§ The Limbo Dance: signifying an emergence from death to life. §
22 November 2016 – Email Update to friends and rellies: It’s a roller-coaster ride……hold on tight!!!
Treating the wife
John was so thrilled the other week to try and get ‘back to normal’ that he walked up to the florist’s in the village and bought me a bunch of flowers!! Aren’t they gorgeous?? And Wow!! If that’s ‘normal’ I’d like some more of it please!!
Keeping upbeat – and getting on with it!
In the last couple of weeks since I last did an update, John has been upbeat and used his time in thinking about, and planning, his various projects. One of the projects has been to support the lads who are preparing Mum’s house for rental, and he has problem-solved on a variety of issues – electrics, water supply, plumbing and installing the new kitchen. He is pacing himself, and generally doing afternoons rather than mornings, and overseeing the lads’ work rather than doing too much physical work himself. He is also doing one day on, one day off for a couple of days in the week.
But the naps are back….
He still gets quite tired and, with the extra brain cells and muscles having to work, he has taken to picking up the afternoon nap again if/when he can. Oh, the lovely settee…..…and, oh the bed……… how cosy they are!!
Enjoying ourselves for a change
On what is turning out to be a bit of a marathon, rather than a sprint, we have also had our spirits kept up by our lovely friends once more, with offerings of an evening out to supper (our first night out in months!!!) where we had a lovely time – and overstayed our welcome because we were enjoying ourselves so much; an unexpected and fabulous fruit cake (oh, dear, there goes the diet again….) which we munched our way through with glee; a wonderful ‘tea hamper’ – extra-special teabags, shortbread and a pretty tea rose, all to encourage a five-minute ‘put-your-feet-up-you-deserve-it’ moment. Oh, and we were royally entertained at the Cross family residence where we had the most fantastic Sunday lunch, cooked by London Chef, Andrew, to belatedly celebrate Dawn’s 60th birthday. John was on top form and kept everyone interested – and we nearly overstayed our welcome there too, as we were enjoying ourselves so much again!! I had to be driven home………….the champagne, the wine and the port were sooooo delicious!
Youngest son – and a new project?
Andrew has come home from London for a while, and John has been helping him think about a vegetable plot in the garden – and between them they sorted out the greenhouse to get it ready to house luscious foodstuff to grow. The vegetable plot has not yet come into being – we are still planning where to actually locate it, and looking to see where any island might appear within what is, effectively, a lake at the moment. John got so interested in this project that he even went to the library to get books out on the subject. Another watch this space, folks!!
Birthday!!
Last Monday was John’s birthday of course, and he was cheered by everyone’s birthday wishes via the Royal Mail, Facebook, email and text. He had a lovely day pottering about, enjoying his gifts and thoroughly enjoyed a steak dinner in the company of his two youngest sons, and imbibing a glass of wine.
Testing….testing….
One of John’s birthday presents was the promise of a bone marrow biopsy on Tuesday which, of course, is his most favourite thing. Well, it’s not exactly his most favourite thing, but, since the introduction of being able to have gas and air whilst undergoing the procedure, he’s calm, relaxed and able to quip quick-fire one-liners so that, actually, you’d think it was a real treat for him!! He chats up the nurses and doctor (female) while suffering the prodding and poking and even grins at me……….. So all in all, the biopsy process went well, and, with the gas and air effects lingering for a good few hours, made our afternoon very pleasant indeed.
So we’ve had a two-week window of ‘hunky-dory’. Yippee!!
Checking results
On Friday we were back in clinic, in the hopes of getting some initial bone marrow biopsy results. They weren’t back, as it turned out; but there were some results from a blood test that had been taken the week before, to specifically measure the chimerism of the blood. i.e. the mixture and percentage of the donor cells vs host cells. Disappointingly, the results are not encouraging, and there is a suggestion that the transplant has not worked.
Crestfallen – and is it as you were?
Naturally, we were both deflated (to say the least!), having been confident that the donor cells were grafting well. However, all is not yet lost – the fat lady certainly hasn’t even got on stage yet, let alone sung. We don’t have the definitive results from the bone marrow biopsy as they take a good while to all come through, and we should know a bit more on Friday this week.
In the blood results, John’s mix is 9% donor and 91% host. For the transplant to be deemed successful we are looking at a lot more donor percentage than that. The consultant we saw however, did say that sometimes the donor cells can increase, even at this stage, and he had known someone go from 1% donor cells to success, so we continue to keep our fingers crossed.
What next?
I think we were both a bit taken aback by the result, so didn’t perhaps ask as many pertinent questions as we should have done. But we did have the presence of mind to ask what might happen next. The consultant advised that he would lower the dose of immuno-suppressant that John is taking, in the hope of kick-starting the donor cells into multiplying. He also arranged for a biopsy of John’s skin, in order to double-check whether the itchiness and rash really are GvHD and not merely a fungal infection. If it is a fungal infection, there is a possibility that they can just ‘top-up’ with donor cells to kick it all off again. If it is GvHD, they can’t do that, and would need to wait a while before making a decision. In any event, they won’t do anything until the six months are up, but there is the possibility that John may need to have another transplant. The consultant told us that the procedure wouldn’t need quite the same level of intervention a second time, but I expect we’ll find out more if it’s actually needed.
Checking out what they’re checking
John is due to the hospital again tomorrow to have a CT scan. I have failed miserably to check out what they are checking out this time, but I will check it out this Friday when we get to clinic.
Flat-lined
As you can imagine, it has felt like we have flat-lined a bit this weekend. The get up and go has temporarily gone a little – to the extent that I had planned to do this update last Friday, but have put it off until today. I think both of us are processing the information we have received in our different ways, but we are both struggling a bit to find the energy to push on.
Another Birthday – and bursting into tears!!
Having said that, John picked himself up wonderfully well on Sunday for my birthday!! What an excitement that was!! He had tied a blue ribbon to my birthday card for me to follow from the kitchen, through the hall, into the lounge and on into the ‘snug’, where he had created a space to install a keyboard!!! Oh wow!! I was well excited!! It was just what I wanted, and I was so pleased………..that I burst into tears!! Oh, come on, Anne, pull yourself together!
And here is the photo of me that John posted on Facebook with the caption: ‘Anne playing with her new organ. Sighhhhhh.’
And bursting into flames………..
In the excitement of the moment, and trying out said ‘organ’, we totally forgot that we were cooking bacon for butties. Imagine our shock when the smoke alarm went off, and we rushed into the kitchen to find it FULL of smoke, the grill on fire and the buttons on the front of the oven melting away!! And phaw!! What a smell!! Eau de la fumee, anyone? Can anyone see the kitchen in this photo? It’s atmospheric anyway……………….
‘Stir Up Sunday’? I don’t think so!!
The hob is still usable, but the oven is not. Fortunately we had decided to have a Thai green curry for lunch with the family rather than a roast (at my request – well, I was the birthday girl), but my plan for ‘stir up Sunday’ and make the Christmas cake with everyone there to give it a bit of stir went by the by, and John spent yesterday dismantling the whole range, cleaning it and ordering spare parts to mend it. He is SO clever!!! Should be back up and running by the end of the week, fingers crossed.
With love to everyone, and gratefulness for the blessings we actually have rather than those we wish for, that’s all for now, and more news when I have something to tell.
Anne