Hello , my new to the chat .

  • 4 replies
  • 34 subscribers
  • 659 views

Hi , My name is Ellie, I live in South West Wales.

  • HI Ellie

    a warm welcome to the online community.  Would you care to share a little more about yourself with the group?

    To tell you a little about me, I've been a member of the online community for about 18 months maybe a little more and I'm currently supporting my husband through his journey. He was diagnosed with  a stage 4 brain tumour in Sept 2020 so it been a bit of an emotional rollercoaster ride for us all.

    This group is a really supportive safe space and there's always someone around to listen and to offer that virtual hug when its needed.

    For now, I'm 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

  • Hi Ellie

    i live near Birmingham, but I used to live in North West Wales Flag black
    I was diagnosed with a stage 3 brain tumour in April last year, for me it’s been more the physical side effects that are tough to deal with than the emotional (although I do have my moments) 

    Cwtches x

  • well , where do i begin, it all started off last July with a tumour in my spine ( was told it was a schwannoma tumour , most symptoms were not normally seen with these tumours, i had it removed in Dec week before Christmas , again i was told it was probaly a schwannoma tumour, it was then sent for hystology.waited and waited , had a phone consultation with my consultant 28th April to be told it wasnt a schwannoma , in fact it was a  ependymoma, it had been sent to Cardiff for further testing , in the mean time i was sent for an urgent  brain MRI as i have been having severe headaches ( hospital put this down to a spinal fluid leak which i have got ) Tics, and still no feeling or sensations in the nether regions, i am now waiting for further hystology results ( Grading) and the outcome from a MDT with the neuro oncologist , neurologist and my neurosurgeon, the last few weeks have been somewhat upsetting, mainly due to the diagnosis but also due to the difficulties the operation/ tumour have left.

    Thats my story so far , ive had to seek my own information regarding this tumour , what it is , etc etc, i can see now that the symptoms i have had and still had are typical for this tumour, i didnt know which group i should join xxxx

  • Mine is more physical, relying on my husband to do things that i used to really enjoy( gardening, driving etc), between us we are working a plan , i have my own work potting station just outside our patio doors ,

    Cwtches xxx