leukaemia-limbo-dance

I was feeling a bit frazzled this morning – copying John, obviously – and so it was a great relief to go to Yoga class this morning. Chair yoga sounds dead easy, doesn’t it? But it can be as challenging as any other type of yoga, so I enjoyed each challenge presented this morning – but was particularly grateful for the breathing exercises. Very, very calming and just what I needed.

Just before I went to class, the pharmacy from the hospital phoned up to go through all of John’s medication. We got to the last one their list. Hmmm……. where was the tranquiliser? “One drug you haven’t mentioned,” I said, “is the Larazapam that the GP prescribed last week.” Well, no… she hadn’t mentioned it because it wasn’t on her list. Oh. That wasn’t good. “Does that mean John won’t have had that drug yesterday then?” I asked. Yes, it did mean that John hadn’t had the drug yesterday. Oh, heck.

I was not best pleased. John had been anxious yesterday and three times I had asked whether he had had the tranquiliser. Three times they told me he had. Of course, I should have got them to show me proof on the drug list, shouldn’t I? But you don’t think of that at the time. You just trust them and expect that they know what they are doing.

Anyway, Andrew had been home for the weekend and went back today so, after I got home from yoga class, I squeezed him tight and said my goodbyes to help him on his journey home, before speeding off to the hospital to see the ol’ man.

Oh, my goodness. What a state he was in. Pouring with sweat and in mental torment. I went to see the staff to ask them to give him the tranquiliser. At first, they demurred, suggesting it hadn’t been written up. Ha! I soon put them right. Ten minutes later they came along with said pill and administered it.

The drug helped, but didn’t fully do the trick and John remained anxious for most of the afternoon one way and another. However, the drug did help him have a bit of a much-needed doze. He had hardly slept overnight and had been thoroughly distressed by all the comings and goings in the ward.

The ward is a medical assessment unit. A transitory ward where people arrive in crisis among a flurry of high level, bustling and loud activity – and then depart in similar fashion. There had been a hope that John would be moved to a respiratory ward, but no. It’s unlikely to happen apparently, as there are other patients who are higher priority. It looks like John will stay in the ward he’s in and have to suffer the permanent shifting sands – upsetting to his mental health though it is.

Paul came and visited, and that helped a bit – especially as he was able to sort out John’s laptop, which had been misbehaving. At 7 o’clock I left John, thinking he’d sleep and perhaps have a better evening.

I popped in to see the Kenilworth Newbies, who fed and watered (wined) me before I took myself home. I arrived about a quarter to nine. I had just got through the door when John phoned in a high state of panic.

He wasn’t sure what was happening; he wasn’t convinced they would offer him the tranquiliser during the ten o’clock drug round; he didn’t feel well; he was hot/cold/hot/cold/sweaty. He’d rung his bell but no-one came; he’d rung it again and someone did come, but went away, saying “I’ll check…” and didn’t come back. Oh dear, oh dear.

Thank goodness for yoga. While we waited for a nurse to turn up we adopted the yoga breathing exercise I’d been doing this morning. “Concentrate on your inner eye, John,” I encouraged.

We were at it for an hour. The 10 o’clock drug round arrived and the nurse listed all the drugs he was going to have. Yep – they were all there. Oh, Lord, I do hope they help him overnight. It’s so, so exhausting to be in such a panic for hours on end and no-one coming to help.

Positive thoughts, healing vibes, prayers – all very much needed please!

Take care everyone. God bless.

John is still in hospital and the NHS is doing its best to do all the checks they can to offer him the right treatment. He still has an infection which they are dealing with through IV antibiotics; they are checking his kidneys, which had taken a battering from one of the drugs he was on; and they are keeping on with the oxygen as his breathing isn’t great. They are doing their best and we are grateful.

Having said that, nursing care in hospital isn’t the same as wifely care, is it? I feel I want to be there 24 hours a day to tend his every need – but, of course, I can’t. And not only that, I don’t have any medical expertise, so what use would I be anyway? Still, it doesn’t stop the feeling of wanting to be there all the time.

When I am not there, I have a feeling of helplessness and distress because John is in distress. If only I could take away the pains, the panics, the sweats, the confusions. If only…..

