I still haven't had my infusions. 8 days late and no sign that it's going to happen any time soon. There are no words to describe how angry I feel right now.
After my surgery this exact situation (born out of pure incompetence) lead to me being without medication for 6 weeks. 6 weeks was all it took for me to become very very unwell.
I'm angry and I'm panicking. What if all the good work that's been done is again undone by this break? Last time 6 weeks after surgery I was again back at square one. It took another 12 months of unbelievable pain and illness before any one would listen to me. When I finally did end up back in hospital. There were threats of an ostomy bag. In the end I had multiple surgeries instead.
Fuck. Fuck. Fuck.