Mums Glioblastoma stage 4

After thinking Mum 80 year old Mum had the early onset of dementia, things got extremely worse where Mum struggled to remember her name and found it difficult to put a sentence together as she was unable to find the words. I took her to A&E getting her in by saying that I thought that she had had a stroke. An emergency CT scan showed that Mum had a brain tumour, the next days were appointments and medication, putting Mum on steroids allowed the swelling to reduce and allow her to speak again. 

one week later she was been taken to the theatre to remove the tumour, the surgeon rang me that night to say that the operation had gone really well. Mum was able to leave hospital a few days later and although she walked with a stick, I had my Mum back. We came home in the car and talked about all sorts, I felt as though I had won the lottery. Devastation hit a week later when the surgeon told us that the tumour was cancerous...people live through cancer though my Mum is a strong lady, our queen, undefeated...cancer or (Charley) as she likes to call it is not going to be the end of her. 

A few more days later I took Mum to Christies where they delivered the worst news, with treatment Mum has twelve months without it is 6 months, Mum has opted for the treatment. 

I'm so strong in front of my Mum but my world is crumbling around me and I feel so lost, my beautiful Mum, how can this happen...I don't want this to happen, I want my Mum!!

  • I'm sorry to hear your sad news.

    I totally understand Its a worry to potentilaly not be able to see her more than a time situation that you have mentioned. Sadly Ive been told, with the same thing as your mum 12 weeks ago out of the blue I have 3 months with no attention or maybe 9-12 months if i get operated and zapped etc which i wanted and now have had.

    God knows how long people can be around but I'm now spending as much time as I can with the people I love etc andI hope you can do the same and a bit more luck floats your mums way.

    Best, Delmar789

  • Thank you so much for sharing with me and i'm so sorry that you are in the same devastating situation as my mum.

    when the consultant asked if she wanted to know time frames she said she didn't but give consent for me to be told. She says she just wants to make the most and if they can push the time back then that's all she wants.

    She is amazing and when I am with her I am so happy and make her feel happy too even though i feel so lost when i'm away from her and can let my true feelings out. 

    You writing this to give me some comfort is so kind and selfless, thank you so much. 

  • Hi

    so sorry to hear your sad news but sounds like your mum has a fabulous attitude to it. A positive mindset seems to help. Love that she's named it!

    My husband , who's now 51, got his GBM4 diagnosis last September. His tumour is/was in the Broca's area of the brain that controls speech, language and understanding. In the space of 3 short  very emotional weeks, our world turned upside down and inside out. He had surgery to debulk the tumour followed by  6 weeks of chemo/radiotherapy. He coped really well with it all.  He was told 12-15 months with treatment.

    We're in month 11 and while I can see him declining, he's still running and cycling. ( Not too sure his oncology team would approve but there's no stopping him- he's beyond stubborn!)

    Please make sure you take time to look after yourself too. I think I've been through every emotion in the book over the past year and then some. It took me a while to realise that all these overwhelming feelings were normal. You're going through  a journey here too and you need to make sure you take time for yourself to put you in the strongest position to support your mum. Walk/run, read a book, meditate, listen to music - whatever it is that you enjoy- and don't feel selfish for taking those few minutes for you. You'll need them.

    Hang in there. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • HI

    So sorry to hear your Mum's news

    My husband (55) was diagnosed in early Dec 2019 . Like you, he had a very successful surgery and we were on a high thinking that we could beat this. Unfortunately like you again, our world fell apart on the 6th December 2019 

    Eamonn had the standard 6 weeks of radiotherapy and chemo followed by the six months of chemo. It was tough. He then had 7 cycles of Avastatin. 

    His journey ended at home with me and our two wonderful beautiful and amazing sons on the 27th Feb 2021

    My heart is truly broken but I'm grateful for the time we had.  

    I understand that you are in a spin right now. We all were at the start.  However this forum will provide support whenever you want/need it and has been a great source of comfort to me.

