Poor communication

Overcast today. I slept fairly well, but I didn't feel refreshed on waking up and felt unwell after taking the meds, which clouded my head and left me feeling drowsy for most of the day. There was a missed phone call from British Gas Home Care and an email flagging up the cancellation of our direct debit, notifying us of cancellation fees. Our bank account shows a cancellation fee has been taken. We are still waiting for the confirmation of that cancellation. Two weeks ago I wrote to British Gas customer services to notify them of the cancellation of our direct debit, but had no acknowledgement. This is distressing and not easy to cope with when I'm feeling unwell. I emailed a copy of the letter to a customer services address with a request for clarification about what I owe now. Looking back, engaging in the contract happened rather too smoothly and easily for me to question at the time. Or maybe the problem is that I can't think fast enough there days to take in all the details.

Then I had a notification from the NHS app to say I've been removed from the 'Rehabilitation Medicine' waiting list I was informed I'm on last week, with no idea of why I'd been put on that list to start with. Having to approach the GP surgery staff to ask for clarification can be pretty futile. The medics make the referral and may not be available to ask without the hassle of booking an appointment and wasting their time. In my spam folder I found a dodgy email purporting to come from NHS app administrators. Either Android or Chrome OS is leaking information to third party crook somewhere in cyberspace.

Posters for the next Sonrisa Arts 'Dance in the Dark' tour arrived in the post, for us to put up in the church hall, on Chapter's community noticeboard, and Canton library children's section. After lunch I went to the library and asked if I could put up a poster. I was disconcerted and disappointed to be denied permission as the poster isn't bi-lingual. Considering it's a dance performance with sound and movement, without speech I thought this was mean spirited, even if it is compliant to the letter of the law. Clare is thinking about how she can modify the poster to make it bi-lingual. If it had been thought about and prepared from scratch, the cost of translation, design and production would be prohibitive on a modest budget.

After this set-back I went out to buy veggies. By that time both local greengrocers were closed, so I went and bought what we needed in Tesco's instead. After supper I walked up and down Llandaff Fields for three quarters of an hour at sunset, dark by eight o'clock. At last my head is clear after a miserable foggy brain day. Bed beckons.

LPA dispatched

Going to bed earlier didn't make any difference to the amount of sleep I got - less than I really need. I felt unwell in addition. I needed to drink more water than usual. Despite my daily effort to drink sufficiently, it never seems to be enough. Dehydration creeps in due to the diuretic effect of medication and it takes a few hours for the ill effects to disappear after drinking a litre.

When Clare went for her hairdo with Chris yesterday, she took with her my Lasting Power of Attorney application document for him to sign. His signature was the last one to be added before I sign and date it. As we've not seen him for a while the application neared its time expiry date, and I received a chase-up reminder to get on with the job. After breakfast I did the signing and then took the two documents to the Post Office. They cost twenty one pounds first class recorded delivery. I just hope there are no un-noticed errors in them.

A message arrived on the NHS app to say that I'm now on a General Surgery waiting list. It informed me that the average wait time for a consultation is ten weeks and that ten per cent of people waiting have to wait twenty nine weeks. For treatment, the wait is twenty one weeks and that ten percent of people have to wait seventy one weeks! 

After preparing and eating lunch I went to Jason's greengrocer's to stock up on veg, still in a drowsy toxic haze, feeling as if I am sleepwalking. It's not good for confidence when walking outdoors. Another NHS app message arrived offering a consultation on 9th November, nine weeks from now. And that's the result of an 'urgent' referral. As for nursing support for the bum boil, forget it. Fortunately the wound is behaving healthily so far. A general surgery examination and scan might identify vulnerability in a wound scar that can be dealt with, or lead to some infection preventative measure.

We walked together in Llandaff Fields for half an hour before supper, then watched a documentary on iPlayer about jazz creative genius Miles Davis called 'Birth of the Cool', the title of his first record album. Listening to tracks accompanying the storytelling took me back to being sixteen again and hearing this new music for the first time on scoutmaster Penry Jones's record player. Marvellous memories.

Kafkaesque NHS

It rained during the night, with a drop in temperature and an increase in humidity enough to wake me up feeling slightly chilled. I put on a warm dressing gown but didn't sleep well thereafter and felt tired all day. A wet overcast day. Each time there's been a torrential downpour lately water has been overshooting the gutter and running down the wall outside the kitchen window. The gutter along the edge of the roof was set too close to the edge of the  bottom tile - possibly a consequence of the re-roofing job done a few years ago. The gutter needed re-aligning in relation to the tiles and set at a different gradient to improve water run-off. It's become more noticeable with the increase of extreme weather events this past year or so. Clare arranged for a visit from a guttering specialist. A morning's work in persistent drizzle for two men - £400. I stayed in with her while the job was being done and missed the Wednesday Eucharist at St Catherine's. We won't know how successful the adjustment made to the guttering will be until there's another torrential downpour.

