Well, I saw my specialist today. And as suspected (see this post on my other blog!), because my immunoglobulin levels are so low I do have to have the monthly infusions ... in fact I'm having the first one on Friday!
I'm just going to have a bit of a hissy fit, OK, and then I'll calm down and it'll end up being a part of my 'normal' (!) life ... :)
But right now, this second - I so did not want this to be happening to me! I know it's not a huge thing in the whole scheme of things, specially after what's happened to me in the last year or so! But somehow it really got to me. Almost more than when I was first diagnosed, oddly enough!
Actually, just re-reading that makes me smile and feel somewhat better! I really do need to get a grip on reality!
The waiting room was heaving with people and Dr B was a little harassed! I think there had been some double-bookings or something. And there was me trying to weazel out of having to go through this whole regime (which I might add, is open-ended - ie. every month indefinitely!!). I kept bringing up this and that that I'd heard about on forums, or read on blogs, and he basically kept coming back to the fact that he was the lymphoma specialist and he sees/treats first-hand many many lymphoma patients. Really, (and this is me speaking now) - who is the lymphoma expert? Me because I've read a lot about other people's experiences with it, or him who is dealing with patients and treating their problems every day ... ?!
I think it's the bronchiectasis that I've developed that is the main culprit. If I hadn't come down with that, then even though my immunoglobulin levels are low, I might well have been able to avoid the infusions. But apparently once you have that, it's a prime source of infection in your lungs and because I have a damaged immune system I'd be likely to end up in hospital for a week each time!
So - there's no avoiding it! As I knew all the time. My feeble attempts at knowing what was the best treatment for me better than him were always bound to fail. And I really do know that in a month or two, this will turn into 'no big deal' - as my friend kept telling me at lunch! I was in such a state through the appointment that I never asked about my blood counts or asked a lot of the other questions I had ... I'll be seeing him again in a month and hopefully I'll do all that then!
I did go up and see the nurses after my appointment (Dr B's rooms are on the ground floor of the hospital I was in) and they were very pleased to see me (and the home-made fudge I'd brought them as a Christmas present!) Big hugs all round - and they said they'd make sure I got through the infusions quickly!!
I do feel better after all that whinging (Aussie term meaning complaining!) and stuff! Hopefully I've now got it off my chest and I shall just go back to enjoying life! Which is good, let me not forget that! :)
Wednesday, December 17, 2008
Sigh! and a bit of a hissy fit!
Posted by susiegb at 7:56 PM
Labels: immune system, NHL
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3 comments:
I'm a big believer in throwing the hissy fit, whinging and whining or feeling whatever emotion comes to the surface. "Your feelings are your feelings," a favorite teacher used to say. Glad you're coming to terms with this latest confirmation.
Sorry you have to get the infusions, but it's better than ending up in the hospital and infinitely better than dealing with cancer! Bring some good books or magazines or newspapers or music and then just space out. Look at it this way, it gives you time to do nothing other than amuse yourself.
Yeah, I know, I know! Thanks both of you! I think maybe part of my reaction to all of this is that I hate being tied down! And now I will be, once a month indefinitely (I'm not saying 'for ever'!!)
I said to him - but what about when I go overseas for more than a month? (Which I'm planning to do in 2010) And he just told me to stop panicking and we'd see how it was all going then and work something out! ... :)
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