Positive news needed.

Hi Bob

My wife was diagnosed in Nov 22 and all going fine so far. Not exactly long-term (yet) but everything is stable - there's a kind of new normal that's set in which makes it easier to 'forget' what's going on.

I've read multiple stories of longer-term survivors, and there's a Facebook group called GBM Survivors to Thrivers which is focussed on positive stories. Maybe check that out? I read your other comment and I understand exactly what you mean about struggling mentally with what's going on. My wife finds it a lot easier than me to live in the now and I think the (mild) cognitive deficits she has mean that she basically does live in a parallel reality where none of this is true. She's lucky she doesn't have any physical deficits atm. Meanwhile I struggle, as I have to deal with everything practical, which brings the reality to the fore much more frequently.

Good luck going forward and I hope we get some super positive stories here to help our week along.

Hugs

H

Thank you so much for this! Genuinely. I could feel my chest swell and relax reading your message. And actually brought a smile to my face

All the best to you and your other half,

Bob

HI Bob

I can't really top the impact HW66 seems to have had so I'm not even going to try.

Please don't focus on the stats or any timelines that have been indicated. These are best guestimates based on published averages and no one is average. Everyone is unique and their journey is personal to them.

Focus on how things are just now and live in the moment. Carpe Diem!

My late husband was initially given 12-15 months back Sept 2020. In the end it was 38 months and one day...three times what was indicated. In those three years, he ran a PB at every distance he competed at right up to marathon, he went skiing in France, had several boys weekends away (I didn't ask too many questions about those) spent a great few days in London with our daughter and even climbed over the roof of the O2 Arena He also wangled a part as an extra for series 7 of Outlander because they needed folk to row a boat. Life is for living even if that time may be limited but at the end of the day none of us know how long we have on this earth so live in the present and  enjoy making memories.

sending you a huge virtual hug and lots of positive energy.

love n hugs

Wee Me xx

Hi, an interesting thread, I have just requested to join the FB group mentioned.  My 21 year old son has recently been diagnosed with GBM and now that I have finally stopped crying I am so looking for some more positive stories.  I did see a youtube interview recently with a young man called Alex Savage which is the most uplifting thing I've seen on glioblastoma since I started my dr google searching. 

He was diagnosed I think a couple of years ago, is still working, still doing sport and recently got married.  I think he has an instagram page as well. 

 I know as a family, we need to bring some normality and a little joy back into our lives - as others have said nobody knows how long this journey will be.  Thanks for starting off a great conversation.

Hi mate, my then 65 year old mum was diagnosed with GbM back in 2019 and also struggled to find any hope from the cases online at the time.. 3 to 6 months, 12-18 months is all I ever came across and there was literally 1 case I could find of longer than 5 years after combing the pages of google and as you can imagine I thought the worst. But one month shy of 5 years later she is still here nagging away about the dishes etc, gossiping with her mates and laughing away at comedy sketches on YouTube and Facebook. Don’t look too much into the stats and case studies and just take one day at a time. Good luck and wishing you and yours all the very best! 

all I can say is thank you thank you thank you

thanks for the positivity and energy

... and I will check out Alex Savage

Glioblastoma has made BBC front page news with this rather inspiring story. Fingers crossed this works and even if it can't help in our situations it might save future others https://www.bbc.co.uk/news/world-australia-67870595

Thanks for that. A story of hope. Made me realise the longer my wife survives the more chance something could come along to treat the cancer.

Thanks..