31st May

Although exhausted as usual and fighting off a long term headache, I’ve quite enjoyed today. And indeed I’m beginning to feel a lightness in my spirit. Yes there have been a few tears but the self-pity seems to be under more control… I’ve been blessed with a fantastic wife and a wonderful life for which I am so very grateful to God. And I am absolutely sure that it is only his hand of favour upon Jane and myself that has brought about that full measure of blessing. That being the case why should I doubt that all is well and all will be well going into the future? Obviously my life will be different, very different, but God is the same yesterday, today and forever. His favour is towards me and my life is secure in his hands.

I spent the day with my youngest daughter today and we had a really good time together. We often end up debating the nature of society and how it is shaped by different influences particularly considering the often negative effect of religion. I personally try very hard to avoid being religious, which I would define as being a man-inspired form of Godliness based often upon repetitive ritual but I also get quite annoyed when Christians use scripture in a dogmatic legalistic way to insist that other people behave in this way or that way. I do believe that the Bible is the inspired Word of God and that it is useful for teaching and correction in all areas of life and I work hard to live according to the Bible’s teaching, but I also believe that it is not intended to be a law book to be followed legalistically. The only law I wish to be bound by is the law that God writes upon my heart and his love for me inspires willing agreement with Biblical principles, not my fear of the consequences of breaking a commandment thrust upon me by some preacher or other. Oh, but I do try and keep to the speed limit as well…

I’ve been to the always predictable Ikea three times in as many days, it’s a bit like Marmite you either love it or hate it, I find it affordable and they have the stuff I can use, so I love it… and Marmite. Anyway my daughter helped me a lot whilst driving there with a wonderful pearl of wisdom. She talked of time being a good healer and the current pain of memories of her mum fading to be replaced with pleasure in recalling her life. That was precious. Why should remembering a loved one be painful? Grief must run it’s course but the blessing of 40 years of happiness is surely a rich treasure to be enjoyed in many ways in the coming years.

Matthew 13:45-46 ‘Again, the kingdom of heaven is like a merchant looking for fine pearls. When he found one of great value, he went away and sold everything he had and bought it.’ (NIV)

30th May

In one way it’s been quite a nice day today with my two older daughters visiting with grandchildren and husbands in tow. They really are doing everything possible to look after me and I am so grateful it’s making me cry again. But who can I talk to when they’ve all gone home? Not just my home but my whole life feels completely empty. I know that God is with me and that he will renew my life in a different way but that will take time and right now my soul-mate has gone and my heart is broken. I’ve had some lovely cards from so many kind friends, some of whom I’ve completely lost touch with, but they still remember Jane and her kindness to them… I keep thinking I’ll tell her about the cards or e-mails I’ve received and then remember I can’t. Bereavement is rubbish!

Fortunately I organised the family finances so there is very little to untangle there but my home is filled with Jane’s stuff and it’s so painful working around her personal possessions. I suppose I’ll make a start in a week or two as living with things exactly as she left them is quite upsetting. I have to re-invent my life completely and that’s not easy. It’s been 40 years since I was a single bloke with freedom to choose my own pathway through life and I can’t really remember who I am when alone. I’ve shared my whole life with Jane and the children. The kids are obviously still around but they’re all grown up and really need nothing from me but friendship and a little encouragement. They’ve got that… they’re wonderful. My son is totally dependent upon me financially but that’s short term and one day he’ll find work and look after himself. He’s very capable and caring with the warmest of hearts especially towards children. So then my Lord I’m pretty much free to serve you. Help me in this time of grief and then if it pleases you show me your will… I will serve you my God I will fulfil your call upon my life. I’m actually, despite the tears of today, quite excited about the future. I love the Lord and he is with me… and he has a plan. A good plan.

Proverbs 16:3 ‘Commit to the LORD whatever you do, and he will establish your plans.’ (NIV)

29th May

So then here we go again… it’s blog time. And this evening I’m finding it difficult to tune in. I’ve just started a first draft of my funeral tribute to Jane. I've got until Monday the 6th so no real rush but how on earth can I describe her 57 years of life on a single sheet of A4? Obviously whatever I say will give only the slightest glimpse of how special she has been to so many people, but I need to say something and am determined to get it right. And I only have this one opportunity in front of all of Jane’s friends and family and want to say something that will properly reflect her life. At the end of the day though the most important thing was Jane’s actual life and not anything I may end up saying.

