Brain cancer glioblastoma grade 4

Hi im just looking for support.  My mum has been diagnosed with grade 4 glioblastoma cancer.   She's 73.   Only 5 weeks ago she was her normal self,  I visited her that day and in the evening I got a call from my dad in a panic, my mum had collapsed and was in a bad way.   We all thought it was a stroke at 1st.   But after being examined we were told she had a siezure, had fractured her arm during the siezure and a scan had showed a build up of fluid and a mass on her brain.   At that time she couldnt speak properly, all her words were coming out wrong, she was very confused.    She had surgery a biopsy and the results maybe two weeks later.    The nurse and my mum who was  a lot better with her speach by then was sounding optimistic and we were praying it would be benign.    But it wasn't.   A huge shock,  to find out the news.   The nurse kept saying its treatable but not curable   Now since then,  my mum had consultation with neuro dr.   My mum doesn't want to know how long she's got left.   By the way she has shown amazing strength positivity and really appreciating every little moment.    She says she see colours as more vivid, music more beautiful.   She's also giving her sentimental jewelry to me and two of my sisters.    I have 3 sisters, 1 doesn't have any contact with any of us even though she's been told about my mum, she wants no contact.  Another sister started off involved but she has been absolutely awful to myself and my younger sister, then she's cut herself off.    So it's only me my dad and my youngest sister who doesn't live nearby so can only visit once  a fortnight.    I am finding it very stressfull,  very emotional and dealing with depression and anxiety two kids im struggling to keep being strong.   I want to help my mum but I feel under a lot of pressure,  my dad doesn't cope with stress gets very angry and stressy at the slightest thing and he also has copd.    My mum is due to start treatment on monday.   The Macmillan nurse has adviced me that my mum might live up to 12 months but it's an aggressive fast growing cancer and it could grow through treatment,  so it all depends on treatment etc.    I am still in shock, I feel angry, heartbroken and trying to enjoy every moment with my mum as its all the more precious.    If I try to talk to anyone I get told to stay strong and they are sympathetic but I dont feel strong.   It's just all happened really fast and a lot to deal with

  • Welcome to Cancer Chat Samanthapink although I'm sorry that your mum has been diagnosed with grade 4 glioblastoma.

    I know you're looking for support from others so I've had a quick look around the forum and found that [@Julwhip]‍ is in similar situation with her mum as well as some of our members on a discussion just here. If you want to chat to anyone just click on the pink 'reply' button under their posts. Everyone is very supportive on the forum so don't be afraid of joining in and saying hello.

    I hope this helps Samantha and that you are able to find some time to look after yourself whilst managing this difficult situation.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi Samanthapink,

    I am sorry to hear about your mom. My husband was diagnosed with Glioblastoma in 2016, and I still remember the horrible shock of the diagnosis. You mentioned your mom was having difficulty with words. This was one of the first side effects that my husband suffered, and it was frustrating for everyone involved. It takes a lot of patience to get used to.

    The more time you or your dad can spend with her, the easier it becomes to communicate. I no longer depend on words with my husband. For example, he'll say "small" while making typing gestures with his hand and I know it means he wants his phone. It takes a while.

    My husband had no pain most of the time, which I've been told is common for brain tumours. This helped.

    My thoughts are with you and your family.

  • Hi Trillian, I know you wrote this a while ago but I was wondering how you and your husband are coping now?My girlfriend has just (yesterday) been diagnosed with this horrible cancer and I'm struggling right now to cope, despite the fact she's the strongest person I've ever met and is determined to live for years to come. I don't even know if that's a possibility with this type of cancer. 

  • People can beat Glioblastoma Multiform, but the odds to do that are low, 3-5% as I understand. If it's the methalated form though, the odds are far better than non-methylated for a long term outcome as methylated version responds far better to treatment.. steriods/ chemo & radiotherapy. 

    What the odds are then if those are treated as one group I'm not sure..

    My partner's got it. 

  • I’m so sorry that you’re going through such a difficult time. I really feel for you. My mum sadly passed away 4weeks ago from the same tumour. She was 82 so treatment wasn’t an option. She was fine last September bless her.b but her mobility wasn’t great through this and she could only stand but found it hard to walk. She didn’t suffer though and passed away one morning, just closed her eyes. Please try and stay strong, I know it’s hard and try and enjoy every moment you have with her. Life is so precious. None of us know what’s before us. Please take care. Sending you love and strength. Liz. 

  • Hello Samanthapink.  Sorry to hear about your mum.  My daughter has just had a second malignant brain tumour operation.  First was three years ago.  She lives with husband and two young daughters.  Great shock to us all as regular scans being coming back clear but last couple of weeks very forgetful confused tired and collapsed.  She has glioblastoma grade 4.  I want to help in any way i can without interferring.  Can anyone suggest anything?  I just want her to recover and take her pain away.

  • Hi Liz, 

    It was confirmed today that our Mum has a Glioma tumour which is very aggressive & only treatable with steroids..it's all a very mixed up story are the hospital said it was treatable when Mum was first diagnosed with a brain tumour... now my husband, brother & family have been informed there is nothing they can do.. Mum has 12-18 months... my brother & I are just in shock today & finding it hard to deal with.. Mum seems really bright today, Mum is definitely having issues walking however we will keep her active as long as we can... just not sure what to expect, do not wish for Mum to suffer.. We have an appointment next week with some consultants! Just devastated, my Mum is 76 I just thought we would have more years with her..we lost my Dad 3 years ago so soon both our parents will be gone! Just devastating!

    i am so sorry to hear about your Mum, sounds like she went peacefully! x

  • Hi, my dad was diagnosed with GBM 4 beginning of November, they were able to remove 95% of it so we are thankful for that. 
    He's over 70 so can only treat him with radiotherapy which he begins soon. Firstly we were told by neurosurgeon we could have up to 5 years with him, the day after we were told 12 months... 

    I'm still coming to terms with it, I don't know how to deal with it so I can enjoy these last months with him, maybe it comes with time.. 

  • Hi I'm very sorry you having to go through this. I don't know if you can come to terms with it, for me it was a roller-coaster up and down heartbreaking and all I can say is, spend as much time as you can with your dad make as many memories as you can, try to be positive for him... Cry when you feel it whatever you feel let it out, you go through all emotions and look after yourself xx 

  • Hi, I thought I was resding my own story for one minute. Mum 76 had a headache for three weeks and after a CT & MRI was diagnosed with Glioma grade 4 at 16cm, we also thought she'd had a stroke and we are still in shock 4 weeks later. She is on steroids and it is inoperable and agressive. Her speech is a bit jumbled and she says she knows what she wants to say but the wrong words come out. She has lost sight in one eye and weakness in one hand where coordination is lost. Prognosis was at best 3 months but we are unsure as to time, she still looks well! Dad died 2 years ago from dementia and life seems very unfair. Anyone else have experiences of time left linked to symptoms and changes? I'm thinking of you all that are and going through such a terrible time, there are no words.