§ The Limbo Dance: signifying an emergence from death to life. §
17 December 2016 – Email Update to friends and rellies: Is Scotty there? And would he like to beam us up, please?
Apologies for not writing this sooner. We have both had horrible lurgies and are only just beginning to surface.
The Headline………..
…………is that John’s transplant has not worked. However, he is currently in remission with no cancer cells visible in his blood at the moment. As per my previous update, the options are to:
a) Do nothing and wait until he is no longer in remission then take pills; b) Top-up with donor lymphocytes (although is this isn’t real option as he needs 10% of the donor cells in his body already, and he only has 2%); c) Have another stem cell transplant.
At the moment Option C is looking to be favourite, but we are waiting on more developments before we make the final decision.
The Detail…………
………..is that the consultant is reducing the amount of immuno-suppressants John is taking, tapering to zero, in the hope that the donor cells might make a bit of an appearance. If they suddenly see that there might be some limelight to be had, and they dance into the 10% bracket then it is possible to have the lymphocyte top-up. However, this is always assuming that the donor is willing to offer up more of his cells for John to have. We haven’t yet asked the question as to what happens if the donor decides that donating once was enough.
The Back Story…………
………………to all of this that we have been bitterly disappointed that the procedure hasn’t worked, and there is no explanation. It is just a shrug of the shoulders and a wry smile with the understanding that there could be a thousand and one reasons why John’s body didn’t gleefully take up the offer of renewed and healthy cells. The disappointment, of course, is compounded by the fact that the procedure is 95% successful in the people undergoing it. We have been ever-hopeful that at some point John will be in the mainstream of the population and that it would all go swimmingly – but not yet – perhaps next time?
And the response?
John has been particularly hit of course, and has found that his response has been to go to the back of his cave and stay there in the hope that the storm will pass. This has involved lots of inspecting the back of his eyelids in the prone position, either in bed or on the settee. This approach, whilst supporting the mental aspect of dealing with the disappointment and what to do next, has rather debilitated his body and left him in a very weakened physical state. The consultant advises that there is currently no medical reason why he should be so weak, so we know it is simply a matter of building up the muscle-tone again.
Entertaining uninvited guests!
And so, it has been hard to pick ourselves up over the last few weeks – not only because of the searing disappointment to the news we have had, but also due to the rather nasty viruses that decided to invade our bodies when we were mentally low. We had the pleasure of entertaining Mr Cough Virus for three weeks – this guest enjoyed racking our bodies and exercising muscles we forgot we had. It also enjoyed hammering our heads and raising our temperatures. But not to worry, we’ve more or less got over that. Oh, hang on!! Here’s another uninvited guest knocking at the door. This time we think it might have been the world-famous Mrs Noro-Virus, and this guest exercised our tummy muscles all ends up – repeated the not-long disappeared hammering of the heads and added some lovely achy joints to boot. Better now though – phew!!!
But pick ourselves up, for goodness’ sake!!
So Christmas is coming and efforts need to be made, so we have picked up the Cup of Hope again and are facing forwards, not looking back. We’re beginning not to feel quite so sorry for ourselves and have begun the present-buying, house-decorating, food-preparing frenzy – anticipating the fun to be had with family and friends over the festive season.
Happy Christmas everyone!
So on that note, we wish everyone all the compliments of the season and hope you and yours enjoy yourselves whatever you are doing.
With much love, as always.
Anne