I went to church today for the first time in ages and it sure felt a little strange having liberty to go out without a sitter and even more so having no Jane to come home to. But I’m getting sort of used to it now and my stay at home son is very caring. He keeps popping in to see me and I guess make sure I’m all right and I do the same for him. I’ve decided the very best place to shed tears is sitting in the bath as it avoids all the salt stains on my specs! And you can’t just block out the memories of the past 40 years… every nook and cranny of my home, every road I drive down, every person I talk to reminds me of Jane and her being there then and not here now. It’s so sad. I have to move on somehow and yet know now is not the time. Even though it is painful I will grieve until I can grieve no more. I have loved and been loved much and will do justice to that tremendous blessing in my life. Jane has gone and that causes me no problem, she’s with the Lord and we will be reunited one day, but today my heart is broken and needs to mend. It will. But no hurry and then I’ll be able to really enjoy the treasured memory of our life together and turn towards reinventing my own as a widower. Not just yet though.

But I have to be honest and say that I’m looking forward to that challenge already. Yes it will be difficult but I have complete confidence that whilst I’m still alive the Lord has a plan for my life and I intend to embrace it. A few years ago when Jane became ill he told me very clearly that the prime call upon my life was quite simply to love and care for Jane… nothing else. I’ve given that my best shot and so for better or worse that has now been fulfilled. One day he will speak again and I intend to be ready to respond. In the meantime I have a funeral to plan and prepare for…

I’ve been wondering about the heavenly host watching over us and whether Jane is given some sort of a glimpse of life back on earth. I don’t really think so but maybe just maybe… so I do need to behave myself don’t I! Perhaps I should take that rug back to Ikea and get the one she would like? No way! She can choose the rugs in our future heavenly home whilst I’ll choose the one’s down here.  

Hebrews 12:1-2 ‘Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith.’ (NLT)

28th May

We saw our pastor this morning and talked through the funeral details. There’ll be a private small family cremation followed by a celebration of Jane’s life on Monday 6th June at City Church Derby (Curzon Street) at 12pm. http://www.derbycitychurch.co.uk/#/contact-info. This will be followed by refreshments in the Hope Centre opposite the church and obviously all are welcome to join us in remembering my lovely wife on this important day.

The explosions of grief have begun to ease which is a relief at least in a practical sense. They tended to be a little too unpredictable… not at all a good idea whilst driving for example! But I’ve managed to keep busy with family still around and grand-children scattering toys quite liberally all around the house. Preparing for the funeral is more than a little challenging with the obvious on-going tension between great sadness and joyful celebration of all that Jane has been. I guess that’s what funerals should be about though.

It’s such an important day for family and close friends though and that demands more than a little time to try and make it as personal as possible. I understand the temptation to simply allow the thing to be as simple as possible with little or no hands-on participation. But I’m trusting the tears will be under some sort of control and plan to take part in some way… and a few public tears are no problem anyway. And it’s quite distracting playing around with old photos and even a rather blurry but rather amusing video of our wedding. Until all of a sudden there’s a highly pregnant Jane standing with our 3 children on a beach about 23 years ago and the tears flow again. I can’t work out what causes me to cry and what doesn’t, it’s all a bit random.

Although the technology's moved on it brought back so many memories when my bedroom was transformed into an impromptu recording studio. It’s years since I played and sang with one of my daughters trying to personalise a backing track to one of the presentations… but it was great to have something ‘normal’ to do and it felt good. Then I sat on my settee to enjoy a few words with my older grand-daughters and glanced down at something. The last time Jane walked around a shop was months ago and she struggled, hobbling with breathing difficulties but quite determined to buy a cross-stitch kit, something she’d enjoyed after one of her major ops. Anyway after all that effort she’s barely started it and it’s silly but I couldn’t cope. My grand-daughters were ideally situated on tissue duty though!

