My updates have been getting slower, partly because there’s not a lot to tell, and partly because I am now just feeling trapped and unable to do anything – so have resorted to washing, ironing and cleaning – in addition to becoming addicted to Jeremy Kyle, Loose Women and The Chase. I was going to give up soaps, but now I’m not only hooked on Corrie, but have become fairly involved with Emmerdale. I haven’t quite succumbed to Eastenders as I just can’t cope with all the shouting, well… not after Jeremy Kyle!!
So, last week. Friday was the three month day since my transplant. I can’t believe it has all happened really. When I look back it only seems like yesterday that Dr Janes was saying “I’m sorry to tell you…”, but when I think about the journey it seems to have been going on for ever.
I now only have to go to Southampton every two weeks, but was dreading it this week as they have to take blood from my arm since I had the line out. Last time was such a nightmare, causing tears and everything. This time my heart sank when I realised it was the same girl taking the blood, but, she got it in one!!! I think she was a surprised as me, and once she had taken twelve buckets full (it might have been test tubes), she even thanked me for letting her do it. Anyway, they have carted it all off to do who knows what with. Apparently they needed a lot to do every test imaginable so they can get an idea of how things are going. They also check the Chimerism which tells them how much of Jane’s marrow versus how much of mine, so fingers crossed for more than 90% now I’m off the cyclosporine.
Next Monday (17th) we’re back off to Southampton for the 100 day bone marrow biopsy – so I’m looking forward to that!! It’s hideous, so I hope they have plenty of gas and air on standby, as well as a box of tissues to wipe my eyes with. Zig says I always look very sorry for myself after having a bone marrow sample taken, a bit like a small girl who has just had the back of her legs smacked by the head mistress!! Hmmph!!! We’ll then have to wait another 10 days until we get all the results of the blood and bone marrow tests, which should give an indicator of progress so far.
I don’t suppose for one minute it will give them an indicator as to when I can have a little drinkie. A month ago we asked if I could have a small glass of wine with a roast lunch and were told “not for some time” by the consultant. So when we went last week we check with the senior post transplant nurse just in case the consultant has it wrong, and were told “absolutely not”. Next time we’re going to ask if I can have a small dash of brandy in my coffee as a bit of a warmer – but I’m not holding out for good news on that either.
On the plus side, I still feel OK, my hair is growing (slowly) and I have now started using a bit of some sort of styling wax stuff that I found in the boys bathroom cupboard.