Glioblastoma- grade 4 brain cancer

Sorry my memory has been affected, but family I was in hospital for over months. Apparently had an operation with a bit of tumour taken. All I can remember was fighting to get me home instead of hospice, as they gave me three months to live. Nearly five years still here. Live has changed so much, but all I do is take things one day at the time. A bit fed up with Consultants, Drs as they keep telling me it’s a rare form of cancer. They have no idea, all they eventually told me at last scan. It like a dot to dot my brain is covered in these little dots. They have form to bigger blocks in right and left side of brain. The right is inactive now, they are saying the right side when it becomes active it will take me. They know idea of time or how. So one day at time will keep working for me.

Yes the operation apparently showed that the cancer was like a net over my brain. 

My husband. As frontlope.   About 5cm to 6cm  got loads  out  put  there  was  three Little ones left time. They did nri at cancer  hospital.  Got bigger  so started. Treatment  21st  October.  He's  got no symtoms  no pain  should like it working.  Get answer  on Wed  now it can come back  start to regrow  sometimes.  Hoping  he's got  10. Years. Or more  with us  only.  Given 12 months by surgeon  did say if it. Works  gets better sivivsl rate 

That’s. Good. Because. My husband was dignoised.  Sept 2023. He was 55. Then only just turned.  56 in feb 

Surgeon only. Give him 12  months 

 From. The. 27th sept.  My husband started 21st October. 

Hi

I'm very sorry to hear about your Grandad and also your mother. Pleased to hear she is stIll with you 5 years later. I also have stage 4 GBM and was told they could control it for 2 years. I'm still here 3 years later suffering the same difficulties as your mum. Your story encourages me to keep on going. Thank you. 

Best wishes x

How. Long was you on. Chemo for.  Gmb4

Hi Odellell. It was 9 months tablet form of Temozolamade. How ru? Have you a similar diagnosis?

Hello all,

Just here to update on my mum, October 2017 mum was diagnosed with glioblastoma multiform. It is 2024 April and mum is she still here with us. Ofcourse there are some side effects but on the whole she is functioning and able to live her life. Please do not lose hope. I hope our story gets out to whoever needs to hear it. I wish you all the best.

Jen 

Good morning been awhile since last reply. But my life has changed a lot in the few months. Just before Xmas wife said she was leaving me spouting some stuff she knew that I would not be able to remember. 
so have moved to a new 1 bed flat and able to look after my new self, cooking etc. 
Update on my brain tumour,  memory loss of at least 15 years, very wobbly need a stick for support at all times. Still taking a lot of pills, but with support from my family, starting a new chapter. My grandkids our another reason to keep going. 
Since my wife left when trying to ask her who do I contact people about certain things. Her boyfriend was controlling her phone and would not her talk to me. What was he scared of ?? But she has finally since left him, and we have been able to talk to each and she has taken me shopping. 
she has sat with me and told me how my journey with my cancer started and eventually got diagnosed as this rare form of brain tumour.

so at the moment living one day at a time. Thanks to my dad cooking etc for myself. Down side is not being able to walk far and loss of driving license is the things I miss most. 
My consultant gave me three months that was nearly five years ago, I don’t blame him for not knowing with this horrible disease they must be very hard for them to have all the right information. I know from my own experiences working in the automotive industry, when a vehicle was presented with a new problems, would cure itself for a few months then would start again. Customers used look at you don’t you know why it was doing this problem. Especially when everything was starting to be controlled by a computer. As it got more complicated so did the diagnosis of the problem. 
My way has to take it one day at a time.