I resumed my treatment today – trial and chemo. On my computer printout list I have a 2pm appointment. Left home at 12.30 and arrived at hospital comfortably at 1.40pm. Checked in and sat down and waited and waited and .... We are accustomed to delays so we were not unduly concerned. At 3pm Alan asked at the desk how long was the delay (nothing is ever posted) and he was told they are running late and we would be called. At 3.45 Alan asked again – we were getting concerned that the trial drug would expire again as it did before (it is only active for 4 hours). The lady at the desk suggested that Alan went down to chemo unit and enquire there. Off he toddles only to return 5 minutes later ‘Houston we have a problem’! My printout reads 2pm appointment – their computer system reads 4 pm appointment! We went in search of Karen (research nurse) and although scheduling is not part of her role she went to investigate....
Yes they had changed the appointment yesterday.
No they do not know why it was changed.
No they had not informed me of the change.
They do not know why I was not informed.
They do not know who changed it.
Karen suggested we complain to PALS.
So treatment finally got underway and we arrived back home just before 7pm.
Please tune in for next week’s episode of ‘Maidstone Madness’.