LalaDom.world

2.30 am Saturday 18th September 2021

To get through this awful time I’d better find a counsellor or write more regularly. There’s always MacMillan…
John waited 25 days in Oldham Royal for a bed in Mcr Royal Infirmary for heart bypass surgery. A five hour operation completed last Monday 13th September. Surgeon was Saleem Jahangir and he’s been in ICU for six days now – and unable to stand without support. Confusion – common after heart surgery. Not engaging in dialogue. Not eating and with a feeding tube. Has had a CT scan yesterday and neurosurgeon report says it’s all fine – brain clear. But tonight he’s on strong antibiotics for possible infection in sternum. Cultures from blood and urine have gone for forensic examination. An MRI scan yesterday was not completed because John became agitated and moved about. So this evening he was sedated and taken again to MRI scan. This time completed. So results tomorrow re brain tissues and evidence of mini or full stroke.
It is so difficult not being able to visit and be with him. The phone calls tell me more if I’m lucky enough to get a doctor – Dr. Ahmed today, Dr. Hind yesterday. Have been able to talk briefly with John this morning – he knows me and is responding, eg Ella’s haircut, Mary’s operation and repeating “Bye bye” (like Geoff) – and recognises songs I sing to him. Not able to speak to him tonight as he was still sedated.

Hinnie is amazing – working, caring for bairns and alongside me. It must be so hard for her. I’m just so grateful for her kindness and love.

Nell has been working since Tuesday and we might see her on Sunday, tomorrow, I think.

Having trouble sleeping tonight. Did you guess?

It’s a funny thing, but having lost two of my beloved children, the fear in the back of my mind has been that I might lose another child…

Now I find myself afraid that I might lose John. I keep willing him invisibly to come round and find his place in the world again. I can’t bear to think of him in pain or having visual problems.

10.45pm Saturday 18th September

Today has been very hard for Hinnie and I and she’s been with me with the bairns all day. This morning Dr Ahmed phoned to say the MRI scan shows that John has had an embolic stroke post operation and has been referred to the Stroke Unit in MRI. Neurologist will make an assessment of his condition on Monday – not working at weekend. High temperature 38 and on antibiotics. Bloods results do not show sepsis but could be another infection… Body observations stable, but John not speaking. Tonight Delle (nurse), encouraged him to speak to me at 7.30pm, but only throat noises before he fell asleep again. See what tomorrow brings…

Not much sleep last night but will try harder this evening. Writing this with John’s pencil. I can’t bear the thought of him being in pain and me not near him. Also I worry that he can hear and understand it all, but not respond.

He nods at Delle. Tomorrow can’t come quickly enough.

4am Monday 20th September

Four in the morning. Tried to get through to say goodnight to John last night, but got cut off while they were looking for a mobile phone – so called it a day. He’s been sleeping all day and even physios don’t want to stress him with movement.

Breakfast in Chiquitos with Hin and Noni and bairns was lovely – then we went to watch Eric drumming with Jubicana and lovely to have Nell with us. She has two days off, so coming tomorrow as well.

My bloods at twelve today and hope to hear more from the neurologist about John. Chris and Susan visited last night – a sad half hour, but good to see them.The house phone rings alot but I leave it – coping with mobile is enough. It’s very hard to talk to people – alot of fragility at the moment. Maybe a quiet few days will be good until we can see the way forward…I’ll try to get a few more hours sleep now…

A quiet day – not able to speak to John. Rang hospital before bed to ask for neurology feedback and told doctor was with patients but they would ring me back. Waited til midnight.

Doctors are busy people, with people.

Tuesday 21st September

I phoned at 9am – lines busy, but asked to speak to doctor. Dr. Md. Qureshi said Dr. Thomas and Stroke team can see improvement and current medications to continue. Couldn’t speak to John as he was being changed.

Rang at 9.40ish and was able to say good morning and listen to John telling me about colours he could see, window, sitting up in bed etc. Couldn’t wait to tell Hin in the afternoon. (We sang ‘Daisy, Daisy…’)

We rang at 2pmish and Hin was able to talk to her Dad about his day – visitors – physios and occupational therapist – ultrasound – hoist with chair, ‘like a throne’.

Hin was deeply moved and in tears of joy. “It’s a miracle!”

I remember saying that to Myles when Dom woke from his coma.

Dr said if progress continues John might be moved from ICU to another ward from Thursday on. Then I can visit!!

I rang to say goodnight and sang ‘I’ll see you in my dreams’. John asked if I’d like to say goodnight to Gina, his nurse, which I did. She was pleased he knew her name and the doctor’s name – said he’s doing well.

4.30am Wednesday 22nd September

Bins day – have just made a cuppa and got biscuits. Hin’s coming to Claraland to work today. Bit of shopping around 3 pm after her walk with David.

Andrew is back to hospital having his chest drained again – fluid from op is causing pain. Sending love to John when iIsaid goodnight to him. What a blessing Dan is to Les and Andrew!

Gonna drink my tea and sleep some more.

In the late morning I was invited to go in and visit John as he has been in ICU for ten days. Hinnie drove me in at 2pm and I spent an hour in ICU with John and able to talk with Paul, an ICU Advanced Practitioner…

He described the stroke as ‘multi-focal’ at the front of the brain, so motor function is not affected. They cannot tell at this stage what the cognitive impact will be. Care plan is to move John to a cardiac ward and physios will continue physical therapy. Then find a bed in a Neural Unit (Rochdale, Trafford, Stockport…) for rehabilitation. He warned me to think in terms of six months to one year recovery period.

