Author: anniesleath@hotmail.co.uk

So, here we are a year on since my last post. We have had a year of ups and downs with John being especially subject to depression, but we’re still dancing….just.

But ain’t life fun? It not just the cancers, and lung condition and the depression to contend with now. Oh, no! Just like everyone else, we are in isolation. We have been for a week or two, but yesterday, the government made it clear – STAY AT HOME. So we are.

Very dear family, friends and neighbours have been coming to our rescue with food parcels so far, and we just pray that they, as they go about the business of supporting the vulnerable, stay well and safe.

So, in her wisdom, my dear daughter-in-law suggested we do a diary of the events in our household. I am not sure that we’ll keep it up but we’ll try.

As of last week, we invited my Mum to stay with us. Our thinking being that if she were to become ill in her sheltered accommodation, then we would be unable to visit or support her in any way. So we bit the bullet. Frankly, it is something I swore I would never do, have my Mum stay with us, as I was sure it would kill John off. But actually, so far, not too bad. Even celebrating her 94th birthday on Sunday with was pleasant enough.

Today, has been a beautiful sunny, clear blue sky day. Warm with a very light wind. A pity in some ways because I am feeling so exhausted that I wanted to have a duvet day today. Didn’t happen, but I did have a bit of a duvet morning, although I had got up a couple of times to answer the door. Our dear friend Malcolm had been to the local Co-op for us and brought supplies, then the postie came with a parcel. Just wondering how long the parcel and letter post deliveries will continue. Not sure the government are going to class the work as essential, but we’ll see.

Early morning messages came in from several groups of friends in WhatsApp groups. One, from my friend, Chris, bewailing the fact that her boiler had stopped working. Plumber due to go tomorrow and fingers crossed it’ll be fixed.

John had made us all cups of tea this morning, so that was a bit of luxury and, as I finally made my way downstairs, middle son, Michael, phoned. Had a lovely chat for a good half hour – they were sunning themselves in the garden with a cuppa, whilst William had a nap. Bliss.

We had a bit of lunch then, of a chicken, leek and mushroom soup which was delicious, and then slouched in front of the TV catching up with a couple of programmes – Breeders and The Heist – good fun.

The day is interspersed with messages from all sons of the family – and in particular, beautiful video clips of the family at work and play; my old ‘gang’ – friends from schooldays; my college ‘girls’ – friends from college days; and the prayer group I belong to ‘Exploring Faith’. Each and every one, brightens up the day.

Equally, the phone calls are highlights. My friend, Carol, who lives in Derby, phoned and we had a good old natter. They are all OK there for now, although Carol is obviously anxious about John, her husband who is in his eightieth year.

Had a little toddle out into the garden and the sunshine with Mum this afternoon. Armed with her stick and leaning on me, she did very well, admiring the fish in the pond and the flowers blooming just now. At the end of our toddle, we sat on the bench by the patio door to listen to the birds and take in the sun. I thought it’d be nice to have a spritzer or something as we sat there, so we drank a bottle of Babycham between us in champagne saucers, feeling very privileged to be alive. We watched as John moved ‘big stuff’ from one end of the garden to the other.

Spoilt by egg and chips for tea (memories of John’s Grandma – ‘Nanan’), we have now adjourned to the lounge where we intend to watch TV and phone youngest son in a bit. That’s us today, folks.

Two years on…..

The last time I wrote my blog about John’s limbo dance with leukaemia was January 2017! Two years ago! And since then, such a lot has gone on. I was wondering why I suddenly stopped writing but it’s not hard to fathom. The last two years have been hard and constantly on the go with hospital appointments and stays for a variety of ailments. We have been in a dark place.

