§ The Limbo Dance: signifying an emergence from death to life. §
3 January 2017 – Email Update to friends and rellies: Hope: please enter stage right……..
Let’s do it again!
So we toddled off to meet with the doctors at Heartlands on the Friday (23rd) before Christmas, and confirmed that John would like to go ahead with another transplant, if possible.
Please, Mr Donor…..
The doctors have duly applied to the donor to see if s/he is willing to syphon off a few more of his/her body cells for John to use, and we go back to the clinic this Friday, hoping to know whether the donor fancies continuing to play the game. The doctors have asked for two things: i.e. lymphocytes and stem cells. This gives the option of having a lymphocyte top-up, should John’s chimerism (volume of donor cells vs his own host cells) show promise i.e. 10% or more of donor cells floating about in his blood. The results of the specific blood test should be available this week, so fingers crossed.
As regards a timeline on all of this, we are not totally sure, but think that it’s all likely to happen sometime towards the end of February/beginning of March.
And what’s new now?
In the meantime, the itchiness has continued to bother John, particularly on his head and back. He has intermittently complained that the itchiness appears to be where his hair is growing, which we clearly have taken little notice of previously. And so, because it is getting to be a bit of a puzzle as to why (if it is a fungal infection) there appears to be little healing going on, despite the lotions, potions and pills he’s applying and swallowing, John thought he’d have another go at bleating to a different doctor that the itchiness is where his hair is growing. Hmmm……let’s have a look……mmm…… yes, the skin seems OK/better really, doesn’t it? Hmmmm………well, we know it’s not GvHD, and we can’t see the fungal infection…………ah-ha! It’s probably folliculitis.
Well!!! That’s interesting – something else to add to the list!! Cure? Antibiotics. Not that John was prescribed any more antibiotics than he is already on, so the itchiness continues, and we will bleat some more when we go to clinic on Friday.
Take heart (??!!)
In terms of fitness, John has been struggling to walk more than a few paces before getting out of breath. We anticipate that this is just because he has been lounging about and not doing anything very much, leading to muscle wastage, but the consultant thought he’d better get John’s heart checked out again just in case. That appointment is due in the middle of the month so we’ll know more then, but I don’t think we are really expecting anything untoward.
Crack the whip? Qui, moi?
In the meantime, of course, I am holding back on cracking the whip – not just because I am not keen on the growls that come in response to the whip-cracking, but obviously because I am not keen on the idea that John might keel over! However, he has made a bit of an effort over the Christmas break and accompanied middle son on a dog-walking expedition and, surprisingly, opted to walk rather than drive, to the Saracen’s Head pub the other day for lunch.
Projects, projects, projects.
Our current mood continues to be rather low, despite lovely Christmas celebrations with our wonderful family and friends around us, temporarily cheering us up. John has yet to find anything to keep his interest other than TV and books – yet there have been flares of interest in a variety of things such as making a fold-down bed for Michael’s study; sorting out the family photos; uploading old black and white photos to the computer via an app; and helping Andrew to set up the vegetable patch. Although nothing has come to full fruition just yet, due to the physical and mental lethargy John is feeling – watch this space folks, Christmas presents might just have done the trick to kick-start one of these projects!!!
C’mon!! It’s 2017!!!
We decided to spend New Year’s Eve quietly at home on our own, following the hectic-ness of Christmas, which was nice, if a little unexciting, and so here we are, taking tentative steps into 2017, still planning for the light at the end of this rather long, dark and spiky tunnel, and doggedly tramping on to see what happens next.
We are hoping for great things in 2017 for ourselves of course, but we are also wishing you all the most wonderful year ahead and hoping it brings all you are wishing for too.
With much love. Anne