John was unresponsive to me but introduced me to his nurse. He was completely preoccupied with all the nursing interventions happening in his body and tried to pull them out and to get out of bed, when Paul came to talk. He was included by Paul in the conversation, but not able to sit up without support.

He said “I want to go home. Leigh will look after me. Have you got some money? Can you pay for the car park?”

Clearly anxious about home and family. He still has feeding tube, catheter and bag and antibiotics, but is breathing for himself. He was changed and made comfy before I left – has excellent care.

3am Thursday 24th September

I couldn’t get through to ICU in the early morning call and was asked to ring later. Had a phone call from ICU saying John had been moved to Cardiac Surgery Ward 4 and to ring there.

Charlotte said he was asleep, had been confused and she was catching up with his notes. She explained visiting: 2 – 5pm or 6 – 8pm and only one person by arrangement with the ward in advance. Told her I would come at the weekend.

4am Friday 25th September

I’m looking forward to going to IKEA tomorrow with Hinnie for breakfast and gather a few things I need. I’ll phone to book a visit to John on Sunday afternoon. Better get some more sleep…

Sunday 26th September

Chris is 48 today. He liked his book and chocolate.

Nell came and we went to Lidl, then to Morrisons for lunch. We had a walk in the park. Not able to speak to John because doctors using the phones, but they said he was settled and in no pain. Took Nell home and phoned hospital again. Able to speak to John. He can see a window, but not through it. Wanted to know if I’m ok and said it was lovely to hear my voice. He seems more calm. Told him I’ll ring tomorrow.

4.30am Wedenesday 29th September

I seem to have lost two days – or two nights. It’s 4.30am and yesterday we were asked to visit you in Fairfield Hospital, Bury, John.

Hinnie was allowed to come with me and your consultant Clim Jolly – (how you’d like him!), told us all that’s going on inside you.

So now you’re on Life Support and they’re trying to find the infection that’s shocking your heart into arrest. Hopefully they’ll find an answer and a drug.

So there you were, fast asleep in your private coma – and we talked to you -no doubt you were listening.  Your sweet nurse is Alison x.

2.30am Friday October 1st

Here we are then, two and a half hours into October – rabbits! Would you believe it? Nearly the Celtic New Year again.

And yesterday John, because you didn’t wake when they reduced the sedation, they transferred you to Salford Royal hospital – where there are 17 ICU beds and 14 consultants – and hopefully you’ll have more time to wake.

Hinnie and I are absolutely exhausted. We wake with dread. Now nearly seven weeks since you were home. We can come to visit you from 5 – 6pm this evening, so we’ll do that – and on the way call in to Ward 4 in Mcr Royal to collect your valuables.

Chow is driving up today – just for the weekend, so he’ll be at Claraland when we get back from visiting you. Sid and the 1973 gang send love to you x.

1.10am Monday October 4th

Chow left for Plymouth at 7.30am. It was so good to have him with us for the weekend.

A rollercoaster of a weekend – one visit where the doctor (Dan), was hoping to take the ventilator out on Saturday 2nd Oct – then Sunday, where there is no change and your blood pressure and heart rate are rising as the sedation is lowered. So you’re still on the ventilator and responding less – but I know you can hear me – “Bring me sunshine, in your smile…”

Then Hin and I visited from 5 – 6pm this evening and Dr Jackie and nurse Emily took us for the chat in the Relations room. Jackie said the medical team have ‘reached the ceiling in the range of life support’ they can offer you. She’s anxious about the weakness on the left of the heart and difficulty to pump blood with high blood pressure. Also the failure of brain, lungs and kidneys and the stress caused to you as they lower sedation. So they are ‘weaning’ you off the sedation to lessen distress and have decided to leave ventilator in.

We listened and told them about Ria and what we had learned already. Dr Jackie said it would be  a few visits away that the medical team would make their report on the way ahead. Cardiologist and Stroke team visiting you tomorrow. You look comfortable and very still. Emily is taking your wedding ring off. x

2.15am Tuesday

Nell and I visited you together and met your nurses, Vikki and Mischa. We were amazed to see the ventilator had been removed and you were opening your eyes. Your blood pressure is stable and you have some oxygen support.

Nell was able to hold your hand and talk to you. She slowly got used to being in ICU with all the beeps and pipes and technology. She told me she was so glad to visit you. We had a cuppa at home and a chat with Hin, before Nell went off to work at the Opera House.

Wednesday October 6th

Hinnie and I visited you at 11.45am – Vikki was with you. We found you sitting up in bed, eyes open – and when you saw us, you winked at us.

Your breathing is much more quiet and you’re managing your cough yourself. We held your hand and gave you news from home and love from all your family and friends. Vikki said you were responding to her – you stuck your tongue out at her!

Dr. Tony Thomas came to talk with us . He said the Stroke team had been to see you and as your heartbeat is regular with no sign of atrial fibrillation, you will be moved to the acute Stroke ward when there is a bed. He said you don’t need what Intensive Care offers any more – but we are so grateful to ICU – and I wish you could keep Vikki!

