You're with Jesus, right?

 Four days before the funeral a white van drew up outside. The driver had worked on my solar panels a couple of years ago. Now he was back to wash them! They've been up for over 10 years and through sheer neglect have developed a thickish layer of algae and grime. A skilled salesman he emphasized the benefits of allowing him and his companion to clamber all over the roof (back and front) with a cleaner and (my) hose. 

Was I interested? No. It was among a number of things that I did not want to be bothered with as preparations gathered for Carol's funeral.  Yet, I realized inconvenient though it was I probably would benefit! So, reluctantly, I gave permission and admit they returned the panels to pristine condition - the solar units since have shown appreciable bounce.

When he came to say goodbye he asked about my missus. And then he saw the card display as I explained that she had died. 'Oh, he said, she was a lovely lady. I'm so sorry.'  As he was turning away he suddenly wheeled around. 'She's with Jesus, though, isn't she? You're with Jesus right!' 'Yes,' I replied, 'I'm with Jesus.'  'That's everything that is,' he said. Pulling down his t-shirt from his neck, he showed me the tattoo over his heart. A cross with the words: JESUS SAVES. 'I was in a terrible mess. My whole life. Drinking and all that. Going nowhere I was. And then I met Jesus and he's changed me. And he will never let me go. He's the way to heaven. I am the Way, the Truth, The Life. That's him. So we know that for your wife. She's safe with him.'

You just never know, do you? From a man on my roof came a powerful spiritual message, a testimony of faith, straight from his heart. I have smiled about this unlikely reinforcement of Christian comfort several times since. It's really good to be with Jesus, right? 

Scarf Sharing

 As friends entered the church and looked to the front they saw flowers on a pedestal, further flowers on the edge of the platform, and at the back along the baptismal rail over 70 scarves - the best from Carol's collection. The service sheet ended with a message from me:

One of you wrote: Whenever I think of Carol I hear laughter, see wonderful colour and love. True-and she loved colourful scarves. So today we took the best of her scarf collection, some unworn even, and displayed them at the front. We hope that many of you will feel able to take one away with you as a colourful reminder of dear Carol.

This rainbow range of brightness hit three aspects of Carol's personality

• Her love of scarves for every outfit and occasion. Over the years her collection grew, increased by gifts from friends (who knew how acceptable another scarf would be)! and boosted by gifts Carol packed in her present box for others. My daughters-in-law discarded the worn scarves and chose the best for the display.
• Her love of colour - Carol was educated in art and design at Goldsmiths College, London but she always had an abiding sense of style - always blending colour to suit the occasion.
• Her love of giving gifts - I mentioned in the service the four boxes of gifts in the garage amassed by Carol in this desire to give appropriate gifts. So, she would have approved of her collection being given away at the end of the service.

At the service's conclusion a stream of friends flowed onto the platform and nearly all the scarves went, with many people immediately donning one.  Over tea several spoke about the scarves around their necks: I remember Carol wearing this one! This one is so Carol! How wonderful to have a reminder like this!

The photo shows some family flowers on the platform edge with the rail display at the back.

Thanksgiving Day Link

A bright day of full sunshine, full church, with an engaged Zoom congregation - what a celebration! I need to post about the 'scarves sharing' next time, but this post publishes the link for the service for those many friends who could not attend!  With the (vitally necessary) help of IT friends (including my grandson) I have added the link below. 

At funerals you may reconnect with many friends from the past. That happened in splendid clusters yesterday. Two Australian friends were the furthest travelled, but time-travelling took me back to the church where I was a teenager (Arbury Road Baptist, Cambridge), and many friends from 1980-1993 at St. Andrew's Street Baptist Church, Cambridge as well as Spurgeon's (1993-2000). The church in Blackburn and seminary in the USA will mostly need see the recording. Our current church in Histon excelled in the best of preparations, food, music, AV and just being there. I am immensely grateful to our pastor, Chris Farmer, for his sensitive leading at the quiet family cremation service earlier in the day and then the full thanksgiving service later.  