Proverbs 17:6 ‘Grandchildren are the crowning glory of the aged; parents are the pride of their children’ (NLT)

27th May

My Loughborough daughter wrote this song as a present for her mum some time ago  - playing her electric ukulele and singing - and her husband's just put together a few photo's  which gives me a night off from writing a blog about me!

26th May

So for the first time in many days I had a reasonable night’s sleep, and I’ve begun to eat a little more normally. But it was still just after 5am when I found myself trawling websites seeking to resolve an HTML problem on website tracking… nicely distracting, though 4 hours later I suddenly realised I needed to get moving for the Funeral Parlour appointment. I felt quite good and fairly relaxed until I spotted Jane’s brand new lilac socks just lying around. I’d been chuffed with my prowess at buying her ‘clothes’ on my own and she seemed to appreciate them. Anyway, one glance and the dormant volcano of tears erupted once again. My eldest and her husband had just let themselves in and hearing me bawling with my head stuck in the wardrobe she succumbed to the ever present grief quite easily.

All my kids keep turning up and though the tears certainly flow I reckon that if somehow we could measure the time spent laughing together it would certainly be way more than that spent crying. Tears are a gift from God; expression of grief is a healthy way of processing loss… is there a better way? Can the pain of loss fade simply by ignoring it? Do I really just want my heart to grow cold by denying the true feelings I have? Naaaah! Let’s be a cry baby in a very healthy Godly way.

So once again even my Loughborough daughter travelled to be with us in Derby. Together with her husband - he’s just posted a wonderful tribute on his amazing Bible Film blog http://biblefilms.blogspot.com/2011/05/jane-paine-1954-2011.html - and even my 2 year old grand-son. But he was a little worried about coming knowing that his beloved Nana was not going to be here… And the working party continues to transform my front room, but what shall I use it for? A dining room for family visits? How about a jigsaw room? Too much space… it’s weird, I’ve spent 32 years living here continually trying to cram a quart into a pint pot as they say. We have four children and before Jane’s mum came to stay we had a continual stream of people sleeping over downstairs. Even our first son-in-law lived there for a while before they married trying to save for a house deposit. Then I remembered sitting in the garden the last time Jane was able… we had our friends from the Kilburn church visiting and had a lovely time. Jane and I loved to sit there long into the dark of night listening to the birds, sipping wine, eating supper, entertaining friends. And the volcano erupts again.

Tidying up I picked up a photo album with our wedding photo on the front. 1973 with classic long hair, flares and a very dodgy moustache I looked a real sight! What on earth caused me, a 6 foot tall bloke to wear platform shoes? Jane wore an incredible white, fur trimmed, hooded gown and looked timelessly stunning. She never aged a day. And there was the volcano again as I hugged the photo album.

Psalm 56:8 ‘You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.’ (NLT)

25th May

How can one cope with the greatest heartache that life can offer? The pain of losing the love of my life is at times almost unbearable. And the challenge of palliative care in the home is really not for the faint hearted. That trauma needs it’s own recognition and resolution. Jane has gone to a better place, I know that and rejoice in that but my life now feels empty. Every day, every event, every decision has been shared with her. She made my life complete in so many ways. How can I choose a movie without giving preference to her choice? How can I buy myself clothes without her agreement? How can I prepare a meal without her choosing the menu? How can I decorate without her creativity? Who’s going to give me a free haircut now? What about her stuff? The wardrobe full of clothes I’ve been guided through day by day whilst she couldn’t get upstairs, bottles of shampoo, her left-over pocket money, hundreds of paintings and drawings painstakingly created, a small library of art psychotherapy books, her perfume…

They took her body away leaving me holding a small pile of precious metal.

And something more. A lifetime of love has changed me; I am a different person because of Jane. She truly had the strongest sense of right and wrong and principles that challenged my natural inclinations to blur absolute truth. Her strong conviction always overruled my intellectual rationalisation. She was good for me, and the love of God filled her very being. She never had a harsh word about anyone.

