River of calm and kindness

A warm night and a poor night's sleep, although that may be from wearing my Fitbit too loosely to record any data that makes sense. Awake in time for Thought for the Day and a more complex routine of medication at breakfast time. The beta blockers add to the existing lethargic foggy head sensation, and slow my pulse. The leak from my nose wound continues to dry slowly and reassuringly, so the systolic pressure reduction remedy has worked.

Despite being more hard of hearing than I, Clare noticed the high pitched alarm sounding from the fridge freezer, which lost temperature overnight. Initially I didn't hear it due to my tinnitus being louder. Clare called British Gas services to arrange an emergency call out. Two hours after noticing it the alarm stopped. One tub of posh ice cream lost. It seems a bag of something in our over-packed freezer caught in the door seal, allowing the heat leak, and it was a hot night, 30C this morning. Fortunately the refrigeration unit worked. It wasn't broken, but took its time getting back down to 18C. Thankfully the pump  kept working and didn't overheat. Clare was able to call off a diagnostic visit, but we ended by signing up for a household maintenance package for emergency cover.

Half a morning, half asleep while Clare went shopping. I cooked Paella for lunch with the half defrosted pack of fish pie mix and used up the remains of a bag of Valencian rice from Mercadona from our trip to stay with Veronica a year ago. Another hot afternoon, languishing indoors, sleeping uncomfortably in my armchair, too lethargic to go upstairs to bed. 

Updating my cousin Dianne on course of events gave me an opportunity to reflect on the oft-commented emergency medical crisis - having been on the receiving end. A&E seems to surf on the edge of chaos, brilliantly fielding the new intake of suffering patients, facing logistic challenges, shifting them asap, which can be an excruciatingly long wait in noisy places. I was admitted at two in the morning parked in a kids' treatment room, missed by the half awake breakfast team. I got NHS cheese and ham sandwich packs instead at lunchtime. 

Shifted to a transfusion 'lounge' for a few hours, with several quite poorly people, then decanted to a surgical couch waiting room overnight - my first visit to this place was when I had my gall bladder out, six months before the stroke and a previous nose bleed. Then, up a few floors to the same day emergency surgery unit. That was where we had to evacuate a few hours later, due to a MRI scanner electrical fire in 32C heat. Once re-instated, getting back to recover any kind of sleep was continued torture - England v Norway football made staff and patients hyper and loud. But staff continued keeping an eye on patients anyway, enjoying the mildly festive moment. That was where I was for a couple of days until further surgery was avoided by introducing beta blockers to curb my high blood pressure reaction to a stressful environment, driving the nose bleed. 

Yes it was slow and unpleasant, losing so much sleep, yes there were times when the staff seemed a bit chaotic or communicating poorly, but the whole process worked, inevitably in fits and starts. Including random and planned moves. Hard to be on the receiving end when you can't attract attention, then get woken up from recovery sleep every four hours for a BP check. Time seems to stand still as you wait, but it resembles a river or a flood, lots of movement simultaneously, not always in the same direction.

A man of my age with verbal diarrhea, talked unstoppably with a teacher's voice for 18 hours. He was losing his home as he couldn't look after himself. The conversation with his night nurse was moving. She showed him such good humoured kindness and respect, even though he was irritating half a dozen others in the same ward. There was no other place to park his bed and keep an eye on him. A sacred moment, overhearing such a conversation.

Once I'd been stabilised and the nose pack removed, I was issued with a take home bag of medications and allowed to call for a taxi to take me home. Clare came for me. As I left the ward, the team on duty bade me farewell with smiles and looks of achievement on their faces, some of them I'd seen several times in the previous days. I wish I could have said more than a mere 'thank you' as I left. Patients arriving in A&E are likely to be in a mess physically if not emotionally due to accident, injury or illness. The treatment process carries them, finds them a safe place and starts them on the way to recovery with calm respectful words, maybe even a touch of humour. A river of calm and kindness flows through the hospital at every level. I wonder if we fully appreciate it?

A day spent inactive, inert, dozing, coming out of crisis mode, getting used to a new medication regimen. Maybe after more sleep my head fog will go away.

Crossed wires

Another day of waking up to an overcast sky and drizzle. Another poor night's sleep. I didn't feel well, with the stress of a hospital deadline to meet and the cardio monitor to return intact. A taxi took me to UHW after breakfast for this purpose. I was relieved to see the back of it. It was impossible to relax and feel at ease with the device strapped around my waist, demanding care when removing clothes to avoid dropping it and/or dislodging its sensors from my chest. 

On the return journey by bus, I had a call from the cardio unit telling me that I hadn't returned my monitor, and should have done yesterday. Well, yesterday, my diary had a note to expect a call from the consultant cardiologist which didn't happen. I think I was informed of this when I was in hospital. Then I was given the device fitting appointment last week, plus a letter for an appointment to return it today. Crossed wires? Not sure whether I was mistaken or the medics. As if that wasn't enough, I then called at the MSDEC ward reception desk to inquire about medication renewal and was told I'd been discharged back into the care of our GP. It's the first time for me to hear of this. Crossed wires again?