It's difficult identifying a few highlights but let me single out:

• The major focus on giving thanks to God for Carol which really sounded out. As someone said: No one could fail to see the Christian joy throughout.' 
• Photo montage through Carol's life, especially showing the determined little girl full of character.
• Both my boys spoke movingly - it was special hearing their recollections, which included....
• Audio recording of Carol (in 2015) telling how she met me for the first time.
• Histon church tribute with a poem on her 80th.
• Scarf sharing - more in next post.

Among other thanks, I mentioned (had to) Carol's talent for match-making in Cambridge and Spurgeon's. Someone calculated that least 7 couples were present whom I had married, of which three pairs had been encouraged together by Carol. What fun in reconnecting over a mammoth tea. afterwards. Many individual conversations I will treasure for a long time. Oh, so much that I shall treasure of the whole day!

John Gooch of our AV team gave me the link below. You will be able to see the full service and also the photo montage of Carol.  Hopefully when you click on it, all will become clear. Thank you for being part of a special day for my family.

 Thanksgiving Carol Quicke

Nearing the time.

Preparations for Carol's Thanksgiving Service are speeding up, with the big unknown inevitably still unknown - how many friends will actually attend! I guess it could be very crowded.

VENUE: Histon Baptist Church, Station Road, Histon, Cambridge CB24 9LQ

TIME: 1:30 pm on Monday 27th April.

Some additional parking will be available but I know it will be busy in the village.

ZOOM; For many friends who unable to attend the service we shall zoom, using the same ID as used for live Sunday worship. For the ID please see the Histon Baptist Church website welcome page: www.histonbaptist.org.uk.

RECORDING: For many friends unable to zoom we intend recording the service. I shall provide further details about how to listen to the recording.

DONATIONS - instead of flowers, though the church ladies are preparing the church colourfully, we are designating two charities, both of which became important to Carol.

• Arthur Rank Hospice Charity may be sent c/o Peasgood &Skeates, 164 Histon Road, Cambridge, CB4 3JP
• Histon Baptist Church may be made directly to the Church Sort Code 20-17-20 Account 83701808

DRESS - we know many friends will not see this message but the family would encourage the wearing of some colour! Carol loved colour.

I continue to be overwhelmed by all your kind messages and encouraging memories - it really brings comfort.

Corrective note

I must make clear that my Easter gratitude (last post) is genuine and the risen Jesus holds fast my faith. However, I realize how it may have sounded almost facile to skeptical friends. Is accepting a loved one's death that easy?  I need to add some reality, not to dramatize the sadness, but to safeguard against any impression that these last months have been coasting in comfort. Times of desolation have been acute. And were Carol's prayers answered in ways that she wanted? No. Our Christian faith faced struggles these last few months. Do I need to mention this? Well, only to underline how faith in God does not protect you from distress, but grants a way through. 

Carol was in bed for much of the time since mid-July 2025. Being at home meant comfort was always near. She never mentioned feeling alone or scared! However, her seven weeks in hospital was a different matter  During each day I stayed 8 to 10 hours. Her neurological disease (still undiagnosed as we await further brain post-mortem results) gave her times of lucidity in the midst of complete unreality. This was a frightening combination of knowing everything was strange around her with constant pain while not understanding what was actually happening to her. Even though her brain disease removed her ability to walk and use her hands, she still wanted to get out of bed and talked longingly of returning home soon. In the last few weeks her loss of swallowing was clearly terminal. Eating became impossible and even with careful sipping, her occasional choking racked her with panicked pain. Much of my time (really hours) was spent holding a drink with a straw to her chapped lips, encouraging the smallest of sips. 

There were particular moments of desolation. One came most nights at the painful moment of my leaving. I would say a prayer, leaning close with a kiss. Often she pleaded for me to stay. I can still hear the cry: ' Please don't leave me! I would stay a little longer until visiting hours were over.  But in the morning I heard from patients in adjoining beds how in the night she was crying out for help and sometimes sobbing. Nobody would give her a drink. I am sure some nurses did help, but her loneliness and desperation was heartbreaking. 

