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I’ve lost my Mum to glioblastoma and I’m lost

JulesyB
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I'm 35 and I lost my Mum, my best friend, to the most aggressive brain tumour which came out of nowhere and stole her from us. On the 4th December I had a phone call from my brother in Ireland to say that Mum had gone to the hopsital to get some results of a scan and she had a brain tumour. They said it was the shape of a butterfly and that she would be transferred to Dublin for a biopsy. 

I was at a work meeting in Yorkshire and so I left to get to an airport and get myself and my two older sisters over to Ireland. From that day I think I was in shock and also running on fight mode, I organised our flights, car, hotel, I immediately started looking up information on this evil tumour and I saw the timelines the research suggested. It was like someone had hit me so hard I couldn't breathe. 

on top of that, because Mum always wanted to make sure we were all OK and not worry us with things, we then discovered that my Dad (who is a fair bit older than Mum) had vascular dementia and prostate cancer. He couldn't be left on his own, and Mum was not allowed to leave the hospital. 

I was by her side almost constantly from that day, and waiting whilst they did the biopsy, from which she was never quite the same, I've got a lot of anger inside over that as right up to having that done she was still walking and talking normally, but after that she battled hard to get back up and walking and talking. She was so determined, that we were able to bring her out for day trips at Christmas to my brothers house where all of our family were together to be with her and make it as lovely as we could. 

On NYE I was at home in the UK, I had a 20 min call with Mum at midnight and it was just like things were normal, even though I knew she was in the hospital. The next day she had her first seizure and after that it was a week by week decline. They said we wouldn't be able to bring her back to the UK, but we had to bring Dad as he couldn't stay in Ireland living alone and I knew neither he nor my Mum wanted him to be put into care. So my husband and I decided he would live with us and our 4 year old daughter. Again, I think I was in fight mode, organising everything, flying back and forth to Ireland to be with mum, I kept hoping I could somehow get her back to the UK because then dad could see her every day. I asked the amazing hospice in Galway, and to my surprise they said she was stable and they would allow her to make the long journey by boat, I then managed to get our local hospice to agree to take her, and booked a private ambulance. I was with mum the entire time; for the week leading up to our journey, we watched films and I talked to her and helped her with her drinks, she always loved a cappuccino, and she was still able to eat and drink and communicate with me. On the day, I asked the ambulance crew to stop by the ocean so Mum could see it one last time, which they did. We made the 10 hour journey, by ferry, and I held her hand the entire time. 

she was so determined she was going to make it to our UK hospice, and she did. We arrived at the hospice on 1st Feb, and from then we were all with Mum every day, my husband and I took our daughter in, and my Dad as much as possible, I think it became a new normal and in my mind I think I believed this was just how it would be from now on, mum would stay stable and just be there and we'd see her every day...

On the 18th Feb the Dr called me to say that she didn't think there was long left, Mum had declined. I was there within the hour. I went into Mum and she looked at me and I told her that I loved her, that I wasn't leaving her side and that we'd all be with her. She nodded and then closed her eyes, I called my brother and he immediately left his work and got on a ferry to come over. 

Both sisters, my Dad, my brother, one of my nieces and my husband and I were all with her, talking, holding her hands, and were all with her on the 19th Feb when she finally decided she'd had enough and passed away. 

I am the youngest sibling and I seemed to take on the role of comforter, I cried, but I also felt I had to support everyone else. I guess I get that from my Mum. I never thought I would be strong enough to cope with being there watching someone I loved so much pass away, organising a funeral, all whilst trying to 'be strong'. And now it's almost July, I discovered that I was pregnant not long after Mum passed away, with our second. I know she wanted me to have another. But I'm struggling to connect with the bump because I feel like it's not fair that this little bean won't ever have one of Mum’s amazing hugs, or hear her laugh. 

I've also been caring for my Dad 24/7 and the whole COVID situation has meant I've had no help from my older sisters, one seems to have high anxiety about getting involved in the care and doesn't seem keen to spend a day to give us a break. Sorry I know this is a long rambling post. 

