I had hoped that we were going to have a positive visit to Papworth yesterday....it wasn't too bad whilst we were actually there in that we saw a new consultant, who was lovely, and very thorough in getting to know the FH but then it all got a bit complicated when the blood results came in and the nurse phoned here at 5pm with changes to the medications.
And I wasn't here, so the FH got in a bit of a stew.
Apparently, he is neutropenic at the moment, so we have a change of immunosuppressant drug and a doubling of the steroid treatment he has been on for a while. However, that is not as simple as it sounds. He has been taking Cellcept for 15 years now, and this has been stopped completely for the time being. A drug that was stopped early last year, Neoral, has been re-instated in a low dose. However, we didn't have any of those here [well, you wouldn't, would you?!] and I didn't think that the village surgery would have any in stock either. The Cellcept was stopped yesterday with immediate effect, and we were instructed to acquire the Neoral and start that this morning. Mmmm. Easier said than done.
I was at the surgery at 8.30am when it opened, and I spoke to the dispenser who confirmed that there was none to be had there. So I asked for a prescription for some, and she said it would be ready tomorrow....No, I need it now! So I had to ask for an appointment for the doctor, who starts seeing patients at 9am. There were three in front of me, so the dispenser and I agreed that I had time to bomb off into town to deliver the YFG at her work experience placement and get back in time. This I did.
However, my place in the queue was not held, and when I got back, I had dropped to 7th or 8th, and I sat in the waiting room for an hour - can't complain about that when the air con was on and it was lovely and cool in there! It has been rather muggy here today. I eventually saw the doctor, who was sympathetic and did ring through to the dispenser to see if there was any other way of getting the meds. Realising that there wasn't, I acquired the precious prescription and came home.
The EFG went on the internet and called up all the phone numbers of local pharmacies in the towns nearby, and I started ringing round to see who had got some of the stuff. Luck was on our side and the first one I called had one box so I gave the lady our name and told her I was On My Way!
The FH finally got the first dose at 11.40am, and then went off to the lunch club. I had a well earned sit down with a cup of tea.
I did three loads of washing this afternoon, had a sleep and then returned to town to pick up the YFG at 5pm. We also went to a different SW club tonight to get weighed as the EFG has a babysitting job tomorrow that means our usual meeting wouldn't work this week. She's lost half a pound and I have lost 3.5 with all this rushing around!
3 hours ago