Category: Uncategorized

We are definitely having a series of ‘fat’ days. Days in which there’s a lot going on and not a lot of wriggle room.

Today was just such another day. It started early with John in a kerfuffle with his catheter and a bit of a clear-up operation. Then John decided he’d do a ‘tour of inspection’ on his house. This was unexpected. We had just had a bit of an altercation about whether or not the oxygen bottles and machine were really pumping out oxygen or something else? “I’m not putting the canular on,” he said. Okey-dokey. A little while without won’t hurt. “And I’m going to get dressed.” Smashing. “I’ll just go and get your clothes,” I promised, and ran upstairs to collect them. A few minutes later, I heard the stair lift on the go. Crikey, he was coming up under his own steam.

All fine and dandy so far. John inspected all the bedrooms to check they were shipshape. He got dressed and went into the bathroom to clean his teeth, whereupon I started to realise that the effects of the oxygen had now worn off and exertion was getting a bit more difficult.

He sat with a plump onto the bed and there he stayed…… unable to get himself back up to standing and walking to the stair lift. The walker was too high for him on which to get any purchase. The bed was too low. “Can you lift me?” John wondered. Ha! I did my best.

“Hang on,” I said, “Stay there, I think I’ve got something that might do for you lean on.” One of Mum’s little bedroom chairs was sitting invitingly on the landing. I brought it back and sure, enough, it was just right.

Ah… but just a minute! It didn’t get John near enough for him to transfer to his four-wheeled walker. Right…. I ran up into the loft to fish out the other chair (they had come as a pair) and that did the trick. So by a bit of a hotch-potch, we got John back to the stairlift, down the stairs, into his wheelchair and then the armchair. Success!

And John was persuaded to put his oxygen back on.

Then we waited in for the fire service to turn up. They are apparently going to do a ‘safe and well’ assessment of our home now that we have oxygen on hand 24/7.

Suffice to say, we waited in vain and then I took a phone call to say, ‘Sorry, but we’re cancelling today’s visit. How about next Saturday?’ Fine, I said, but thought it a bit mad that two weeks would elapse before doing the check. Hey-ho. No naked flames, please…..

We pretty much galloped through the rest of the day with visitors. I was grateful that Paul came to keep John company while I went for a massage. That was lovely and relaxing, which I sorely needed.

Moira, one of our Lay Readers, came just after lunch and we had a home communion which was good – although a bit rushed, because Paul had taken a phone call to say that the Community Respiratory Nurse, Karen, was coming out to visit.

Moira left and Karen arrived. While Karen was visiting, the bed people arrived to add an extension to John’s bed. Catherine and Lily then arrived to visit John just as the bed people left. Karen left, and David, Gloria and Darrel arrived. Another bed man arrived with the spare part they’d forgotten earlier. Oooh, it were like Piccadilly Circus!

David made himself useful and mended a couple of radiators – thank you very much. Gloria brought cake. Everyone brought hugs. But by five o’clock, John was ready for a nap, so we said our goodbyes and John slept.

John woke up about 8.00 and we watched a bit of TV before we welcomed Andrew home after his trip to Berlin. Of course, we wanted to hear all about it – which we did, intermingled with John’s left-field commentary, which was fuelled either by lack of oxygen or morphine, making us laugh. I turned his oxygen levels up a bit to see if that would help. It did a bit.

Andrew is on night watch.

Take care everyone. God bless.

Today has been what I call a fat day. It’s felt like it’s been bursting at the seams.

Naturally, I am concerned about John’s welfare, so the first job of the day was to phone the MacMillan team to see if they could call in and discuss John’s medication. Pain relief overnight hasn’t quite been cutting it.

Second job of the day was to phone the MacMillan team at the hospital to see if they could sort side bars for John’s bed, and a little table. It transpires that neither were ordered so a separate order must be made. I mean, it’d be just like John to thrash about and tumble out of bed, wouldn’t it? Ha! Monday is when they are promising to get something delivered….hmmm. Meanwhile, there are cushions and blankets a-plenty on one side of the bed and a table blocking the fall the other.

