Month: November 2016

§ 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 60^th 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

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

10 November 2016 – Email Update to friends and rellies: Normality…… but will it be as we know it?

Dear all,

Ticking along well

A very successful few days since I last wrote, with John making steady progress and improving daily.

Pressure at the clinic

We went to a very-overworked, under-staffed clinic on Friday with long waiting times due to staff shortages. Despite the volume of patients to deal with, the staff were still amazingly cheerful and focused.

Pleased with progress

The consultant we saw (not Paneesha this time) was very pleased with John’s progress. He said John’s blood counts are all OK and his neutrophils (the white cells that help fight infection) are up to par, so he can probably start getting back to normal. A reminder not to go into too over-crowded places – don’t go on a plane for example – and be careful doing any handyman work; i.e. don’t go grubbing in dirty areas, no toilet plumbing, and be aware that drilling and removing old material is fungi-infested and can be a threat.

Gaining inspiration

In addition, the clinic being the post-transplant clinic, we got chatting to a chap who’d had a transplant last March, and he was looking so fit and well, playing football and taking life by the scruff of its neck, that John felt very inspired to really do more. 

Thinking of me!!

So, all good; and John is buoyed by the idea of having an improved daily purpose – especially one of his own choosing. So excited was he about ‘getting back to normal’ that he actually brought me breakfast in bed on Sunday morning. How absolutely delightful that was! And not only that, I was very privileged to be able to use his ‘poorly soldier’ set: an egg-cup and soldier-cut-out set for the toast – thank you to Sue and Chris for that!

Back to work….

Monday morning, then, and John is raring to get back to work!! Physically, he is still not yet up to full strength, but his view is that if he gets on with it he will get stronger – which is true of course. Disappointingly, I’m thinking that the three-times-a-week walk with the wife might now have fallen by the wayside, but very happy that John feels useful again. He’s having a ‘phased return’ and supporting the guys who are re-furbishing my Mums house, so going over there in the afternoons to do, what he promises me is, clean work. He’s been sorting out the electricals in the kitchen and is planning to act as foreman next week as the new kitchen goes in.

Overdone it?

John being John, of course, does like to get stuck in. So yesterday, on his arrival home, I said, “Errm….hobbling are we?  Overdone it a bit?” Hmmm, yes, just a bit – was the reply. Just a bit of backache. Ah, well, you can’t keep a good man down!!!

Back to normality….. Beam me up, Scotty!

So, we’re getting back to normal – oh!! That sounds scary!!! Beam me up Scotty!!

All for now and, as always, much love and grateful thanks for the support people continue to offer.

Anne

 

 

 

§ 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