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

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

Parents
  • Hi Julesy,

     

    I'm 29, and lost my mum almost a year ago to tongue cancer. Even saying 'almost a year ago' makes me want to throw up. Just this morning I had a panic attack in my shower and had to be scooped out and looked after all day. BUT. Today is a bad day, and I'm at the height of my anxiety as I turn 30 next week, and the thought of doing it without my mum is heartbreaking.

     

    When mum died I had to step up - my family fell to pieces, and nobody could cope. My mum was the cornerstone of our family, she held everything and everybody together and I just assumed that role when she was gone. I kept going, I pulled her funeral together, gave a 10 minute speech with no tears, I sorted through her things and bank details whilst my dad sobbed. Now 10 months on, he's coping so much better (thank goodness!), but I'm now really struggling.

     

    It does 'get easier', but when I have bad days, they are really bad. I don't think you will ever feel normal again, but then why would you want to? This isn't your old normal, this is a new normal, with a gaping hole in your heart which will never be filled. You will however, learn to enjoy other things, new things, more than you thought ever possible and even though that hole will always be there, it will become smaller as your heart grows more. That's how I see things anyway.

     

    My fiance is incredible, but he doesn't understand loss the same way you or I do. You're never alone though, just remember that. I've never written anything on here before, but I was just searching for some help myself and found your thread and needed to reach out. If you ever want to talk about it, you can with us :) L x

  • Hi Sunflower Girl, 

     

    Thank you so much for sharing your own story with me, so sorry for your loss also, I am sending you so much love for your birthday, I can completely understand how difficult that will be, equally, I am more than happy to chat anytime, just knowing that there are others who totally understand this utter despair and void, does help.


    It's comforting in a way, to not feel alone in this new world where everything is just that bit dimmer.

     

    I read something about grief being love with nowhere to go, and that really resonated with me. I try to tell myself that I need to think about how lucky I was to have such an amazing mum, that she gave so much love and shaped me into a stronger person than I realised I was, you're so right, it's a new normal, perhaps my head is still blocking out the deeper grief, it's almost like I'm scared to let myself feel that because it is so painful.

     

    Its so nice to hear that you have a wonderful fiancé, sometimes even though we are taking on the role of the rock, we still need someone to hold us up when we sag. I seem to sag most at night when I relive it all. I like to think that Mum is around me though somehow, watching over us. 
     

    I love what you say about the hole growing smaller as the heart grows, that's a lovey way to look at it.

     

    Thank you, reach out anytime you need to, I really feel like talking helps, especially when it's with others who completely understand.

     

    J xx
     

     

     

     

  • Yes it's Tonkin's model of grief - look it up, I found it was the only thing that made total sense to me. I watched a video of this ball of pain consuming all of your life and heart, and then over the months and years that followed, your life and heart becomes bigger and so that grief becomes a smaller part of it, but not smaller in itself.

     

    I'm the spitting image of my mum, we worked at the same place, doing the same job! So having to walk back into work, with all these people that knew and loved my mum was so difficult but also comforting. They can see her in me, and I'm surrounded by many of her friends who have become my friends also.

     

    Shes the fire in my belly that makes me get up in the mornings and go to work. I feel a huge sense of pressure to not let her down. At night is also the hardest for me, my brain remembers that I haven't thought about her in a while and throws a picture into my head of her dying. Memories replayed like horror movies in my brain, over and over. I'm not at the point of remembering the good things yet, my brain is too foggy with the bad things usually.

     

    And OH THE GUILT! I can't believe I said this to her, I wasn't there at this appointment or didn't tell her I loved her as much as I should have done. I made her cry when I should have just loved her! It's awful, and totally consuming if I allowed it to (which a lot of the time I do!).

     

    I started a bereavement group online called Sun Support Group for young adults, after finding there were no groups suitable for me around. They were all 60+ of under 16's. I'm glad I logged into here today, and spoke to you. It always helps to talk things through. x

  • I bet she is so proud of you for getting up each day, especially as it must be so hard to be surrounded by the people/the place full of memories of your mum. That takes huge strength.

     

    I will look that theory up thank you, it's certainly sounds like a concept that would make perfect sense, and I also get the guilt part - why did I get annoyed that time, or why didn't I say this or that etc but then I try to think to myself if I'm spiralling; she loved me and she knew how much I loved her, and being a mum myself I know that even if my little girl ever makes me sad I love her all the same and I think our mums would have felt the same. 
     

    That group also sounds like a good idea thank you, I will look them up as well. I am glad I posted; it's been really nice to connect with someone who completely understands it, and genuinely; if you ever just need a rant etc... please do reach out, you've really made such a differnce in sharing that, it has definitely helped me to feel less alone in the 'new normal'. 
     

    Meantime, take care 

    x

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  • I bet she is so proud of you for getting up each day, especially as it must be so hard to be surrounded by the people/the place full of memories of your mum. That takes huge strength.

     

    I will look that theory up thank you, it's certainly sounds like a concept that would make perfect sense, and I also get the guilt part - why did I get annoyed that time, or why didn't I say this or that etc but then I try to think to myself if I'm spiralling; she loved me and she knew how much I loved her, and being a mum myself I know that even if my little girl ever makes me sad I love her all the same and I think our mums would have felt the same. 
     

    That group also sounds like a good idea thank you, I will look them up as well. I am glad I posted; it's been really nice to connect with someone who completely understands it, and genuinely; if you ever just need a rant etc... please do reach out, you've really made such a differnce in sharing that, it has definitely helped me to feel less alone in the 'new normal'. 
     

    Meantime, take care 

    x

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