Month: January 2017

§ 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

§ 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