And she gave me a family. Our children have stood together in an incredible way. They’ve returned to the family home of their childhood and shared this challenge with remarkable unity. They are doing everything possible to carry every burden together. Our youngest daughter sorted out death certificates at the registrar on her way to our home. The four of them, together with husbands then cleaned our house from top to bottom. Then spontaneously they decided to embark upon a major room makeover. Our front room has been Jane’s 96 year old mother’s bedsit for many years as we cared for her. It’s obviously not appropriate for myself and my adult son to look after her now so she’s gone to Jane’s sister’s house. Today they’ve gutted the room completely and I expect decoration and transformation within days. A project like this is ideal for working through bereavement together. And I kept busy with my two older grand-daughters working on the Barcelona jigsaw. Oh yes, they are on tissue duty for the adult weepies! Sometimes sharing them with each other. But our always overfull house now feels very empty with just two blokes for company.

A friend of Jane’s appeared with home-made food sufficient to provide a family lunch and we laughed and cried together stirring up some wonderful memories. A good friend of mine came for a hug offering to spend a few days camping sometime. My motorhome will need a rear view camera now I’m alone. And Scrabble won’t work either. Maybe I could write that book we all have hidden inside…

Romans 8 38-39 ‘For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.’ (NIV)

24th May

How can I possibly put into a few words even the smallest part of how I feel today? I’ve tried hard to ensure all who are really close to Jane already know but now I am so sorry to have to say that after a tortuous battle for life over the past 4 years my precious Jane has at last found rest in the arms of her true Saviour… the Lord Jesus Christ. He alone can rescue, he alone can save and he alone has lifted her from the grave. I know that right now she is with him and the saints who’ve gone before and that one day, in God’s time we shall be reunited.

I don’t pretend to understand God’s ways but I do know that he has given me an absolutely wonderful partner to be my wife and I am so very grateful for the happiness she gave me every single day for nearly 40 years. And I know that that is far more than so many others are privileged to enjoy in their lives. I have been blessed so completely and so much more than I deserve. So many others say how special Jane is and don’t I know it having enjoyed her complete and devoted attention as her husband making my life so very complete in many, many ways.

She passed away so very bravely, still without a single complaint, still forcing a smile and a weak thank you for everything done for her. She maintained her personal dignity and intrinsic peace to the last despite an impossibly difficult weekend. Yesterday afternoon as she had to be temporarily moved into another room whilst her bed was being assembled she grabbed her perfume from a shelf and sprayed herself with it’s fragrance. One of my daughters began to cry and out came the comforting arm of mother. Another time I was blessed in exactly the same way. Late night as some drugs wore off she really struggled to breathe and continually asked for more medicine. We had a trained nurse with us all through the night and she was able to give an injection to try and help Jane relax and be comfortable. It didn’t succeed. A repeat soon after with a higher dose also had no effect. And then the nurse had to very carefully ask permission before another and final dose. She explained that sometimes this extreme medication caused a patient to relax so much that they gave up the fight and passed on. We agreed as Jane was so agitated and asking for help. It had no effect and she continued to be in difficulty with anxiety.

The nurse needed a lengthy conversation with a doctor who we’d met the night before and a suggestion of a different drug was made and administered. Jane relaxed and gratefully slept soon afterwards. This was around 1am. Being so exhausted I returned to my bedroom to try and rest leaving my eldest daughter to look after Jane with the nurse as her companion. My daughter later said how marvellous a companion this nurse was as they talked and cried their way through the long night hours. Jane did not wake up again and remained completely peaceful until around 10am. The nurse had gone home after her 9 hour shift so we were briefly alone with all our four children come to be with Jane. She very gradually slowed her breathing until it stopped and seemed to drift off so gracefully to be with the Lord. What a special moment that was. He is so good to us and I love him more and more for looking after us. There is no easy answer as to why the Lord allows suffering and premature death but I’m so very grateful for his presence at such a time.