In the end though, as of today, John is in total remission with his leukaemia. Whoopee, I hear you say. It’s not all roses though, unfortunately. Well, it’s like this……

The original transplant didn’t take, so very kindly, the donor agreed to make more cells available and a second infusion took place in April 2017. The consultant had decided to really blast a lot of cells this time to make sure – and it took, but at a cost. John became extremely poorly with an extreme reaction to the transplant and contracted Graft versus Host Disease (GvHD). This is where the host cells take exception to the donor cells and react aggressively. It can affect any, and all, parts of the body. For John it was significant – his skin came out in an ugly, itching and sore rash all over his body; his liver didn’t function properly; his mouth became inflamed, sore and ulcerated; his digestive system rebelled with both stomach and intestinal soreness with resulting frequent trips to bathroom; and most significantly, his eyes became so sore that he couldn’t open them or see.

At the time, the medics had to work very hard to treat the acute symptoms of GvHD. Steroids and anti-rejection drugs were prescribed, and the doses upped – then upped, then upped again. X-rays and MRI scans were taken to check on progress and emergency referrals to liver specialists, mouth specialists, eye specialists, skin specialists, breathing specialists et al were made. In all, John was in hospital for over 6 weeks at that time.

Very high doses of steroids strip you of muscle tone. John lost a lot of weight and a lot of energy. The cocktail and volume of drugs he had to take was an all-consuming activity and sleep was on high order.

As the months went by, and struggling with the consequences of the GvHD and ongoing issues, the consultant wondered whether the particular anti-depressants that John was on was making a difference to the efficacy of the treatment. He suggested weaning off the anti-depressants. We agreed, and so, we thought, the road to recovery would begin.

The GvHD had been so severe that the consequences have been life-changing. The cornea on John’s eyes had been stripped, and his tear ducts no longer function. This means that he is now unable to manufacture tears. He has had severe muscle wastage and and struggles with energy levels. His salivary glands and taste buds no longer function well, and food is like cardboard in texture with no flavour. High steroid dosage invoked the onset of diabetes – now you need to watch what you eat. Anything else?

Fortunately, there is a new treatment, commonly and affectionately known as ‘blood washing’, for those affected by GvHD. This is a process whereby blood is drawn into a machine, whizzed round to extract the T-cells for them to be treated with a drug and exposed to UVA light, then pumped back into the body. For the technos amongst you this is ‘extracorporeal photopheresis’ or ECP for short.

This particular treatment has proved to be fantastic. It has healed the skin and the mouth, and the liver function is back to normal. As a result, John no longer needs to take steroids or immuno-suppressants, and the volume and cocktail of drugs has decreased. And he is diabetic no longer.

Eyes are still a problem, and unlikely to secure a cure. Fortunately, John rose to the top of the list for a specialist eye serum which he uses in place of tears. That’s not to say that it’s hunky-dory though, as his eyes are constantly gritty and feel tired, dislike the sunlight or glare of the computer, and remind John daily, nay hourly, of the chronic nature of the post-transplant symptoms.

Ongoing and as a little aside, there have been periods when John has been seriously ill with chest infections. We’ve trundled him off to hospital as an emergency into A&E and he’s enjoyed frequent stays in hospital whilst they sort him out.

The haematologists puzzled over the frequent chest infections and eventually decided to invite a respiratory specialists to have a look. Bronchiectasis was diagnosed – another result of the GvHD. No worries though, we’ll give you a couple of inhalers and you’ll soon be right as rain.

Physically, the medics have been pulling out all the stops to improve the situation following the transplant and expecting to see results, but John wasn’t really making great progress. And then, about a year ago, we started to see signs of John’s depression returning. He self-referred, and was put a low dose of an antidepressant. It didn’t seem to work. Well, they said, you’ve got to wait a good six weeks or so to let it settle in. Time elapsed, and the depression worsened. OK, let’s add to the mix and give you a low dose of another antidepressant in addition. But mind, you’ll have to wait six weeks or so to feel any benefit. Still no joy. Righty-ho, let’s up the dose of the second antidepressant – but remember, you’ll have to wait six weeks or so before you see any results……

By this time, several months and iterations of increased drugs later, John’s depression had worsened to such an extent that he was no longer a fully functioning human being. The crisis team were called in. Consultants scratched their heads. Support workers tried to help him see some positives. Family rallied round and were on suicide watch. I couldn’t leave his side. He couldn’t drive – the roads were too confusing, there were too many decisions to make…… and anyway, what was the point?

