Cancer Research UK main site

Losing my mum to Grade 4 Glioblastoma.

kate44
Offline

Hi All,

I'm 26 and my mum is 53. my mum was diagnosed with a Grade 4 inoperable glioblastoma on March 24 this year. Before this my mum was a leading individual at her organisation, smart, witty, incredibly active and living her life to the fullest.

mum has deteriorated so quickly following diagnosis and now can barely walk, has terrible short term memory, sleeps a lot and often gets very confused and forgets what she is doing. I am trying everything I can to help her, taking her to all the hospital appointments, getting her to eat right, helping her shower and dress but none of it seems to help. She struggles with her face being swollen from the steroids and the hair loss from radiotherapy making her look ill. She is pushing her friends away as she feels like a burden and no matter how many times I tell her she won't believe me.

I have no idea how much time I have left with my mum but this feels so cruel and impossible. She's 53 years old and used to do spinning for up to an hour a day and yet now I barely recognise her. I see some aspects of my mum occasionally but they are becoming rarer and rarer. I now feel I am parenting her and it's so hard to look after her when I feel myself breaking constantly. I have to take time out sometimes just to sob in the toilet and I just don't know how to cope. I feel I should be trying to be positive and doing anything a d everything I can for my mum but she keeps telling me not to put my life on hold. I want to be with her every second and I feel I am wasting time by going to work or going out with friends, but also I don't want to feel like I'm giving up by only being with her all the time as though we are just waiting for her to die.

km trying to look into private treatment options like immunotherapy but it's all a complete minefield and I just don't know where to start.

im so devastated and angry that my mum will never help me pick out my wedding dress or meet my children and I can't bare to think about losing her. 
I don't even know what I am asking for advice on but they always say a problem shared is a problem halved so here I am. Any similar experiences would be greatly appreciated.

  • Offline

    Dear Kate,

    I am so sorry to read that your mum has this devastating and cruel illness. My dad passed away In September 21 from the same illness age 62. He lost his short term memory and didn't make a great deal of sense towards the end of his life. Dad slept more and more and his mobility deteriorated, it's been so awful I miss him so much. 
     

    I read you post and can relate to everything you have said. My sisters and I helped my mum care for my dad, the sadness was and still is completely over whelming, he passed away at home.

    Here if you need to talk anything through xxx

    Love Sarah xx

  • Offline in reply to snow-drop

    Hi Sarah,

    thank you so much for your reply and I'm so sorry about the loss of your dad.

    brain cancer just seems to be such an awful beast, affecting every single thing about that person. It's just me and mum and I'm so scared about losing her, I'm almost detaching myself from that reality convincing myself there must be something or we will be the percentage that lasts for a few years but I'm not sure if that will make it worse in the long run. I think it's the speed of the deterioration that I'm struggling with, I just have no idea if I'm doing the right thing.

    thank you so much for replying and I'm so sorry for your loss again 

    Kate xx

  • Offline in reply to kate44

    I look back at the things I did when I cared for my dad I think gosh how the hell did I do it! The answer is you have no choice.

    You are doing the right thing, but you will need some outside help at some point. You need too speak to you GP they' should get in touch with People too help you.

    Take each day and take a positive no matter what it is,  we managed the pain ourselves and there wasn't any pain. Your doing the best for her, it's so hard for you if your on your own with no help.

    Love Sarah 

  • Offline

    Hi yesterday I went through the same diagnosed of my brother aged 53 

     It's so cruel tumor. I cannot stop crying .  Everyday is so precious. Just total heart broken

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.