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
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.