Just got some good news 😄 The meth that I get so excited about every Tuesday isn’t actually helping much. Just seems to be making my brain mush for days each week. THAT ISN’T THE GOOD NEWS!!
Despite worries over funding and whether or not I’m ill enough to qualify – and was maybe going to have to try other things like cyclophosphamide first (stronger chemo drug than the meth) its looking like I can maybe get weetabix pretty soon!! (Sad bit is they obviously don’t like the look of me if they think I meet the criteria 😕). The secretary for rheumy consultant just rang to confirm to stay on mid-dose steroids for now, poss emergency/temp pain control of some sort is being sorted – not sure what 😕 – liquid morphine maybe?!
My Dr has spoken to someone in Manchester for help on my case and from whatever they have advised it looks like the weetabix is a go!! She will ring me this eve or tmrw to confirm details. Dosing me up will need hospital admission but I can poss negotiate a day release like I did for the last five days of iloprost (cannulas and all 😉) – or maybe go in over a weekend…
Work will be unimpressed no doubt, but if I can manage to negotiate flexi time use by going in during the day, I can hopefully avoid another dismissal stage trigger and not lose my job for the sake of being pumped full of toxins. Assuming it won’t be much fun but happy to get a chance at the current drug of choice for my condition!
[By weetabix I obviously mean rituximab 😉]
[I actually really don’t like real weetabix]