§ The Limbo Dance: signifying an emergence from death to life. §
13 September 2016 – Email Update to friends and rellies: He’s settling in……. and our wonderful NHS
Nearly a week has elapsed since the euphoria of John coming home and the mad rush-around to get the house cleaned as best we could before he got here. And so far, he’s not doing too badly.
Keeping Clean…
We went back to see the consultant, Dr Paneesha, on Friday and the blood counts show that they are coming up, so we are on the right track…….. John is, of course, at risk of infection and Dr Paneesha said he wouldn’t relax until at least nine months had gone by and John was still fighting fit, not having succumbed to any dreaded lurgy. So we are cleaning, cleaning, cleaning; taking our shoes off at the door (something we slovenly Sleaths have never really done before); barring the cats from the house; no snogging; and washing, washing washing!! Note to self and others: must keep this up for the next year, don’t get complacent………..
Being a ‘difficult case’
John still has his Hickman line in place, but the consultant said it should now be taken out as there is a risk of CMV (Cytomegalovirus), which John indicated positive for when he was ill last November, but then indicated negative for just before his transplant.
Dr Paneesha said he is ‘a difficult case’ – well, there never has been anything straight forward with John of course!!! He always like to be unusual – CMV can be prevented by thoroughly washing hands with soap and water (especially after changing nappies!!!) and avoiding coming into contact with the saliva of young children. No snuggles with Freddie for a bit then! Or changing his nappy – which, of course, I am sure John was planning to do!!
Can we please be in the minority for once?
We have been reading that 8 out of 10 patients have to go back into hospital within the first month having caught something, and often during the first year following complications, but we are hoping that for once, he’ll be in the 2 out of 10 people who get through without too many hiccups.
Enjoying the garden…
John is enjoying his time at home but he is very tired and has some days when he feels better than others – this is to be expected for a good while yet. He has been grateful for the warm weather and the chance to sit out in the garden. He has also been grateful for the very many chairs I have placed in the garden over the years. He can stagger from one to another without getting too tired – see how thoughtful I have been? (For those of you who know my obsession with chairs, I hope you find this as amusing as we have!!). And he has been admiring the garden and the house from every conceivable angle due to my generosity!!
He is also wearing his trusty new hat (which I have yet to take a photo of) because even the autumn and spring sunshine can stimulate Graft versus Host disease, where the grafted cells attack his own cells as the enemy and which could make him feel very unwell. They can treat such a thing, and they are monitoring him at the moment for this just in case as it is quite common.
……And enjoying trips out
John is venturing out into the streets, too, and has made a few trips to the shops to buy a paper, and we even went to Baddesley Clinton National Trust property on Saturday for a walk in the gardens to see their rather famous dahlia beds. He managed all the way round the garden path (which I had led him up….) and through the woods round the lake too. He slept well that night!! It was a rather damp day, but that didn’t dampen our spirits – we enjoyed dodging the people who were coming towards us, and John made great use of his hanky whenever there were children nearby, just in case there was a cough or a sneeze or even a breath!!
Check Up
We are due back to the clinic again on Friday, having progressed through the clinics, from the Wednesday clinic for check ups and monitoring, through the Monday clinic (next steps, getting ready for a transplant) to the Friday clinic (BMT – bone marrow transplant clinic) where he will be monitored as often as necessary. This may be weekly at first then fortnightly/monthly depending on how things go.
Celebrating our wonderful NHS
I am busier than ever – I thought it would be just relaxing now John’s home and putting my feet up – but, of course, there are no nice cleaning people to swab the room, floor and equipment every day; or nice cooks who make lovely meals; or nice nurses who sort out the pills and take his temperature; or healthcare assistants to change the sheets, or bring a cup of tea and a biscuit and a chat. How wonderful the NHS is and how brilliant those people are as they go about their daily duties under pressure – John and I see it every time we are there and can’t help but marvel at how well trained and well-informed they are. As we develop our own routine at home, we realise just how hard they have to work to keep the nation’s (and John’s) health going. And we are truly grateful that they are there for us.
Anyway, all for now – here is a lovely picture of John at Baddesley Clinton wearing his old beanie faithful alongside the wonderful display of dahlias.
Love from Anne
