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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 Paulus

    Thank you so very much for your kind words, my heart also goes out to you for everything that you've also been through. 
     

    I promised my Mum that I would take care of Dad, and I hope that wherever she is, she feels that I am making her proud. 
     

    A friend said to me only the other day, that a photo I shared of my little girl looked just like my mum, and that really gave me a boost. Someone said to me; that she lives on in me and in my children, and I also read that our energy never dies, it remains on this earth. 
     

    I have got in contact with Cruse bereavement team and I am waiting to have someone allocated for my sessions with them. I think after that, I might still need a private counsellor, but will see how it goes.

     

    meantime, sending love and support and so glad I posted, it's good to not feel alone in this new normal.

     

    Take care 

  • Offline in reply to Sheena67

    I completely understand how you're feeling, and with the restrictions of covid on top I really feel for you and your family. It doesn't feel like it, but you will get through it, I am almost five months into this grief, and looking back to when I too had to plan the funeral I don't know how I did it. I chose a purple dress and bright shoes, and I got a bright pink dress for my daughter, my Mum loved Purples. I read out a poem that I wrote for mum and somehow held myself together whilst everyone else cried. 

     

    Now I think somehow, we're stronger than we ever realised. But it's just one step, one minute, one day at a time. I feel the same, some days it comes over me and it's such a deep pain I want to scream that I want her back, I can't be without her. Someone told me that she is a part of me, so she is always with me, I know it's not really much of a comfort - but we have been so lucky to have had amazing mums and they have given us the tools to go on in this world. 
     

    Please know that you are doing absolutely amazingly just by getting up each day, and being there for your dad, hold on to each other. If you can, talk about your mum and all of the wonderful things you have done together, feel all of the emotions that come, let them out if you can, and we are here in this for ssupport and a listening ear.
     

    xx
     

     

  • Offline in reply to Sheena67
    Hi Sheena, thank you for sharing your story. I am so sorry to hear you lost your beautiful mum to Glioblastoma. I lost my younger sister to Glioblastoma last year, she would have been 50 this week. My sisters death was similar to your mums, seeing a loved one go through this truly awful cancer is devastating. No wonder we fall apart when they’ve gone. I screamed too when she died, I can still feel the pain, there was no comfort that she was now at peace, how were we all going to carry on without her? She has 3 beautiful teenage daughters, they have now got to grow up without their mum, she really didn’t want to die. How is your dad coping? It’s so difficult to look after yourself when you are trying to comfort other family members isn’t it? I will be thinking of you today and hope you have a GOOD day. Take time for yourself and do at least one thing that makes you smile. Your mum will be watching over you and I’m sure she is very proud of you. Take care. Tracey
  • Offline in reply to JulesyB

    Hi thanks ime doing ok now its a dull ache now but i thought ime going to be like this forever but ime not . Yes cruz is ok ime surprised you have got some counciling from them but i do suggest you talk to your local hospice there everywhere just ring and ask fo visiter center then ask there i when to drs one one and it was someone that had got it from a book you cant learn this that way the councilers usualy start out looking after the sick anyway your choise but in my case yes i had my adult kids but how could they understsnd the pain Shakespeare's said everyones an expert at dealing with grief till they have to go through it themselve yes your mum is in your child and you but more than that .sorry your dads suffering dementia seems to be another scurge on humanity but dont wear yourself out or feel guilty if he needs to go in a nusing home my cousin felt terrible guilt over it till we had a chat about it like you her brother was rubbish but some are weak its just how they are made just dont wear yourself out i bet your mums smiling now knowing what a great daughter she has i would be in her place .p

  • Offline in reply to JulesyB

    In response to Julesyb

    Thank you for your support, it's helps to know there are people out there who know exactly how I'm feeling and give me a push to go on. I'm afraid I can't give anyone any advice just yet but maybe when I'm out of this wretched place I'm in I might be to. I have to get mums funeral done first, it's going to the hardest dad of my life.            

