the last month has been a whirlwind. The chemo hasn’t been working, CT showed further advances. Team told me treatment was stopping and no more treatment offered as in this is your death sentence. I’m a 46 year old working mum. They said the tumour in my neck was causing issues with my air way, that radio or immunotherapy would cause it to swell and kill me.
next thing I know is Pip is applied for I have breakthrough meds and Marie Curie nurses/ district nurses in contact.
I asked if they would consider tube feeding and a tracheotomy and was told no. You can well imagine my thoughts that literally this was going to strangle nne. They had taken biopsies of tumour n said it hadn’t mutated so targeted therapies wouldn’t work. Totally bereft how could I let my 16 year old twins, hubby n mum watch me decline. I feel fine, no real symptoms how can this be happening? fast forward 3 weeks my ENT consultant said a tracheotomy is doable and I’m booked in next Thursday. Then I will be going back to challenge oncology about treatments. I’m not ready to die!
Is anyone on the Immunotherapy trial, does this require specific markers ie DNA mutation to get on trial? I want to go back well informed. I feel I’ve lost trust in my oncology team. I’ve been to hell and back the last 3 weeks
