Another jolly half day in Haematology. Illegally parked again but we got away with it this time. How can it be that the entire car park is full and people are having to double-park on pavements at just gone 9am? Herrumph.
When we saw the doctor, he was rather concerned that FL had not been back since 1st March. According to the Revlimid protocol, he should be seen every week for the first 8 weeks. We explained that The Prof (aka Dr Nuisance) had sent FL away with a flea in his ear on the 1st. The doctor smirked - he couldn't help himself! Ah yes, the Prof....
Luckily, FL's side effects have been managed by his GP, although there was a total mix up over his Warfarin, as the hospital thought the GP was monitoring his INR and vice versa. As a result, it was up at 8, when it should be around 2. His blood was so blinking runny it's a wonder he wasn't leaking through his pores!
Anyway, onto the numbers: his kidneys are OK, his platelets are OK, his white blood cell count is OK. His Freelite results were back from Birmingham. This is the result from blood taken on 22 February, so this is the score against which the effectiveness of the Revlimid will be measured. Are you sitting comfortably?
Kappa Light Chains: 502, that is FIVE HUNDRED AND TWO for the hard of hearing.
To put this in context, his score was 44 in November and we thought that was bad. It was only 497 when he was first diagnosed, for goodness' sake! So, yeah, FL's myeloma is back with a vengeance. If the Revlimid is not working, his numbers will still be rising even now.
So how is he feeling? Very, very tired. He hasn't felt able to golf as often as usual, though he was there on Sunday. He is complaining about new persistent pains in his back and most recently in one shoulder. Quinine is controlling the cramp. He has an antibiotic for his lung infection and an anti-fungal for oral thrush (the sore tongue issue - phew! Glad that's all it was!)
They took his blood again today to send off for a Freelite test. We will get the result in a month. FL successfully argued that he didn't need to come back every week if he has managed the past 3 weeks with reference only to his GP. It will save us a fortune in parking tickets.
Many rows of Betty Jean knitted in the waiting room. I have a headache.