I have IBC which is a rare breast cancer. I'm stage 4. I was doing exceptionally well on treatment until I finished chemo. I elected to have an extra 2 sessions which almost killed me, but as the cancer was also halted I felt it was worth it.

I have continued on target drugs which I've become allergic to. On Wednesday it was decided halfway through my treatment that it was safer to discontinue treatment as I was far more likely to die from the treatment than the cancer.

I was scheduled to have my next treatment 3 weeks on. An emergency appointment has been scheduled with my oncologist the day before. As I know the treatment won't go ahead I'm dismayed that I haven't been given an earlier appointment.

A reaction like mine has not been seen before. Throw in a rare cancer that originally gave me less than 2 years to live and I don't know where I'm at..... I'm devastated because I was getting such good results on the drugs I was on. I'm scared because now I'm a guinea pig using drugs that haven't been used on this cancer before. And I'm not ready to go yet. My children aren't settled down. I don't yet have grandchildren. I've got too much left to do. I'm not ready to die!

Nobody knows what to say to me and I get it. But lots of people aren't saying anything. 

I'm just writing what's going around in my head so I don't expect anybody to respond.