Luke 23:43 ‘And Jesus replied, “I assure you, today you will be with me in paradise.”’ (NLT)

23rd May

The longest day… the watching and waiting continues. Our two youngest children sat with myself and Jane all through the long night, they are precious. They then slept for a few hours whilst our older two covered the first half of the day, and then all four were there.  We’ve had a continual stream of doctors and nurses every three hours or so for a day and a half now. Most had to be called in via the help line with subsequent waits for urgent help for Jane. Much of the day has been quite difficult, adjusting medication, waiting for prescription deliveries. After a couple of injections Jane managed to sleep for an hour or two, but more commonly became quite anxious asking for help… ‘Oh Dave what are we going to do?’

Moving her about is very difficult, but I’ve found she can put her arms around my neck and I lift her in a hug, whispering something nice whilst I sort of ‘slow dance’ to her new seat. We now have a profile bed, fitted with an oscillating mattress filling our living room and that is a good improvement for Jane’s on-going comfort. She’s been sleeping for an hour or two this evening, but is now seriously sedated after a trying day filled with far too many health visitors and their questions, ringing phones and unavoidable business. I’ve begun to take back a little control of Jane’s peaceful environment needs now but organising everything has been necessarily complicated. They’re all trying so hard though.

And I nearly had an hours sleep just before the doctor kindly rang to check on Jane. That’s my third I reckon in about three days. I’m living on caffeine, Lucozade and painkillers with small quantities of food right now but have no choice but to respond as Jane’s primary carer and comforter. I have a couple of children again to support Jane through the night alongside a TreeTops Hospice trained nurse so maybe I might get a little rest… we’ll see.

Odd really, but I keep getting little stirrings of great joy and encouragement from the Lord to look ahead, not backwards or around me but to the future. And come what may I’ve made a date with Jane… an inflight reunion on the way to the Mount of Olives! And now I’m crying again…

1 Thessalonians 4:13-18 ‘Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord’s word, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words.’ (NIV)

22nd May

Watching and waiting. A most exhausting day. I didn’t sleep for 24 hours and ate very little causing M.E. to rear it’s ugly head. I basically collapsed with exhaustion at 6.00am this morning unable to cope any longer… but you don’t raise four wonderful children without them responding instantly and totally when you need them.

So then… Jane took to her recliner for sleep last night having taken all her medicines. Within a couple of hours she was struggling to breathe and becoming agitated so I attempted unsuccessfully to give her Oramorph. What do I do now? I talked and prayed with her and she sort of settled a bit and then the phone rang. A new friend phoned who conveniently happens to be a GP. He had read my blog and was most helpful. I called the out-of-hours doctor and around 3am he called to bring quick relief with multiple injections. Before long a taxi driver appeared to take his prescription for a syringe driver designed to inject Jane continuously with the medicines she needs. Another returned with said equipment before too long and I then called for the District Nurse to come. So by 6am this was sorted… very efficient. And Jane settled for a few hours.

And so did I… horizontal on the floor. Our son who lives with us had already sat with his mum through much of the night whilst I desperately tried to sort my head out and dealt with phone calls so I left him to sleep. I managed to reach our phone and within ten minutes our eldest daughter appeared on the doorstep, followed within a few hours by our other two daughters and a rested son. The four of them have been amazing and sat alongside Jane all day… watching, waiting and looking after us both. I’ve had a couple of hours sleep or so but M.E. isn’t dealt with so simply. I need extended rest and relief from stress… and that’s not just around the corner. Our kids have dropped everything, being fully supported by their own partners, and I have two to help me through the night and possibly all of them again through tomorrow. Marie Curie can provide night sitters with notice.

So today again come lunch-time Jane was becoming agitated and this time the emergency doctor appeared within minutes of my call. Tea-time again she needed more and this time we’d got prescriptions from the chemist so a District Nurse came to inject Jane. The system is brilliant and they seem to have Jane as their number one priority being willing to drop just about everything and come visit. It’ll be a long night again as I expect to need another nurse to visit late tonight and again at 5am to change her 24hr syringe driver.