I worry there's something wrong with me because I've not cried floods every day like I thought I would, it comes over me at random in strong awful waves and when I cry it's like my heart has been ripped out. But now its been 4.5 months I feel that everyone outside of my closest family, is expecting me to be OK. But I'm really not, some times I just want to be with Mum, wherever she is. I can't bare the thought of living the rest of my life without her. We talked or messaged every day, and I feel like there is a huge void that noone can fill.

i try to be strong for my little girl, I get up each day and try to carry on as normal. I also made a huge career change which I told Mum I'd do when she was in the hospice, and I'm going to re train as a teacher, after years in marketing. I suppose it all made me evaluate my life and that time is so precious I had to have more time with my daughter/s. 

So sorry for this long ramble, I just feel like even though my husband and my best friends have been so supportive they don't quite get how it feels. I just feel so alone, and whilst on my face I might look like me, inside I feel despair and loneliness and I'm not sure how I can ever feel 'normal' again or feel happiness again. 

xx

  • Offline in reply to JulesyB

    Hi all,

     

    im sorry to jump on the chat. I lost my mum to a glioblastoma on the 26th June and I feel like my world has been ripped apart. On the surface, I'm functioning fine and I've been continuing at work since she passed but when I'm on my own I feel like I'm drowning. I just miss her so much and feel such a guilt about her being ill and passing away. She went from fine and healthy and fit one day to having a bleed and being diagnosed with a brain tumour the next and the bleed caused her personality to change and she was never my mum in the true sense again.  From diagnosis to her passing was 12 weeks. She was my rock and I loved her so much and now I don't know how to fill the hole inside me x

  • Offline in reply to Bry1985

    Hi there

     

    I am the original poster. I just wanted to reply to let you know that you're not alone, this community is so supportive. 
     

    my Mum was gone within 11 weeks from the shock diagnosis and being her normal self to being gone. I understand and I'm sending you so much love. 
     

    my Mum was my best friend, and truthfully, every day is hard, I think about her every day, I think about what she would say, or what advice she would give, but it is hard. The best advice I have is if you can, to talk about everything and anything you feel, let yourself go through the emotions and don't shut away. Each day, one foot in front of the other, don't pressure yourself, if you need a day laying in bed or watching box sets to get through a day. 
     

    here if you need xx 

  • Offline in reply to JulesyB

    Hello JulesyB,

    Thanks you for your post, my Dad was last week diagnosed with stage 4 glioblastoma. This has come out of nowhere, he has never been ill in his life, never spent a day in hospital. He is 76 and we were told that he could have chemo/radiotherapy but it would be pretty pointless and cause more pain to my dad. They have told us it could be just 3 moths left, my mum is being strong but I think she is holding so much in and my dad is still always smiling and thinks he will be fine I just dont know if this is because of his condition? He was never a moaner and he never liked to make a fuss. I just wanted to say thanks for your post!

  • Offline in reply to AJPatel

    I am so sorry to hear about your Dad, and I am sending so much love out to you and your family, I know how painful and difficult it is. 
     

    If it is even remotely helpful, I remember myself being almost in a state of a false sense of security that Mum was always OK so surely she would continue to live, and I've come to think that, that was my brain's way of protecting me from the shock of the situation.
     

    Here if you need a friendly ear 

  • Offline in reply to JulesyB

    Thank you so much for replying it means so much to speak to someone who is/has going through this. Dad will no longer be going back to hospital and will now be taken care of by the hospice and pallative care team.  At the moment he is at home and we want to keep him here if possible. I hope you are getting back to a bit of normality and if you need a chat I am always here.

     

     

  • Offline in reply to AJPatel

    Hi Aj did they not offer your dad any treatment?

  • Offline

    Hi JulesyB,

    Having read your original post it was exactly the same for our family. My dad was taken in on Mother’s Day this year where he had a loss of feeling / balance in his right side - little did we know the outcome would be glioblastoma! Your story resonated with me as my dad was never the same post biopsy…he never regained control of his right side albeit some finger / toe movements, he had to use a Sara steady to get up / down and use a commode. 

    From mid March he was taken from us on the 9th July this year, one week after completing radiotherapy. We got to spend the day with him which we’re all grateful for but it doesn’t make it any easier right now. His funeral is this coming Friday which I’m dreading as it’s going to feel so final.

    I’m a little angry and feeling guilty which I’m sure will pass. I also wish I could get in a delorean and go back in time to change the outcome.

    Thank you so much for your original post.

    Chris 

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