Hinnie played you some Beach Boys ‘Don’t Worry Baby’ and you were calm as you listened to it. Then you turned your head to see where it was coming from and looked at Hinnie’s phone in her hand. We were so moved and glad for you.

At 12.30pm we said goodbye and at 5.30pm Vikki rang to say you’d been moved to Stroke Ward B3 – a rehabilitation ward and that there will be an MRI scan. We’ll see tomorrow when we can visit.

Thursday 7th October 2021

Eric’s 10th birthday – I rang at 8.20 to say happy birthday and will see him this afternoon after school. Ella has got him a sausage dog cake!

At 10.15am I had a phone call from Salford Royal ward B3 to say your condition is rapidly deteriorating. Dr Jay Kwan asked us to come as quickly as possible.

We arrived about 11.15am and found you in a side room, deeply unconscious with heavy laboured breathing and oxygen support. Lisa, palliative nurse, explained that you were close to the end of life and we could stay. Robbie, your nurse, brought me  cup of coffee. Men were emptying bins outside.

Lisa left us to go and find the Chaplain and before long, Jennifer came. She asked us about you, read from Revelation…”…I, John…” and prayed with us – blessing you and telling you, “You are safe.”

Two women came later who said they were ‘cygnets’ – volunteers who would stay with you as needed. One of them recognised you and said she lived on Lacrosse Avenue in Coppice. The Royal Oak is her pub too! Small world…

We knew we had to leave at 1.30 to get back for Eric’s birthday tea and we knew you would want us to be with him. We said goodbye to you. We were driving home when Robbie, your nurse, rang to say you had taken your last breath at 2pm.

Tuesday October 18th 2021

Last Sunday Hin and I went to Jean O’Keeffe’s 80th birthday party in the Yorkshire Sculpture Park and I missed you terribly. Jean always loved to have you near.

Gary, Ant and Ben were so kind to us and glad to have us with them. Dougie was the perfect host – as he always is. It was lovely to see Jean – two years, my Besom, since we saw her. Hinnie loved meeting all the family.

Yesterday, after Hin’s work, we went into Oldham and saw Sonya, the solicitor. She was so warm and kind and clear on what she needs to do for us. She also suggested it would be a good idea for Hinnie to have Lasting Power of Attorney to handle our estate if I’m incapacitated – so we’ll work on that.

And last night we put the programme for your funeral together for printing. Sue Ward talked it  all through and will lead a non-religious ceremony as you wished.

Hin, Chris, Chow and I will speak and Nell will light your candle. The pallbearers will be Dave, Martin and their sons.

We’ve given the clothes you wore for Ria’s tree planting to Sarah Barlow – white and blue tee-shirts, jeans and linen shirt. Socks to keep your feet safe.

We have choir stalls in our garden
with jasmine curvilinear traceries and
wooden trusses for reliable support
when force is placed on them to keep
the roof of the sky in place.
The vault of eucalyptus is midday shade
and moonlit glisten with its
discontinuous ridge rib and one central
support to the natural intricacies in
cloisters of hawthorn.

Priceless treasures drift above and below
the ground; wisteria, honeysuckle, clematis,
ashes, bulbs, seeds, leaves, ladybirds, bees, insects,
hoverflies, bumbles, butterflies and Ria’s sleeping imp.
Soon the buddleia spires and stinging nettle
will welcome Red Admirals to your Rose Window:
to Blue Moon, The Pilgrim, The Generous Gardener,
Simply the Best, The Fighting Temeraire,
Compassion, Dark Secret, Dublin Bay,
Paul’s Scarlet, Harlequin, Super Fairy and Dogrose.

No palm leaves, but strewn-blown rose petals
tread a carpet to gate or swing,
like the child in The Selfish Giant’s garden,
or like aisle to altar in this
Cathedral of a Garden, where blackbirds live.

The Minsteryard is store for wheelbarrow, sheds,
tools, pots, seedlings, hosepipe, stones and fountain,
where next door’s frog can visit.

John was asked by his GP to go to Oldham Royal hospital to have his heart checked at 10.45am on August 20th, 2021. He was told he needed a heart bypass operation and would be kept in Oldham hospital on preparatory medicine until a bed could be found in a heart specialist hospital. He waited for just over three weeks, when Hinnie, Nell and I could only see him for a brief chat in a corridor when dropping off clean clothes for him. No visits. On Sunday 12th August John phoned me to say he was waiting for an ambulance to take him to Manchester Royal Infirmary, where the surgeon and anaesthetist were waiting to prepare him for the operation the following morning.

Monday 13/9/21: Ward 3 – 0101 276 4142, by arrangement, 1 named visitor for one hour.
ICU – 0161 276 4544 – phone after 9 am daily, no visits.
1 pm: 20 mins ago taken into ICU. Please phone back in an hour, 2pm for update.
1.50 pm, Angela – sedated for 3/4 hour while warming up –

everything fine – no issues.

ring this evening before 8 pm

7.30pm Oge (day) – 7 pm off ventilator, breathing himself with oxygen, alert and relaxed. Vein from right leg used for coronary artery bypass.

Tuesday 14/9/21: 9am – had breakfast and got up to sit in chair, then back to

bed to rest, awake, on painkillers -‘feels spaced out’

Oge (day) – spoke to him and he sends love to everyone. Ring this afternoon.

2.30 pm – Oge – OK, up on chair, no lunch as a problem with swallowing –

opioids making him tired, but spoke to Hin and me.