It took me an hour to return home by bus. Lunch was ready early as Clare mistook the hour to start cooking. It was most welcome anyway. Owain returned to Bristol after lunch. It was lovely to have his cheerful company and calm common sense when I got myself into a panic, which seems to happen if I'm tired and under stress. My brain sometimes doesn't work fast enough for me to cope with everything that lands on me in one go. I hope I will recover resilience as time goes by.

I visited the surgery to ask about my  post discharge treatment plan, and was given a GP appointment tomorrow morning. I then went to the shops to buy rye bread and some chicken legs to cook. Rachel called after supper and chatted to both of us in turn. She's looking forward to a home visit and has a flight booked to bring her over for New Year. She'll be staying for a fortnight, so we will celebrate Christmas en famille in the Eastern Orthodox way on January 6th.

Wired up

Up for breakfast at eight thirty. Phoned for a taxi at nine to take me to my 10.30 appointment at UHW MSDEC.  It came sooner than expected so I arrived there half an hour early. There seemed to be some confusion about a missed appointment, perhaps because I postponed one at the GP surgery yesterday, because of the appointment this morning. Maybe the system hadn't updated right across the network. Anyway, blood pressure check was satisfactory, and a blood sugar test proved normal. So relieved there was no diabetic reaction to the high level of stress on my circulation in recent weeks. My finger was pricked and a drop of blood sucked into a diagnostic chip attached to a digital device to produce a blood sugar reading instantly.

I was finished by midday with a two hour wait until my next appointment, to fit me wtih an ECG monitor to record my heart activity 24/7 for the next week with four electrodes attached to my chest. I had difficulty finding the place where this was to take place, as I had incorrectly copied the detailed location into my diary. It wasn't easy to find, and the instructions I was given didn't work for someone unfamiliar with the hospital layout and what directions I received referred to. I was so disorientated I had to ask a staff member to accompany me more than once, which made me feel old and pathetic. But I got there on time in the end.

The last time I had to wear a device in aid of diagnosis, it was a blood pressure monitor. It was quite an unpleasant experience. It went off at timed intervals, I wasn't sure if I was meant to just carry on with whatever I was doing, or stop and let the device take its soundings. I'm nor sure anyone really knew what I was supposed to do. With the ECG monitor it's a matter of keeping the electrodes attached and sweat free, and being careful not to get the monitor or the electrodes wet. I'm asked to make a note of sleep and wake up times and report any unusual symptoms, though it's not clearly explained what they want.

To get home, I took a bus to town and another from there to Pontcanna. It took three quarters of an hour to get from UHW to the city centre. The buses were unbearably noisy and jerky in rush hour traffic. I was glad to walk a circuit of Llandaff Fields before reaching home in time for my tea-time pills.

Owain called and told us about his holiday in Berlin, a city he's fond of. He did a deejay streaming session for an internet radio channel while he was there and spent time with Swiss ex-pat mates from school days. Hopefully, he'll be over to see us again in the coming week.

After supper, I watched a couple of episodes of a series called 'Borderlands' which features a couple of detectives, one from the RUC and the other from the Irish Gardai, who are obliged to work together on cross border crime with all the complications and tensions arising from different histories and jurisdictions in addition to their temperaments and personal histories. An interesting take on a divided Ireland post Good Friday Agreement and post Brexit.

And now to bed, to find out how I can organise myself to pass the night wired up.

Giving up the car after 55 years

A cool and cloudy day. Woke up just after eight. Weeping from my repaired nostril has dried up. This is reassuring, in the light of the clot busting meds I'm taking! I just have to be very careful not to avoid any anxiety or effort that will cause blood to go to my head. Not easy for me. I've been driven with a tendency to be over active for many years, taking advantage of good health and fitness. All is now up for review.

Listened to an excellent 'Thought for the Day' about how our legal system works, and how it reflects the diverse cultural origins of our language, then got up for pills and breakfast. While I was eating I had a briefing call from Callum at Occupational Therapy where we talked about what I can and can't do, and need help with, to facilitate rehab. My recourse to past learning from Chi Gung and Alexander technique when I was admitted to the stroke emergency ward enabled me to walk steadily and safely, aware of co-ordination blips, I understand how important Tai Chi is going to be to regaining full confident movement, so I'll soon be engaged in a class with a group of other stroke patients. I also had a clarifying email from King's Road surgery, setting my mind at rest about Blood Pressure checks.

Trump and his team have exerted enough pressure on Israel and Hamas to agree a cease fire and follow up plan which will secure the release of hostages and hostage bodies and the release of 250 Palestinian prisoners in Israeli jails and 1,700 detainees from the Gaza offensive. Further negotiations are pending in the disarmament of Hamas and withdrawal of Israeli troops from Gaza. A surge of humanitarian aid is now expected into Gaza where a state of famine has existed for several weeks. Will this cruel nightmare now come to an end at last? I hope and pray it will.