    The good part of "here" is that you don't need to explain yourself constantly. We all understand your pain

    Try, as best you can, to enjoy your mum and take care, when you can, of yourself

    Sending you hugs

  • Hi Wee Me, 

    I'm so sorry to hear about your husband, it must be awful for you but thank you for sharing. I read your message last night before I fell asleep and although I didn't feel like it, I took your advice and went to the gym this morning before going up to see Mum. 

    I know you will feel the same...when there is a slight delay when you wake up before reality hits, everything feels normal for such a short time (seconds). 

    I truly hope that your husband continues to run and cycle and do the things that make him happy for as long as possible.

    Thinking of you and thank you.

  • Oh my goodness, 27th Feb this year, please can I offer my sincere condolences to you and your two beautiful girls. I know that no one can make it better for you but i'm so sorry. 

    I feel physically in pain...heart broken. 

    when I went to see my Mum we talked about the song that will be played (please God) for her 81st in March (delayed 80th due to Covid). It's lean on me because when I was caring for her when she lost control of everything I always said lean on me, we decided that would be her special song for her birthday with the lyrics of 'call on me brother', to 'call on me mother'. 

    Me and my sister sang it to her today and she was smiling and clapping. I know you probably think i'm strange sharing this but it was beautiful. 

    Thank you for sharing your story of your beloved husband Eamonn, it helps me more than you could imagine. 

    Thank you 

  • Hi. We’re in a similar situation. My Dad had his operation 3 weeks ago and we were told that he had 12-18 months.  We went to see the oncologist on Friday who said it’s more like 8 months.  I really don’t believe they can put an exact time on it. They are only going to give my Dad a reduced RT dose over 3 weeks and this has confused us.  He’s only just retired at 72 from a manual job and has always been fit and healthy. I feel that as he’s over 70, they don’t seem to see the man he is by the age he is. They are testing the tumour now to see if chemo will work but it’s doubtful they say. We were so positive before but this has knocked us back.  My heart is breaking and I’m trying to think of things to plan and do but just keep going around in circles. 

    I totally feel your pain and I have no words of advice except to keep going and spend as much time as you can with your Mum. 

    Hugs and prayers for you and your dear Mum. 

  • Hello, 

    I am so sorry for the heart break. My Mum has got the three weeks RT too and a very low dose chemo. My Mum like your Dad was as fit as a fiddle before this happened, she only stopped working as a florist due to Covid. 

    Please try not to think that they are discriminating against your Dad and his age…their rule over anything is to save life. I know it’s so hard and you want him to have anything to give him a chance but they will know that it’s not the best thing  

    I understand your pain completely, it’s just awful. I just rang Maggie (support centre) to ask if they could give any advice about getting a wheelchair for Mum (as she gets so tired) and ended up breaking down on the phone to her. 

    We both have to make precious and beautiful memories with our parents and i know it’s so hard. 

    From one heartbroken daughter to another daughter or son, i’m sending lots of hugs and you too will be in my prayers. 

  • Thank you for replying to me.  Your story resonated with me and your reply has been very helpful. It truly is heartbreaking for this daughter too. I’m planning on trying to speak to a counsellor next week as I’m one of these people who needs all the information so that I can deal with situations better. My Dad is also very tired now and I was also considering a wheelchair just so that we can get out. How is he supposed to enjoy life to the full when he gets so tired and hasn’t even started treatment yet? That’s what I need to talk to someone about. 

    I will look up this Maggies too as I’m looking for help from anywhere right now.

    Thank you once again and sending hugs your way x

  • Hi, 

    You are so welcome. I’m really struggling at the moment. Although they explained Mums treatment and asked Mum questions like do you understand the stages of cancer  and do you want to talk time frames. I now know that mum doesn’t understand, she doesn’t realise that she is terminal and i just  can’t tell her. i’m going to ring the nurses and ask for their advice. 

    I don’t know what to do for the best, i feel like screaming at the top of my lungs  

    i’m so sad all the time and feel like i’m going to have a panic attack when i’m in groups of people. 

    Sorry i’m having a bad couple days/weeks.