Another grave day, Carol shared her grief openly. She told me how much she had been praying to God to help her. 'I'm praying, and praying. I'm in such a mess but He won't help me. Why won't he help me?'  I had told her several times how serious her illness was and, by prayer, had hoped to prepare her for dying.  But the dementia aspect of her neurological disease was unable to comprehend.  I reassured her of God's love and of his promise to hold her fast in the valley of shadow, but until towards the very end it seemed to be incomprehensible to her anguished mind. As I mentioned in some past posts I do believe she came to a place of deeper peace at the end of her journey. When she slipped to glory I saw she was serenely at rest. I rejoice her cruel suffering is over. How I wish she had never had to go through it, yet Christian believers are not guaranteed freedom from suffering, are they?  Carol's Easter faith - the hymns we shall sing at her thanksgiving - holds fast through desolation. 

Easter Gratitude

It's a while ago that I preached on the Beatitude: Blessed are those who mourn for they shall be comforted. (Perhaps I should look back and see how helpful it might have been/be?) But the greatest comfort in mourning is the resurrection story and its grounding truth for all living and dying. I admit the lively Easter Sunday morning service in my church with its all-in children's presence (!) was a contrast with the inner feelings I have, but the Easter truth rang out loudly with its transforming power. Christ is risen! He is risen indeed! Alleluia!  

Though my family could not be with me, two friends in my church family shared their lunch with me. Their home has become familiar through their kindness during past months of Carol's illness, and this time with them made Easter all the better. To be with Easter people who share faith is the greatest blessing.  Yes, it truly helps those who mourn. 

One of the less bearable tasks has been planning the services for the crematorium and the church afterwards. However, Carol loved the classic Easter hymns (as well as contemporary ones too). In our Cambridge ministry I used to often choose them for communion services to emphasize the presence of Jesus at the table. I remember her delight with the hymn :Low in the grave he lay. It was the chorus she would sing out: 

Up from the grave he arose,

with a mighty triumph o'er his foes;

he arose a victor from the dark domain,

and he lives for ever with his saints to reign:

He arose! He arose!

Alleluia!  Christ arose!

So, we shell end her service with these words.  Plenty of exclamation marks but it's worth exclaining!

Hugs in strangeness

Yesterday I returned to church after weeks of absence, lately beside Carol's bed or zooming the services. I knew that church friends (and they really are friends!) would welcome me yet I confess some hesitation about the emotion of being back without Carol.  It hardly needs saying that Carol's presence always added joy and vigour to conversations. It's not that I don't try but it seemed effortless to her. Always among the first to grab a tea and mix with people after the services she revelled in fellowship. I quoted one of her church friends on Facebook yesterday. In her card,she wrote: Carol - flamboyantly, outrageously wonderful, a heart for God, a heart for people. Always ready with an anecdote, told in her own inimitable way. Time spent with Carol made you feel better!  

By contrast, after the service, I would often find myself in quieter conversation with the one or two, still without a coffee, with all the flamboyant outrageous stuff in the hall next door. But yesterday, from the beginning, the kindness and warmth of people was so genuine with the warmest of hugs and compassionate of words that I can't say it was effortless but nearly so!. Friends did ask me that difficult question: 'How are you, Michael?' Difficult, because truthfully you don't know how to answer in the anesthesia and tiredness of all the practical busyness. In early bereavement, the bewildering new life bewilders. But the love and prayers and hugs yesterday were wonderful to enjoy. Holy Week is the best time to re-enter congregational worship to prepare for resurrection day.  Right on the nail for bereavement. 

Clearer details

In the whirlwind of the last few days a key date has solidified.  It's some way off but this is vital for my family (small though it is) to gather from the US and Univ. finals.  Monday April 27 at 1:30 pm is now set for a Thanksgiving Service at Histon Baptist Church. As a family we shall meet for a committal service at the crematorium in the morning. 

There are so many thanks we shall want to give for Carol's life.  I know the boys will both reflect on their Mum in the service and some of that will be lively! The sheer range of contacts who have expressed their feelings to me has truly surprised me and fills me with pride.  She really did make a difference in other's lives.

Already, now the date is known, the ladies (I think it will be mostly ladies!) are beginning to plan out refreshments.  Musicians are being marshalled including one of our friends who wants to play the organ alongside other musicians. The organizer of the church flowers has been in touch about Carol's favourite text and what flowers should best be chosen to remember her. Isn't that great? The text Carol was given at her baptism always remained significant and I think that's probably the one I shall choose. Those who knew Carol best, realize how wisely appropriate it was. 'Cast all your anxiety on him because he cares for you' (1 Pet.5:7). One of her great anxieties was that I would die before her. This is not an uncommon worry, is it? 'I couldn't bear to me left on my own', she said.  Well, God really cares for her.