Luckily, Andrew was at home today. Michael, too, suggested that he and the family call in. And Paul texted to say that he would drop by late morning. All in all, it turned out very well in that all the relevant people were with John and me as we talked about the nitty-gritty of John’s situation with Andrea, the MacMillan Nurse.

John himself was confused. I knew it wasn’t the morphine talking so we administered the oxygen that we now have to hand. He perked up a bit but not quite as well as I would have liked. We’ll see how he is tomorrow.

But it all comes home and lands with a massive thud when the discussion turns to the question of where John would like to spend his last days? Would he like to go back into hospital if need be? How would he like to be cared for? And would we like some help at home? John may qualify for ‘fast track’ CHC funding for such help. Would we like Andrea to investigate this?

The answer to the last question was ‘yes, please’, with the shocking realisation that an application is completed when someone probably has ‘less than three months to live’.

We didn’t like to hear it. We were upset. However, I was comforted by the fact that we were all together, sharing our love for John, despite the circumstances.

Me being me, I am pretty good at displacement activity. I wasn’t keen to dwell on what we’d just been told so, mindful of the time limit on us and the fact that the boys were with us, I decided to make the Christmas Cake. “Everyone has to have a stir and make a wish,” I declared, all the while knowing that our greatest wish could not possibly granted.

Nevertheless, I set to and started mixing up the ingredients. “Thomas would like to help you, Grandma,” said Michael, as he came into the kitchen. “Jolly good,” I replied, putting Thomas immediately on mixing duty. We did well between us, and then offered the mixing to everyone else. “Take the bowl through to Grandpa,” I said to William, as he finished his turn, “and tell him to give it a stir.” Grandpa had the final stir – his cake-making days not yet over. Just got to decorate it now!!

Danielle was busy in the kitchen, too. She had the bright idea of batch-cooking a chilli con carne for us, so she gathered all the ingredients together and set it on to simmer while I made the cake. We were very busy bees!!

Michael and I went out for a breath of fresh air late on in the afternoon, after we’d waved goodbye to Andrew who was jetting off to Berlin. He had been offered the opportunity to eat at one of the Michelin-starred restaurants there, all expenses paid, so he couldn’t say ‘no’.

Meanwhile, Michael, Thomas and I wandered through one of my favourite places, Katharine’s Wood, and then onto the play park, where Thomas was disappointed to find that all the equipment was wet and not for playing on today.

The fresh air and the chat with Michael did me good and I felt somewhat refreshed when I got home. Paul, meanwhile, sorted out our landline telephone which had been doing very silly things; and then he shot up to the pharmacy for an addition to John’s prescription to see if another pill will help the pain management overnight. Fingers crossed.

I’d like to say we sat quietly and contentedly this evening but John put the Man U vs Newcastle match on the TV……… he dozed most of the way through but said ‘yes he was watching it’ every time I suggested changing channel…… ouch.

And that was us today.

Take care everyone. God bless.

.

Well, I never!! It ain’t like it used to be, is it? We decorated the porch and it looked good. Trick or Treaters came and went, and lots of fun was had – until two-thirds of the way through the trick or treat hours, when some little blighters nicked all of the sweets!!

Daft old me had left the basket of sweets under the Halloween display in the porch. Clearly the thieves noted that and came back for a second helping – or two!! I had to turn some of the children who came later away. That is, until Andrew came home and went up to the shops to buy some more sweets so we were able to satisfy the last few who came a-knocking. But crikey! I wasn’t expecting that! A bit of nasty trick, don’t you think?

Meanwhile, indoors, John was generally resting in his chair, where he had been pretty much all day. He had got up and out of bed at six o’clock this morning, making his way to the loo, amid much moaning and groaning. Naturally, I heard the kerfuffle and went down to investigate. He had managed to make himself a cup of tea and get to the loo, but it was a bit of a struggle to get off it again. Good job I was there, eh?

