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.