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Well, I can recommend a ‘Brazen Hussy’ to anyone!! Slept like a log after a couple of those lovely cocktails last night and woke up with more of a spring in my step this morning. The going forward of the hour was a blessing as I was able to catch up with our church service on-line at the appointed time, in the knowledge that others from the congregation were doing the same. Struggled a bit to concentrate though, with all sorts of distractions here at home.

John also got up in good time and he, too, felt a bit better this morning. Still coughing well, of course, but that’s to be expected without his inhaler. Otherwise, he’s still pottering about and doing jobs, for which I am very grateful. Today’s job was to lay the brass threshold strips joining the new kitchen floor to existing floors into the hall, the store room and the utility room. And they look fab! Dead pleased with them, I am!

Mum took her time getting up and coming downstairs, with a few ‘oohs’ and ‘aahs’, and absolutely no memory of having refused paracetamol yesterday to ease the pain of her fall at all. Quite willing to take some this morning though, which reduced the possibility of more fuss than necessary! Ooooh, she does love a drama!

Had a lovely text from Tracey, who does Mum’s cleaning and general looking-after of her on a Wednesday, and so I got little notelets out for Mum to write something in return, as she’d expressed a wish to do that last week. But, no… didn’t feel like it today, so we posted a video instead, and Mum felt like a film star. She was like the Queen on Friday, Humpty Dumpty yesterday, and a film star today…. I wonder what tomorrow will bring for her?

No ‘big stuff’ for John today, just a snooze this afternoon while I pottered about upstairs vacuuming all the bloomin’ cat hairs up. The cats aren’t allowed in the bedrooms, but they do love to prowl the landing, where they seem to shed hair by the bucketload, which then gets walked into every room….

John may not have done ‘big stuff’ today but he has excelled himself in the kitchen with high cuisine. Steak and chips for tea, and a luxury ‘paleo’ chocolate mousse, and then to baking a ‘paleo’ loaf this evening. Mmmmm…. the house is heady with its scent as I write – delicious!!

Disappointing news today though is that Oakes’, the farm shop, has suspended its delivery service now. We were doing very well on the grocery front with support from dear friends and the delivery from Oakes’. Despite the fact that John is in the ‘shielded’ group, it has been impossible so far to get any on-line deliveries from any of the major supermarkets, either because we’re queuing to get onto the website, or there are no delivery slots available.

Our difficulty is that John is following a specific diet, and many of the products aren’t sold locally. But no matter, meat and two veg works very well – we don’t have to be fancy! And we are still able to eat – there are some who are not, and who are relying ever more heavily on food banks daily.

For these people, for those who are sick or dying from the virus (the toll in the UK today: those infected nearly 20,000; those who have died, over 1,200), all the carers and front-line workers, we lit a Candle of Hope in our window, along with many other residents in the village and churches together as a symbol of love, faith, hope and prayer during this crisis.

And now, after our day of ‘busy doing nothing…..trying to find lots of things not to do‘, I am going to take the most delightful memory of the day and treasure it: little William, on a video call, showering kiss after kiss on me – mwah, mwah, mwah, mwah! Oh, boy! How my heart overflows!

The day started so well. Hubby brought me a cup of tea in bed (thank you) and we got up betimes. Made a great breakfast, well,…. ‘ish’. Buckwheat blinis with buttered mushrooms – sounds good doesn’t it? Only I used hazelnut milk for the blinis which was slightly bitter, so they weren’t as spectacular as I was expecting. Despite that, I’d definitely make them again!!

Mum also got up fairly early and got her own breakfast. She also made her way to the sink to wash her bowl afterwards, and that’s when disaster struck. She was a little too short to reach the sink, so I offered the wooden duck board that I usually use at the cooker for her to stand on. The trouble is, she really doesn’t remember from one minute to the next, and I haven’t quite got the hang of that. She forgot she was on the board and stepped back, only to fall off the edge of it and fell – kerdumpf! Straight on her bum! At first, I thought she’d knocked herself out on the cupboard behind her, but fortunately that wasn’t screwed into the floor, so she just displaced it, and it was just her rear end that felt the brunt of the fall. We hauled her up and transplanted her onto the sofa in the lounge, fed her with arnica, and monitored her for the rest of the day. Nothing much untoward, other than a little bit of discomfort and an argument when she refused paracetamol. Hey-ho!

I had aimed to clear up what was a very messy kitchen, but didn’t get awfully far with that, opting instead to faff about in the lounge with Mum, drink cups of tea and listen to music. But – I did do all of the ironing!! Feeling a bit smug about that!

John opted to do ‘big stuff’ down the bottom of the garden again before lunch, despite it being rather chilly today; then he had a lovely snooze after we’d eaten, having probably worked just a bit too hard – although, I have to say, not beyond his capabilities, as he didn’t come back injured or anything.

