Archive for February 6th, 2019

Wednesday 6th February… More frustration, but maybe some progress?

I resolved not to chase things up today, so I was pleasantly surprised to receive a call from the the CNS office apologising for not calling me back yesterday, but saying the Ibrutinib was here and ready for collection (Clinical Nurse Specialist) – but she would check that it was in the outpatient pharmacy before I came out to get it. Great excitement – until I received a call 5 minutes later to say that it wasn’t there and it wouldn’t be here until next week. I don’t know if this is because of the conditions of supply or just a bureaucratic mix up, however I have a clinic appointment next Monday (supposedly to review how I was getting on with it) so I may be able to do some digging then – not that it s likely to speed things up. So somewhat unsatisfactory.

I do have a plentiful supply of the steroids so I’ll keep going on those. I suppose it doesn’t help that I have had a bad cold for the last three days, which is making me feel a bit lethargic and wary, I don’t really want infections at the moment (although I’m not neutropenic) but I hope I will be on the mend by the weekend.

So feeling a bit disgruntled at the moment, although I have some reassurance that the situation is being monitored more closely and I hope my name is near the front of the minds of all those people involved in the procurement!

And on the plus side – more toast and marmalade! 🙂

So, rather slowly, Onwards and Upwards.

2 Comments »