We've discussed getting rid of the car for the past year. Even slight visual impairment is enough for me to give up driving after 55 years as a motorist. I no longer enjoy driving, it's too demanding and stressful, and Clare's glaucoma prevents her from seeing well enough to drive. We must let go of our dear VW Polo which has my initials in its registration plate. Given that it's nineteen years old, and would no longer be acceptable as a legal road vehicle a few years from now, despite being sound and reliable, its scrap value is only £50. I phoned NG motors who sold it to us and they have agreed to take it away and hopefully find a new owner for it, perhaps a learner driver, who will be able to get a few more years of use from it before it is no longer legally usable on the road. One of the team will collect it and do the admin in a few days from now.

I needed a snooze after lunch to clear my head. Then I got dressed and went out with Clare for a walk. We got separated when I stopped to send a message from Owain and chat to Nick from church who stopped to ask me how I was recovering, and I couldn't spot her anywhere. She was OK and walked home separately from me, but I found it distressing to lose track of her. I went to the top of Llandaff Fields and back. Joints are a bit stiff but warmed up as long as I kept a steady pace and didn't push myself. It wasn't exhausting. The fresh air and exercise did me good. I feel walking benefits my blood circulation. It reduces tingling in my left hand, which is I think a tell-tale stroke symptom in my case.

Owain called MSDEC and got some information about what it means to be a 'virtual ward' patient. I have an appointment there in a week's time at UHW to measure blood pressure and a meeting with the cardio consultant for a briefing and a heart monitor fitting. Heaven knows what this is all about and where it leads. Owain left us at tea time. We won't see him for a while as he's off for a week's respite in Berlin's techno community. It's been marvellous having him here for a few days. Clare and I are back on our own this evening. We're both holding our own, not getting worse, maybe improving a little, conscious there are friends and family close at hand whom we can phone if we need to.

Day of medical business

I woke up to a lovely September day after a night punctuated with getting up for a pee as ever. Increased heart rate is a consequence of this. It does slow to a normal rate with conscious relaxed deep breathing. I have to accept being awake until I'm ready to drop off again. The heart murmur is more perceptible now and its pace is a key factor in dropping off. 

Up at eight for breakfast and pills. Owain brought the booster doxazosin prescription labelling the boxed, altered the phone alerts, securing the routine structure of medication consumption to suit. There's a note to be passed on to the GP about repeat prescriptions. I have a blood pressure check  appointment later when I can deliver it.

I received an appointment letter from the cardiology  unit about fitting a heart monitor to help them work out what else is happening over a period of time to inform their diagnosis of what other treatment may be needed. The leaky heart valve is known about, but there are other things they need to know which the data can help diagnose. It's on the 22nd October at UHW. Also a Covid booster jab appointment letter. I didn't know what impact  the jab would have on my meds and my present condition and needed to ask.

Iona called in to see us. We realised that we now have two spare WNO tickets for Saturday's performance of ’Tosca' which Ann and I won't be able to use. At this stage it's too much sensory input to process I may not be able to cope with, and sister-in-law Ann is not coming now. Iona will take one and our dear friend Chris will take the other and accompany Clare. 

Owain accompanied me to the surgery for the checkup. I'm pleased to find I'm steady on my feet walking, though the visual blackspots demand caution. My 'proprioception' aka physical sense of self is improving thankfully. The fine autumn weather is a pleasant consolation. The practice nurse was able to help Owain to establish exactly what will happen on my next visit on the 30th to the Medical Same Day Emergency Care unit 'virtual ward' for a a blood test and an echo cardiogram. It's referred to by its acronym MSDEC.

By the time we got home, mission accomplished, the Covid clinic admin had shut down, so I emailed for advice, pleased to find that I could without too many errors to correct. I exchanged messages with Sion to update him, and chatted with Ann who did some shopping for Clare and is arranging to pop in and check us out while Owain is away. He's returning to Bristol for the weekend and to relax. Working from home in a house of ailing people sifting through and ordering the chaos in domestic life generated by my stroke. It has been stressful for him. He needs to decompress. He's been wonderful trouble shooting and keeping us informed these past few days. His professional discipline is admirable.

Clare cooked us veg for supper, with boiled eggs for her and a can of sardines for me. The two of us sat quietly in the lounge afterwards, with me writing and Clare reading until it was time for bed. 

A lot has gone on today. I think I am improving in perception and co-ordination. Less exhausted today and with reasonable concentration and mental stamina, but needing to rest my senses and let my mind process input. Less slow? Maybe. Have I been cured of hastiness and impatience? Time will tell. By God's grace I am at peace within, and able pray, the Jesus Prayer and the Ave surprisingly enough, in affection rather than desperate angst. A lovely gift.