After lunch I set out on foot for an acupuncture appointment at Parkwood Clinic feeling very lethargic and stiff, so I took the bus from the stop opposite the Half Way pub. The treatment boosted my energy enough for me to walk over the Riverside clinic on my way back home, to check with a wound treatment nurse if my referral for treatment had been received. That was how I learned the district nurses' treatment room is now at St David's hospital. The receptionist gave me the phone number for the district nurse 'hub' which I called when I got home. 

I wasn't able to find out if I'd been referred for treatment, or when I would hear about an appointment. I was advised to call the GP surgery which I did. The receptionist was unable to help as Dr Mullaney, who made the 'urgent' referral, wasn't on duty to ask. All I know from the app is that I'm on a 'Rehabilitation Medicine' waiting list, whatever that is, but no information is communicated about how long the queue is, or what it leads to. It's like being inside a novel by Kafka. It seems the left hand of NHS services doesn't know what the right hand is doing. Just as well the wound seems to be drying out and isn't inflamed at the moment.

The drizzling rain eased off mid afternoon. I walked up and down Llandaff Fields for an hour before supper to clear my head and complete my daily step quota, despite physical tiredness. Without the acupuncture treatment I wouldn't have been able to summon the effort. Bed even earlier tonight.

NHS digtal shambles

A fairly good night's sleep, waking up to a cloudy sky and the prospect of rain again. I waited twenty minutes in the GP surgery telephone queue to get an appointment this afternoon for a wound inspection and referral to the Riverside clinic. I'd like to relieve Clare of the daily pressure of looking after something I can't take care of on my own.

The NHS app sent me a text message notification about messages awaiting me, so I logged in to my phone account and found half a dozen notifications from a six month period informing me that I was being sent a 'letter' about appointments with different specialist consultancies, with with insufficient detail about who I was meant to see in the specified department, be it cardiology or rehab. None of these corresponded with any letter I have received in the mail, although a couple of SMS notifications requesting confirmation of attendance did correspond. The latest notification relates to the appointment requested at Riverside wound clinic earlier this morning, except that I was told when I called the surgery earlier that the GP would have to authorise it. As I had an appointment this afternoon, I assumed it would be dealt with there and then. 

I don't know why, but after lunch the medication made me light headed and drowsy. I felt uncomfortably as if I was sleepwalking my way to the surgery to be examined by Dr Mullaney. She reassured me the buttock wound was behaving and that I wouldn't need more antibiotics. She then proceeded to flag up a visit to the wound clinic as 'urgent'

While waiting to be seen, I asked the receptionist about 'letter' notifications received on the NHS app and was told letters aren't being mailed out but sent electronically. Not that recipients have been informed of what to expect! I tried to log in on my phone to show messages received and the app refused to open in the surgery! I admit that the stroke and the meds I take mess cause my memory to work erratically at times, but the level of confusion generated by chaotic communication from the NHS is enough to make me think I have 'mental health issues'. I said this to Dr Mullaney. She smiled, with a look of resignation. I felt better for getting this off my chest I must admit.

After supper I walked up and down Llandaff Fields just after sunset under an overcast sky as it was getting dark. Then I joined Clare watching David Attenborough reminiscing and reflecting on his pioneering wildlife documentary series 'Life on Earth'. What a remarkable historic contribution to broadcasting he and his colleagues have made over the past half century, spanning the era in which colour television evolved from being a technical experiment to the default medium, making the innovative series even more attractive to watch from the outset.

A thousand people are now confirmed dead after the flash floods in the Nepalese Himalayas and 4,400 are still missing, whole villages wiped off the map. 900 school children were spared thanks to a timely alert from a staff member of a river of mud and debris sweeping down the valley destroying everything in its path. Hundreds of workers are trapped in tunnels belonging to a hydroelectric construction project buried by mud. How many glaciated landscapes around the world are now unstable because of global warming driving inhabitants down to lower safer altitudes? Together with eventual sea level rise, this reduces the area of land which earth's population can occupy with unforeseen economic and social consequences.

Bank holiday nightmare

I was in bed by 11:30 pm, but up again just after midnight with a nose bleed, despite taking precautions to avoid lying awkwardly. It didn't last long and I was able to avoid making a mess, but thereafter dozed the rest of the night sleeping propped up with a bucket by my side, after taking a beta blocker. The wound in my left nostril that caused the previous bleed the day before yesterday was starting to dry out so I thought. Was it a blood pressure surge, or an awkward move that triggered this one? Somehow I slept fairly well. nearly seven hours.

After a lull in the fighting, during which Trump announced heavy economic sanctions against Iran, hostilities have resumed with America targeting Iranian mine laying activities in the Straight of Hormuz and Iran firing missiles at US bases in Jordan and the United Arab Emirates. Iran promises to escalate the conflict further while calling for a return to the agreed terms of the Memorandum of Understanding signed in June.

I realised when I woke up that today is a Bank Holiday. It wasn't clear if the GP surgery was open to have the bum wound checked or get another prescription if needed, and get the nostril wound checked out. I want to ask for a referral to the Riverside wound clinic.  I called the NHS 111 for advice and a robot call handler said I was 87th in the queue. Information googled said the surgery was open. I went there after lunch. A notice on the door said it was open, but the door was locked. When I rattled the door a voice within said the surgery was closed. I went home and packed a bag with all I needed for a visit to A&E at UHW. Not that I wanted to return there after my previous dreadful experience. If I take a turn for the worse, at least I'm ready to go.