Anyway, we made our way back to the lounge courtesy of the wheelchair, and drank our tea very companionably. We had a little bit of chit-chat, had our breakfast and then both sat quietly for a bit.

Harry, John’s chatty-man from MacMillan came and the gents sat down for a natter. However, I could see John wasn’t best, so suggested he tell Harry when he’d had enough. As it turned out, the Community Nurse turned up to sort John’s catheter out, so Harry went on his way. John had had enough after about three-quarters of an hour, anyway.

The nurse did a good job of tidying John up, but commented that the hospital had been ‘a bit naughty’ sending him home with the hospital catheter, as it was a trip hazard. Hm…..

The hospital had been busy yesterday when I collected John. He had five bags and a suitcase (heaven knows how that came about!), and was in his chair, waiting. “Can we have a wheelchair?” I’d asked. The nurse was non-committal. Basically, if you can find one, you can have one, go and look for yourself….. I went to the car and brought John’s own wheelchair instead. We sat him in it, and the nurse wrapped the tubes of John’s catheter round and round, so that they wouldn’t tangle in the wheels. “Erm…….can you change this hospital catheter for a home one?” I wondered. The nurse shook her head. “The District Nurses will come round and do that,” she replied. Oh. “Can someone help me take John down to the car?” I wanted to know, eyeing all the bags……. the nurse shook her head again. “We’re very short-staffed,” she answered, gesturing to the empty space where staff should be. Ah……. I made a couple of trips with the bags and then took John down. It wasn’t too bad, but we felt just a bit short-changed.

And it took a phone call to the Community Nurses to come and deal with John’s situation this morning. The nurses hadn’t planned to come and check on John until Thursday, so he would have been a bit at risk of tripping until then, wouldn’t he?

Anyway, the rest of the day was pretty uneventful, with a bit of nap this afternoon – who? Me? Hehe.

Take care everyone. God bless.

So the ol’ man has made it home. He’d planned his escape and, for once, it came good.

Oxygen delivery? Tick! Hospital bed delivery? Tick! Drugs prepped and ready to go? Tick! Bags packed? Tick!

In fact, when I arrived at the hospital this afternoon, John was sitting out of the bed, with all his chattels surrounding him, and another poor chap was sitting at the end of the bed waiting to hop into it. Blimey!! I knew it was tight, but really!!??

I was very surprised, to be honest, that the NHS had got a wriggle on. When they said things would be delivered today, I wasn’t convinced – but sure enough, the delivery vans were queuing up outside our door just after lunch and the delivery men were hot on it to get the equipment into the house and set up. Fabulous.

I wondered whether I might have to persuade John to get into the bed in the lounge. But no. Once he was home, he sat in his chair and watched TV for bit, had his evening meal and then looked longingly at his bed. At half past eight that was it. “Sorry folks,” he said, “But I’m going to bed.” We helped him into his bed and he was away. Fingers crossed that he has a good night’s sleep.

So there we are. Let’s see what tomorrow brings.

Take care everyone. God bless.

John is still in hospital. The weekend discharge is difficult, apparently. There are not so many staff on duty; the community team has stood down; equipment can’t be delivered…… and so we wait.

John has been stoic and accepted his stay in hospital has been extended. We were hopeful, however, that he might be discharged on Monday. We wait and see though because, since Friday, there’s been a couple of changes to the circumstances.

On Thursday, after John had had radiotherapy, it looked like things might be going well and the treatment had worked. The doctor was cautious. “How long can we expect the effects of the radiotherapy to last?” we asked. “Everyone is different.” he replied. Ha! That’s an answer we get a lot!! “Sometimes, it’s 24 hours, sometimes a bit longer, sometimes a few weeks.”