7 pm – John: ate mash, feels nauseous, talked to him about my day. Sends love to everyone.

Wednesday 15/9/21: 9.15 am Della: Doing well, some oxygen support, sat in chair then back to bed. Drink of orange, sleeping.

3.50 pm Della: Woken up, orange drink, drains now out from chest, oxygen support likely to be off tomorrow. Probably stay ICU.

6.30 pm: Sleeping, ate some porridge, tiredness huge. Likely oxygen off tomorrow.

Tuesday 16/9/21 9.30 am – Dr. Hind: breakfast, pain well controlled with pain killers, drowsy, sitting in chair with small amount of oxygen – breathing exercises. Ring this afternoon and might be able to speak to him.

In ICU til weekend – happy about his stability.

2 pm – Dr Hind: Drowsy – not drinking or eating, trying to find out why. Head scan for mini strokes booked today and neuro will look at outcomes,

looking for possible area deprived of oxygen.

Possibly hormones lower? Bloods checking, BP and kidneys ok, the two blood vessels which were blocked are now working and heart is ok.

Limbs and head moving ok.

6.30 pm Louise: very drowsy, CT scan of head and neck done, results in hours, on feeding tube and drip. Woke John up to speak to us –

We sang American Pie and he sang two lines to Hin

Ain’t No Sunshine…Every little breeze

John repeated ‘Bye Bye’ ( as Geoff does, like Sooty) and said ‘See you soon’

Friday 17/9/21 -9.15 am: Rafi – Drs busy around John’s bed. Ring back in 20 minutes.

9.50 am Rafi: ward clerk today

Angela 1-1 nurse – Drowsy, more alert, remembered surgeon, Saleem Jahangir. stable BP, bloods show kidneys and urine fine. Needs time to wake, stands with support but not walking yet.CT scan later today via neurologist.

2.30 pm: Dr Ahmed – drowsy and a bit confused – not oriented to place MRI or time – known as delirium. Report in a few hours. Aware, conscious and all observations are stable. Delirium is a common side effect of being in ICU.

6.30 pm Rafi: John in scan now – ring in an hour.

7.30 pm Dr Ahmed: John agitated in scan and postponed this afternoon.

Scan rearranged, sedated slightly (30 mins ago) On antibiotics now as temperature went up this morning. Blood and urine cultures being examined for infection.

Nurse Julie: John asleep – not able to speak to him.

Saturday 18/9/21 9.00 am, Della – OK overnight, woke up, eyes opened – responded to Della with a nod and having a wash.

MRI results, doc will feed back if any issues, but doing rounds now, ring later.

2 pm, Dr Isa: when free will ring back re MRI plan. Very little change, sitting on side of bed with physios. No dialogue, passive but no reason to suspect visual issues.

18/9/21 2.45 pm Dr Isa – MRI result shows multiple small enfarcts in the brain which could be bypass related and stroke team referral made to neurology. Embolic stroke possibly as already on blood thinners. Same management in place, stable and no changes. Temperature high 38 and ongoing antibiotics. Bloods results establish not sepsis. Waiting for neurology assessment on Monday.

7.20 pm Della – doing well, sleepy, John listened to me and said I love you. Della gets nods from him and is sure he can see her.

Sunday 19/9/21 9.15 am – nurse busy with John, ring back in 20 minutes. 9.35 am – same

10 am Sister: drowsy and sleepy for 3 days. Being washed and referral made to Salford Royal neurology – ring later.

12.45 pm -John is listening and responded to me re dinner and garden and yes/no to questions. Responded to Andrew sends love with Yes.

“All these beautiful songs…”

Eric and drumming – ” Eee…”

“Bye bye Miss American Pie”

“Hiya…”

John has been sleeping and in bed all day today. Some positive moments this morning when he was able to respond briefly to Hinnie and I and to getting love from Andrew and hearing Eric’s voice. More news tomorrow.

6.30 pm Angela -physios not able to wake him to stand him up and John not alert enough to sit in chair. Nurse said no ward phone available.

20/9/21 9.20 am – ward mobile in use, ring back in 15 minutes.

9.40 am- Della – John is restless and wants to lie on the floor, then back to sleep. Still on feeding tube and small amount of oxygen. Dr Gureshi is on ward all day.

2.05 pm Dr Qureshi -first neurology assessment done today. Needs more time to wake for another assessment. Stroke causing drowsiness. John has been talking and giving his name. Antibiotics ongoing four days and settling infection risk

6.15 pm – Della – same, sleepy – she calls him but not waking and is asleep. Stroke team will return for assessment after first insignificant outcome.

9.15 pm Sister – hoping for him to wake in a couple of days for stroke team to come back for assessment.

Tuesday 21/9/21  9.15 am – Gina – Sleepy, eyes open.  Dr Ahmed – seems to be improving alot. Will ring back in a few hours after Stroke team. We spoke on phone –

“Good morning”

“Lovely to hear your voice”

“Gina”

“I can see a window and another window. Concrete. The light is on”

“Blue. Chalky blue, dark blue”

“It changes when the light goes out”

“A bit of yellow wall”

“Damp and cold”

(I said ‘Sweden colours, I’ll tell Andrew)

“Andrew…Sweden…”

(I sang ‘Daisy daisy’ and he finished lines..)

2.45 pm Oge – stable and ok, sitting up in bed and comfortable.

