leukaemia-limbo-dance

§ The Limbo Dance: signifying an emergence from death to life. §

1 November 2016 – Email Update to friends and rellies – I think he’s getting better….

Last of the Mohicans?

Hmmmm……….well, John’s halo didn’t last long! His hair is growing apace!! Interesting re-growth, too. Soft, silver – almost white – hair at the sides, and a wonderful iron-grey Mohican down the middle – clearly, he’s trying to re-live his youth. And it’s all at least a quarter of an inch long, so lying smoothly over his head now. Gone, abandoned, are the caps covering up the bald pate, without so much as a backward glance. Yup, it’s onwards and upwards folks!!

Hospital – now fortnightly

Generally speaking, a gradual, steady improvement continues. Itchiness continues to be less itchy – we are not sure if that is a good or bad thing, of course – strength is returning, and interest in what’s going on, on the up. The consultant is pleased with progress and extended John’s visits to clinic to fortnightly when we saw him ten days ago, but he still reminds us that the proof of what’s happening will be when the bone marrow biopsy results are in, later on this month

Taking a walk on the wild side

In the meantime, John was referred to a physiotherapist to prepare a programme of exercise to build physical strength. The doctor and physio at the Marie Curie Centre were pretty impressed with John already, and confirmed his programme of a few minutes on the cross-trainer each day, as well as a prescription of going for a mile walk, three times a week – with the wife!!! Trouble is, he nearly forgot to take me today!! Oh, the chemo-brain!! Now we just need some exercises to strengthen that too…….

Being opinionated – what’s new?

However, having said that, we are still seeking John’s opinion on things, and (mostly) heeding his advice which is proving pretty sensible, so the chemo-brain can’t be that bad. And he is still offering unsolicited opinion on world events and all things political of course, so we are all kept amused and thought-provoked every day. Equally, he is bearing up for longer periods of time than previously whenever we have visitors. Enjoying the company of anyone and everyone who calls in, he is able to join in with the best of us now, so we are feeling pleased about that. If he gets tired, he is simply withdrawing to his room and resting for a while.

Getting into back into the thick of things

We are still conscious of infection, but venturing out a bit more. Last week, we went together to the opticians in Solihull, to choose me some new glasses. I had looked on my own before, but as I am as blind as a bat I really couldn’t see if the ones I tried on were any good. John, being self-confessed fashion-blind, had initially baulked at the idea of coming with me to help me choose –- but, as I pointed out to him, he’s got to look at me for most of the day, so if I put something on that he’d find hideous, he’d soon tell me!! Anyway, that was a very successful trip – we chose glasses and John didn’t feel too tired after exerting all that decision-making energy!

We also went shopping to the local supermarket today – although as it followed the mile-long walk with the wife, it was a bit too much and operations had to be abandoned two-thirds of the way through. Mind you, the trolley I made him push, was very heavy……….

We are both hoping that there will be no ill-effects from the trip from the infection point of view, but the supermarket wasn’t busy and there were no crowds of people, so it should be OK. He had to have a nap this afternoon, though…..

Doing more and more

With regards to taking an interest in things, I think I said last time that John is starting to get a bit bored, so he’s been having a look at things he can do, rather than things he can’t do. (I love the man, he’s so positive!). So this week he has mended the cane rocking horse that my Mum and Dad bought for Paul for his first birthday, ready for Freddie who is soon to be one year old. How wonderful it feels to have a grandson enjoying the same toy that my son had when he was a little boy. (Ooo-er, better watch it!! Am getting a bit sentimental now!) Anyway, he’s done a jolly good job of mending it (I think it got broken when an adult decided they’d have a go on it many years ago) despite it being an amazingly fiddly task. Originally, I had had grand ideas that I would make the repair, having bought the cane, but as I am nowhere near so practical as John, it was with relief that I relinquished the responsibility.

Drinking again

Not a lot more to report – although I have nagging feeling I have missed out something important, and apologies if anyone was hoping for a mention in dispatches. We are settling into a bit of a routine, still keeping our spirits up, and looking forward to the November birthdays, to perhaps enjoy a leisurely evening meal and a glass of wine together for at least one of them. John has been off the booze (yay!!) for some time now, but he ventured a glass or two last night and enjoyed it, so we know his taste buds are getting back into the swing of things and food and drink are at last getting to be attractive again.

All for now then – with much love

Anne

§ The Limbo Dance: signifying an emergence from death to life. §

18 October 2016 – Email Update to friends and rellies – I think he’s getting better…..

Glass half full – or glass half empty?