Hmmm…. well, it might have lasted longer than 24 hours if John hadn’t fallen down and jarred himself. Landed on his bum and made himself a bit sore. “I’ll be alright,” he reassured me. But, in reality, the jarring seems to have set up the pain in John’s back again. Perhaps undoing the good that the radiotherapy had done.

The doctor had explained that not only was a weekend discharge difficult for all the logistical reasons explained, but they thought they’d like to keep an eye on how John responded to his radiotherapy treatment. Which is why we are wondering whether discharge will happen tomorrow or not.

The hospital bed has been ordered, we believe. The delivery is scheduled for tomorrow, perhaps. If it arrives, the medics at the hospital may be comfortable with the discharge. If it doesn’t, then another night’s stay might be on the cards. Watch and wait…..

In the meantime, I have been trundling over to the hospital to visit John, of course, but yesterday I had a bit of a headache and left late afternoon rather than staying on. “Go home,” John insisted, “get some paracetamol and some rest.” I didn’t need telling twice. I came home, knocked back a couple of paracetamol and went straight to bed. At five o’clock in the afternoon.

I still had a bit of a headache today so I decided I’d better check that I wasn’t going to transport Covid to the hospital. The test came back clear, so perhaps the headache is stress-related. Can’t think why that might be?

Anyway, the family came round today to do some furniture-shifting in readiness for the hospital bed arriving; and the children helped decorate the porch with Halloween stuff. Well, actually, as Freddie said, grinning, “We didn’t do the decorating. We just played with it all from the box.” The grown-ups did the decorating….. the kids just had fun! Hehe!

It was good to have the family round though. My headache seemed to ease after they’d been. And, in the end, Paul was keen to visit his Dad this afternoon, so I was given a day-release ticket and was allowed to stay at home. Double-helping, eh?

Andrew arrived home not long after six o’clock. Having been at a concert in Leeds last night and having the half-term week off, he’s come for a relax. Ha! Ha! Little does he know……. might have a few jobs lined up for him…..tee-hee!

Take care everyone. God bless.

There’s an elephant in the room and we do not dare to acknowledge it. We do not articulate our fears. We hold back, each wondering how the other is feeling. We consider each other; we watch each other’s expressions, trying to read their thoughts; we skirt the topic; we wonder to ourselves, “Is now the right time to talk about the inevitable?” And we ponder the thought of seeing in black and white, or hearing out loud, the word ‘dying’.

John is brave and brings the topic up. We start to talk about seeing friends for one last time; what the wake should look like; how we should all remember him; how much longer we have left together and how we might spend that time.

I say that we should spend our time in, and with, love. Try to savour the moments we have. Reflect on the good times we’ve had. Thank the Lord for our many blessings and make our peace.

John agrees. But he frets. He’d like to finish the Lotus – some gubbins or other is dingle-dangling and needs a bracket. He’s bought the metal and he’s got the plan. He’d like to have a whacking great big celebration for our Golden Wedding Anniversary but that’s next July and he thinks he won’t be here.

I offer solutions: for the Lotus, draw your plans and oversee A.N. Other making and fitting the bracket. And for our anniversary? Well, we realise that over the last 12-18 months we have actually seen everyone we would have invited to celebrate with us. So, we’re not doing anything. John’s habit of missing significant wedding anniversaries has a precedent. Remember our 25th? Hehe!

We confirm our choices: to enjoy the people we have around us; treasure the memories we’ve made, in whatever time is available; and make more memories – as happy as they can be – before ‘the inevitable’ crosses our threshold.

And we hold each other very, very tight.

Take care everyone. Hold your loved ones close. God bless.

So John is still in hospital.

Once John had arrived at Heartlands on Monday, it took them until midnight to the following day to transfer him to a ward. Meanwhile, the medics were reviewing the situation….

“The MRI scan shows that there’s a tumour on the vertebra, L3,” explained the apparently 16-year-old doctor to John. “It’s causing the disc to bulge and press into the spinal cord. This is why you’ve got pain and you’re going off your legs.” Ah…….what could be done? we wondered. The neurosurgeons said surgery was not possible. “We’re waiting for the oncology team to let us know whether radiotherapy is an option,” she continued.