More conversation –

“Yeah, am sitting up on the bed”

“What is it?”

“Oge. She’s the one you spoke to”

(‘She’s lovely’)

“Yeah she is”

(‘and Gina’)

“Yeah we have spoken together”

(‘What can you see?’)

“I can see a bit of…looks a little bit misty light”

(‘Season of mists and…’)

“Mellow fruitfulness”

“Can you hear me alright?”

“Oh good”

“I might start coughing at some point”

“It’s just a bit difficult”

(‘I’ll sing you a song’)

“Yeah go on, I’m listening”

(‘I see your face, the summer kisses, the sunburnt hands I used to hold…’ D’you remember that one?’)

“Yes, vaguely…Who was it sung by?”

(‘It might be French, translated into English’)

“Oh yeah”

“Hinnie!” Hello…hiya”

“Can you hear me alright?”

“I’ve been trying to cough but it doesn’t work”

“I can see a longer building – it’s all concrete but it looks more like sandstone”

“It’s been quite a busy afternoon – a few differnet people today”

“Let me just get me cough going”

“Hello – a little better, Yes, I think so”

“Give them my love too”

“Are they alright?”

“Is it Friday in school?”

“Sorry, I’m getting mixed up”

“I’ve been trying to work out which day it is – in a diary”

“Let me think what happened today”

“A lady doctor saw me this afternoon”

“Physiotherapist – occupational”

“And she wanted to do a bit of a scan on my heart, rolling over on the bed – ultrasound”

“She might be Lorraine”

“She said my heart is ok”

“Later on I had two more people – occupational therapy to do with moving – chair like a throne”

“Special hoist and er, yeah, I did a bed wash”

“I don’t know, maybe it’s just before the operation”

“Ok – well, I can, that’s right, cos I went in the shower. I trimmed my hair”

“It was just to make sure the rest of my beard was trimmed right”

“Was that the 19th?”

“Oh yes, the 12th – Martin’s birthday”

“It’s really nice to talk to you”

“Lovely to hear you”

“Tara for now”

“Yeah”

“I couldn’t work out what happened…I think it was -“

(‘ You needed to rest for longer’)

7 pm Dr Thomas of Stroke Team had spoken to Dr Qureshi – on bloodthinners and usual medication. Orienting himself to time and place and can be moved to Stroke ward on Thursday if  progress continues.

7.15 pm Gina – I said goodnight to John and told him we’d been to Morrisons for tea with Eric and Ella. He’s looking forward to seeing them. He asked if I’d like to say goodbye to Gina and gave phone to her. I thanked her. She said he’s doing well and knows her name and Doctor’s name.

Wednesday 22/9/21 -10.40 am – please ring back in 20 minutes

11.50 am – please ring back in ten minutes

12 noon Jasmine – John is confused but settled

Ward Manager Julie Stone – as John has now been in ICU for ten days, I was invited to visit him today for one hour 2 – 3 or 3- 4. He is breathing without support, still has feeding tube and on antibiotics.

John knew me and introduced me to his nurse, although clearly anxious and preoccupied with the ICU paraphernalia supporting him, trying to remove pipes.

A talk with Paul, an ICU Advanced Practitioner confirmed the stroke was multi-focus at the front of the brain, with motor functions not affected, but it is not possible to know the cognitive impact. John will be moved to Cardiac Critical Care where physios will begin the stroke therapy needed. The Care Plan includes a further move to a neural unit in the future and this might mean a wait for a bed. The long-term prognosis is a six month recovery period. John was supported to sit on the bed near me and listened to Paul. He struggled with nurses and said ‘I want to go home. Leigh will take care of me.’ the nurses encouraged him to lie down and I kissed him and told him the doctors and nurses would take care of him . I gave him love from everyone and he sent love to you.

Thursday 23/9/21 9.20 am – Drs busy with John, please ring later.

10 am – phone line busy.

10.10 am – Doing well. Likely to go to Ward 3 today. Ring Caroline later to get ward phone number. and news.

3.15 pm – call at home fromMRI – John has been moved to Cardiac Critical Care in Ward 4

3.30 pm- Charlotte – John asleep, was confused ‘but he’ll be better now he’s out of ICU’

Visiting allowed 2pm – 5pm or 6pm – 8pm Ring ward to book in advance.

Friday 24/9/21 9.10 am Clare, no concerns, someone stays with him all the time at the moment in a sideroom. Loose stools and culture needs to show negative. Can visit 2-3 pm Sunday

3.10 pm – Connor, staff nurse – feeding tube checked for position in stomach via aspirate – fluid prescribed. Aspirate not possible. Xray done at 1 pm re MG tube placing – currently reviewing, then will start feeding again. Speech and language team will review for safe swallow and speaking on Monday.

Saturday 25/9/21 12 am – John taken by ambulance to Fairfield Hospital Bury and was speaking . Asked the ambulance crew how long he would be in Fairfield. Leah, sister – Acute Stroke Ward – John very confused, feeding and required 1-1 supervision. After capacity assessment has fluctuating capacity and now has capacity deprivation of liberty and wearing mittens to prevent removing of MG tube.

Ward 5, no visits at all. Phone to speak to John.

Phone Manager Emily on Monday to ask about visit. Phone again after 2pm

Sophia – John settled

MRI staff nurse phoned, please collect John’s valuables from MRI on Monday.

