§ The Limbo Dance: signifying an emergence from death to life. §
26 September 2016 – Email Update to friends and rellies – More to contend with…..
Playing a little waiting game
I have delayed an email update this time so that a) I don’t inundate everyone with every bit of minutiae, and b) to see how events panned out this week.
Not-so-good a week
In the event, it’s been a not-so-good week. I was excited to get The Man home at the weekend but he was very weak (although that’s improving, yay!!) and he still felt a little under the weather. Not only that, he started to develop a bit of an itchy skin over the weekend. By Monday, I suspected all was not quite right as I knew such a thing might be symptomatic of GraftversusHost disease, so we toddled back to the hospital for an emergency appointment and check-up.
And so to the 50/50 odds…..
Our suspicions were confirmed, much to our mutual disappointment.
Stats are wonderful things, giving us hope on the one hand but also alerting us to possibilities/probabilities, and in this case it’s a 50/50 chance of developing the disease. I think we are both particularly disappointed that John isn’t in the 50% category of people NOT developing the disease. Darn it!!!
But it’s not all bad…….
However, having said that, it’s not ALL bad!! (Not sure John would agree at this stage as he scratches another itch!). The consultant said that if you are going to develop the disease, this symptom is the better of the selection you can get, as it’s ‘mild’. It also demonstrates that the grafted cells really are working.
Monitoring and creaming
We are told that the consultants will keep a close eye on John for the time being (appointments three times a week, and I think the car can now drive itself along that stretch of road!) so that they can monitor for any developments and prescribe treatment as necessary.
Treatment currently is hydrocortisone creams to be applied twice or thrice a day, and antihistamine to calm things down six-hourly. Obviously, John can’t quite reach his back so, a three-times-a-day routine is beginning to develop………of time together in the bedroom!!!
Feeling blue
Needless to say, John is a bit browned off at the moment, but if we can just get the hang of the right quantities of hydrocortisone applications, the timings of pills and the regulation of temperatures, it’ll be manageable.
Fabulous Friends
Once again, dear friends and family are coming up trumps to support us, for which we are eternally grateful. Especially at this particular time when I’ve been winkling Mum from her home of nearly 40 years to her new flat. She has been/is being an absolute trooper too, working with various of my friends to pack stuff into boxes.
And we’ve had some fun as John opens up another exciting parcel or goody bag of items to keep him interested and amused. And whose idea was it to suggest he have a bell to ring for service???!!!!!
All for now, as I have some more whizzing around to do – and with much love to everyone.
Love from Anne