  the only advice to you is to stay happy and be positive and take good care

Hi Mike

a warm welcome to the online community. So sorry to hear about all that you and your family are going through. Life's cruel.

I can empathise with the situation as I supported my late husband through his GBM journey. You can read the gist of that story on my bio. 

To echo Lee's point, stay positive and active. Live life. G was initially given 12-15months post surgery. He underwent 6 weeks of oral chemo/radiotherapy then refused all further treatment. He coped really well with the treatment and the only real side effect that impacted him was fatigue which hit around week 4 and lasted for a month after the treatment regime was complete.

He was 50 when he was first diagnosed and a fitness freak (marathon runner). Throughout his journey, he kept running and it was only in August 2023 that he was forced to stop running. Even then he walked miles every day or if he didn't feel like a walk, would cycle for hours in the garage on his bike/turbo trainer. His tumour was in Broca's area of the brain so the vast majority of his symptoms were cognitive rather then physical right up until mid-2023, although his eyesight was compromised quite early in the journey.

These tumours impact everyone differently as it depends so much on size/location etc so any guidance is not a one size fits all kind of a thing. This is a safe and supportive space as you've already seen and I'm sure others will be along shortly to reach out. You're not alone. We've got you. 

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Having been in your wife's position here, there is another group within the community that she might want to explore in time Cancer carers forum | Macmillan Online Community I drew a lot of support from that group as well as this one.

For now though please try to be gentle with yourselves as a family while you process all that is going on but live for the day. Carpe diem as the saying goes.

Sending you all a huge virtual hug and lots of positive energy.

love n hugs

Wee Me xx

Hi, Im Tashie, diagnosed in July, although my tumour has been removed. I am now half way through the initial six weeks with no side effects yet, I am working and getting on with life. 
At my initial consultation it was actually suggested to just do nothing, but the surgeon did do a good job, although has told me it will grow back. 
I havent been given a time scale /prognosis but have consulted Dr Google and discovered its about a year to 18 months from diagnosis. 
There are exceptions! I am going to be one and I hope you are too!! 

Thanks for responding. I’m glad you are feeling good, but I’m sorry about the seizures. I hope things go okay for you. I’m going through my first round of chemo and radiation and generally feel mildly sick most days. Can’t figure out if it is the tumor or the treatment that is making me feel bad. Any insights would be precipitated. I feel like giving up on treatment at this point. 

Have you been given anti sickness tablets? I have two different sorts, one as a back up if the first dont  work. I take the milder one each evening with the chemo and have not felt sick . I could also take it in the morning if needed. Hope you feel better

Hi, for me I wasn't so good with my chemotherapy and put a lot of weight on,  maybe that's the steroid though,  we all have different dna they have to find the correct balance of meds and as Tashie say use the anti sickness of necessary,  you with get used to it and I wish you all the luck in the world