Sunday 26/9/21 John settled this morning – nurse on break so ring after 12

12.30 – Meds via MG tube, in side room because of infection

4.30pm I spoke to John. He knows where he is and is looking forward to when I can visit him. He checked with me that I know where Fairfield Hospital is. I do! Love to you all, more news tomorrow.

Monday 27/9/21 9.35 am Busy with meds, please ring later.

11.30 am Stacey – John has had a seizure but has recovered ok. He is tired. Monitoring him for more epileptic seizures. Speech and language will be at a later date.

2.30 pm – no reply

2,45 pm – rang but cut off twice.

Stacey – settled but temperature rise this morning. ECG OK and is more alert than when seizure happened. Emily, Ward Mgr will be in tomorrow morning.

6.30 pm Stacey – meds for John because of low sodium level, bloods results tomorrow. More alert and wants to speak. I told him about going for tea in Morrisons and he listened and responded.

Tuesday 28/9/21 ANSAPHONE call at home Please ring Ward 5.

7.45am – Robora – at 1 am John got very poorly and has been moved to ICU with infection. On oxygen and Xray done.

Ward clerk Dr Kineev – blood pressure high, got worse in ICU and John had a brief cardiac arrest but was resuscitated in five minutes. He is on ventilator and is sedated in an induced coma. Unstable but coping and very poorly.

10.15 am – Hinnie and I met Drs Jolly and Mahmoud and Alison, John’s nurse. Infection source might be in the lungs. ECG is fine, but there is a risk of organ failure as his kidney function is low but not in need of dialysis.All over support from ICU and they feel they need John to respond.

Wednesday 29/9/21 Theresa – no change overnight. No news of infection source and drs arranging a CT scan. Please ring later.

7.40pm line busy

8.10 pm John settled, slight improvement, bloods a bit better, still on ventilator, sedation reduced but no responses. Might reduce it further tomorrow. Chest and abdomen clear.

Thursday 30/9/21 Staff nurse asked me to give a password. Wuthering

John has been off sedation since 7.45 am, being washed and consultant wants to check if he’s waking. On ventilator and spontaneous movement from time to time. Monitoring BP meds and heart rate. Dr Baker and Dr Jolly. Ring again after lunch.

12.45 pm Lynn – Same situation. Not waking. John is on ventilator, sedated and with support for BP and heart rate.

After 24 hours John will be moved to ICU in Salford Royal – or could be within the hour. Just waiting for ambulance. Dr Climm Jolly said they’d tried to see if they could wake him, but no response.

3.30 pm John arrived in ICU at Salford Royal and is being settled in. Please ring later.

5.20 pm Ilias -John under sedation, doctors with him overnight and tomorrow. Visiting can be next of kin only – Hinnie and I, phone to book an hour.

Friday 1/10.21 – 2.30 pm Dr Anfal rang and our 5 to 6 pm visit has to be cancelled. John has been off sedation all day and is not waking. Is on antibiotics and chest drain for pneumonia. Kidney and bloods seem to be improving, but further brain scan needed to explore if any additional damage since last scan. Unable to visit today, but can visit tomorrow.

Saturday 2/10/21 12.30 pm Dr Dan and Virginia – no issues arising from recent brain scan. The antibiotics are correct for infection and ongoing checks being made on this three times daily. John is breathing for himself and no longer on blood pressure meds. Sedation was off from 9 am today and he’s trying to open his eyes. Dr is hoping to remove ventilator tube later today or tomorrow. We gave him your love and sang to him.

Sunday 2/10/21 1-2 pm Hinnie and I visited John. No signficant improvement as his blood pressure rose again yesterday evening and again this morning, so John is back on BP and heart meds. They are still lowering sedation, but John is making minimal response. His breathing still supported by ventilator. We gave him love from all.

Monday 4/10/21 Paula, bed 8, visited 5 – 6 pm and we spoke with Dr Jackie and nurse who told us the medical team had reached the limit of life support they can give John. Over the next few days the cardiologist, stroke team and multi=dis ICU team will examine his failing organs: brain, heart,, lungs and kidneys and we will get feedback in next few visits. John’s blood pressure and heart rate increase dangerously each time they reduce sedation and he is not responding. We arranged for Nell to visit with me tomorrow and gave him your love.

Tuesday 5/10/21 11.30 -12.30, Vikki –  Nell and I visited. No ventilator and oxygen levels are down. Cardio-respiratory team is monitoring and physiotherapy monitoring assessment of breathing. Blood pressure stable, legs moving, arms weaker, pressing my hand. More monitoring during the afternoon and we will get feedback. We sang to him and gave him your love.

Wednesday 6/10/21, 11.30 -12.30 Dr Thomas and Vikki – John is awake and alert after having the ventilator tube removed yesterday. The Stroke team have visited and as his heartbeat is regular and no sign of atrial infibrillation, it is likely he will be moved from ICU to the Critical stroke ward in the near future. Another MRI scan is planned to check again on the damage caused by the stroke. His breathing is supported minimally by oxygen and he is still fed via MG tube. His inability to swallow or speak will be central to stroke rehab work over the weeks ahead. The ICU consultant was clear that “we can’t predict the future…” and adverse reactions are always a possibility. Intensive care is not needed now and John will be equally well supported in the Stroke ward. God bless ICU. During our visit, he listened, watched, turned his head, winked, enjoyed the music we played and was looking and listening to everything going on around him. We don’t think he knew us. John is still waiting for a bed in the Stroke ward. We gave him your love.

