So, after our daughter died, saw the consultant, he wants more tests done (after 9yrs, more!) Sat waiting for my op assessment after constant chasing of referrals for these tests so finally got that all arranged (which is right next to fetal medicine so surrounded by bumps), in order to find out what treatment we can have and get it started as soon as possible for us. Counsellor from our clinic has now advised me there's no chance of treatment before next year and that I'll turn into a "basket case" if I don't return to work soon, that our expectations need adjustment, she can't see me more than once every 5 or pm weeks, and I have issues with spending money. My baby died not even 3 months ago, and I work with children. It's a very difficult situation for me. I struggle spending money because for years it's been save save save for treatment, and at no point has anyone told me that there is no hope of treatment before Xmas, so yes, actually it's a shock to us both and we're devastated by it. Can't help feeling no matter how supposedly well intended her words were, that actually she is unable to empathise with a grieving mother and father. I also feel using the words basket case, well, it's inappropriate at best.
It's tho lack of information, the constant fighting to get the information we need. I'm devastated