Steroids

FormerMember
FormerMember
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hi, my mum

was diagnosed 8 weeks ago. Initially it was a brain tumour in her hindbrain, further tests revealed the primary was lung, spread to bones, lymphatic system and thyroid.  It has been a dreadful shock and we are all reeling.  There are no words. I’d just like to find out if it’s ‘normal’ to not really be given any formal diagnosis? They have only just done a brohncoscopy last Friday 7 weeks after scans.  She is in no pain miraculously the only reason we called an ambulance initially was because after just3 weeks of headaches she started to lose her balance and vomit (initially diagnosed with middle ear virus).  She is extremely tired and weak and sleeps in and off all day, she can shower and do some crafts but doesn’t want to go out or socialise, we have no idea how long, we have no idea which cells, the only drugs she is on is 4mg of steroids.  She was ‘euphoric’ a side effect but now her personality has changed she has become nasty, depressed and is beginning to imagine things.  Reading this back, and after reading other threads it seems like we have all been ‘left to get on with it’. I really don’t know what to do as my dad who is caring for her is taking the brunt of this.  I have managed to get a drs visit tomorrow on the pretext of a ‘check up’ but having called the wonderful Macmillan nurses they have said it could be due to the steroids or the tumour, the tumour seems unlikely as it was in the hindbrain unless it had spread to frontal but we were told it had shrunk.  In 8 weeks life has become devastating for all of us and now I’m worrying that her ‘personslity’ Change will be the worst yet.  Her gp 3 weeks ago said it’ll be weeks rather than months which is why I’m wondering if they left us because there isn’t any hope, but she’s now been given the broncoscopy which they had said they wasn’t going to bother with.  Every other thread I’m reading sounds like people had treatment straight away we don’t have anything offered as yet.  Just want to keep her comfortable and make sure her quality of life is best for her with all her family around her rather than her being unhappy and miserable.  So so so hard.  

  • Hi Josee, 

    So sorry you and your family are going through this. I hope you got some answers at your appointment. Could you ask to be put in touch with a palliative care team? They would be able to support you to help your mum and I think guide you through whatever is happening 

    much love

    katherine