Anyway, I went to visit as soon as I could today and spent the first part of the afternoon with John. As soon as I got there with a piece of chocolate cake that I’d made to tempt him, and a punnet of grapes, he pointed to the whiteboard, “Nil by mouth,” he said resignedly. Oh! He was going for an ultrasound scan on his kidneys. Not sure why it was nil by mouth for that – especially as he had to drink several glasses of water beforehand to make sure his bladder was full. See what I mean by no medical expertise? Not a clue…. Medics among you, answers please!!

But life is full of surprises, isn’t it? We were just getting into our chat and sorting out the niceties of getting ready for the scan when whom should we meet in the ward but Linda and Brendan!! Well, would you believe it?

It transpired that Linda’s Dad was in the cubicle opposite John’s bed – in an isolation unit. Linda said they had had a bit of a torrid time over the last few days as her father had had a fall and contracted an infection so, after trying to look after him themselves (Brendan without any sleep for 48 hours), he was finally ambulanced to hospital. Another family with a worry on their shoulders…..

John and I pootled our way through until about half past three, sorting out the scan, the oxygen, toileting and some food, before it was time for John’s first visitors: David and Darrell. Paul was also due to arrive but, rather than overload John with several visitors at once, he and I went to the café for a coffee, which I rather enjoyed. It was nice to have his company and calming influence.

After a while, we went back to John’s bed and I left Paul there to visit while I had five minutes fresh air. David and Darrell left and then, not long afterwards, Andrew arrived to see his Dad. At that point, I said my goodbyes – knowing that John was safe in his sons’ hands – but I really didn’t want to leave. It’s so hard to see the one you love exhausted and upset. Perhaps he’d had a few too many visitors today, in hindsight.

What has been particularly encouraging though, is that John has become less confused as the day has gone on. He was amusingly confused when I first arrived: “Have you been at work? Or at home? Or working from home?” he wanted to know. “I haven’t been at work,” I said, as gently as I could, “I’ve retired.” He was astounded. “Have you?” he responded, “Well, fancy that! You’re retired!!” Mind you, I am sure if I had a similar conversation with him this evening, he’d know that I’ve retired. He’s much more with it now, thank goodness, although he’s still feeling quite anxious.

“Come to our house for tea,” said Paul, as I was about to leave the hospital. Well, I was pleased to go there as I hadn’t seen the Kenilworth Originals for a few weeks. Why not? You may ask! They’d had COVID so had been out of bounds for the last couple of weeks. All recovered now though, so it was nice to see them and I had a lovely time with Freddie. He was adorable.

Talking of adorable – William has lost a second tooth today…. proud as punch he is! Hehe! Look at that grin!!

Well that’s all for now folks – more of the saga tomorrow, if you can bear it!!

Take care everyone. God bless.

What was that, that Spike Milligan had engraved on his headstone? ‘I told you I was ill’? Ha! Yes, it transpires that John does have an infection, after all – and it’s taken him back into hospital today.

He wasn’t best yesterday. Nevertheless, never one to give up, he was game for getting out of his chair and showing Margaret and Chris the Lotus. He wasn’t up to driving it – and anyway, the engine would start as the battery had gone flat – but they pushed it out onto the drive and had a good look round it and were generally impressed.

The effort floored John, who then flopped into his chair and slept for the rest of the afternoon. To be honest, I wasn’t surprised he was tired, but I was a bit bothered because he was getting more and more confused. Although I made light of it, suggesting it was the morphine, I wasn’t actually convinced of it because he hadn’t had much of the liquid nectar all day. I wasn’t quite sure what was going on. His temperature was stable and he was still managing to get up on his pins to go to bed, so I expected him to get a good night’s sleep and we’d be all hunky-dory today.

Hmmmm…… it didn’t turn out like that. He stumbled into where I was sleeping this morning and was clearly very unwell. He said he’d had a fall. He’d gone to open the curtains and bumped into the blanket box I’d put in the master bedroom, only yesterday, to keep all his medication in. Clearly a mistake on my behalf. He said he fell onto the box and then onto the floor. Oh, heck.

