We lost our wonderful husband and dad mid July 2020 at the age of 64. He was a high functioning man, worked in a high skilled job (pilot), played many sports and kept himself very fit. He didn't have any headaches or seizures and the only 'symptoms' he had was leg weakness which gradually turned into loss of balance. Upon admittance to our local hospital a scan showed a shadow on the brain and the MRI scan the following day was the death nail.  His biopsy a few days later revealed a very large aggressive glioblastoma grade IV and due to its size and location - within the corpus callosum - it was inoperable.  Furthermore, because he had by this stage, deteriorated so rapidly, he was not elible for any treatment, so he was able to come home for end of life palliative care.  The consultant was so compassionate and he was absolutely correct.  When he came home my husband was totally bed ridden, unable to communicate, other than say yes or no and unable to move much of his body. He arrived home at the beginning of July and 17 days later he died with his family at his bedside. We are devastated by his sudden death and it's so frustrating that so little can be done for this awful illness.

Hi 

Your story sounds very familiar. My husband (45) was diagnosed with stage 4 Glioblastoma last year. Things are stable and going as well as we could hope but the impact on our family life is still so difficult to come to terms with. We also have 3 children and I work full time (or am meant to). Some days I can just get on with things and others I just feel lost in limbo as to what's going to happen at some point in the future. 
 

I hope things are ok with you x I'm so sorry I didn't respond, I've only just seen this.

at the moment my husband is generally well.. he has finished chemo And will have a scan every 3 months. 
ive told my kids now about their dad having cancer .. but played it down , they don't know the seriousness of it all.. I'm dreading that conversation 

We are all enjoying my husband being so well but am always nervous to that it'll all wrong I'm the future 

take care xx

Good .morning. I have GBM4 I was diagnosed in July 2019 after initially being told it was an abcess. It took a week of drugs for them to come to the conclusion it was a tumour. The operation was four hours long. My family was more devastated than me,  my son was on holiday in Canada at the time I made the decision not to tell him until he came back. It was heartbreaking but I did not want to upset his holiday, if that makes sense. 

I am on Dexamethasone and other assorted medications. I have occasional bouts of confusion but apart from that am ok. I have 3 monthly MRI scans followed by phone consultation with my oncologist. If you want to chat am available 

Cheers

Hello all,

Sending everyone in this thread a massive hug x Glioblastoma is truly such a cruel disease no one should have to go through but it gives me comfort to find other people who have had experiences similar to ours.

My partner was diagnosed with GBM nine months ago aged just 28 after suffering three large seizures. He has eight tumours, and had one removed via craniotomy which led to his diagnosis.

Since then he was perfectly fine up until very recently, but in recent months hes been very depressed, developed a chronic chest infection and dealth with tiredness, back pain (due to fractured spine), loss of appetite and some confusion. He struggles with simple directions and even maths at times, despite being an LSE-educated mathematician which makes him understandably frustrated and anxious. Hes started to talk about dying a lot more recently and I, too, am finding it harder to believe he could still have several years left.

I'm so afraid things will only get worse from here, and do so quickly. His scans have shown some pretty significant swelling/pseudoprogression but have been stable, but any of his quarterly scans could change everything... My heart breaks for him every day.

Just reading your story after just losing my mum, sounds exactly like what we have just been through , I also thought mum was depressed and she was the same age, was a total shock to get the diagnosis and 6 weeks later she's gone , I know it's real but I'm struggling to come to terms with it , some days I forget she's not here , it's an awful awful disease isn't it