So we waited all day yesterday and by the time I left the hospital at tea-time, we had heard nothing. However, about seven in the evening, John phoned me up to tell me that an ambulance would be trundling him across to the Queen Elizabeth Hospital and they’d do a spot of radiotherapy today.

Regrettably, I wasn’t on hand to visit and hold John’s hand. Before he’d gone into hospital on Monday, I had arranged for Paul to come across and keep John company from 8 until 6 while I had a spa day with Anita. Pete and Dawn had bought me a voucher for my 70th birthday last year and it was coming up to its expiry date. I’d asked Anita some months ago if she’d come with me and we’d provisionally agreed a date, and then finally settled on today.

“I’ll need you tomorrow,” said John, “to be with me at the QE.” Ah…… for a minute, I thought I’d be cancelling my trip out. However, when I asked the ol’ man if he wanted me to cancel the spa day, a very firm “No!” came back. “You go and relax,” he said.

So I went to the spa with Anita and we had a marvellous time, thank you very much. Paul was golden and went across to catch up with his Dad as he got back from the QE about 4 o’clock, and stayed until just after seven, which helped John no end.

Apparently the radiotherapy went OK, although it made John feel a bit sick. He’d also had some pain on the way back in the ambulance because it was a bumpy ride and the morphine wasn’t quite up to scratch. He was very tired when I was chatting to him on the phone this evening.

Initially, when John was languishing in A & E, it looked like he might be discharged on Wednesday. Hahaha…..On Tuesday night, just as he got to the ward, John fell. Hmmmm…. just onto his knees, but nevertheless, the porter reported the incident to the nursing staff and a black mark was put against his name.

On Wednesday morning, John decided to take a shower – only to find that his legs wouldn’t hold him up and he had another tumble. Another black mark….which led to the comment by one of the staff (or was it the doctor?) that John would need a hospital bed at home. “We’ll keep him here for a few more days,” she said, as she sped off to another patient.

So that’s where we are – awaiting developments and contemplating mortality.

Take care everyone. God bless.

John’s favoured mode of transport these days seems to be an ambulance. For once, I haven’t gone with him, warned by the Paramedics that there would be a very long queue at Heartlands. And so it has turned out. John set off just after 7 o’clock and is still not inside the building as a I write at 20 past 10.

The MacMillan Nurse, Andrea, came to see us today and, based on the various symptoms we talked about, she said there were one or two red flags. Oh. She said she’d go and discuss John’s case with colleagues and phone us to let us know the outcome.

Half an hour later, Andrea phoned to say she’d organised an ambulance to take John to hospital. She suspects that John has compression of the spine, so an MRI scan is to be taken and decisions to be made as to what to do next. Well, they will make those decisions no doubt, whenever John manages to cross the hallowed portals of Heartlands, anyway!!

I found it difficult to stay at home and wave him off but, when I asked him if he wanted me to go with him, he said, “No.” I do hope they look after him.

Paul came over and kept us company for a while, which was lovely – and he, too, suggested that an early night might more helpful to me than sitting in a queue of patients and ambulances through to the early hours of the morning. So I acquiesced and am off to bed.

I had planned to write about the lovely times we’d had with the family over the weekend, but there we are. Hospital talk yet again.

Take care everyone. God bless.

John was perked up a bit yesterday when Harry, his ‘chap-for-a-chat’ from MacMillan, came in the morning. I don’t know what they find to talk about, but they manage two hours’ worth every week.

Whilst John was occupied with nattering, knowing that he was well-looked after, I took myself off to yoga class, which brightened me up.

At lunchtime, Paul came to keep John company while I went to my Mum’s cousin’s house for lunch. I thought my days of ‘ladies wot lunch’ were over, but with Paul ministering to John’s every whim, I knew a couple of hours out would be just lovely. Jenny, Mum’s cousin by marriage, had invited another of Mum’s relatives round and she thought it would be nice to get-together. I was keen to see them as they hadn’t been able to get to the funeral, so I wanted to share the day.

