Long story short
I was diagnosed with neurofibromatosis age 2
in 2001 age 13 I had a brain tumour which was removed but left me completely paralysed and on a ventilator
i mostly recovered but was disabled by it
in April 2020 I was diagnosed with another brain tumour - this time it’s inoperable
I’ve had radiotherapy and chemotherapy and for now all is stable
but my mobility is worse
I feel bad for my mum who is the only person who can help me at the moment
my dad passed away 6 years ago and my sister has a 1 year old and 2 more on the way, so it’s just us
i know she is struggling too and gets tired and there’s nothing i can do to help and i often feel a burden
then I also feel guilty that I probably don’t have long left and I’m worried how she will react
i worry about lots all the time that I no longer have control over even little things like is the dog drinking
Hi CharlotteLG
Welcome to the forum and sorry to hear that you are struggling. Easy for me to say I know but you have nothing to feel guilty about. Why not contact the Macmillan helpline on 0808 808 00 00 to talk to someone about how you are feeling. The line is open form 8 am to 8 pm seven days a week.
Hope this help even a little.
Best wishes
Daisy53
