This is a hello.
Diagnosis 2004,craniotomy 2005.
Then tegretol for several years and yearly scans,and life continued in a way i recognized..although depression rose up.scans were to end in 2020,as there were no signs ofactivity.
However a mass measuring 1mm was seen.The follow up scan 12 months later,end of 2021,showed the bone invasion over half the skull plus a tumour mass.
6 weeks of radiotherapy, meant end of my driving,fatigue that was mind blowing increased depression and high anxiety,and end of my working life.Now I have one scan a year.No meds .Diagnosis of Encephalomalacia.Fatigue,brain fog,poor balance ,poor memory.
I can drive again ,but utterly hate the life I'm living ,and feel unseen in the NHS.out of sight out of mind.
I ve been told it will shorten my life,but as its atypical ,no one can offer insights on how that might be.
I d love to hear from anyone going through similar.
Hi Ethelind
Welcome to our community, I hope you find it both informative and supportive.
I am Steve, one of the community champions and my main experience with cancer is via my wife who has Leiomyosarcoma. I noted there had been no replies to your post yet so wanted you to know that you had been noticed on here and berhaps bumping your post will prompt some other replies.
Perhaps the nearest expereince to yours though is via my son who was diagnosed with a Craniopharyngioma, two rounds of brain surgery and 5 and a half weeks of proton beam therapy and things seem ok in that line though it has left him steroid dependant. One positive for us is a neighbour across the road had the same diagnosis over 20 yeara ago and has been ok since so that felt good.
<<hugs>>
Steve