This is my view: It’s been a wonderfully even-paced week/ten days of improvement since I last wrote an update.

This is John’s view: “I feel like a train engine, stuck in the middle of a field, with the railway lines removed ahead.”

How we see things differently!!

So here’s what I think!

And so, as it’s me writing the update, I offer my perspective as follows – John has been slowly improving as the week has gone on and I submit the following statement as evidence, m’lud:

Firstly……consider the itch

The itchiness has been less itchy, thereby requiring fewer ointment applications and fewer pills popped than previously. (Although I must confess John did start with itchy eyes mid-week, which is also a sign of GvHD (Graft versus Host Disease), but this has been mild rather than massively intrusive.)

Secondly……fewer physical effects

As a result of the lesser physical effects, John has been up to walking further and further. i.e.

• We went to Packwood House on Monday afternoon and had a lovely leisurely walk from the car park through the reception area, and on into the parkland, where we admired the grazing sheep and the wonderful trees beginning to re-dress themselves in their autumnal hues. The sun shone and it was pleasantly warm, enabling us to enjoy a few moments sitting on a bench taking in the views. 
• Five days out of seven, John has walked to the shops and back to get himself a paper.
• He went to the Library on Friday to choose some books to read, and came back carrying a whole bagful of them.
• Also on Friday, clinic day, instead of me bringing the car round to the ‘setting down’ point at front of the hospital, he walked to where the car was parked
• Not only that, he has been working up a sweat on the cross-trainer every day……………..

Thirdly……doing jobs

Also as a result of lesser physical effects, John has been up to doing some jobs! i.e.

• On Monday, he ordered a new curtain pole for the curtain at the front door, to replace the one that had given up the ghost the previous week.
• On Wednesday, he then put up said replacement pole, and hung the freshly-washed curtain (including inserting all the curtain hooks)
• Also on Wednesday, he stripped the bedding from his bed and helped me put clean linen onto it
• On Saturday, he put some of the washing into the washing machine, then put the washed clothes into the tumble dryer (hasn’t ironed them yet though, darn it!!).
• Today he replaced light bulbs in a spotlight in the kitchen and the light fitting in the utility room. 
• Almost every day this week, John has un-stacked the dishwasher and put the crocks away.

And then……good behaviour

 At the clinic, the consultant remains pleased with progress, and the blood counts continue to show improvement in the cell counts. The consultant wasn’t worried by the development of the itchy eyes, and simply prescribed some drops to alleviate the symptoms. His pet phrase of ‘good behaviour’ was used several times during the consultation, and he said his examination of John revealed nothing unexpected.

A halo emerges

And…….at the beginning of the week, we both noticed, sparkling like silver tinsel on a Christmas Tree, the emergence of new hair growth. Such great excitement!! I see a lovely halo of hair as I look at him, and John is enjoying running his hands over his head every hour to check its progress!!!

Lastly….

 And, lastly, he is thinking he might write his own update email soon…………..eek!! Watch this space folks!!

But I get it

I do understand John’s perspective. He is watching us all rush around like whirling dervishes and seeing the world fast-paced and hurrying past him as he tries to adjust his ‘chemo-brain’ and wasted muscles back to life in the Sleath household. He was/has been the instigator of the Sleath-paced life up to now and it’s grindingly difficult to see everyone on the whizzy Waltzers (where you wanna be…) when you’re on the gentle Carousel. John is looking for ‘the next project’ and is already champing at the bit to get going rather than sitting about. Trouble is, he doesn’t yet see the building up of his body as a project……….Arnie Schwarzenegger, got any tips?

Anyway, suffice to say, I’m happy. The man’s doing OK and he’s keeping up whenever anyone comes to visit – the afternoon naps are no longer a necessity – and generally starting to argue his political corner to anyone who’ll listen. You know he’s getting better when that begins, don’t you??

All for now.

Much love from Anne

 

§ 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

§ The Limbo Dance: signifying an emergence from death to life. §

26 September 2016 – Email Update to friends and rellies – Recovery time

It’s all happening here!

John spent a week in hospital and came home again on Friday afternoon. Apologies for the delay in letting everyone know, but I have been tied up not just with looking after John, but helping my Mum clear her house ready for a move to a new flat this coming weekend too.

Where was that pesky bug?

The doctors established that the infection John had was in the Hickman line (choo!! choo!!), which is quite common……They had been keen to get the line removed as soon as they could to prevent such a thing happening, but just a tad too late, darn it!! Anyway, antibiotics did the trick and no further infections were found elsewhere (much to my relief, as I had been thinking I might have been poisoning him again) so all good.

