More NHS confusion. Day before yesterday I got a phone call with an appointment in the cardiac unit on Monday for a heart scan and ECG. OK, just routine, I hope. Then yesterday morning I had an email from Patients Know Best. Assuming it was just a confirmation of these other appointments, I got on with some other things before I opened it at 12:20.
Notification of a Haematology appointment at 12:00 - twenty minutes earlier. My Tardis being temporarily unavailable, I hit the phone for Broomfield and for Appointments Central Command in Basildon. Twenty-something in the queue for both. So as I'm due in Broomfield Chemo anyway at 14:00 for pre-assessment, I got in the car and headed for the hospital. Got to Haematology at 13:00, only to be told that they have no record of an appointment for me today, and I was given the firm impression that they don't have a high opinion of Patients Know Best...
Nor do I.
Anyway, secretary told me that Dr.Elshazly would see me either before the 14:00 appointment or after. The pre-assessment came first, nothing new there, just going through my history and etc.. And after another hour in the waiting room, I got to see Doc E, whose voice had just about given up after a long day consulting. I could barely hear her some of the time.
We looked at both the CT and MRI scans. Small lesions pretty much everywhere, one "extra-medullary mass" in the low spine but not threatening any nerve roots, and two big "fleshy areas" in the bone marrow halfway along each femur. So plenty of evidence of active myeloma. I gather that the radiologist for the CT scan was thoroughly confused by the big blob of bone cement in my left hip...
I should be getting the scan reports emailed to me later today. On past performance, I'll have to ask at least another three times.
Treatment starts in the Chemo unit on the 30th, continuing weekly at present. Daratumumab (injection into abdomen), Velcade (injection again), and Dex (2 days of 20mg per week, as before. Sleepless nights coming! Not to mention constipation, but I'm better prepared this time and should be able to manage it OK. Blood tests weekly, and I've just spent a happy half hour online booking lots of them at the Chelmsford Health Hub a few minutes walk away. Couldn't fit the first two in so will have to phone Haematology (Don't make me laugh, in the words of Mr. Ring-a-Ding) to arrange for the Clinical Nurse Specialists to do them.
The long watch'n'wait is over and at last things are starting to happen. That's a Very Good Thing.
If only I could say the same for Patients Know Best.
No comments:
Post a Comment