I started to agitate a bit to get the mental health teams to find some way of improving John’s lot. Ah-ha! I know, said one of the consultants, we’ll send you on a Compassion Focused Therapy course. That’ll do the trick. Like heck it did. Everyone there was also suicidal and wanting to talk about dying. The team running the course let the participants’ sentences hang in the air. And what to make of them? John didn’t know; he didn’t get it. And neither did I. I just picked up the pieces when he got home.

Finally, we asked the question – could John go back on the original antidepressant that he’d been on before? Please? Ooh, well, we’ll have to check with your haematologist. And Pharmacy. Need to make sure the drugs you’re on are compatible. Well yes, that’s sensible. But really? Do we have to wait a week/ten days for you to make those simple checks? Finally, finally, the drugs have been changed and John is changed too. He feels better.

We are still attending hospital appointments for haematology, ophthalmology, endocrinology, immunology, dermatology, pulmanology, gastroenterology, periodontistry……..oh, and urology. A couple of years ago the haematologist noticed that the PSA levels in John’s blood test were sky-high. Cue investigations for prostate cancer. Presume prostate cancer following non-invasive checks. Treat for prostate cancer. PSA levels all good now. Lovely.

And so, with John’s mental health beginning to improve, we have hope once again. Life will never be the same again but we are at least spending time with each other! That’s got to be a bonus! Well, for me anyway……..

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

3 January 2017 – Email Update to friends and rellies: Hope: please enter stage right……..

Let’s do it again!

So we toddled off to meet with the doctors at Heartlands on the Friday (23rd) before Christmas, and confirmed that John would like to go ahead with another transplant, if possible.

Please, Mr Donor…..

The doctors have duly applied to the donor to see if s/he is willing to syphon off a few more of his/her body cells for John to use, and we go back to the clinic this Friday, hoping to know whether the donor fancies continuing to play the game. The doctors have asked for two things: i.e. lymphocytes and stem cells. This gives the option of having a lymphocyte top-up, should John’s chimerism (volume of donor cells vs his own host cells) show promise i.e. 10% or more of donor cells floating about in his blood. The results of the specific blood test should be available this week, so fingers crossed.

As regards a timeline on all of this, we are not totally sure, but think that it’s all likely to happen sometime towards the end of February/beginning of March.

And what’s new now?

In the meantime, the itchiness has continued to bother John, particularly on his head and back. He has intermittently complained that the itchiness appears to be where his hair is growing, which we clearly have taken little notice of previously. And so, because it is getting to be a bit of a puzzle as to why (if it is a fungal infection) there appears to be little healing going on, despite the lotions, potions and pills he’s applying and swallowing, John thought he’d have another go at bleating to a different doctor that the itchiness is where his hair is growing. Hmmm……let’s have a look……mmm…… yes, the skin seems OK/better really, doesn’t it? Hmmmm………well, we know it’s not GvHD, and we can’t see the fungal infection…………ah-ha! It’s probably folliculitis.

Well!!! That’s interesting – something else to add to the list!! Cure? Antibiotics. Not that John was prescribed any more antibiotics than he is already on, so the itchiness continues, and we will bleat some more when we go to clinic on Friday.

Take heart (??!!)

In terms of fitness, John has been struggling to walk more than a few paces before getting out of breath. We anticipate that this is just because he has been lounging about and not doing anything very much, leading to muscle wastage, but the consultant thought he’d better get John’s heart checked out again just in case. That appointment is due in the middle of the month so we’ll know more then, but I don’t think we are really expecting anything untoward.

Crack the whip? Qui, moi?

In the meantime, of course, I am holding back on cracking the whip – not just because I am not keen on the growls that come in response to the whip-cracking, but obviously because I am not keen on the idea that John might keel over! However, he has made a bit of an effort over the Christmas break and accompanied middle son on a dog-walking expedition and, surprisingly, opted to walk rather than drive, to the Saracen’s Head pub the other day for lunch.