More details will emerge with hopes to zoom the service so that friends at a distance can share with us. I look forward to providing more details as they emerge.

A horrid day

I've tried not to think about it too much.. The post-mortem for Carol eventually took place at Addenbrookes Hospital, Cambridge today.  As expected (at least by the neurological researchers) no immediate cause of death was evident, so her brain is now undergoing histology examination with biopsies likely to take many weeks before any conclusions are drawn.  Nearly 2 weeks after her death we are still in limbo.

However, I am being issued with an interim death certificate that apparently acts like the real thing. I can plan the funeral with the family and, I think, register the death even though the proper certification is some way in the future. I have registered deaths before but it is definitely different for your wife.  As regards the funeral, I am meeting with the funeral director soon and have already been talking with our minister at Histon Baptist Church. It's a smaller building but it has become our spiritual home and, importantly, the ladies of the church are already gearing up to provide refreshments,.  They wonder how many people might turn up? Good question.

Fortunately the service will be online with Zoom which should enable friends at a distance to share in the service.  I am so relieved to have reached this stage. As soon as clear details emerge I shall post them, of course. So, expect to hear before long though the service will be a little way off so that my US family and London family with final exams etc. are all accounted for. 

Limbo

Eight days since Carol's death and I am still waiting for the next move.  The Medical Examiner, Funeral Director, Minister, and us as family are all dependent on what the Coroner determines about a post-mortem.  Through early confusion, when I was allocated a Coroner's Officer, who a day later (after many phone calls) I discovered was incorrectly given to me, I was given a really keen-to-help Officer.  However, she had not dealt with a possible Creutzfeldt-Jacob Disease before (not many have) so she needed to begin a slow discovery process.  Early I explained that the last scan Carol endured (that's the word) had revealed it was unlikely to be CJD but this didn't seem to register..

So, these last four days I learned that a CJD post mortem was likely to be inevitable. Various unhelpful facts emerged. That there were only a couple of UK mortuaries willing to undertake such a post-mortem - in Edinburgh and London.  The disease is seriously contagious when exposed -nobody wants the job! The plot thickened when I learned that actually no CJD postmortems have recently been carried out in the country.  In this exasperating limbo I kept pressing for the original researchers to be fully consulted. 

However, I'm relieved that there now appears to have been a high level neurological meeting today and we might know more next week. .All the time, I am remembering dear Carol in the suffering of the last few days - how unusual her disease is proving to be and how bravely she bore it. And I have been immeasurably comforted by the tens of cards, letters now coming each day (it's a long time since the postman was regular). Your memories, anecdotes and descriptions have been heart warming. Soul warming. I am so grateful and I know the family will be when they come to see the range and depth of greeting.  And, hopefully, there will be news of a thanksgiving service soon. 

Farewell dear Carol

Dara, my daughter-in-law sent me photos she had taken of Carol, singling out this one as her favourite. I like it too. It catches the smile and joy as she was with family. I posted it on Facebook yesterday which issued immediately in an overwhelming (in the best sense) torrent of sympathy with friends' memories. So far, over a hundred friends from our varied past have surprised me by their specific memories of her in action and their love for Carol.  What an extraordinary comfort it is to learn how others have been genuinely touched in meaningful ways by your loved one  Likewise, I so value each of the comments made by some of you on this blog.  I would love to be able to reply to everyone - please forgive me but the word 'overwhelming' is true in these first days and appropriate answers are some way off!  Thank you so much for your prayers.

7:05

Just returned from the hospice.  Simon and I had been with Carol all day with obviously increasing pain this morning, which the dr. on duty corrected. Sitting by her bed we were aware of some response but when two church friends popped into see her, and share in tea provided by volunteers, Carol seemed on the same gentle path of decline.

We left at 6:15 after prayer and promises to see her tomorrow. We had travelled two miles or so when the phone rang. The sister in charge told us that when they were changing her position it seemed that she has suddenly developed a sinister breathing pattern. She thought the end was close. We turned around and re-entered the hospice. Sister Rosa was sitting with Carol. I was stunned by the change.  It is often commented that people choose to die when their relatives leave. Was this happening? 