Exhausted

However, it is two steps forward and one step back – to be expected I know, but nonetheless frustrating for John – as the stay in hospital has left him very weak due to further loss of muscle tone. And even a walk to the car is exhausting for him just at the moment. Ah, well, it’ll have to be just watching the rugby/footy/grand prix/cricket (although season over now in England alas and congrats to Middlesex) for a few weeks – I am sure that will be a hardship!!

We are due back to the clinic again this Friday, but in the meantime we are monitoring John closely for signs of anything untoward, and I will be contacting the ward to get advice if I see anything at all that is suspicious. It’s really not fun to feel so poorly and if we can nip things in the bud it might make life just a little easier.

White collar work?

Despite it all, we are still enjoying each other’s company (well, I speak for myself here, of course!) and still having a few laughs along the way. And,of course, John still has plenty of advice for me and the boys on managing the various projects we have on the go, so he’s still being very useful. Being unable to pick up his regular work now, I have suggested to him that he now be the white collar worker of the family, and have set him several tasks to be done via the internet, so I am hoping he’ll get on with them sooooon………….And I shall know when he’s feeling better when he starts arguing with me!

And thanks….

All for now – and once again, massive ‘thank yous’ to all those people supporting me/us/my Mum, with your kind thoughts, flowers, food and labour – so very, very much appreciated.

Lots of love, Anne

§ The Limbo Dance: signifying an emergence from death to life. §

19 September 2016 – Email Update to friends and rellies – NHS care is doing the trick

Feeling a bit better

Just a quick note to say that, after two horrible days of high temperatures and experiencing the rigors associated with a high temperature, John is beginning to feel a bit better. His temperature overnight last night, and again during the day today, has stabilised and he is a lot calmer than he was. He’s even managed a smile and been able to keep his beady eye on us today as we’ve gone about caring for him. He has also had a bit more conversation with his visitors – me, and the boys at various times – as well as the nurses.

Testing, testing, testing...

The doctors are still doing tests to see what the cause of the temperature has been and, having taken his Hickman line out yesterday, they sent it off for the microbiologists to do their studies on it to see if there is anything lurking there…… So far, there has been a suggestion of a bug in his blood but that hasn’t been fully confirmed and, horror of horrors, John has had a day or two of a runny tummy which they are now investigating. For us visitors and carers, this has meant ‘gowning up’ when we go to see him, which has caused us some amusement – gloves sometimes, yellow apron (very fetching) and the glamorous masks which prevent the already ‘hard-of-hearing’ hardly hearing anything that you say very much!! Coupled with some frequently foreign accents among the nurses in particular, we have been playing an exciting game of Chinese Whispers. Who’d have thought being poorly could create such fun?

The amazing NHS – keeping tabs on things

John is in a room all to himself but not on the normal haematology ward (Ward 19) because there are no beds there. He is on the Cystic Fibrosis ward, where the patients all have rooms rather than 6-bedder bays. It transpires that there are quite a lot of haematology patients on the ward – goodness me, haematology are busy!!! His doctors are directing operations remotely, as it were, but coming to see him every day and instructing the nurses on the CF ward how to deal with the various problems that arise. They are looking after him very well, even though some days they are a bit short-staffed. I think they are quite grateful for me being there (I know John is too) as it saves them some of the running about.

We know that the doctors would like to get John moved to Ward 19 ideally, and they are shuffling people about, but at the moment, I think as he is no longer in quite such a critical state they will leave him where he is for the time being. We have no idea about a discharge date because, although they have changed John’s antibiotics to deal with the bug they’ve found in his blood, there may be more changes yet, depending on what all the numerous cultures they are cultivating show. I think he almost needs a lab of his own as they have definitely taken samples and swabs from every available area – enough to keep an army of microbiologists busy!!

The chef may quit

I have told John though, that if the tummy bug turns out to be campylobacter again, I am quitting preparing and cooking food for him for ever!!! I know he hasn’t had any raw meat or dirt in his vegetables/salads since his transplant; and I have been scrupulous in hand-washing etc, so whatever little devils have been shimmy-ing around at home need a good seeing to!!! I shall be on the warpath, so they’d better watch out!!

Wonderful friends and rellies

Once again, thank you everyone for your good wishes, prayers and thoughts. At times, it must seem like ‘Really? I can’t be bothered to send more best wishes again’ but I promise you, it’s what’s keeping us going. The kindness of friends helping us out, and just a few kind words make all the difference.

