§ The Limbo Dance: signifying an emergence from death to life. §
28 November 2016 – Email Update to friends and rellies: Here are some options…….which one do you fancy?
Clinic on your own?
Well, John went to clinic all by himself on Friday. I had gone down with the dreaded lurgy and was bed-bound; and anyway, as John pointed out, it wouldn’t have been very fair to other patients to be taking something nasty into the clinic for everyone to enjoy. So he hooked me into a conference-call instead.
But is it GvHD?
The bone marrow biopsy results weren’t back, but the skin biopsy results were. The skin biopsy suggested that John doesn’t have GvHD after all, but a simple fungal infection. Cue: great heart and soul-searching as to where on earth this might have come from. Reassurance from Paneesha who said fungus is airborne and everywhere so, with John in a slightly lessened immune state, it’s easy to catch. A bit of a sigh of relief, but we want to be convinced yet, so more questions next time we go……
Cream was prescribed to ease the inevitable itch – and we guffawed over the size of the tube provided, which will be enough to do a forearm for a couple of days if we’re lucky, rather than a whole back for a fortnight. Hey-ho! Hey-ho! It’s back to Boots we go……
Setback
Paneesha seemed fairly sure that the transplant hadn’t taken however, despite the absence of bone marrow biopsy results, and he also seemed fairly sure that the CLL (Chronic Lymphocytic Leukaemia) was not evident either. He offered three options: 1. Do nothing and take pills if the CLL comes back (which it probably will as it’s remission, not cure); 2. Top-up with the donor’s lymphocytes if there are any knocking around at the back of the cupboard (risk of a nasty dose of GvHD, but definitely worth a go); 3. Have another transplant.
So away John came with food for thought – and perhaps a discussion with the wife if she would only rise from her sick-bed.
What to do………
Option 2 looked favourite, but today, Linda, one of the specialist nurses phoned to say, “Had a rummage in the cupboard, John, and it was bare – there’s no lymphocytes there.” Hmm……. Is option 2 out of the window now? As we are both feeling short on fuses just now we can’t agree whether option 2 remains in or out, but we have agreed to disagree and talk to Paneesha when we go again in a couple of weeks.
Wanting to share
In the meantime, being of a very sharing sort of nature and not wanting to keep things to myself, I have infected my husband with the lovely bug I have had all last week and he’s now coughing like a trooper too. We could almost set up the percussion section of an orchestra between us…………
Surprise!!
Meanwhile, lovely friends and family are cheering us up with their company and tokens of love – gardening to the fore this week following my update last time, with a fabulous gardening magazine to help us plan the vegetable patch, and a lovely tub of winter flowers. And, unexpectedly, a MASSIVE surprise from our lovely niece Christiana, who, having discussed the idea cloak and dagger-like with the boys, has booked us a week away next February in a cottage in Devon, through a charity she has links with. We are overwhelmed – and haven’t thanked her properly yet, both being virus-ridden and a bit non compos mentis. But wow!!! How thoughtful is that? Being our favourite niece we know how wonderful she is ordinarily but this has exceeded all expectations. She is a STAR!!
To add to the cheering up stakes, we are, of course, constantly amused by Freddie who is just such a delight that we can’t help but smile and be thankful for his presence.
Decision time – again, again
Back to the clinic in a couple of weeks – and in the meantime, we will be thinking about the options available so we can make a decision when asked – although, I think John knows what he is going to do already……………
All for now.
With love and hope in our hearts.
Anne