It gave us a chance to say our thanks to her and all she means to us,. I read some Scripture and prayed, especially that she might enter glory peacefully.  Within minutes her breathing had ceased! 7:05 is the recorded time.

I have too much to work through at present and, unfortunately, the Coroner has to be involved because of the unknown neurological illness.  Obviously I shall post details. For all your prayers and happy memories of dear Carol, thank you.

A pain day

 A brief post to share how I witnessed the hospice in action today. My son Simon arrived by train to give valued support by the bedside. Sadly, Carol's pain increased as the day wore on.  'Wore on' is an apt description! You could not only see pain on her face and increased involuntary body movements but in the way she punctuated breaths with groans. Increasingly, staff monitored ongoing medical response. Apparently Carol began on 5 mg of one particular med while others in the hospice are at 60 mg.  When and how should they increase dosage, especially because hospital notes excluded several options like morphine because of possible anaphylactic shock?  Today, I have been so impressed by the care and time spent by the doctors on seeking a safe balance of drugs to meet her pain. So much time spent explaining to me.

Eventually, by early evening they had established the right combination of drugs for the 'driver' (the name they give the shunt in her arm).  To our great relief her face relaxed, her body stilled and her breaths, though an effort, quietened.  It is such a relief to see pain come under control and the anguish abate !

What also helped us today was the visit from our minister, Chris, who led prayers for Carol. He anointed her with oil, and with words of Scripture and trusting prayers committed Carol to Jesus' care.  Though I, and others, have prayed with Carol there was a weight and depth to this time that I pray, right in the midst of pain and anxiety, she knew Christ's grace and promises ministering peace.  Actually, it is particularly in times of pain and anxiety that the peace which passes human understanding brings comfort and hope.

Again, thank you for bearing yet another medical bulletin. I so appreciate your care.

Suddenly

After no posts for 4 days, because Carol gave me no particular news to report as she gently declined,  today is different. This morning two friends came and Carol showed some humour, though talking itself is clearly a problem. She and Andrew have always exchanged banter with gentle ribbing and to our delight she showed flashes of the old Carol in some jocular jousting.  Wonderful.

However, I had noticed earlier that my major daily comforting role of holding a straw to her sore lips, so that she could sip Diet Coke (of course!) no longer worked. I could see her trying to suck the liquid up but her sipping strength had failed. Her contorted face showed both the effort of trying to make her sipping work and her consternation that no liquid came. Later, in the afternoon her doctor appeared with great concern that her breathing was suddenly deteriorating. She thought that the neurological disease was shutting down more physical activity - like sipping and even breathing. Speaking directly to Carol she explained they would be putting a port in her arm to help her receive some pain killers. Carol croaked agreement though when the nurses arrived she loudly proclaimed she didn't need any pain relief.   

Sadly, the evidence quickly mounted about how much pain she was in. The doctor then revisited me and gave me the talk. Very sensitively. She  told me how Carol is now much closer to dying which could be happening very soon.  This requires my London son, Simon, to come tomorrow and for me to be ready  even tonight that they might call me. When I asked whether I should stay the night at the hospice she judged that was unnecessary, but kept emphasizing how difficult it is to tell about the dying process when the brain begins shutting down vital functions.  They have not seen this disease at Arthur Rank before but seemed surprised at its sudden reversal today (as I was!)

It is so strange to be in the situation I have already seen others in the hospice when loved ones have died. I knew it was going to happen and yet this has still caught me out with a shock. Thank you for all the love and prayers so many of you have showered our way.  I'll let you know the next stage.

Gratitude

I am filled with gratitude tonight. Prayers wonderfully answered. This morning the news came through to the G3 ward that at last a bed was available at the newish Arthur Rank Hospice - a splendid roomy home with ground-floor wards looking out onto hedges and bird tables. I visited with my home group (and Carol) when one of our members was dying, for a memorable prayer session in their garden room. Carol has been admitted to a four-bedded room which she shares with three older women - all frail and fading. Eventually, she will move into a solo room.

