I never thought I'd be a blogger!

1 minute read time.

In fact, I'm not sure I am still.  But I am a sad, frustrated, Mum of a beautiful 13 yr old with a (Insert your own swear-word here) brain tumour! (Astrocytoma)

At the moment, we are in the situation where my daughter has had x3** ops over the summer holiday - non of which have actually helped her - she has recovered well from them so is fortunate enough to be well enough to go to school and I return to work.  However, I find this has left me screaming on the inside.  Because she is well and in school everyone around me has adopted a kind of 'Oh well' back to normality' attitude which I am increasingly struggling to cope with.  Don't get me wrong, of course, I am delighted at her recovery and at how well she is at the moment.  I am just SO SCARED at how long this may last. 

I know there is nothing anyone on this site can do to help, and Lord knows, you all have your own c**p to deal with, I just feel like I need to get it out there!

Thanks for reading. 

** The 3 ops were:
1) Endoscopic biopsy (inconclusive) and insertion of drain/reservoir
2) Removal of said drain/reservoir due to infection
3) Open biopsy/craniotomy with view to debaulk.  Unsuccessful on both counts.
Anonymous
  • FormerMember
    FormerMember

    I'll take the wine too thanks! X

  • FormerMember
    FormerMember

    I was sure I replied to this blog....but once again, its gone poooooooooooof of course me being a brain tumour patient I probably forgot to hit send and clicked on something else and got distracted!!!!!!!!

    Writing it all done is very theraputic, I do a daily dose and somehow....people read it, dunno why its hardly life in the fast lane LOL  Perhaps we all like to read about people/families doing "normal" things.

    Look forward to following your blog.

    Debs xx

  • FormerMember
    FormerMember

    i know exactly how you feel, because arwen has attended school throughout treatment (radio and chemo) people wrongly assume shes ok when actually shes still a rather poorly child, just because she doesnt moan or cry about it doesnt mean that she is 'all better'. If only other people understood what it was like. Arwen has an astrocytoma too, left temporal lobe, grade 3.

    Im happy to chat with you anytime, as its nice to finally meet someone with the same type of tumor as Arwen. Although, i wish none of us had to meet each other like this!

    Take care

    Angel

  • FormerMember
    FormerMember

    By the way Nerak i didn't get your personal message, not sure whats going on there?! lol!