Brain mets

Ive just been diagnosed with brain mets fromOvarian cancer, a rare occurrence. I am facing leaving my home for a palliative care setting,no relatives, and I m scared and devastated re what will happen and cant face the end . Im dealling with everything alone and its overwhelming. Just posting really as no one to talk to

  • Hello

    i am so sorry to hear that you are coping with this alone. I am currently caring for my father who was diagnosed in August with brain mets from lung cancer.  He has been taking steroids which have reduced symptoms and given him more energy, he does not experience pain but frustration with decreasing mobility . You will receive an enormous amount of support from your palliative care team and oncologist please let them know how worried you are, we have found palliative care to be hugely supportive both emotionally and physica after all the endless appointments and treatments which were exhausting. I really hope you have a positive experience too. Do you have any friends or neighbours who can also support  you through this difficult time?  Both Marie Curie and  Macmillan have free phone support twenty four hours a day too. I am thinking of you, please be reassured you won't be alone xx

  • Hi Alice I'm  so sorry you are alone stay here to chat when you feel up to it  we are all here to chat with you we are here for you my lovely 

    love Lara ️

  • Hullo |Lara. thanks for reply and tjay5.Im feeling very low,just trying to find a home for my beloved dog.and trying to deal with all the paperwork needed. Of course everything is all over the place, no none knowswhere stuffis and theres no one to tell;.The Hospice people are coming next week. I still am indenial I think . i have been given steroids to helpwith the brain swellinng., but they dont seem to be doing mujch, the mobility is the problem and the iuncreased ability to type accurately. I think itsworse not having support at home and with the NHS on sttrike and unable to access GP help etc (this was bad before Covid) its worse whenyou need helpand you cant get through to anyone

     

    Sorry your father is dealing with this to tjay

  • Dear Alicemary

    I am so sorry that you are going through this on your own, and it is so hard to know what is the best thing to do for yiur trusted companion, your beloved dog.

     

    I am not sure if you tried this charity already, but there is a charity called The Cinnamon Trust, they help elderly and terminally ill people with the care of their pets, and in some circumstances will rehome animals either with full time foster carers or in their 2 sanctuaries.  I am not sure where in the country that you are, but I think that they are nationwide.

    They are listed online, or their telephone number is 01736 757900.

    Best wishes and I hope that you find some level of peace and acceptance in the hospice, I realise that it is not the same as being in your own home, but they will ensure that you are kept as painfree as possible.

    Regards

    Marie

     

  • Just seen your post. Luckily I am registered wit the Cinnamon but they have to have a board meeting apparnetly and then theyve got to find someone; They have said theyw ont take her into their sanctuary as her health problems not bad enough, they wilol find her a foster home if they can !  I dont want her to go but that woiuld be the best option as they have a good reputation but probably overwhelmed , although they dont take in any dog like other rescues

     

     

     

     

  • I will keep my fingers crossed that they can find someone to foster her, in time for your move.  At least that will be a weight off your mind.  Yes, I think that they are a pretty good organisation, I used to be a volunter dog walker for them, before my job got too hectic.

     

    Best of luck with it all.

    Marie x

  • Hi again

    Sorry you've also got the worry of your little dog too, I hope you manage to find someone to help with this. I know what you mean about problems texting/typing this was one of the first symptoms dad had to indicate the brain mets but it did improve a little with steroids, some good days some bad. Once you are under the wing of the hospice you will be in touch with either Marie Curie or Macmillan and they will help you put all your affairs in order, please try not to worry, I know this is easier said than done. Maybe make a list of all the things that you need to do or are worrying about and let them know at the hospice. Dad keeps a notebook near and writes things in the middle of the night sometimes (though his writing is poor too) and this helps him to feel a little more in control of what needs to be done.  
    I am so sorry you don't have people to help you yet, I know how much dad has relied on me to help but you will soon have the support of the hospice and the wonderful nurses to help you through.

    keep strong my lovely, we're all thinking of you x

  • Hi i have added you as a friend can you accept so i can message you please, i am also looking after my dad who has brain mets. 

  • Hi Alicemary     My neighbours Mum has just had the care of the visiting palliative Marie curie nurse's they have been great and really helpful and supportive to the family as well as the patient . I hope you are able to re home your dog, it's hard when you are on your own. 
    Do post on here as there's lots of support. xx susie 
     

  • Hi Tjay5, 

    Would you mind helping me with some questions? I appreciate thiis has been a very difficult and painful time for you. I'm hoping to reach out to someone who has had a similar experience. 

    My mum had bowel cancer which spread to her lungs. She plodded along for a good 2 and a half years but 4 weeks ago got really dizzy, had slurred speech, fell over and broke her leg. In hospital they discovered a bleed on in brain due to a 3.5 cm met in her brain. A week later they scanned her and it was 4.2. 

    We now have her home.  Her mobility is terrible. We can get her up on to a contraption to get her to the loo but she is very quiet, is doing and saying random things but is still with it at the same time. 

    She is on steroids. Sleeping loads.  Docs told me she has weeks if even. i have dropped everything including my 2 young children and have moved in with her. I don't know what the path is ahead. 

    If you can share any part of your experience as i think I picked up from it your dad was diagnoised in August but you posted 5 months later so clearly it wasn't weeks. 

    Thank you x

    Helen