Malcolm had already delivered our groceries from the Co-op, which were very gratefully received, and Chris, from church, offered the run up to the pharmacist today for the long-awaited inhaler. So, with bated breath, we waited. When she rang our doorbell, it was a case of: ‘Do you want the good news, or the bad news?’. The good news was that the script had been sent across to the pharmacy and one of the drugs had been dispensed. The bad news was that it wasn’t the inhaler. Still out of stock of the original one, and the alternative would need to be ordered. Perhaps be in by Monday? Grumble, grumble, worry, worry.

Anxiety levels already being high because of the medication situation, they were heightened by Mother’s ‘fall-from-the-great-height-of-one-inch’. I did my best to hide a bit this afternoon by spending the best part of an hour up in our bedroom to calm my nerves, but to be honest, it didn’t help greatly.

And so, despite hubby’s best efforts, I became more and more irritated with our situation. Nothing particular, but suffice to say, we had words. It’s ridiculous, isn’t it, that you always take things out on your nearest and dearest?? But there you are – that’s the pattern of things.

Anyway, dear John made the most glorious cocktail (or two) this evening – a little number called ‘The Brazen Hussy’, the title of which always makes me laugh – and we settled down to enjoy a film. We watched ‘Rocket Man’, the film about Elton John – and we both enjoyed the story. Wasn’t sure it compared to Bohemian Rhapsody, but I suppose that’s a matter of opinion!

And so to bed, with the sobering news that there have been over a thousand deaths from COVID-19 to date, and over 17,000 people infected. Dear Lord, deliver us.

Ha! Spoke too soon about Mum being better at our house, yesterday! It never does to tempt fate, does it?? I had another lie-in this morning (have concluded that the years of running myself ragged have finally caught up with me!!), so didn’t check on Mum until late. When I did, she was up and dressed, so I thought, “Whoopee-doop! All OK there then.” But no, her eyes were bothering her. She suffers from blepharitis (although it never bothers her normally) and I think she made a mistake this morning. Finding her room a bit warm, she turned the radiator down – only she hadn’t. She’d turned it up. Blimey! It was like a dry sauna in there. So a big fuss about her eyes, pretty much all day (she’s not a great patient!). In the end, I offered a warming eye pack which didn’t go down well, and then a walk round the garden, which, surprisingly, did go down well once we’d wrapped her up like the Queen, complete with headscarf to keep the wind from her head.

Happiness was restored with the cobwebs blown away, a piece of cake with her afternoon cup of tea, and a bit of fun with the dry ice that came in with John’s specialist eye serum. The fun was, of course, putting the ice in a cauldron, face-timing the grandchildren, then filling the cauldron with water to create a fabulous overflow of ‘smoke’ which tumbled over the cauldron’s rim onto the worktop, over its edge and sent whispering to the floor.

As a matter of fact, I was the most excited among those who watched the spectacle. John can regularly play with the ice each time it arrives if he wants and, being a scientist, he knows the properties of the ice inside out; Mum exclaimed and suitably said “Wow” in the right places but wanted get back to watching The Chase; and the kids were even less enthralled. Freddie had seen it once before at our house first-hand, so watched for a bit, then asked Harriet if he could watch a programme on TV. William also had a bit of a look, but shot off pretty quickly to discover something far more interesting in his own home, and all we saw was his retreating bum on the screen. Ah, well, the best laid plans…… I enjoyed it anyway!!

John did more ‘big stuff’ down the bottom of the garden today AND……. wait for it…… had a fiddle with his restoration project in the garage….the car….. He even got the manual out and started looking up the intricacies of how to repair a specific part of it too. Now that’s what I call progress!!

However, on the downside, the ol’ man isn’t feeling all that great. He’s still plodding on, of course, but struggling with his breathing. Having run out of drugs in general and one of his inhalers last Friday, it wasn’t until Monday that the pharmacy delivered. But no inhaler, just an ‘owing’ slip. By Wednesday, things are getting pretty tight, so I phone up the pharmacy to find out what’s happening. Ah…no, sorry, we can’t get that one, none at the warehouse, sorry….. Oh! Blimey!! Phone call to the surgery – what can you offer instead, please? No worries, an alternative prescribed and the script sent to the pharmacy. Thursday: no delivery. Friday: no delivery. Phoned the pharmacy – no reply; phone call to Good Samaritan, Malcolm, to call in to retrieve the drugs, who then duly reports that there’s no script there. Eeeesh….hubby is really struggling now, so another phone call to the surgery, another script promised. Fingers crossed it arrives tomorrow.

But, as John says, it’s not a panic relatively-speaking, against a backdrop of all those with COVID-19 who really are struggling to breath, with last count of 11,658 people infected, including the Prime Minister and some of his Ministers, and 578 people dead. Yep, that’s the British stiff, upper lip for you folks!!! And, onwards……

Another gloriously sunny, sky blue day today! Slightly cooler than yesterday but, nevertheless, inviting enough to sit companionably in the garden with John, on the patio again, with warm mugs of tea.

