Off EOL back to palliative

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Hey all , brand new here . Mum was diagnosed terminal cancer in November , no treatment options available. She progressively got worse throughout December and jan, becoming fully dependent on my sister and I along with care staff .   Mum was on EOL pathway , all non essential meds removed including insulin . Mum then started having good days ( was prepared for the rose before the fall but that was about a week ago and the fall hasn’t came ) 

mu mum is getting stronger and little more independent of late , I’ve had to pull back the level of support I can offer as have young family and wasn’t sustainable to live in with them for the long haul . When we thought it was short term the family rallied 100%. I work in medicine myself but I’m so confused and at a loss at to what is happening. I’ve cried and held vigils at mums bedside - and now she’s feeling better. Nurses can’t advice , aGp has reviewed scans and confirms diagnosis and treatment plan - I just wanted to know what’s happening ? How can someone be at deaths door not eating / drinking for 9 days at a time . Now back to small offerings . I know my mum is strong as an ox but to be so well that palliative nurses are reducing their visits just seems so strange . Has any other family members experienced this situation 

thanks 

  • Hi  I’ve never posted before so forgive me. My mam has a grade 4 glioblastoma and we are caring for her at home, your experience is extremely familiar. I am losing count of how many times the palliative care team have prepared us for various stages of decline, only for mam to bounce back. Nurses/carers are stood up, and then stood down.

    Each time we lose a little of her, the bounce back gets less and less, but the highs and lows are so very hard.

    Whilst grateful for every extra minute I have with my wonderful mam, part of me is struggling to keep riding the waves and I often fear I am drowning. Much like you, support is limited and everyone seems to have a different view. 

    I don’t have any answers for you but just wanted to validate your feelings and say you are not alone. 

    I read a quote recently that we are all just walking each other home. I guess some journeys are a little more difficult than others but as long as we walk together, at a pace that suits our loved ones who are taking this journey, then that’s the best we can do. 

    sending you love, patience and oodles of strength ♥️

  • Thank you for taking the time to reply . I likened my self to hanging off a cliff - every now and again the rescue rope comes for me - I climb a little and it snaps again , then another rope appears climb more and snaps more . 

    sonce posting this I’ve reached out to mums GP - ultimately I want them to carry out a home visit as she is better , the GP did let out a little laugh but totally understands where I’m coming from . She’s eating again now so do we need to go back to monitoring her BM . 

    sorry to hear about your lovely mum, and thank you for sharing your journey xx