Untreatable GBM

Hello, 

My mum has just been diagnosed with a high grade glioblastoma. Her symptoms started in early December and worsened quickly. She was vomiting, having headaches and ear ache, weakness in her legs, she had a really bad tremor in her hands, she was confused and forgetful, had lost all ability to judge time or plan ahead, had a horrible taste in her mouth and, worst of all, her personality had changed. She has become completely apathetic and unemotional and flat. l thought she had a severe bout of depression. I took her to the doctor at the start of March and they said they would like to scan her brain. She was given an appointment at the end of April and I had to beg and beg to get her seen sooner than that. She finally went into hospital for a CT scan last Friday and got the results straight away - they said she had a brain tumour. She then had an MRI and they sent the scans to Aberdeen for the neurosurgery department to look at there. We were then told that they would be having a meeting about it on Thursday. I thought it seemed like a long time to wait after getting a diagnosis of a malignant brain tumour but a junior doctor said we should feel 'reassured' that they wanted to wait. Mum was discharged on Tuesday and we waited hopefully for the phonecall regarding her treatment. Yesterday we finally got the call. The neurosurgeons said my mum has a high grade glioblastoma. They said it is 10cm big and has spread all over her brain. They said there was nothing they could do, no surgery, no chemo, no radiotherapy. They said she probably has weeks/months left to live.

Shell shocked doesn't even begin to explain how I am feeling. I thought at the very least they would offer some kind of treatment to slow it down. The fact they aren't going to do anything makes me feel utterly hopeless. My mum is very detached from the whole situation. Her personality has changed a lot since the onset of her symptoms, she is very apathetic and unemotional. It's so hard to connect with her and I know this will only get worse.

We've been offered absolutely no support following this bombshell other than a generic Macmillan leaflet. I feel like both hospitals involved in this have been very quick to dust their hands of her. 

I don't know what the next while holds in store for us. I'm utterly heartbroken. My mum is my best friend, I can't imagine a life without her. I usually live 200 miles away from her, it just so happened I was on annual leave last week and I'm on special leave this week but I don't know what to do. I don't really want to leave her side and I don't know if that will be possible as I have a full time job. 

  • Hello

     

    i am so very sorry- what an awful diagnosis. Your poor mum.. doctors can be so cruel as well .. all some of them care about is statistics and scans and getting their job done. I'm angry about my own mums diagnosis of bowel cancer - the docs haven't made her feel good at all ...she is in shock and won't discuss it.

    we have all been in tears - cancer is one cruel nasty and evil disease and I wish we could live in a world without it.  Surely there's something they can do. They just push McMillan on us all the time and they don't bother to offer any other help. Are you in NW England by any chance? I find the docs up this end are nowhere near as good as they are in other areas in my experience..my mum is also my best friend and life without her would feel so empty she's 72 and I know no one lives forever but I never expected the dreaded cancer to take her away. I foolishly thought she'd be 90 and just die peacefully of old age! all I can do for you is offer my deepest sympathy and wishes for you and your mum. Life is so hard. Take care x

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    I'm sorry about your mum. And I'm sorry that they handled her diagnosis so inhumanely. It's like they do not consider the emotional impact of their words. We're in Scotland. 

    I just feel like they've completely given up on her. Whenever I read other posts about GBM, people are at least offered some kind of treatment to try and slow it down. They offered my mum absolutely nothing. I feel suspicious, do they not think she's young enough? (She's only just turned 64, very active and so much to live for. She had us late, her youngest is only 25 and I'm 26). Or is it because of this virus, do they not think it's worth their time trying to help her? Or have they been truthful? Is there genuinely nothing they can do?

    Thank you for your kind words.