Still feeling very tired, we lay in bed until 10 o’clock before venturing downstairs and breakfasting. Mum followed us down and managed to locate her bowl, spoon, cereal and milk without too much direction today. Already, I think she is looking a little better than when she arrived – must be doing something right, I think.

But after that leisurely start, we had an extremely busy day!!

We had decorated the kitchen a few weeks ago – I painted the walls and ceiling, and John and youngest son, Andrew, laid the new flooring – all extremely successfully, I might add! But it’s not finished, so we had a little go at tidying up some bits today, replacing some of the kick-boards under the cupboards and setting up a frame for a new cupboard above the freezer. Still more to do, but we were mightily pleased with ourselves for not yet giving up on what has seemed to be a BIG task.

After lunch and an hour of TV (The Trouble with Maggie Cole this time) to aid the digestion of our food, it was an afternoon of pottering about for me, tidying away the decorating materials and cleaning up, and John at the bottom of the garden again, moving more ‘big stuff’ and starting to fit a new door on the shed. Eeeh but, we shan’t half soon be spick and span!!!

Other than continuing with ‘jobs-to-be-done’, our particular pleasure today was chatting with friends – either electronically or on the phone. Uplifting emails in response to my blog and contact with people we only intermittently see, as well as uplifting support form my prayer group. And phone calls – so lovely to hear from Alan, whom we haven’t spoken to for a good while, and to chat to daughter-in-law Harriet, who is still working and trying to care for her young family as well as her elderly and sick father, and solace in talking to my ‘bestie’, Dawn.

We are reminded by this contact that social togetherness is so important, making us truly grateful for dear friends and family. Emotions are near the surface just now, and when, at eight o’clock this evening, we stepped outside to applaud our wonderful NHS workers and all the carers looking after us all, it wasn’t a surprise that the whole village was resounding with the sound of clapping, nor was it a surprise that I choked up.

With the death toll rising and currently at 578, there are now 11,658 confirmed cases of the virus. ICUs are beginning to fill up and doctors are warning that they will be full by the weekend. Against this backdrop, we do well to stay at home to avoid the spread of the pesky thing, but our hearts go out to all those who are ill, their families and their carers. No wonder there was such a din in Balsall Common this evening making some noise to show our appreciation of the work the carers do!

Concluding with the words now on everyone’s lips – stay safe everyone.

What a beautiful day, weather-wise!! Such glorious blue skies and warm sunshine! So much so, that we chose to breakfast on our patio this morning, nay, feast, on banana pancakes, smothered in maple syrup and sprinkled with raspberries and pecan nuts. It was absolutely glorious.

Mum was in her dressing gown pretty much all morning, but, once dressed, she also ventured out onto the patio with us. We wrapped her up in blankets (even though it was 19 degrees), making her look like she was sat in an old-fashioned Turkish bath (tee-hee!).

But we thoroughly enjoyed our hour or two sunning ourselves outside today. The birds were a-tweeting and butterflies were a-flutter-by-ing, generating such tranquillity that, for a while, we forgot that we are in a Corona-virus crisis.

Of course, reality set in when the delivery of goods from our local farm shops, Oakes’, arrived at lunchtime, reminding us that there are such good people in our midst, caring for us as we isolate ourselves from our beloved community. And, on that note, John got THE letter from the NHS today, reminding him that he is identified as someone at risk of severe illness if he catches the virus. We knew that, but it’s nice to know (sort of) that the ‘authorities’ recognise it too. STAY AT HOME and WASH YOUR HANDS is the refrain….. yes, we will. And so to washing all of the bags and goods received from Oakes’. Yay!! Lucky me!! And more hand-washing.

But the day was still beckoning outside, so, after lunch and an hour of day-time TV (Judge Rinder, this time), neither John nor I could resist the call of ‘jobs-to-do’, and we ventured once again into the fresh air to tackle those things that we haven’t previously had ‘time’ to do. Me, to do some dead-heading and weeding; John, to continue to deal with ‘big stuff’ down the bottom of the garden.

In between times, of course, we have chatted to a whole host of people on-line. The family: beautiful conversations – thrilling, heartbreaking, moving, loving – especially when little ones lean into the camera to plant a kiss on the face they see their end of the phone – ours! And the excitement of a mention of our Andrew, on Tom Aikens’ (look him up folks!) live Instagram feed; Friends: who send uplifting messages or silly jokes or political commentary; long-lost family who pop up out of the blue because they are thinking of us just now. Oh, wow!! And the Vicar, who is checking that we are OK. So thankful for it all.

And this, against a background of a total of 461 deaths from the virus to date; Prince Charles infected with the virus; over 500,000 volunteers offering to support the NHS in this crisis; and the prospect of us all applauding those brilliant front-line workers in the NHS and caring professions on Thursday evening at 8 o’clock. And our especial thanks to our own surgery, supporting John to provide alternative medicine today, when supplies of existing products are unavailable, and also prescribing other drugs recommended by the consultant.

God bless them all.

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