I couldn’t see any bruises or injury, but he wasn’t making a great deal of sense. I tried phoning the MacMillan nurses, but it was too early for them. Being a Sunday, there was no point in phoning the GP either, so it was 999 again.

The paramedics came, did lots of checks and said, “It looks like we’ll be conveying you to the hospital, John.” John was disappointed, of course, but resigned. Back to Warwick Hospital we went.

Fortunately, we had a much better experience today. Well, after all, the doctors weren’t on strike today, were they? So it was bound to be better.

They did lots and lots of checks. They decided to treat the infection under the sepsis umbrella and got the antibiotics prepped and administered fairly quickly. Steroids were administered for his crackly chest; a saline drip was put up to keep him hydrated; an oxygen mask and a nebuliser were strapped to his phizog; an oximeter was clipped to his finger; and a cuff was wrapped around his arm to check his blood pressure. Oh, and if you want anything else, there was the thermometer in his ear and several goes at poking a needle into his arms to draw blood.

A chest x-ray and a CT scan revealed nothing untoward, but there was a suggestion that the confusion was not morphine-related. Maybe a stroke, or a bleed or even the cancer having migrated might be the problem? Scared the pants off me. The confusion was no longer amusing…..

Anyway, they decided to keep him in overnight and the consultant from the ward came down to see him. “I’m just going to take some blood from an artery, John. Sharp scratch …” (why do they always say that? It’s nothing like a scratch, is it?) Ten minutes later, the result. Not enough oxygen in the blood. “Would that cause confusion?” I asked. “Yes,” replied the consultant, “I think they’ve gone down a rabbit hole with the other suggestions.”

There is evidence of kidney damage – probably as a result of one of the drugs John was on – which may be underpinning the whole issue, including the confusion.

Well, now we know what we’re dealing with, maybe the plan the consultant has come up with will patch the ol’ man up and get him back home to me. Watch this space folks!

More prayers and healing thoughts will be appreciated – but, gosh, I bet you’re all exhausted with it all now!!

Take care everyone. God bless.

Although John was better yesterday and the panic that had set in on Tuesday night has abated, he is still struggling, what with one thing and another.

The medics ruled out a blood clot in the lungs, but found a very large hiatus hernia, which accounts for the breathlessness and, in part, for the slow progress of food through the digestive system.

Naturally, the doses of morphine are affecting the digestive system too, so we are plying the poor boy with multiple potions, several times a day, to ease the passage of food. I have yet to discuss this further with the medics here – either the GP or the MacMillan nurses – but I think we may need to up the dosage of purgatives as we up the doses of morphine.

The GP, and the consultant we saw yesterday after the scan, are both of the opinion that John was brewing an infection. “Start the antibiotics,” the doctor ordered – so we have.

We have started with Diclofenac today as well, as this drug helps with bone pain and we will see how we go. John is fine for a while and then, as the pain relief starts to wear off, he struggles with the pain in his leg and back. This has impacted on his mobility round the house – and we had been patting ourselves on the back for having bought an electric wheelchair until, that is, the furniture and doorways leapt out and got in John’s way. It’s been fun trying to manoeuvre the wheelchair around the lounge, kitchen and hallway. Some Polyfilla and a pot of paint will soon be required methinks. Mind you, it’s given us a bit of a giggle when he’s got stuck in a doorway or two – “To you,” “To me,” “Left-hand down a bit….”

Meanwhile, the morphine is making John sleepy and he nods off at the drop of a hat. Bless him, he is haunted in his dreams by Rio, who is apparently wandering around the house. We have also had a chat about a farmer wearing yellow wellies coming to visit him and a black man with a grey face sitting in the armchair in the bedroom. “Can you see him?” John wanted to know. Well, I could see exactly what he was looking at and when John got up and walked past the chair, so could he, too. “Oh….” he said, “it’s a pile of clothes…” Yep. Hehe.

John has slept a lot today, taking himself to bed just after mid-day for the afternoon, and then an early night tonight. I am hoping he will sleep better than he has the last few nights, but we’ll see. It’s such hard work for him, bless him.

God bless you all – everyone’s kind thoughts and prayers are appreciated.