Projects, projects, projects.

Our current mood continues to be rather low, despite lovely Christmas celebrations with our wonderful family and friends around us, temporarily cheering us up. John has yet to find anything to keep his interest other than TV and books – yet there have been flares of interest in a variety of things such as making a fold-down bed for Michael’s study; sorting out the family photos; uploading old black and white photos to the computer via an app; and helping Andrew to set up the vegetable patch. Although nothing has come to full fruition just yet, due to the physical and mental lethargy John is feeling – watch this space folks, Christmas presents might just have done the trick to kick-start one of these projects!!!

C’mon!! It’s 2017!!!

We decided to spend New Year’s Eve quietly at home on our own, following the hectic-ness of Christmas, which was nice, if a little unexciting, and so here we are, taking tentative steps into 2017, still planning for the light at the end of this rather long, dark and spiky tunnel, and doggedly tramping on to see what happens next.

We are hoping for great things in 2017 for ourselves of course, but we are also wishing you all the most wonderful year ahead and hoping it brings all you are wishing for too.

With much love. Anne

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

17 December 2016 – Email Update to friends and rellies: Is Scotty there? And would he like to beam us up, please?

Apologies for not writing this sooner. We have both had horrible lurgies and are only just beginning to surface.

The Headline………..

…………is that John’s transplant has not worked. However, he is currently in remission with no cancer cells visible in his blood at the moment. As per my previous update, the options are to:

a) Do nothing and wait until he is no longer in remission then take pills; b) Top-up with donor lymphocytes (although is this isn’t real option as he needs 10% of the donor cells in his body already, and he only has 2%); c) Have another stem cell transplant.

At the moment Option C is looking to be favourite, but we are waiting on more developments before we make the final decision.

The Detail…………

………..is that the consultant is reducing the amount of immuno-suppressants John is taking, tapering to zero, in the hope that the donor cells might make a bit of an appearance. If they suddenly see that there might be some limelight to be had, and they dance into the 10% bracket then it is possible to have the lymphocyte top-up. However, this is always assuming that the donor is willing to offer up more of his cells for John to have. We haven’t yet asked the question as to what happens if the donor decides that donating once was enough.

The Back Story…………

………………to all of this that we have been bitterly disappointed that the procedure hasn’t worked, and there is no explanation. It is just a shrug of the shoulders and a wry smile with the understanding that there could be a thousand and one reasons why John’s body didn’t gleefully take up the offer of renewed and healthy cells. The disappointment, of course, is compounded by the fact that the procedure is 95% successful in the people undergoing it. We have been ever-hopeful that at some point John will be in the mainstream of the population and that it would all go swimmingly – but not yet – perhaps next time?

And the response?

John has been particularly hit of course, and has found that his response has been to go to the back of his cave and stay there in the hope that the storm will pass. This has involved lots of inspecting the back of his eyelids in the prone position, either in bed or on the settee. This approach, whilst supporting the mental aspect of dealing with the disappointment and what to do next, has rather debilitated his body and left him in a very weakened physical state. The consultant advises that there is currently no medical reason why he should be so weak, so we know it is simply a matter of building up the muscle-tone again.

Entertaining uninvited guests!

And so, it has been hard to pick ourselves up over the last few weeks – not only because of the searing disappointment to the news we have had, but also due to the rather nasty viruses that decided to invade our bodies when we were mentally low. We had the pleasure of entertaining Mr Cough Virus for three weeks – this guest enjoyed racking our bodies and exercising muscles we forgot we had. It also enjoyed hammering our heads and raising our temperatures. But not to worry, we’ve more or less got over that. Oh, hang on!! Here’s another uninvited guest knocking at the door. This time we think it might have been the world-famous Mrs Noro-Virus, and this guest exercised our tummy muscles all ends up – repeated the not-long disappeared hammering of the heads and added some lovely achy joints to boot. Better now though – phew!!!

