16 Years Coming to an End

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Hi all,

It's been so helpful to read everyone's experiences of brain tumours and know that I'm not alone in this. I'm not sure if this topic has been talked about before in this forum, but I'm struggling with a bit of an identity crisis, along with my mum's impending death. for anyone interested, it was an inoperable grade 2 right-frontal astrocytoma, which then progressed to grade 3 in 2016, which is now a glioblastoma (diagnosed October 2023).

She's stopped eating, drinking and struggles to take her medication, which is hard to watch. She's had a brain tumour since 2008 (I was 8 years old, and am now 23), so she's beaten all the odds, and the decline hasn't exactly been a shock. However, I don't think I prepared myself for the creeping realisation that one of these days, I'm not going to be worrying about her anymore. I'm not going to be worried if she's taken her medication, if she's eaten, how she is. I now have to put that energy into myself, which is something I've never done before. 

The last 16 years haven't been easy. People say she's lucky that she's had so long. I don't know if that's true. It's heart-wrenching watching your own mother become a shell of herself over that length of time. She used to have delusions about things that weren't/had happened, which was awful. She's always been strong-willed, and up until the now end has fought every bit of help. Thankfully, we managed to get her to the care she needed in November 2023, but knowing she wasn't coming home was...brutal. 

Watching someone disintegrate slowly and painfully is something I wouldn't wish on my worst enemy, let alone being the person going through it. Unfortunately during that time, I hadn't realised I'd lost myself along the way. I'd planned for every eventuality apart from this one.

I've tried to grieve in advance as much as possible, and I see her everyday. She's frail, tired. She's barely there. She's been non verbal for a few weeks, which has made things harder. Knowing that I'll never have a conversation with her again... I don't even know if I remember the last conversation we had. 

I don't know anyone my own age that's had to deal with anything remotely close to this. It hasn't even crossed their minds (which I'm glad it hasn't), but I'm just looking for anyone that can relate, even in a small way. Or anyone that knows how to find themselves again.

Any advise or anything really would be appreciated - thanks for reading.

  • That’s a really hard story to read, especially for someone so young as yourself. You share your mother’s strength obviously and she has fought the hard fight. I imagine the end can sometimes quiet and sneak up on you and be taken away from you with no control. 
    You’ve been through so much and can imagine why you’d believe that you’ve lost yourself. But I think it’s just you’ve lost focus as you care for your mum so greatly. 
    Time is a great healer they say but they tend to not look at the hour glass and see that sand. We don’t even know how much we have left for ourselves let alone those we love dearly. She is safe, well cared for and even if you don’t remember your last conversation with her; I can guarantee she loves you very much. It sounds selfish but you are always number one. It’s nature. You’re there for your mum and you have your own journey to travel. You sound strong and your head screwed on right.

    Take the little problems in hand and sort them at your pace and the bigger complicated picture should shrink and then you can focus on finding yourself, even the healthy find that hard. I think you haven’t lost yourself, as your strong, smart and caring; something to be proud of. You’ve got support here and help through macmillan. 

    Ask away and keep being the man you don’t think you are

  • Hi plantgalaxy8

    A warm welcome to the online community. So sorry to hear about all that is going on. My heart breaks for you. 

    I supported my late husband through the 3 years of his glioblastoma journey. My son is 26 and my daughter 24 now and seeing them watch their dad decline ripped me apart on a whole new level I can tell you. A parent always wants to spare their kids the pain....

    My daughter had counselling through our local hospice to help prepare her. Is this something you have considered or have been offered? It might help to talk. She said at the time that it helped. 

    If counselling isn't for you, have you tried journaling? My son has opted to take that route. I too journal extensively. It helped get me through the last three years or so. Seeing the words written down takes some of the power/fear out of them. 

    It's funny you mention the last conversation. I don't remember the last one I had with G. No idea what it was about. I know it was on the Saturday evening, six days before he passed away. At the time I had no idea it would be the last conversation and to be fair by then he wasn't making much sense at all. Something happened overnight on that Saturday (seizure/stroke) and by the Sunday morning he was barely there. Words were gone...  

    I can't begin to imagine how you've coped growing up with all of this going on. I was hard enough coping with the three years of G's journey at my age. (I'm 53 so not totally ancient and decrepit yet) I'm glad you've found this community though. It's a safe and supportive space and there's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Speaking now as a mum - your mum would want you to live your best life. It'll take time to heal from this experience. (I don't like the term grief/grieving) Healing is messy but I firmly believe that in time we'll all heal from our experiences of losing someone we love to GBM (I feel we lose them before they pass as they are no longer themselves) It'll take as long as it takes but you will find your way through this. Take this journey one step at a time but move forward with the good memories and let the shadows of the dark memories fall behind you. This journey regardless of your age, changes you as a person so its not a case of finding your "old self" but of getting to know your new self and you know what, your new self is a pretty amazing strong person.

    sending you a huge virtual hug and lots of strength.

    Wee Me xx

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