As a family we wondered whether this transition to a hospice would awaken Carol to the realization of how ill she really is. Her disease's dementia element has meant that at times she still sees herself as likely to return home and even to walk again. Will this new experience help her understand more and, importantly, help in her preparations for death?  Through many years she has helped people in exactly this situation as a palliative care visitor. I remember in the US hospital she became aware of a man whose anger at dying made him impossible to talk to. Indeed, some of the staff were frightened to go into his room. Yet Carol went in and began conversation which calmed and comforted him.  The rest of the team marvelled at her touch.

Her situation remains most unusual. And, perhaps she does know!  Whatever, we as her friends are praying for peace, comfort and faith these last days and for the best ways to help her.

Entering the building you are immediately aware of  loving concern which surrounds patients and their families. You really are. Only one day into the experience and I have experienced genuine comfort and skill and I am grateful.  We keep praying for this last chapter to be filled with God's love and peace.  

Sad waiting

Members of the palliative care team are becoming familiar to me. Several have now spoken since last week - all with genuine empathy I have to say. However, they have needed empathy. Yesterday they called to say they had a bed lined up for Carol but that a person in the hospital proved to be even more in need of end-stage care than Carol. So she lost her place in the queue. 

With voices full of warm care they said that they hoped something would happen today. 'We know how much Carol needs the care,' they commented, 'and she remains priority.'  However, it didn't happen - no bed became available at the hospice today. It's all doubly sad waiting. Sad for Carol who remains on a public ward with all the noise when I long for her to be in a more restful place, but sad because all the time talk about finding a bed means someone else dying, with all the grief and goodbyes, in order for a space to come free.

I shall hope to report better news soon. The one side-ways silver lining is that Carol has always loved Radio 4 on from the early hours until TV (Heartbeat especially recently) is switched on later in the day. She says that she loves the sound of people talking.  Well, that is certainly happening! 

Anyway, thank you again for all your prayers and concern

Learning about Friday

Today I gleaned three pieces of information about dear Carol. Two relate to Friday events. First, the palliative care team managed to secure a bed at the Arthur Rank Hospice that day. I had no idea of this option - perhaps just as well! Out of their concern that Carol be given more appropriate surroundings and care this was an immediate opportunity. To be eagerly seized, surely! Wait.....

However, as I reported in my last post, Friday was also the day for the MRI!  In the hospital 'team tagging triangulation', the neurology team's decision trumped the palliative care's wishes.  When I heard later that the MRI had shown a clear brain scan I was more than slightly upset that Carol was still on her noisy ward when the hospice move had been secured.  Even more disappointing, was today's second piece of information from the palliative care team that the Friday bed has now been filled and Carol has been put on a waiting list.

BUT also today, the third piece of information came last, this afternoon. The chief neurologist spent half-an-hour with me. He emphasized what he had mentioned before - that humility is vital in his role. (Actually, it's vital for the Christian life too!)  Though Carol's symptoms checked out positively with the list of CJD symptoms -which I looked up the NHS data and I couldn't help but agree - the Friday MRI now led them to the conclusion that Carol is not suffering from CJD!  Her brain should show certain evidence, yet didn't. What a turnaround! What a mystery, because she is clearly impacted by a serious neurological condition. 

The neurologists would love to research further but agree that they do not want to cause more distress to Carol.  Presumably they hope to do post-mortem research.  Living with mystery continues to be our journey. I pray for an opening at the hospice soon and for Carol's peace.

Thank you for bearing with these twists and turns.

About 1-2 in a million

 At last, the much delayed MRI occurred. Simon has come to stay with me this weekend which meant welcome company as we supported Carol through the ordeal at 7:00 pm last night. She completed a successful scan in terms of lasting the required time in the noisy machine. Not successful in terms of the neurologists' hopes that something significant would show up.  We learned today the scan was clear.

The result is that Carol seems to have joined an unhappy rare group of  Sporadic Creutzfeldt-Jacob Disease sufferers, because the clear scan apparently provides evidence to them of something very unusual!  I know I mentioned this possibility earlier. CJD is so rare that only around 1-2 persons in about a million suffer from it. In 2020 only 131 people died from it in the UK. Sadly, it develops rapidly as a fatal illness with very troubling symptoms.