Thursday 7/10/21  10.30am phone call from Jay Qwan, Stroke consultant with update after she was asked to see John urgently. Sepsis being treated with antibiotics, no speech and very poorly neurologically. MRI scan to see amount of brain injury not right to do when John is so poorly. New fever, very breathless New blood cultures taken, oxygen support. ICU cannot offer more life support. Please come in asap to ward B3 on ground floor.

Hinnie and I arrived at 11.45am and walked to B3 from main car park.Met Robbie, his nurse and Lisa, a palliative care nurse, who explained John is close to death and possibly not far from now. Jay Qwan, consultant who phoned us called in to see us. Lisa went to find the chaplain for us and we sat with John for an hour. Hinnie played John some music and the Chaplain came and talked with us. She said prayers and blessed John and said we could contact her at any time. Two ‘cygnets’ came – Janet and Lisa – palliative care volunteers. Janet lives near Clara St on Coppice and knows John from her pub, the Royal Oak. They stayed with John while we left…it was Eric’s birthday and we knew John would want us to go home for his party.

Robbie phoned us as we were driving home to say ‘John has taken his last breath’ – and to contact Robbie when we got home. He was preparing to wash and move John to the mortuary.

This is the update we sent out to his friends and family…

“With great sadness, we have to tell you that John died at 2 pm this afternoon, 7th October 2021.

We were called at 10.30am because his condition had deteriorated severely from the early hours and we were asked to visit as quickly as possible. He had a new fever and was very breathless, with a very poor neurological prognosis and no MRI scan had been possible. The consultant confirmed that there was no more that ICU could do and that John would remain in the Stroke ward.

We arrived at 11.45am and stayed close to him with love, music, and the comfort of Last Rites administered by the hospital chaplain. We left at 1.30 pm and were driving home when Robbie, his nurse, called us to say John had taken his last breath at 2 pm. We send you all our love and will be in touch later tomorrow.”

John’s funeral was arranged for 2.30pm on 28th October, 2021, at Hollinwood Crematorium, Oldham, according to the wishes he left.

John Cook – 16th March 1950 – 7th October 2021

We gather together

Welcome and Introduction by Sue

We light a candle

Hinnie reads

We remember and give thanks

Leigh speaks

Music

Chris speaks and reads

Hinnie speaks

Charlie speaks

Music

The Committal

Music

We move forward in Love

Music: Sibelius No. 4 Final Movement

Labi Siffre: It Must Be love

Buddy Holly: True Love Ways

Arturo Marquez – Danzon No. 2

Everyone is invited to join us for a drink and a bite to eat as we celebrate John’s life at The Victoria Hotel, Oldham.

Some things have ceased
to come along with me …
the Waiting Room
the Ventilation tubes
the Infusion lines
the Finger clip
the ICU machines
the Alarms
the Catheter bag
the Plastic aprons
the Lifting and Turning
the Mouth cleansing
the Pain in your Eyes
and in your Friends’ Faces.
But Kindness walks with me.
Sweet Nurses and the Sad
Consultant who couldn’t
meet my face to tell me and
the Wise Nurse who whispered
‘She’s watchng you.’

Holly-gathering in snow
we sank to our knees
and blew on our nails.
Fixing the swing and
rocking a cuppa.
Listening to choughs as
we smelled peat bogs burn.
Sunrise from your window,
Evening calls on your drive home
and your little hand in
seed trays or stringing night-time
lights amidst Sweet Peas and
Morning Glories, in blue pots.
Muj on the bench
in the sun
and You on the bench
in the sun.
Door open, kettle on,
laptop on, washing on.
Tickets for gigs,
Embroidery threads,
Reading glasses and books,
Camera and paintings.
Duvet cover and carpet lover
Secondhand rose and loving Carer.
Fatherless Child of mine
in Sweden jacket and red shoes
dancing the night away
in the hills.
Brown-eyed girl, I have never felt
so comforted, just stepping out
from Raja’s room.
Into his view, into our hills and
listening to the peace of
a summer’s morning with
schoolchildren’s voices on the air,
while blackberries ripen and
blackbirds and larks sing
above the window Lego box.

Uncurling my thoughts and
curling up to write that
there’s something comfy about you.
Well shod, brown shoes I remember
in Oldham Probation.
I was forty one and you, a listener,
with gentleness and an interest in
my Section 10 group doing English.
Your wall display of notes,
tracing the residential hike in
High Peak country,
telling it like it is.
Seventy eight now and watching a
Poet Laureate who feels like corduroy.

It was a glorious midsummer’s day Ria and we all gathered in the car park at Dove Stone National Park, in the hills you could see from your bedroom Sweet Pea.

We ate croissants and drank orange juice at 10.30 am, watching your dear ones arriving from near and far. Claire came, with love from all those you worked with, Kev from Sheffield, Hinnie, Marcus and Catherine, Raja, Maria, Kaz, Delli, Mel, Janet, John and me. Cal had to self-isolate in Yeovil but was with us in spirit.

Claire is waiting for a knee and hip operation, so couldn’t make the climb uphill but would wait near the reservoir for us. We all set off up to Indian’s Head at 11.30 am. The Life for a Life gardeners, Philip and Dougie, met us on the way and told us to rest a few minutes near their tractor til they got back. Your lovely hawthorn tree was waiting in its spot for us.

