Towards the End

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Hi everyone,

September last year we sadly lost my mum to GBM.

It was a short journey, lasting only 4 months. 

Upon reflection, there was a lot of info my family and I wish we had, mainly about what was going to happen next in her journey. 

Im posting this here to offer my experience to anyone who needs it, as I wish its something I had during the time. While we had our wonderful CNS, it was difficult sometimes to get the answers we needed.

You can ask any questions about whats to come, no question is off limits. 

Alex :) 

  • I feel the same. It is 14 months since I lost my wonderful husband to Glioblastoma . last 6 months he was in a care home with me by his side everyday. I was never kept up to date with medications and decline, that which I couldn't see. I asked but never got straight answers. They had known his death was imminent but didn’t tell me so when he went suddenly I became hysterical. This day is now a constant loop in my head and is affecting my grieving . Please demand to know what is happening , don’t be fobbed off like me. I feel as though I let him down. 

  • Thanks for sharing your story. I can imagine how difficult those last few months must have been for you. It's such a confusing time with so much information to absorb and try to understand. 

    We also found that the doctors/ nurses danced around the topic of death. We all knew what was coming but they just seemed naive? I resorted to doom scrolling on google to just try and find someone with a similar story, so we could at least prepare ourselves for what was to come. 

    Without knowing you, I can confidently say you did not let him down. You stayed with him, by his side, till the very end. I would argue he was a very lucky man in that regard. You did him proud. That was not an easy thing to do as I can sadly relate to that. 

    Take care and if you ever need to have a chat just let me know.

  • Alex, thank you so much for your kind words and support. This is the first time I have told anyone about this. And so good for you to be thinking and helping other people at this time.  Take Care. 

  • Oh Hebe1, I just want to reach out and give you a huge hug.

    I was kept in the dark for the first few months of G's journey as he deliberately excluded me from discussions with the CNS. Latterly though the  local hospice nurses and Dr were fantastic. They were open to talking about all aspects of the journey.

    Nothing prepares you for losing them so please don't be too hard on them for not telling you. In our case, we knew G was declining but like everyone, we thought there was more time than we really had in the end. He had a great day on the Saturday ( 3 hrs on his bike in the garage, an outing with his friend that included a ferry ride and a huge ice cream sundae) then something happened overnight into Sunday. Seizure? Stroke? Who knows but we had a very ill man on our hands by Sunday. The change was so dramatic and so quick on reflection it was quite frightening. The following five days in the hospice will live with my son and I forever.

    It's been just over three months now and I can sense that the healing has begun but there's a long way to go. Like Alex though, I too am happy to answer any and all questions openly and honestly.

    Hebe, please don't think for another second that you let him down. You didn't. You were there every step of the way. As wifes and partners, we're not the medical experts so we can't be expected to read the signs but I'm sure he knew you were there for him. 

    sending you a huge virtual hug 

    love n hugs

    Wee Me xx

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

  • Thank you Wee Me. I know things were hard for a long time but sounds like your Husband had a good day before his last decline. I am surprised how things can change so quickly. My Beloved had a second debulk that left him blind and paralysed for 6 months before his passing. I think what andvice  Alex and yourself are offering is so good. If I had read this before what a difference it would have made. Thank you for the hug x

  • Hello Alex

    I Am in this journey now along with all of you. My husband had his last oncologist appointment on 22nd when they told him that tumour is growing now and he will be handed over to hospice. His condition has been declining for last 6 months. Currently he sleeps about 20 hours and speech/understanding etc is not good at all. He walks very little - I am trying to get him to table for lunch and dinner and he manages to go to the toilet with support. We hv talked to the doctors and hospice nurse abt the timeline. As of now they said 2-3 months. 
    could you please share more detail based on your experience. What are the other things that we as a family should know or should keep an eye. 
    Hebe sending you a big hug. So heart wrenching. I can completely understand your situation. You should be so proud of yourself. Your husband must be beaming with pride. Give yourself a hug everyday. You did everything right in your capacity. 
    hugs to all 

  • Hi Jyo,

    Thanks so much for sharing your journey with your husband. I see some similarities with my mum, so I really understand how you might be feeling at the moment.

    So for us, we were never really given a formal timeline for mum. I do recall a palliative nurse saying that she was 'many months away from that.' This sadly was not the case. So while I am really happy they have given you an estimate, please just take it with a pinch of salt for now. Each person is so so different and will react and change in their own way. 

    Towards the end mum also slept for most of the day. For me this actually brought me some peace, as I looked at it as she was asleep and blissfully unaware of the disease. 

    A couple of days before she slipped into her deep sleep state, mum struggled with taking her medication, and couldn't actually use a straw. The week or two prior, her cognitive state had took a massive decline. She mentioned a few times about saying goodbye to people she hadn't had the chance to yet. I think in some capacity she knew what was ahead. 

    In general I would say try not to remain to hyper vigilant with your husband. Enjoy him as much as you possibly can at this time. However also, take as much time for yourself as you need. It's so easy to feel guilty at this time, but please look after yourself. 

    Things are going to happen when they happen, what's important is that you know they will at some point, so you arent caught completely off guard. 

    I think something I wish I knew, was how the 'end' really went. Doctors and nurses didn't really know what to tell us. Thankfully, the end was extremely peaceful for my mum. She was asleep for around 5 days, and just drifted off in her sleep, no fuss. It was the best possible outcome for her, for what was such a painful journey at times. 

    Keep doing what you are doing at the moment, by the sounds of it, you have been the best possible support for your husband, and that is something you should be forever proud of. 

    If you have anymore questions that pop up, please just ask away. 

    Sending hugs to you and your family :) 

  • I am really happy for you that you have been able to open up about this. That takes a lot of strength and courage. You should be proud of yourself. Always here if you feel you need to get anything off of your chest. 

    Alex :)

  • Thank you so much Alex for such a detailed reply. Brought tears in my eyes. Grateful for this forum and to have all of you with whom we can share. 

    sending hugs to all 

  • Hi Alex,

    I'm so sorry for your loss. My mom got diagnosed end of October. She came to emerg bc of left sided weakness which had started a month prior, gradually getting worse. CT scan showed seven diff tumors in diff areas with diff sizes, not operable. Biopsy confirmed GBM. The day after admission she was 2 person assist going from independent. She was only offered 3 wks of radiation instead of 6 due to her physical decline. Radiation went fine but scan a WK after showed one of the tumors has increased in size. She stopped eating at one point for a WK and then started eating again. She sleeps a lot but not sure if it's bc of hydromorph, tumor or she is bored in bed. How was it for your loved one a month prior? How was the decline? Thank you for sharing.