More to follow when there is something to tell.

With love, Anne

§ The Limbo Dance: signifying an emergence from death to life. §

19 September 2016 – Email Update to friends and rellies – So, it’s not all plain sailing…. but thank God for the NHS!

OK. This isn’t at all what I intended to write this evening. I had a great summary of John’s progress planned in my head. But……

Where is my Sunday Roast?

……….we were just patting ourselves on the back that nearly a month had elapsed since transplant and no nasty surprises when, of course, a nasty surprise came along today – and John is currently residing in the hospital again!! (What were those stats again? And our hope he’d be in the minority who didn’t succumb to something horrid?). Hopefully it won’t be too long, but he has picked up something which has spiked his temperature and made him feel unwell.  Another Sunday without his Sunday Roast!!! (For those of you on Facebook, you will remember how disappointed he was to miss out on that a few weeks ago!).

‘Come on down’!!

Typically, he was hoping to hold out and not go to hospital, but we have been told, in no uncertain terms, not to wait but to get in touch with hospital immediately there is a sign of anything untoward. Fortunately, he was feeling too poorly to resist me today!! And, of course, as soon as the triage nurse heard the symptoms there was no hesitation in telling us, just like in a game show, to ‘come on down’.

A well-drilled team

Once again, the staff at Heartlands Hospital have been/are brilliant. We arrived at A&E, where they immediately set up the process to get John anti-biotic-ed, rehydrated, cooled down, blood tested, sampled, x-rayed and generally made more comfortable. All this, despite an overflowing A&E, much of it (it seemed to us anyway) full of very drunk and shouty people guarded by an army of police officers – but attended to by determined, professional, and caring medics.

Taking on The Hickman Line

Apart from this blip, John has been doing very well and his blood counts have been quite satisfactory. The only concern (other than the usual concerns with a transplant) has been the re-activation of CMV (see last update about this) because of the Hickman line which is still in place. John is due to have that removed on Tuesday in the Day Unit, so all being well that will still go ahead.

The Fairground Sideshow

The Hickman line (sounds like a railway line, or a song, doesn’t it?) does have other advantages though. It’s ‘easy and direct access’ to the delivery of drugs or the taking of samples. So it’ll be sad to see it go. Especially as, if a drip needs to be set up, or blood needs to be taken using the standard ‘stick a needle in your arm’, the poor doctors and nurses have the devil of a job with John:

a) trying to find a suitable vein (the veins hide); or, b) having found a suitable vein, trying to keep it going (the veins pretend to be nice and plump, but give up after a few seconds); and, c) keeping their patience as they search and rummage around one, or other, or both arms in all sorts of unlikely places.

Sometimes, a nurse will give up and pass him onto someone else to ‘have a go’!! Definitely a bit like a game show now – ‘Roll up! Roll up! Find the vein!! Great prizes to be had – cheers and laughter when you find one!!’

And d’you know what? It does sometimes seem like they’re trying to get blood from a stone! Much to John’s amused resignation.

Drips, antibiotics and monitoring

Anyway, at the moment, they have made him as comfortable as they can and are feeding him with drips and antibiotics to put him back in the right road. And we know he’s not neutropenic – which is a GOOD thing on the transplant scale of things.He has been moved up to the Assessment Medical Unit for the time being, and they will liaise with Ward 19 (the Haematology/Oncology ward) tomorrow to see what’s what.

Watch this space

So, for the moment, I won’t regale you with the fun stories of the last week (hats and maids outfits……say no more!), as it’s now very late (having just got home from the hospital) and I’m going to go to bed too, and hope/pray that the ‘John News’ is better in the morning and he’s thoroughly on the mend.

With love, Anne

 

 

 

 

 

 

§ 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 

 

 

 

 

§ The Limbo Dance: signifying an emergence from death to life. §

6 September 2016: Email Update to friends and rellies – Jonny-boy is HOME!!! 

 Dear all,

Jonny-boy is HOME!!!

And said fetching caps arrived on time today, just in time for him to choose one and wear it on the journey back. Photos to follow in due course!!

Early days and recovery to be made over the next few months, but he has done well so far – one of the nurses nearly fell offer her chair when she heard he was going home today. So onwards and upwards.

Thank you to every one who continues to send their best wishes, good, positive thoughts and prayers to us – very much appreciated – and please keep them coming!! 