We had a slap-up lunch and a glass of wine, so I came home replete and ready for a nap. John, apparently, had been napping most of the afternoon…

Bless him, Paul did a few jobs for us whilst John was otherwise engaged – either chatting or inspecting the back of his eyelids – and so I was delighted to come home to my long list and be able to cross some of the jobs off. Satisfying, isn’t it? Even if I hadn’t done the jobs myself!!

“What have we got planned for tomorrow?” John wanted to know. “No plans,” I replied. “Although Michael wondered if we’d like a visit from him and the boys whilst Danielle goes to the hairdressers for her birthday treat?” Oh, yes, please. John was definitely up for that!

So today was filled with lots of fun, cuddles, chuckles and riding up and downstairs on the stair lift. Thomas was feeling a lot better, although is still needing soft food and Calpol. Ice cream? Yes please! Rice pudding? Yes, please!

Oliver was his usual cheeky self, inspecting all of my cupboards and re-arranging the ornaments. He certainly wasn’t interested in the toys – unless Thomas was playing with them, of course!

The children had brought their wellies so, when it was time to walk up to the Post Office to post a letter, it was splash, splash wherever they could find a puddle. Just great fun.

After the family had gone home, we rested a bit; watched TV; chatted a bit and had our tea. John talked about all the other people that were in the house. Someone upstairs, tidying up; someone talking on the phone; someone standing just to his right. All lovely people and all imaginary. Ah…. the joys of morphine, eh?

We started watching the New Zealand vs Argentina rugby match this evening but gave up at half-time, realising that it was a foregone conclusion. But really, Argentina should be so pleased with their success at this World Cup – they’ve done really well. Just waiting for tomorrow’s slaughter now…..

Take care everyone. God bless. Halloween is on its way – got your pumpkins ready?

We had guests yesterday – Carol and John, and Pete and Dawn came round – which is just what John wanted. He did his best to keep up with the chatter and enjoyed the company, but both couples could see that he was struggling a bit with controlling his pain, so they left reasonably early – which left us to the task of pill-popping to try and ease the agony.

He was too tired and too much in pain to even show John B his Lotus. “Next time,” we said. “Next time.”

In addition to coping with guests, there was also an underlying anxiety all day. Thomas had had an accident on Monday and was nee-nawed to Walsgrave Hospital. It was one of those accidents that you fear may happen. Poor Thomas was absent-mindedly sucking on a pipe that was for building a tent, and had fallen. Consequently, his soft palate fell victim.

Surgery was called for yesterday morning which, naturally, made us all anxious, but it went OK and Thomas was discharged in the afternoon. Soup, jelly and ice-cream are now on the menu…..

After a very full-on few days, John wondered what our plans for today were. “We don’t have anything in the diary,” I said, “Let’s just relax and take it easy.” John agreed. He was feeling exhausted.

But ha! Relaxing and taking it easy is easier said than done. Despite an increase in the meds yesterday, John’s pain is still evident and so most of the day has been spent trying to sort out the right level of medication. A phone call to the Macmillan Nurse tomorrow, I think.

We opted out of the babysitting duties that we had scheduled for this evening as well as opting out of Quiz Night. John went to bed at half past eight. I’m hoping he gets a reasonable night’s sleep.

One bright moment in our day though, was an unexpected visitor at lunchtime. Andrew called in. He was driving back from London – via the Midlands to Wales – and thought he’d drop in, put a load of washing on, have a cuppa and a kip before setting off again. We had a little while with him, but he slept for much of the afternoon, having had a heavy weekend with fellow chefs in London, preparing a banquet at the Lords’ Cricket Ground yesterday. Perked John up a teeny bit.

And that’s us for now.

Take care everyone. God bless.