I went to bed late last night – pottering about doing a few jobs. Half an hour after I got into bed, I heard John get up and go downstairs. I didn’t think too much of it, but after a while, I could hear him moaning and groaning, so I thought I’d better check up on him. It turned out that he wasn’t feeling very well at all. And so it started….

We dialled 111 for advice. “Not us – try 999,” they said. So we dialled 999 and the paramedics obligingly took John off to Warwick Hospital.

John arrived at the hospital at a quarter to five in the morning. I arrived soon after. Of course, there were no staff, were there? I fretted and fumed as I tried to get a doctor to look at John and do something. It was over three hours later before a doctor was actually assigned to John and even then another half an hour before they turned up at his bedside. “You chose the wrong day to come to hospital,” said the consultant, “the doctors are on strike……” Oh….ah…..

Once the day staff were on duty however, they got on with it and did several tests to see if they could pin down the medical problem. John had woken up from a short sleep in the middle of the night, unable to catch his breath. This happened several times and caused him to panic a bit, naturally. And then it was a vicious circle of panic/unable to breath/panic etc.

The consultant finally concluded that much of what John was suffering from was high anxiety – however, they didn’t rule out a blood clot in the lungs and did a blood test accordingly. The result came back showing some raised level of whatever they were looking for. So it’s blood-thinning injections (administered at home, eek!) and a CT scan of the lungs tomorrow (fingers crossed).

Meanwhile, John was very unwell but they deemed him fit to come home, so we arrived back about three in the afternoon, having been up all night and not had a bite to eat. John wasn’t hungry however, and picked at the soup and bread I offered; and refused William’s birthday tea of Frankfurter Hot Dogs.

We are very, very tired and John continues unwell – for which he apologises, bless him. Healing prayers and get well thoughts much needed if you are so inclined.

Take care everyone. Let’s see what tomorrow brings. Let’s hope it’s not more merry hell. God bless.

Last week, I overheard John on the phone, saying, “Right-o then, we’ll see you on the 18th.” When he came off the phone, he explained that he’d arranged for us to go down to George P’s for the day. I was a little dubious because, at that point, the ol’ man was still struggling. But of course, he rose to the occasion today, didn’t he? And we had a lovely time.

I think it’s good for us to get out and about a bit if we can, so I am sure we have both benefitted from our trip down south.

We said our goodbyes to Andrew, who had arrived home about an hour before we set off. He had slept over at the Kenilworth Newbies because he’d spent yesterday supporting them with William’s 6th birthday party.

We didn’t go – Danielle had said, “It’s going to be a party of a dozen five year-olds, all running around and screaming….” so we gave it a miss this year – our ears and nerves telling us we’d not enjoy it. I think William enjoyed it though – and he certainly enjoyed the cake that Mummy had made!! Look at the cheesy grin!

We set off just after 10.30 this morning; did a lap round the roundabout as is our wont; nipped back into the house to collect what we’d forgotten; and finally set off just before eleven. The journey down the M40 wasn’t so good, with rain lashing down and spray splashing up, but we managed to arrive just an hour after John had promised. We were delighted to see Nev there as well, and Val, who arrived just after us, having been out chairing a committee meeting.

We went to the pub for lunch and what a treat it was. We had the best table in the house, nicely tucked away in a corner with a great view of Ickenham High Street.

Naturally, the talk turned to politics, as it often does when John catches up with his Uni friends. I just closed my eyes and listened…….. but I think John was invigorated by it.

John’s hip and leg niggled a bit again though, so we poured morphine down his neck and popped the paracetamol, so that he could enjoy the day. Bless him, he was determined to walk from the car to the flat; then from the flat back to the car; and from the car to the pub; and vice versa. Jiggered he was – absolutely jiggered. “Shall I get the wheelchair, John?” I offered at several opportune moments, but the terse answer came back each time: “No. I’ll walk.”

As has been the case recently, I failed to take photos of the event. Honestly, I am so forgetful! On the other hand, I may have been enjoying myself too much to think about it. Probably the latter, what do you reckon?

However, I didn’t forget to take photos of the lovely bunch of flowers Carol sent through to us last week. Cheered us up no end. Lucky us, eh?

Here’s to enjoyable events and pretty things. Food for the soul.

Take care everyone. God bless.

