I’ve lost my Mum to glioblastoma and I’m lost
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7 posts since
30 Jun 2020
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
253 posts since
6 Jul 2017
Dear JulesyB,
You clearly loved your Mum very much, and she will have known it, during those terrible months. But that love now makes your grief very acute.
There is nothing wrong with the way you are reacting. Everyone grieves in different ways. And the duration of grief is different for everyone too. But it will, eventually, start to get less painful. Grief will turn to sadness, and in time this will become acceptance.
Glioblastoma is a horrible cancer, except for one thing. It is not usually accompaned by much pain. Your Mum will have gained much comfort having you and her other loved ones by her side, as she slowly slipped away.
You were a wonderful daughter. I wish you every strength and, when you start feeling better after the passage of time, every happiness. xx Harry
3 posts since
30 Jun 2020
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
7 posts since
30 Jun 2020
Hi Harry
Thank you so much for your kind words, just knowing that I am not alone and that others are out there and understand is so comforting.
This is such a huge loss and I suppose it’s almost easier to accept a loss when it is an older grandparent for example, rather than your parent who should have more time left to live.
Really, thank you so much for taking the time to respond it means such a lot
xx
7 posts since
30 Jun 2020
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
3 posts since
30 Jun 2020
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
7 posts since
30 Jun 2020
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
1187 posts since
3 May 2018
Hi dont you go apologising that what we are are all here for to support one another youve shown what a lovely kind caring person you are ime sure its helped getting it off your chest when you lost your mum they say mum is god in the eyes of a child and for some that goes into adulthood some i say because there are many that arnt so good .i dont think we ever truely die .maybe our bodys do but but the love and things that make us is energy and thats here till the end of time your mum will still be around some where watching ive learnd there things go on in this world that we will never understand or are ment to not the god thing but ill not critisise that as how can take a good look at your daughter i mean a realy good look youl see your mum in her. as to your partner how can he truely understand how you feel its your mum but sounds to me like hes doing his best.at the moment you will be thinking is this it am i going to feel this way forever a scary thought but trust me the sun will shine again but it takes time have you had any counciling it can realy help you can get maybe a few answeres i used my local hospice counciling service i figured they deal with loss every day and dont just get it out of book thanks for sharing your story with us we are all in this a club none of us want to be in but dam glad we are i lost mum dad a grandchild .and two years ago the love of my life the sun shines now not so brighty but it does shine i mentioned it so you know ive been where you are now and its its agony you didnt feel was possible just take it a day at a time it dose get eisier you have no choice parts of your brain does it for you. best wishs and so sorry for your loss .as to your sister well not everyones as strong age dosnt have much to do with it .paul ps sorry about the spelling i have mild dislexia and the spell correction needs turning off on this site its terrible
4 posts since
20 Jun 2020
I too have just lost my mum, 8 days ago to be exact to glioblastoma. Mum was diagnosed on Feb 2nd after having a scan as she was poorly over Christmas, we thought she’d had a stroke but turns out not. Sitting in the consultants room with mum, dad and my brother to be told to go home and live the weeks/months mum has left hit us like a train. From that day on we have cared for her at home as a family. Covid came and made everything so much harder as mum’s sisters could come to see her. By mid March she was totally immobile, we had all the equipment needed to lift from bed to commode to chair etc. We were doing full personal care as mum had no use on her left side. Eventually we had carers coming in twice a day, I know it took some weight of us but it’s not their mum so the love and empathy in some isn’t there. Mum wanted to go into the hospice for a rest, she was in for two weeks and we fetched her back home because although they do a fantastic job mum needed to be talked to and have company but with Covid we could only see her for two hrs throughout the day, it just wasn’t enough so she slept most of the time. When we got her home we had a few good days with her, she was chatting to us but seemed more confused which got worse over the coming weeks. Then her eating went off and she slept most of the time. I woke one morning to mums breathing sounding awful and she looked a funny colour, I called the district nurse out and said that this could be it and to sit with her and get the family here. We sat with her all day and all night, all the while mum had this death rattle which was just awful sound. For 23hrs we sat there, holding her hand, telling her how much we all loved her when she opened her eyes and asked for porridge! She ate well that day and even made me laugh on a few occasions. However 2 days later we were back there again, the secretions had returned and we couldn’t wake her. Things seemed different this time tho, her hands and lips were turning blue. We never left her side apart from each having a few hrs kip in between. 4.30am on June 7th I had got up went downstairs and dad said no change so go back to bed for a hour. I gave mum a kiss and truddled back to bed. As I lay down dad came rushing upstairs to me and my brother saying mums breathing had changed, we rushed downstairs to watch mum take her last breath. My knees buckled and I let out this animal like sound, the pain in my heart hurts so bad, I understand the void people mention, now I know. I can’t believe she’s gone and I don’t know how to keep going without her, but I have to for my dad’s sake, he’s a mess. Mum and dad did everything together, he’s says he doesn’t want to go on without her, I don’t know what I can do xx
7 posts since
30 Jun 2020
My heart goes out to you and your family, I know exactly how awful and how cruel this evil disease is. Covid on top of having to try and deal with this as well, I can only imagine how much harder that made things for you and your family.
They say Glioblastoma is one of the cruelest, it steals them away in front of you, you can’t get your head around how this can have happened and so fast. Like you, I have felt like I have had to hold the family together, despite being the youngest child.
I never thought I would ever be able to ‘cope’ with losing my Mum, she was my best friend, and I thought she’d be here a hell of a lot longer, but it’s strange, you sort of go into autopilot, she told me I had to carry on, somehow, as impossible as it feels, and some days are worse, you do. I think in some ways it also helps to know that you’re not alone, when you see others with their mums doing the things you would have been doing, simple things, it’s hard not to feel rage.
I feel lucky that we were able to be with mum every day all day/night at the hospice because it was just before COVID really hit the UK, but if she hadn’t declined we were planning to bring her home to our house. I have massive, massive respect for you to have cared for her at home, that’s also a huge and loving thing to have done.
The hospice team told me, that the greatest thing you can ever do for someone, is to be with them at the very end, that is the biggest show of love, to be there for them in that crucial moment. I also believe there is more we can’t possibly understand about dying, the nurses told me that 80% of the patients start talking to ‘invisible’ people at the end, and I feel that says something.
It’s very early days for us both, but I have just recently contacted Cruse bereavement charity, they can offer some counselling sessions free of charge, they said that from 3-5 months after losing a loved one, is usually when people can contemplate some counselling.
I too have moments where I think how on earth can I go on? Just know that you will, your mum loved you so much that she would want you to, but, it is a take each day, each minute as it comes, if you need to cry, cry, if you need alone time have it, do whatever you need to do to get throigh each day, and if you can, talk about her as much as possible.
Always here for anyone who needs a listening ear, we’re all in this awful ‘new normal’ together. You’re not alone xx
4 posts since
20 Jun 2020
Today’s been a bad day, I’ve cried most of it, I’m a mess. Had to go and buy an outfit for mums funeral on Tuesday, well I say funeral, covids taken the chance of sending mum off the way she wished, just a graveside service with close family. I’m not ready for this, I want my mum back. Sorry don’t mean to upset anyone, I just have the deepest pain in my heart. I’m so worried about dad, they did everything together, now he’s lost.
7 posts since
30 Jun 2020
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
7 posts since
30 Jun 2020
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
17 posts since
26 Jun 2019
1187 posts since
3 May 2018
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
I’ve lost my Mum to glioblastoma and I’m lost
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