Today Carol has been very tired only surfacing briefly this afternoon with slurred speech and a request for Diet Coke. Friends will know this is her drink of choice and one of my vital jobs is  helping her sip minute mouthfuls without triggering coughing/choking. It's hardly nutritious but it's the only nourishment she has! 

Weekends are inevitably marking time periods in hospital.  I expect palliative care to move into action on Monday for Carol's next chapter. Unfortunately, her ward has become noisier. Immediately opposite her is another older patient also called Carol, who has demanded high attention today, calling out loudly for her husband who was only present for a short time this morning.  As staff rush in to placate her and call out 'Carol, Carol ' it adds yet further confusion!   

We keep praying for peace, comfort and courageous faith. These are not easy days.                                                                                                                    

Three team tagging

The last few days have seen 'triangulation' as one doctor called it, as the three different teams concerned with Carol have been collaborating.  The medical, neurological and palliative teams.  Rob was due to return to the US early Monday but heavy snows in NY meant his flight has been delayed until early tomorrow (Thursday). For me this has been a real bonus because all three teams have spoken with us these last two days and Rob has been able to weigh in with significant questions along the way (as well as be with me each evening as we reflect on Carol's decline). Sadly, decline it is and this has meant serious collaboration.

One area of discussion was the feeding tube. Because Carol is no longer eating solids (which has been true for much of this year) the medical team has been keen to fit a feeding tube (as I mentioned in the last post).  Admittedly unpleasant, they have seen it as necessary to stop Carol wasting away. However, the neurological team has been concerned that Carol's lessening cognitive ability means that she no longer has control over her swallowing.  It is hard to imagine the mental state of someone who cannot remember how to chew and swallow.  Actually,  I don't want to imagine it.  It was ultimately agreed by triangulation that the feeding tube is not going to improve her situation and could actually cause distress.  So it's not happening.

The result of this is obvious. Carol is entering a time with no food and minimal drink. This is where the palliative care team is attempting to track the progress of her disease - though we still don't know a diagnosis.  Is this sudden?  Most definitely. Everyone is surprised that she has become so unwell so rapidly. The long-awaited MRI scan is due to take place on Friday but it is agreed should Carol object (and her  claustrophobia is likely) they will not pursue it. 

I remain so grateful for the love and prayers of our many friends. Please forgive me that I have been unable to reply to so many of you.  I deeply appreciate your kind words. Thank you all. 

31 days - on repeat

So far this year Carol has been in hospital 31 days ( I can imagine my US friends totting up the $ signs!)  It's been a bonus to have family support this week and Rob's visit from the US has brightened up our nightly returns home from the ward which are otherwise so dreary.  Our neighbours (who also go to our church) have cooked meals for both of us the previous five nights - that's real neighbourly love!

Carol is stuck deep in a groove with increasing weakness. A repeat pattern dominates. Partly with successive doctors, nurses,  physios and dieticians each requiring a summary of Carol's condition (with differing results from active listening to its opposite). And partly, dear Carol herself, for ever repeating how numb her hands are, how sore her lips are and (most difficult) about her desire to get up and walk to the toilet (impossible) and to eat something, which has still not found an answer. Three staff came to see us through yesterday about her swallowing and diet problems. Frustration was increased when one swallowing expert made dairy-free porridge which ended in more choking. The end result was talk of a feeding tube up her nose and down her throat. This option was not well received!  Actually, thinking about that is quite frightening in terms of quality of life, isn't it?

However, Carol continues with (very) occasional vintage observations. She told Rob that he needed to lose weight today and because I was wearing a red sweater with green trousers she observed that I could work in the US chain store Target, where this is the uniform. These moments are rare but to be treasured. 

One of you asked me to be more specific about a couple of prayer concerns I have. Good point. 

1. For Carol to have peace, patience and courageous faith in these difficult days. And for me, too!

2. The neurology team insists she has an MRI - may this happen soon and reveal more about Carol's illness with the possibility of some specific remedial help.

3. The palliative care team needs to share help from their experience about possible future steps for Carol.  

I have been overwhelmed by the contacts that so many of you have made. I am not sure when I shall be able to respond but please know how deeply grateful I am.