OK Myeloma fans: here is the next thrilling instalment.
Back to ARI today: 10.30am appointment, but he was not seen until noon. FL's Kappa score had risen again to 303 (from 264 last time, 250 the time before), but because it takes 3 weeks for the Freelite results to come back from Birmingham, they have decided to give him "one last try" on Revlimid, on the basis that the first rise was so small it was not significant. I find this an odd argument - up is up is up, surely? But hey, if the NHS wants to throw a few thousand £s at my husband in a last-ditch effort to keep him alive, who am I to complain?! Back on 12 July for the next assessment.
We are once again left floundering, not really knowing what to think. It was a new doctor, and FL could not hear or understand a word she said. She had a very strong accent, but more importantly the rhythm of her speech put the emphasis on a different part of the sentence, compared to a Scottish accent, so FL didn't know "where" to listen in a string of words, to put together a meaning. So I had to act as interpreter, which the doctor looked a bit offended by, to be honest. I had explained at the beginning that I was "his ears", so I hope she realised it was not just "her"!
Because of these communication difficulties, FL did not even attempt to ask any questions. She asked him if he had any "clots" and he heard it as "coughs" and told her about his chest infection / lung pain, but she didn't examine him because that was not what she had asked! She even asked if he was on aspirin to thin his blood. Errr.... no... because it would kill him, doctor - he is allergic to aspirin and would go into anaphylactic shock if you gave him it. It is on the front of his file in large print! Yeah, it was a waste of an appointment all round.
So... one more month of Revlimid. If the blood taken today shows a further increase from 303, that's the end of that little pharmaceutical experiment. I just hope we get a different doctor next time: preferably the one named on today's appointment letter. You know, the one we waited an hour and a half to see.
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7 comments:
How difficult and frustrating... it's like our having to go and see medical folks from India... they speak in a different rhythm as well, making some of those folks hard to understand when speaking English.
I do hope (and intend) that the next visit is more productive and promising.
I'm sorry to hear about all the frustrations Roobeedoo. Hopefully the next appointment will be better.
I can't say much about the accent, lol, coz I might be considered to have an accent as I am not from the UK, so all I can say is its hard on those with foreign sounding accents too. When I first came here, I had difficulties understanding people here. Not because I don't know English, but because as you both mentioned, the intonations are different.
I'm sure the doctor realised it was not just her, except of course if she is newly arrived in the UK (if she is from abroad that is)then she might be offended.
You have a way of making something so serious sound funny. I really admire you Roobeedoo.
Oh dear :-( Good luck for next month's appointment.
How awful for you both:( it is hard enough having all the medical stress without the language problems. We had so ethic similar last wek and I had to try and interpret. Sending lots of positive thoughs your way
So sorry to hear this. I hope you can bracket the experience (as you obviously have had to do more than once already) and get on with enjoying your lives as best you can.
I guess the NHS just don't think continuits is important...
I'm just gonna go with 'bugger'.
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