But pick ourselves up, for goodness’ sake!!

So Christmas is coming and efforts need to be made, so we have picked up the Cup of Hope again and are facing forwards, not looking back. We’re beginning not to feel quite so sorry for ourselves and have begun the present-buying, house-decorating, food-preparing frenzy – anticipating the fun to be had with family and friends over the festive season.

Happy Christmas everyone!

So on that note, we wish everyone all the compliments of the season and hope you and yours enjoy yourselves whatever you are doing.

With much love, as always.

Anne

 

 

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

28 November 2016 – Email Update to friends and rellies: Here are some options…….which one do you fancy?

Clinic on your own?

Well, John went to clinic all by himself on Friday. I had gone down with the dreaded lurgy and was bed-bound; and anyway, as John pointed out, it wouldn’t have been very fair to other patients to be taking something nasty into the clinic for everyone to enjoy. So he hooked me into a conference-call instead.

But is it GvHD?

The bone marrow biopsy results weren’t back, but the skin biopsy results were. The skin biopsy suggested that John doesn’t have GvHD after all, but a simple fungal infection. Cue: great heart and soul-searching as to where on earth this might have come from. Reassurance from Paneesha who said fungus is airborne and everywhere so, with John in a slightly lessened immune state, it’s easy to catch. A bit of a sigh of relief, but we want to be convinced yet, so more questions next time we go……

Cream was prescribed to ease the inevitable itch – and we guffawed over the size of the tube provided, which will be enough to do a forearm for a couple of days if we’re lucky, rather than a whole back for a fortnight. Hey-ho! Hey-ho! It’s back to Boots we go……

Setback

Paneesha seemed fairly sure that the transplant hadn’t taken however, despite the absence of bone marrow biopsy results, and he also seemed fairly sure that the CLL (Chronic Lymphocytic Leukaemia) was not evident either. He offered three options: 1. Do nothing and take pills if the CLL comes back (which it probably will as it’s remission, not cure); 2. Top-up with the donor’s lymphocytes if there are any knocking around at the back of the cupboard (risk of a nasty dose of GvHD, but definitely worth a go); 3. Have another transplant.

So away John came with food for thought – and perhaps a discussion with the wife if she would only rise from her sick-bed.

What to do………

Option 2 looked favourite, but today, Linda, one of the specialist nurses phoned to say, “Had a rummage in the cupboard, John, and it was bare – there’s no lymphocytes there.” Hmm……. Is option 2 out of the window now? As we are both feeling short on fuses just now we can’t agree whether option 2 remains in or out, but we have agreed to disagree and talk to Paneesha when we go again in a couple of weeks.

Wanting to share

In the meantime, being of a very sharing sort of nature and not wanting to keep things to myself, I have infected my husband with the lovely bug I have had all last week and he’s now coughing like a trooper too. We could almost set up the percussion section of an orchestra between us…………

Surprise!!

Meanwhile, lovely friends and family are cheering us up with their company and tokens of love – gardening to the fore this week following my update last time, with a fabulous gardening magazine to help us plan the vegetable patch, and a lovely tub of winter flowers. And, unexpectedly, a MASSIVE surprise from our lovely niece Christiana, who, having discussed the idea cloak and dagger-like with the boys, has booked us a week away next February in a cottage in Devon, through a charity she has links with. We are overwhelmed – and haven’t thanked her properly yet, both being virus-ridden and a bit non compos mentis. But wow!!! How thoughtful is that? Being our favourite niece we know how wonderful she is ordinarily but this has exceeded all expectations. She is a STAR!!

To add to the cheering up stakes, we are, of course, constantly amused by Freddie who is just such a delight that we can’t help but smile and be thankful for his presence.

Decision time – again, again

Back to the clinic in a couple of weeks – and in the meantime, we will be thinking about the options available so we can make a decision when asked – although, I think John knows what he is going to do already……………

All for now.

With love and hope in our hearts.

Anne

§ 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