After the excitement of getting the Lotus on the road on Friday, we were exhausted yesterday and spent all day sitting on the sofa, doing nothing but watching the rugby and Strictly (well, I watched that!)

We looked at each other and wondered whether we ought to do something. But I wasn’t keen. I was very happy to sit and do nothing. So John decided he was happy to do the same.

This morning dawned and, instead of a nice cheery greeting, John was groaning with an aching hip and leg. We dosed him up with paracetamol and morphine and hoped for the best. As the day wore on, it eased a bit, but it’s been niggling all day and it put us both in the doldrums.

John has spent the day on the sofa looking after himself and watching a bit of TV. I felt a bit blue – presumably a low after the high anxiety of the last couple of weeks and high excitement of the last couple of days. However, I forced myself to potter about a bit and eventually found myself in the garden, having a little bit of a clear up. Everywhere is overgrown as I have done absolutely nothing in the garden this year.

The only thing I did do in February/March time, however, was plant a few dahlias. They have been disappointing though, because I haven’t given them the right attention. Nevertheless, I have at least six blooms to show for having planted them anyway! Here’s a sample which are currently cheering me up!

I had missed yoga this week because of one thing and another, so Jaime reminded me that there was a Yin Yoga practice this evening. I decided to take her up on it. John was happy for me to go, and I thought that maybe it would help my mood. I thoroughly enjoyed the session and don’t feel quite so down in the mouth as I did. I’m hoping I’ll feel even better tomorrow.

I’m hoping that John will feel a bit better tomorrow too. Fingers crossed. One thing that might boost his spirits, of course, is if England win the rugby against Japan this evening…… it’s looking hopeful, anyway.

Take care everyone. God bless.

What a day!! John and George have beavered away like nobody’s business all day and have finally got the Elan on the road! Very, very exciting!

John tinkered about and acted as Foreman; George tinkered about and acted as The Best Apprentice; while Sue watched on, handing out tools and washers and things when needed – and acted as a Dolly Girl when it came to the final flourishes – to polish up the windows so that John could see out to drive.

The weather was excellent and helped the day run well. “Just a little bit to do now,” says John, as he and George mulled over yet another piece of wire that was loose, or a tube that didn’t fit.

“Ah, now then,” said George, “we’ve got to sort out the horn.” We all nodded in full agreement. Yes, please, please sort out the horn. We giggled about it but, in reality, it was making us all jump. Every time John turned the steering wheel, the horn went off. And it was loud.

They put their heads together and were confident they’d cracked it. “Now for the bonnet,” John said. A delicate operation – a no-brainer perhaps?

Steering wheel on? 👍✔ Bonnet on? 👍✔ Boot closed? 👍✔ Seat belts on? 👍✔ Off we go!!

They set off towards the roundabout….. John turned the steering wheel….the horn went off….Toot! Toot! John turned the steering wheel again….. Toot! Toot! And again…..Toot! Toot! Sue and I were helpless with laughter. We could hear the car tooting up the road, round the roundabout and back home again. Erm….. the horn wasn’t quite fixed. A bit more tinkering then?

The horn was finally beaten into submission by 8.30 this evening. What a very long day everyone had had. Tired but satisfied, we waved goodbye to our dear friends, absolutely thrilled with the work done on the car and very, very grateful for all their help.

And, as you can see from the photos, John has felt a lot better today. We have had movement, so we think the crisis is over. Marvellous. Thank the Lord.

Take care everyone. God bless

Well, we seem to be on the mend! When I say ‘we’ I mean John, naturally. That in itself gives us both a boost.

After a little bit of a grizzly day yesterday, in which we both, in turn, indulged in a bit of growling practice, today has been much better.

John didn’t sleep brilliantly, but he felt brighter this morning and was up early enough to get a shower before Sue and Rod arrived, late morning. We weren’t sure whether to let our guests in, mind you, as there had been talk of Covid in the air. However, we opened all the windows and wore masks, just in case.

We thoroughly enjoyed the company and it was just so good to see them again. It’s been a while since we spent any time together. They didn’t stay very long though and left not long after mid-day, to make way for the next shift. George and Sue had arrived for their stint, with great plans for car tinkering. Hellos were said – ‘Nice to see you again’ and ‘When was the last time?’ before the goodbyes shortly followed.

