Full Disclosure

Courtesy of Mike I now have internet access.  So here is an update of what I’ve been up to in the intervening period.

We got home on Friday 4 February (which now seems an age ago) to find a couple of letters from our GP pushed through the door saying ‘ring me and then get yourself over to the Royal as your counts have dropped from normal range on 31 December and there is the underlying temp.’

WBC – 3.3

Platelets – 102

HB – 7.9

So after a night on the Medical Assessment Unit with maybe an hour’s sleep, a couple of hours on Saturday on some wacky side ward that you had to be there to believe, four days on a gastro ward and so far five days on blood ward, two chest x-rays, an ECG, five canulas, umpteen blood tests – regular counts, PP levels (which didn’t give an actual PP level but the lab said it was contained within the IGA level of 18) and all sorts of cultures, wee tests, three units of blood, quite a view IV antibiotics and now tablets, numerous temp spikes – it managed to get up to 40 on Friday (and the nurse has just noticed when my temp spiked just that for the last four days it has done it at a very similar time) and a bone marrow aspirate/biopsy (didn’t feel a thing – well nothing painful or nasty) the general opinion is that pending the results of the bone marrow biopsy, as nothing else has been absolutely unequivocally  conclusive, it’s the myeloma.

The doc I saw yesterday, who we’d seen before my SCT, said he was sorry and I asked what for as it wasn’t his fault.  He said because it wasn’t that long since my SCT.

I informed him that if I needed treatment I didn’t want to take dex again as I had zero quality of life on it and B’s and family/friends’ was hugely affected too – it/I was that bad.

The doc this morning said it was likely I would need treatment and it would be Velcade.  He also said, and yes I know it is immodest to share this but hey I have a temp so I don’t care, that he admired my attitude and I was brave.  I said that that being miserable wasn’t gonna fix it unless he thought otherwise and you just had to get on with things.  They will however in the interim keep looking for an infected bug.

And apparently I have the audacity to look well and feel merely lethargic generally and sleepy when my temp spikes – I said I always have to be different but I’d see what I could do about feeling ill for tomorrow’s rounds.


10 responses to “Full Disclosure

  1. Big hugs as usual x

    I’m thinking of creating a top trumps for guys like us. I think we should start our own club as well for bone marrow relapse. we could have rating such as lowest and highest temp. Highest PP and lowest Platelets etc

    The only thing is we would have to keep altering the details :S

    but at least we look OK 😀


  2. Here’s hoping they find a bug instead, Paula. In the meantime concentrate hard on looking suitably ill!!

  3. Hey, I am with Fiona…I hope it’s just a stupid bug and has nothing to do with the blasted BM.
    You hang in there…get some rest…
    And if you need some good Italian chocolate, just let me know…:-)
    (Oh, and a big thanks to Mike for putting you back in touch with us! :-))

  4. You are amazing Paula. Honestly, I admire your attitude greatly. I don’t know what it is with these transplants but, more and more, I am seeing that they either don’t work at all, or only work for a very short time. As I said to Sean on his blog, Velcade is a great MM drug and worked much better than high dose Melphalan in Tim’s case. And, lest you and Sean get tired of the “you look good” comments, I’m sure you both look like 5 miles of bad road. ;o) I was going through photos the other night and asked Tim why he looks like a million bucks and I’m looking more and more like an old hag.
    He told me, “you gotta get yourself some chemo.” Glad to hear from you, girl. We missed ya here in blogland!!!!!

  5. You had us worried. Hats off to Mike for getting you connected to blogland once again.

    “It’s the myeloma.” Gosh, can’t tell you how many times I heard that when they had Vern in the hospital for days and couldn’t figure out what was causing the current issues. I, too, am hoping they find some exotic bug has taken up residence and they can treat that and get you feeling well again. But if Velcade is needed, it was a pretty good drug for Vern.

  6. I was afraid the long blog silence might mean something like this. You are in my heart, my friend. Try to look suitably sick and distressed, okay?


  7. Yes, missed you greatly and thanks to Mike for finding a way to get you re-connected. I will start the intention machine up and get it roaring for the docs to find a bug causing the temps and a solution immediately for the highest and best good of all concerned… so be it and SO IT IS…. whooooo!

  8. Oh well done to Mike – we missed you!
    Pants pants pants.
    But there are still plenty of drugs for you to try. I am sorry to tell you most of them hunt in packs and include Dexys, but hey, at least you get to stay up all night and eat cake (or is that just FL?!)
    We are all rooting for you, honey! Keep on knitting!

  9. I’ve already told Mike that if he has to take dex with the Revlimid I’m cancelling the 14th June! 😦

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