If you read yesterday's post you will know that FL spent the whole day at the hospital for a 5 minute consultation and his regular zometa infusion.
When I got home (not long after him, ironically, despite me having gone back to the office to do an afternoon's work) he mentioned that they hadn't taken his blood to send to Birmingham. They usually do it when he is having his infusion. He had asked the nurse to check, and she had come back with the news that it was, quote: "Too expensive to send blood to Birmingham every time". WTF?!?!
FL was by this time too tired to argue, and he didn't think to mention it to me when he came out of the infusion room. I was still at the hospital with him at that time. I just don't go into the treatment room with him as there isn't enough space for patients and carers. It's a busy clinic.
So this morning I rang the hospital and was eventually put through to the doctor we saw. I explained the issue... and she asked me where we lived. Eh?
She then spun me a yarn about how she thought he had had his bloods taken yesterday morning in the clinic before he saw her, not the Friday before at his own GP. And something about city patients having their blood done "in the community" and everyone else having it done in the hospital. Well he certainly isn't a city patient, and I know for a fact that GPs can't send blood to Birmingham because that is a consultant-level deal.
We are talking about two different levels of blood test.
The nurses tell us off if FL forgets to get his GP to do the blood tests the week before, as it slows down the clinic to have people queueing twice: once for blood tests and once for the doctor. Does this mean we didn't see the doctor until 1 1/2 hours after his appointment time because the doctor thought she was waiting for a blood test result... that was already on file? I'm not buying that.
On the face of it, it was just a simple mistake: she forgot to write on his notes that he needed his blood taken again to send to Birmingham. But why did she feel she had to spin a yarn to cover up this simple mistake? It makes me worry that she might have made other errors. That she didn't even check his "ordinary" blood tests (or surely she would have seen the date?)
But the comment about it being "Too expensive to send blood to Birmingham every time" is the one that really gets me. The nurse would not have said that off her own back. How much does a Freelite test cost? The last time I checked it was £10 plus post and packing. How much does Revlimid cost? £3000 a month. So they would spend £3000 on a drug but not £10 on the test to check whether or not it is working?
So... the Doctor told me over the phone that he can just turn up at the hospital "anytime" to get his blood taken for a trip to Birmingham. I have relayed this information to FL, who is understandably not happy about another trip into the city to spend the day in a waiting room. I would like to bet that when he turns up they will deny all knowledge and there will be a rumpus.
But what else can we do? If he doesn't have his Freelite test done, I don't think they can "legally" prescribe Revlimid next month. And we need to know how fast his kappa score is rising, since his life expectancy is predicated on this magic number! What if it has already hit 450 and they don't check it until next month, with no result until September? My understanding of myeloma is that it multiplies: it's not just a simple addition sum, it is a multiplication.
The average multiplication factor between his March and June kappa scores was 1.078. So let's call it 1.08. Remember doing "compound interest" at school?
Taking his June score of 315, by July we might project his score to have risen to 340; August would be 366; September 395; October 425; November 459 DING DING DING DING DING DING! Your time is up!
And that is assuming the multiplication factor remains steady, what if it increases? Whoever said it would be a straight line graph and not a curve?
Take his damned blood and send it to Birmingham, doctor. I will pay for it myself if you like! We need to know where we stand.
P.S. While googling the clinic telephone number I found a job advert for a Speciality Doctor in the ARI Haematology Clinic. The starting salary is £36,807. I saw an advert on the side of a city bus saying the salary for a bus driver is £30,000. Forgive my cynicism, but can this be right? I sincerely hope the NHS are not appointing at the bottom end of the scale. Surely only a newly-qualified doctor would accept a salary just above that of a bus driver? And should they not, therefore, be supervising the new staff very very closely? This is my husband's life we are talking about!
Rant over. For now.