John had a very good afternoon in the garage, even attracting a passer-by i.e. Pete Cross, who couldn’t resist coming in and tinkering with George and John as well. I was rather pleased to see them all huddled in the garage, their heads together thinking about a common problem. Lovely.

Meanwhile, after a bit of faffing about around the house with one thing and another, Sue and I watched ‘Mrs Harris goes to Paris’ and really enjoyed ourselves. Might have opened a bottle of wine, as well……

Just before tea-time, John and I took a break from our guests for half an hour while we chatted to our solicitor via a Teams Meeting. We are making our wills. We did them a few years ago but things change, don’t they? So we’re at it again.

And the big news is that there has been some movement along the alimentary canal. Whoopee-doop!! John is definitely improving – and the pain in his leg is not quite so severe, so I’m hoping that the blockage was a contributory factor and it’ll stay a bit more eased for a while now.

Hope springs eternal, eh?

Take care everyone. God bless.

Although today has been marginally better than yesterday, we are not yet the best we can be.

Neither of us slept well – must have been about 4 o’clock in the morning before I fell asleep; and John’s sleep was in fits and starts with plenty of ‘light-on/look-at-the-phone/listen-to-a-story/can-I-have-any-more-drugs-yet?’ time.

However, the ol’ man hauled himself out of bed this morning and brought me a cuppa again. We had a bit of a giggle though… it was a bit like Mrs Overall’s ‘soooup?’ situation: wobbly hands and plenty of tea on the tray. Never mind, there was still plenty of hot tea to drink, and it was lovely.

We breakfasted and then John’s MacMillan Buddy called in. He has a regular slot on a Tuesday morning now, which works really well. It’s just a chat among mates, type of thing, which John enjoys – especially as they talked about the rugby today.

We were waiting in for a phone call from the oncologist, but that was much later than we expected, so the MacMillan Buddy went home and we greeted the MacMillan Nurse, Julie, into the house in his stead before the phone call came.

Julie was very good and made a through assessment of John’s situation. As she was there when we took the phone call from the oncologist, we found it very helpful because she was able to ask some questions that we’d been struggling to get answers to.

We were also waiting in for the GP to call in. As the afternoon wore on and lunch was over and done with, I was anxiously looking at my watch. “I’m going to have to leave you to see the doctor yourself, John,” I said, “I’ve got to be at the hairdressers at 3 o’clock.” No worries! John grinned. He was morphined up by then and ready for anything. Well, that is, if he didn’t fall asleep.

It transpired that he didn’t fall asleep because he had let the doctor in while I was out, and had a rational conversation with him – even remembering the outcome of the chat when I got home! Boom! Keep taking the tablets was the advice, of course – and we’ll do another attempt at shifting the contents of the alimentary canal tomorrow.

A new symptom has emerged, however, that we are yet to get to the bottom of. John has started shaking uncontrollably every so often. Had he got a temperature wondered the medics? No? Well, if it goes over 37.2, whisk him off to hospital…… hmm, OK.

In the end, the doctor thought it was pressure on a nerve or two in his back causing the shakes, so we are to watch this space. Everyone was very interested in John’s walking, however. “Would you like the Occupational Health Nurse to come round?” asked Julie. I said yes because, although John isn’t keen for any aids as such just yet, I’m thinking it’ll be as well to get something in hand.

John felt particularly unwell this evening and took himself off to bed at six o’clock. Woke up at ten o’clock thinking it ought be daytime though, didn’t he? He! He!

Meanwhile, we continue to administer all the drugs on offer from the little pharmacy I have set up in John’s room. There’s loads of the blooming things! Can’t wait for his jolly old intestines to sort themselves out.

But look’ee here! What’s this we see? A vision of loveliness to cheer us up!! A fabulous bunch of flowers from Carol. Unexpected but very much appreciated on such a drab, and seemingly never-ending, day.

And a final note before I go: Happy 70th Birthday to dear Chris! Apparently she had a fabulous celebration with the family yesterday and there’s a video of her dancing in the street to prove it!! That’s my girl!

Take care everyone. God bless.