    Thank you all x

  • Offline in reply to JulesyB

    Hey everyone I'm new to this but reading everyone's experiences is so heartbreaking I am also going to lose my mum to the same brain tumor in a couple of weeks I don't know how I am going to cope without her atm she's in a hospice she desperately wants to go home but they are saying she can't until she agrees to go home with a hospital bed and because of covid it's only one visitor a day and it's been booked up since Wednesday til next that's another week gone she was Originally given 2_5 months and three weeks later they did another scan because one hospital wasn't telling us anything so she was taken to another hospital for another scan only for the tumour to of gotten so much worse to the point her prognosis Went to 2-4 week's that was nearly 2 week's ago I can only contact her through the fone she's scared and miserable and just wants to be home I don't know everything despite me being the eldest and my brother being next of kin Its my mum's half sister they are communicating with I'm just lost I don't know what to do I cared for my nan through her Cancer and I desperately want to do the same for my mum and she hasn't left a Will I have no funds to get a solicitor involved or pay for her funeral upfront it's all a mess I'm grieving even thou she's still here I just want to do the best for her and make her proud and want her to know I will do anything for her in every single way and tbh I can't believe I'm here writing this it doesn't seem real I'm just so devastated don't know what to do but wanting to protect her and her estate because I have had family going on about it and she's not even gone yet I know it's got to be done it's just a bit much when they are going on about her will I'f she's Left one and going to court to appoint someone to deal with it all when it was less than 2 days after I got the news sorry for the ramble like I said totally lost xx

  • Offline in reply to Butterflyzoeb

    Hi lovely

    i am the original poster from last year, and I just wanted to reach out to you and say firstly, I am so sorry to hear about your mum and the heartbreak and stress you are going through. 
     

    I can only say, as little as it might help, I have somehow survived despite the grief and the feeling of such loss, I miss my mum every day, and am also dealing with trying to sort the legal stuff out as my dad has dementia and Mum left no will. I am also close to Basingstoke if you ever feel like having a coffee and a chat, as I completely understand how awful the situation is. 
     

    I know it feels so overwhelming and all just too much to think and process, just take it step by step, keep just putting one foot in front of the other, most solicitors give initial advice free of charge, I also highly recommend Cruse bereavement charity, they were amazing and I found talking to my allocates counsellor once a week really helped me to process everything. 
     

    sending you love and strength xx

  • Offline in reply to Butterflyzoeb

    Hi Butterflyzoeb,

    I am very sorry to read about what you are currently going through. I was in exactly the same place as you in 2015, the same hospitals involved, with my mum. She was given the same prognosis of 2-3 months in November 2014 without treatment, but even less with treatment because she was deemed so weak at the time. My mum wasn't having that and dug deep, and the 3 rounds of radiotherapy they were able to offer her gave us an extra 8 months with her. She was 60. We had the same issue in obtaining a hospital bed before coming home, my dad threw everything he had at them and I think he maybe spoke to Macmillan? And they helped in moving things along by getting the right people involved quickly. Being at home gave her such a boost. My mum also didn't have a will but got her affairs in order as best she could. We wish she had for we are in a position where my dad married someone else who is set to pocket everything, which I am pretty certain is the last thing my mum would have wanted. I'm here if you want to message me privately for a chat, I can fully relate to all that you are feeling right now. The grief is immense. Mine was compounded by discovering I was pregnant one day before my mum passed. It took me 3 years to get to a place where I could get through the week without crying. But as everyone will tell you, it does get easier and those tears will become smiles when you think of her x  

  • Offline

    Hi,

    I lost my sister and best friend this year to Glioblastoma, she was 39. I helped care for her during the last 6 months of my maternity leave until she passed away on the day I was supposed to go back to work. I haven't made it back to work yet.

    I wouldn't usually comment on something like this but what you said really resonated with me, feeling there's something wrong with you, then crying so much it's like your heart has been ripped out - I really feel like I could have wrote that whole paragraph.
     

    I feel empty and lost, with a tightness in my chest like I could just scream, but I hold it in and try to continue as best I can for my daughter and husband. I don't have anything profound to say, it's just the worst possible thing and there are no words that can adequately describe the pain. I just want to thank you for your words, although I wouldn't wish this experience on anyone I guess in some way it helps to know others have felt the pain I'm feeling and have managed to continue and, I hope, feel happiness again

    xx

  • Offline in reply to ClaireB84

    Hello lovely 

    I am the original poster, and I just wanted to say firstly, I am so sorry to hear about your sister. 
     

    if it offers even the tiniest bit of comfort or hope in any way, I am still here carrying on, one day at a time, trying to focus on positive things, and when those waves of pain and despair hit, at the most unexpected or random of times, I let myself feel it, whether that's tears, or rage, or just pure disbelief at how this could have happened. I have found that talking about it has also really helped me to cope, and keep going.

    if anyone asks me, I am open and honest about it all. I cannot recommend Cruse bereavement highly enough, they were amazing and a safe place to talk freely.
     

    I took a small bit of comfort in knowing that to feel such grief, meant that I had had such love in my life, and the grief is all of that love with nowhere to go. I wish with all of my heart that Mum could still be here, but I feel truly lucky to have had such a bond and such love in my life. That's how I try to look at it on particularly tough days, when all I want to do is pick up the phone and have a chat. 
     

    For what it's worth, I'm here and sending virtual support if ever needed. Just to let you know, you're not alone out there xxx

     

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