I’ve been crying all day, even on the phone to the obligatory call centre… they are so kind though. And it hurts so much when a doctor explains once more the obvious fact that Jane is in the final stage of her life. Throughout all this Jane keeps smiling… and I know she feels horrible and at times agitated. But at 4am, even though the doctor had just left her sleeping, she stirred trying to say something. ‘Chocks away!’ she said, which made me laugh and then in my exhausted state I realised she was asking to be moved to our back room which is open-plan with our conservatory overlooking the garden. I took her there and really had to lie down.

1 Corinthians 13:8 ‘Love never fails.’ (NIV)

21st May

I feel absolutely exhausted, emotionally and physically. I’m not sure how much longer I can support Jane by caring for her at home… determination is not really enough. She continues to deteriorate becoming increasingly weak and today has eaten almost nothing. Her fluid intake is also very low. She’s quite dizzy with continual doses of morphine and basically is either dozing or sleeping continually. I now have to lift her to move her anywhere and that’s not easy. I really don’t know if I should be contacting a doctor or not as I want to care for her come what may at home. I continue to cry out to God for his mercy and healing and know that he can for sure heal any condition at any stage for his glory but I’m so tired… and my jigsaw’s getting soggy with all the tears. It’s pretty horrible, I keep thinking she’s stopped breathing, I’m sat in front of her wheelchair crying, praying asking God for mercy and then what does she suddenly say - with enormous effort and just a little difficulty understanding – put telly on… the dancing program! After a quick look I break the news that it’s just finished, but maybe I can find it on BBC i-player? Or just watch the results later? Not again she says! Help us Lord… have mercy meet with us, lift us up. This burden is too heavy it’s too hard, but we love you so much!

Now I have to say that, despite the on-going trial which is absurdly traumatic, this week has actually been a happy week for us both. Our youngest daughter has announced her engagement to be married. And we couldn’t be more pleased for them both. Life’s good… but could be better.

Psalm 121:1-2 ‘I look up to the mountains— does my help come from there? My help comes from the Lord, who made heaven and earth!’ (NLT)

20th May

Today’s been a ‘dopey’ sort of day; Jane’s been visiting Planet Zog all day being totally spaced out with morphine. We hate it. And she’s become quite helpless being unable to stand unaided simply to transfer from one seat to another. Talking has been difficult for some time now but today her speech has become slurred and a little muddled… but only a little. It’s very distressing.

Jane’s new Macmillan nurse called this afternoon and I found that very helpful. She explained how some of Jane’s drugs worked, probably using exactly the same words that every other nurse and doctor had used several times previously but for some reason the penny dropped. Strange how that happens sometimes, and I seem to have been visiting three different chemists for prescriptions twice a day all week… a bit of a nightmare when I have to get a sitter to look after Jane and she sometimes struggles to cope with the thought that I’m not there. Ok so all of a sudden I deal with one chemist sited within 50 yards of our GP and very happy to obtain and then deliver prescriptions to our door with a simple phone call. I’m not quite sure how that happened so easily but it did and is wonderful.

I’m not really sure where Jane’s been today but I found myself dreaming a little as well. It’s not a particular anniversary we normally think about but it’ll be 40 years next month since Jane and I had our very first date. She was rather brave in accepting my invitation of a day trip to the coast as we barely knew each other, although she was a good friend of my sister. But it’s not the sort of date where you can ditch the potential boyfriend after a half-hour appraisal! So glad she didn’t do that... and in my dream, an impossible dream, I’m thinking wouldn’t it be nice to recreate that first date and have a trip to the coast. Maybe not Mablethorpe this time… what about a drive down the French Atlantic coast? And I’m sure our motorhome would cope admirably with the Pyrenees and then we could go for a paddle in the Med! Oh and along the way, just before the Dover ferry, we’d spend some time on Deal beach our absolute all-time favourite in the entire world… even if it is shingle! Now that’s my dream.