Lots of love from Anne

§ The Limbo Dance: signifying an emergence from death to life. §

5 September 2016: Email update to friends and rellies – coming home?

Dear all

Well, we’ve had an exciting few days!! 

 Hair………..

As you know, John was periodically pulling tufts of hair out of his head on Friday, which has now become a bit of a cascade and hair is floating everywhere! Taking a shower means that John is more hirsuit on his body when he leaves the shower than when he went in!!! And the caps we ordered to cover his embarrassment have not yet arrived, but the nice new slippers I ordered for him have (more on that in a minute)…..

Trip to the loo, my darling

The tests finally showed a urine infection of polyoma, which the doctors are not unduly concerned about, but either as a result of that or something else, they decided that John was deficient in magnesium so promptly filled him full of litres and litres of saline solution (again) with the magnesium in it. Consequently, nightly trips to the loo continue. Fortunately, the other problem regarding his toilet habits has now cleared up, so a bit of relief there.

 Morning and evening John has been hooked up to a drip of cyclosporine (the immunosuppressant) so it’s been fun, fun, fun when he’s needed the loo as his ‘friend’ has always gone with him.

Move over drip – make way for pills

On Sunday, however, a new and exciting development, as he was no longer on a hook-up to the drip and sadly, he had to say goodbye to his ‘friend’. Instead, a tub full of exciting pills (some of you may have seen these on Facebook, which John called his ‘amuse-bouche’ before his ‘main’ of an English breakfast) including the cyclosporine, is now being provided morning and evening. Meals are now very exciting with his assortment of ‘smarties’.

 Growing..growing…growing…

Every day, the nurses have also been extracting blood samples from his intravenous catheter, or ‘line’ as it’s called, as well as from a vein in his arm so that they can match the two to make sure nothing nasty is getting in, or was lurking anywhere. The samples are also tested daily for any signs of new white cells (of which he has been at zero) to indicate whether the transplant is working. Yesterday, Sunday, the doctor reported that instead of zero in the white cell department, John now has a reading of 0.3. Hip-hip-hooray!!! Zipper-dee-do-da!! Fanfare it from the rooftops!! John has some new cells!!! The transplant is beginning to do its work. When the reading is 0.5 he is no longer classed as neutropenic, so off the the endangered species list.

 Home James?

Today, the doctor and the nurses have been very upbeat, to the extent that they are talking of sending him home TOMORROW!!!! We’ll wait to see if it happens but we are very excited at the prospect of having him home. (Slight caveat to that, actually –  I had been hoping to get the house thoroughly cleaned and the carpets shampooed before he came home, which, of course, I haven’t done, so he will return to a grubby-ish house. Me? Worry? No…. not a bit of it!!)

 As I said before, we are in good spirits, and still enjoying a joke and a laugh – and it’s even better now that we have news of things working, although there is still a way to go in keeping the various viruses and bugs that seem to lurk everywhere away from John. I have my sword ready…….

 So the brand new slippers duly arrived – this is one of my attempts to keep John germ-free – and I have sent them across to the hospital today for Paul to deliver. They will, of course, be coming back tomorrow. And what’s the betting the germ-laden ones come back home too?? Hoping they’ll find their way to the bin by themselves. Now, if only the caps will arrive tomorrow, that would be good!! Otherwise, it’s a bobble hat he’ll have to wear……..(I’ll take photos, I promise!! Tee-hee!!)

 And now, it’s my turn for some attention

In the meantime, whilst John has been hogging the limelight, I thought I’d have a go at trying to get some for myself. As some of you may already have seen on Facebook, I decided to do a dance with the pavement in the hospital car park. The pavement won the competition and, having landed flat on my face I now have the most enormous black eye. Very pretty. I was, of course in the right place, and hobbled into A&E, only to be ushered over the Adult Walk-in Centre for minor complaints. Minor??!! Minor??? Excuse me……….Anyway, the staff were all very kind, said all the right things, patted me on the head and sent me on my way with sage advice of to rest……..Hmm…(well, I have done today, anyway!).

 Next instalment to follow

Will update you again once John is home or there is more news to tell. 

 Lots of love 

 A very excited Anne

P.S. John’s post on Facebook:

   Hopefully it’s my last day, so it’s boiled egg for breakfast!!!

§ The Limbo Dance: signifying an emergence from death to life. §

2 September 2016: Email Update to friends and rellies – no description needed

Uh-oh….. it’s started!! Hair today…………….gone tomorrow………we’ve just ordered a couple of fetching caps…….

 

Lots of love

 Anne