A partridge was snooping about it and eyeing us up, wondering what we were doing in her parish . She hung about while Marcus placed some of your ashes in with the tree and we said a few words, then Raja read our little plaque that stands in front of the tree for all of us to hear.

I made my way down the hill (easier than climbing up!) and John stayed to take some photos of everyone in that beautiful spot with their own thoughts. A spot you often visited Sweet Pea – and you were with us, with Dom’s arm round you – just like at Prune’s wedding.

We met up with Claire again and then went into Greenfield to Scona cafe, where Gemma had made afternoon tea for us all. Time to sip drinks of tea, coffee, ginger beer and talk quietly with each other, sharing photos. Gemma brought me a Bushmills in a lovely glass and we toasted you and the blessing we have lived with, having you in our lives.

It’s 5am on June 19th 2021… there’s nothing more beautiful than a still garden after dawn. The roses are resting like stone angels on a gravestone – not a petal or a wing stirring. It’s as if the world has stopped turning.

The sweetest thing has happened. Our neighbours, Sue and Dave, have planted a bed in front of their bungalow with wild flowers – and called it ‘Leigh’s garden’. The bees love it. So do I.

Tomorrow we shall plant a hawthorn tree for Ria near Indian’s Head in Dovestone , close to Dom’s rowan tree. Her friends will come…Maria, who still sees her sitting on the stairs; Kaz, the wise one who loves to walk and who had a midwife for a mum; Janet the carer, who can clean a house like a dose of salts – pretty in pink; Mel the music-maker, with a smile to die for; Deli of Mel, lover, mother and health worker and Claire, colleague and loving playmate for Ria, who has cared for Cal and Mudge the cat, til both moved on.

And from the family she loved. Marcus and Catherine, beloved son and daughter-in-law who thanked us for planting the tree; treasured son Calum, self-isolating as housemate has covid, will be thinking of us; Chris brother and Susan, sister-in-law will come from Hebden – the second planting for them; Kev, sweet cousin, will come from Sheffield no matter what restrictions try to stop him; Nell, sister will be with us, timid and watchful; Hinnie, sister, with thoughts too deep for words and Raja, neighbour in Mossley and constant friend to us all. David, Ria’s hairdresser, can’t be there for work commitments – but has sent rose quartz crystals for her and will marry Shaun on June 28th. Another postponed wedding, which was to be celebrated in Dovestone last year, but now a quiet homely, family do. What a special place Dovestone is…
John will be with me to help me up the hill, as he has done for nearly forty years.

Then, on Sunday 21st june, it will be Father’s Day.

On May 10th, 2021, I was sitting in the waiting room at  the Christie, waiting for my scan at 7.30 am. The lemon drink rested on the table in front of me amidst the socially-distanced seating arrangements. Nobody speaking, only the early morning breakfast show on tv at the far end of the room.
A few other people waiting.

Behind me, I heard a nurse speak to someone…”Just follow me, Sweet Pea…” as she led the patient across the room. My senses jerked alert. I have never heard anyone use that name, other than me. And there you were Ria, not socially-distanced, sitting beside me, smiling.

In seed time learn, in harvest teach, in winter enjoy.
Drive your cart and your plow over the bones of the dead.
The road of excess leads to the palace of wisdom.
Prudence is a rich, ugly old maid courted by Incapacity.
He who desires but acts not, breeds pestilence.
The cut worm forgives the plow.
Dip him in the river who loves water.
A fool sees not the same tree that a wise man sees.
He whose face gives no light, shall never become a star.
Eternity is in love with the productions of time.
The busy bee has no time for sorrow.
The hours of folly are measured by the clock; but of wisdom, no clock can measure.
All wholesome food is caught without a net or a trap.
Bring out number, weight and measure in a year of dearth.
No bird soars too high, if he soars with his own wings.
A dead body revenges not injuries.
The most sublime act is to set another before you.,
If the fool would persist in his folly, he would become wise.
Folly is the cloke of knavery.
Shame is Pride’s cloke. (!!)
Prisons are built with stones of Law, brothels with bricks of Religion.

William Blake

Well, it’s early spring – signs of life all around. I haven’t heard the blackbird yet, but when I sleep I’m deaf as a post, as you know, without my hearing aids in – so I’m unlikely to hear that song early in the morning. But evening is another matter and I went outdoors at dusk last evening just in case the blackbird was singing. We have a pair in the garden. they visit for mealworms every day and I watch them on the crocus pots on the front wall, because my desk is in front of the window now. It’s a lovely spot – I wouldn’t swap it, even for a meadow view.

Yesterday I bought some Morning Glory seeds, amongst others, and I’ll sow them for you today. I have your little seed tool and plenty of small pots. I can use the windowsill in the back bedroom because it gets lots of sun. I miss you so much. I love you so much.

Ali sent me a page of Dom’s writing yesterday… his copying out of writing he loved. This was William Blake’s Proverbs of Hell. Very timely under the present world circumstances. I’ll copy it out for you. Kiss Dom’s cheek for me and tell him I’m waiting to see Shivvy in a series being filmed in Liverpool now called ‘Time’. She’s with Stephen Graham and Sean Bean, so someone’s got it right. Willie Russell I think.

Bye for now Sweet Pea. xx