I was bothered to find I've almost run out of sterile wound dressing swabs. There's nowhere open to buy them today. To my relief a rummage through the medicine cabinet produced several unopened packs which have been there for the past six years. We can manage now until tomorrow when I will get an opportunity to see a doctor. Without Clare I couldn't manage at all, being unable to see what's happening in my nether region. Come to think of it, I don't remember how I looked after the surgical wound when I was on my own in Ibiza back in 2020, but I know how indebted I was to the Riverside wound clinic nurses during recovery from surgery.

It's getting dark noticeably earlier now. Early bed for both of us tonight

Tax return submitted at last

 A fairly good night's sleep, accompanied by the sound of heavy rainfall in the night and early morning. I went on my own to the Eucharist at St Catherine's, Clare and Owain went for a walk and a coffee avoiding the showers. When I returned from church Owain sat with me while I filled in my tax return, a task and a worry for me that's been outstanding since before I had the stroke. 

Up to that point I'd prepared the various figures and had them all written down in a special book. In the weeks after discharge from A&E I made a mess of logging in to my Government Gateway account and was locked out of it, when I couldn't provide correct details over the phone. Owain found the address and some weeks later I was put in contact with a most helpful man in Newcastle who talked me through reinstating the account. I had lost my nerve at that point regarding digital interactions to do with anything financial, and did nothing until the trauma receded to the point where my confidence and calm returned. 

With Owain at my side I logged into the HMRC web site, and into my bank account too, without needing any prompts. I hadn't forgotten anything. Both sites looked and operated the way I remembered them. The best part was having Owain talk me through the process like a tour guide - insightful and helpful. I don't think he needs to make a self assessment tax declaration as he's on PAYE, using the HMRC's own system, but familiarising himself with the self-assessment tax declaration was a useful exercise for him en passant It was interesting to hear his evaluation of the content and its delivery of information on the opening page of the form. Content design is what he does at work. After submitting the tax return, he added a comment on the feedback page noting a specific issue of user friendliness which he thought could easily be improved.

I was so relieved to have done this at last eleven months after starting on it, and so grateful to benefit from my son's professional expertise and calmness, enabling me to get up to date with my civic obligations. It's a small, less obvious aspect of stroke recovery that makes a difference. Admittedly my head was pretty clear and my focus was sharp while we worked together either side of eating lunch. It didn't prevent me from forgetting to take my lunchtime antibiotic. I'm still prone to distraction.

Owain left by taxi us to visit a friend after lunch. There was a cloudburst just after, and we noticed a large volume of water running down the wall outside of the kitchen window, but we couldn't figure out at what point in the roof guttering it was coming from. The gutter didn't appear to be broken or leaking. A close range inspection is needed.

After the rain stopped, Clare went out for a walk and I followed her twenty minutes later, but didn't walk for long due to drizzling rain. It rained for the rest of the evening so I didn't go out again. We had supper then I watched another episode of 'Ludwig' until it was time to get ready for bed. I finish the antibiotics tonight and need to see a GP tomorrow for an assessment of whether the buttock wound is healing as intended.

Unexpected bleeding

I was in bed by half past eleven last night, and woke up with a light nose bleed at ten past one. Exactly the same time as I woke up with the last bleed that put me in hospital. This time it stopped after taking a beta blocker tablet. My sleep quality was poor thereafter, and I was up at six thirty to the sound of heavy rain, to take my antibiotic. Up at nine for a pancake breakfast, during which my nose started to bleed again. 

A vein in my left nostril that burst before burst again. I sat in my armchair for more than an hour pressing on a vein in the bridge of the nose until it stopped and then fell asleep for half an hour, having taken another beta blocker. I think this works by reducing adrenalin, which in turn inhibits the volatility of blood pressure. The past five days of bum infection and keeping on track with antibiotics, (which thankfully are taking effect) I have been on the alert all the time, taking the meds punctually and with Clare's help keeping the wound safe and clean. It's been stressful to say the least, so no wonder excess adrenalin, and physical exhaustion have given me blood pressure problems and nose bleeds. 

I spent the morning and part of the afternoon resting, unable to do much trying to catch up on as much lost sleep as possible. There was little else I could do. Having rested enough to go to the shops, I got up out of my arm chair and was shocked to find blood dripping down my trouser leg. The boil on my buttock had torn open under pressure while I slept. What a mess to clear up!  Just then Clare returned from a walk, ministered first aid and got the wound stable. Strangely, it's less inflamed and sore now. It was a shocking experience, so unexpected. Eventually I walked to the shops and bought some sterile swabs from Boots and a bunch of carnation buds for Clare from Tesco's.

Owain arrived in the afternoon. He's staying the night and seeing friends tomorrow afternoon. We watched an episode of 'Ludwig' together - a detective drama series featuring an autistic puzzle setting expert whose eccentricities are part of the plot's situation comedy. The logic puzzles at the centre of the story move so fast I can't always follow them. Amusing but also irritating.