Appointment day today and my readings have changed as follow;
Protein up 4 to 44g/l
Hameoglobin down .3 to 11.1
Calcium - back in the normal range (can't remember what exactly).
Strangely, my consultant seemed to think it was fine and not at all concerning. He didn't even seemed that bothered about when my next appointment would be...4 weeks or 6 weeks? The reason I think it's strange as when my protein readings stayed stable last time, he saw it as imperative that he saw me in 4 weeks. And seemed to suggest that it needed monitoring very carefully.
I asked him about getting my siblings tested for a Stem Cell Transplant (SCT) in case I need one at some point, as one of them is going to live in Beijing for 3 years. And he pretty much told me I was getting ahead of myself and was being ridiculous. And when I suggested that everytime I was ill, my levels deteriorated, and that this time it had happened, but not as badly, because in my view, of the curcumin I've been taking, well, you'd think I was talking to him with a yellow and blue monkey on my head!
So why he bothered to ask me if I had any pain in my back I'm not sure, as I was very much inclined to tell him where to stuff his question....not very polite I can tell you.
Should we change consultant? Well it seems like a bad idea at the moment because of the fact that he fits his diary around us which is great with Nick being away so much. And he is close which makes it easier for these 4-6 weekly appointments we're having. But if he makes me feel like he did today again, I will be looking to change.
Anyway, onwards and upwards....I have 6 weeks till the next appointment so I've just ordered another 6 weeks supply of 1g curcumin tablets (only a snippet at £85...uurrgghhh!!!) and am determined to prove to him that it does have an impact and is not just a new fangled idea sprouting from health food shops to make extortionate amounts of money out of us poor sods who will believe that anything will keep them alive for longer!!!
Ironically, Nick put some music on in the car as we left the hospital.....and changed it before I sat down....luckily...it was Ironic and Stay with me....the song that I'd sworn I was having at my funeral in my moments of doom and gloom.....but it made me laugh when he told me today. I'll try to attach it as I love the song!
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hi Deb, I had a few setbacks and delays in my treatment and am now getting there, but I do think that there sould be good vibes and respect and empathy as well as just straight care from your consultant, he is no more important than any of us and your opinions count, as even the experts are having to learn this one. Keep on talking to him monkey or no monkey, and "Stay with us"
ReplyDeleteMikexx