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Scared little sis - my big sis was diagnosed with stage 4 glioblastoma and may only have weeks left. We feel so unprepared and alone

Lanne79
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Hi there x my names Laura and 14 weeks ago my amazing big sister was diagnosed with a stage 4 glioblastoma.  She was originally in a hospital in Cambridge on the day we had the devastating news, we were then to that my sister would be moved to a care home to recieve pallative care and when in a haze we asked how long we were given the answer "it could be weeks".  The thing is although we are an incredibly close family so we are lucky in that respect, my mum, dad and me feel so alone and out of control.  We feel like no one has actually sat down with us to advise us on what to expect etc like we are literally being left on our own.   Its a harrowing experience as it is without feeling alone.  Also, we want some advice on how to approach the diagnosis with my sister no one has advised us or guided us what to say (my sister has lost her short term memory ) so it's hard to know how to bring it up or should we not as the thought of causing her distress is too much to bear.  I just would have thought that Macmillan would have guided us a bit? Or are we expecting too much? Any advice would be so appreciated thank you so much x

  • Hello Lanne79

    I'm so very sorry to hear about your sister's diagnosis. I know that this will have been an incredibly difficult time for you all and it's understandable that you have questions and concerns about what will happen over the coming days and weeks. 

    It's sad to hear that as a family you've not felt well supported by the people responsible for your sister's care. You mention in your post that she will be receiving palliative care. Do you know if she has been referred to the local team yet? It's their role to ensure that your site remains comfortable and that any problems she has as her health declines are well managed. It's also part of their role to support you as a family so please do reach out to them as they will be best placed to talk through the process of how things may change over the coming weeks. 

    You might want to read through some of the information available on The Brain Tumour Charity website about end-of-life signs. They have a number of support options available that you can contact if you think it may be helpful. 

    If, as a family, you feel that it would be too distressing for your sister to be told about her diagnosis then I can understand that you want to protect her. Again this is something to talk through with those who are caring for her. 

    You're most welcome to contact our nurses for some advice and support. I know they will be happy to listen and offer any information and guidance they can to help you all at this very difficult time. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I do hope that you're able to access the support that you all need Lanne79 and that you're all able to spend some quality time with your sister. 

    Sending you all my best wishes, 
    Jenn
    Cancer Chat moderator 

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    Hi Lanne,

    A very warm welcome to our forum.

    I am so sorry to hear about your sister's diagnosis and fully understand how lost you and your parent's feel. I have cared for a number of relatives at end of life and in my experience, I wasn't told much, until I myself started asking questions. You might find it helpful to join forces with your parents, to draw up a list of the questions that you have, then asking to speak to someone about what is likely to happen.

    Is your sister aware of the gravity of her situation, or has she forgotten about the prognosis that she's been given? Only you, as a family, know whether or not to bring up the subject with her. I can understand that you don't want to upset her with this information, but you possibly need some guidance, from someone on her care team.

    This is a heart breaking situation to be in and it has obviously come as a terrible shock to all of you. The main thing at this stage, is to ensure that your sister is kept as comfortable as she can be and to let her know how much you all love her.

    My thoughts and prayers are with you all and I sincerely hope that you get some answers soon. Please keep in touch and let us know how you get on and remember, that we are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Moderator Jenn

    Thank you very much for your reply and advice it's so appreciated xx its incredibly scary I guess its just so overwhelming for us.  I think your right maybe we need to get some questions together(there are so many!) Thank you so very much ️

  • Offline in reply to Moderator Jenn

    Thank you so much for replying it means so much we are so scared I guess we just feel like we are alone I know we aren't though your reply has really helped thank you ️xx

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