Habakkuk 2:2-3 ‘Then the LORD answered me and said, record the vision and inscribe it on tablets, that the one who reads it may run. For the vision is yet for the appointed time; it hastens toward the goal and it will not fail though it tarries, wait for it; for it will certainly come, it will not delay.’ (NASB)

19th May

It’s been nice having a relatively less challenging day after yesterday’s excursion. But even so there have been several health professionals either ringing or visiting right through the day and each demands proper attention to help them to do their job in supporting Jane. Continually discussing end-of-life care is quite demanding but she really needs all the skilled support she can get. I’ve even resorted to a spreadsheet to chart Jane’s many prescriptions which seem to cover every eventuality and would otherwise be rather haphazard. Improving quality of life is the goal but that is so difficult… for example last night Jane gave up on using a bed but managed to sleep eventually in her recliner, albeit propped up into a vertical seated position using pillows. The poor girl was absolutely exhausted. Anyway, today the district nurse talked to us about something called a profiling bed with a pressure relieving mattress that they could provide. As I’ve said before they’ll do anything they possibly can to help Jane cope with her symptoms.

Today Jane has been smiling again. I don’t know how she can but she has… and even tried the occasional witty comment. She seems to be continually saying thank you for everything that’s done for her and is truly my hero for how she’s coping without even the slightest hint of complaint. Although stressed particularly physically, but also mentally to the extreme she remains basically at peace and is running her race with a quiet dignity and total determination. But right now enough is enough and we are asking the Lord to either take her home or heal and restore her... today. Life is tortuous at the moment with no real pleasure and no earthly hope of substantial change. Jane’s only hope is in the God of heaven and earth; Jesus Christ is her saviour, redeemer, healer, restorer, provider, comforter and very best friend… closer than the closest brother, sister, husband, daughter, son, mother or whoever. He is her all sufficient one.

Hebrews 12:1-2 ‘Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honour beside God’s throne.’ (NLT)

18th May

Today has been a rather too much for Jane. We made it to hospital for her appointment but the strain was enormous. The consultant we saw was, in common with the other health professionals we now deal with, incredibly sensitive, respectful and very gentle. They are wonderfully caring and will do absolutely anything they can to help Jane’s end-of-life care. They find all sorts of shortcuts to work around demarcation of authority, enabling prescriptions and equipment to be available almost instantly. The NHS can be brilliant.

Anyway, after lengthy discussion Jane’s medicines have been adjusted to try and improve effectiveness and give a better quality of life, but really she is totally dependent upon the mercy of God now for any substantial relief from the problems she suffers from. One of her lungs is now basically doing almost nothing. And this evening she’s barely able to transfer from one seat to another… energy and strength have been completely drained today. Neither of us has had a good night’s sleep for a couple of nights now and that doesn’t help. Last night Jane could not lie down at all and sleeping in a very upright position is not at all easy.

We need an uncommon miracle… and my Bible is full of them!

Luke 7:11-15 ‘Soon afterward Jesus went with his disciples to the village of Nain, and a large crowd followed him. A funeral procession was coming out as he approached the village gate. The young man who had died was a widow’s only son, and a large crowd from the village was with her. When the Lord saw her, his heart overflowed with compassion. “Don’t cry!” he said. Then he walked over to the coffin and touched it, and the bearers stopped. “Young man,” he said, “I tell you, get up.” Then the dead boy sat up and began to talk! And Jesus gave him back to his mother.’ (NLT)

17th May

It’s been a difficult day after a difficult night as Jane is increasingly challenged with her breathing, and she’s been taking morphine every two hours day and night which is quite exhausting for us both. But we are working hard at making life as easy and simple as possible and this morning the dreaded hair wash and shower was nowhere near as traumatic as the last time… finding ways to minimise effort is the order of the day as any strain at all causes breathing problems. Jane’s Macmillan nurse was particularly helpful by getting an emergency delivery of some equipment the district nurse asked her to obtain as she wasn’t authorised to order. But they’re all working hard to help in any way they can and we’re so grateful to these people. Tomorrow, Wednesday, I have to get Jane to Derby Royal for an appointment with the palliative care consultant for a review and that’ll be a challenge in itself but hopefully worthwhile.

We really do need help, the sort of help that only our God in heaven can provide. And we know he is able, he can heal, he can restore, he can make all things new… including Jane’s broken body. Of course the one thing we all have in common is that one day we’ll die and as Christians death has no fear attached to it, indeed stepping into eternity to meet with our Lord Jesus face to face is seen as something far better than the troubles of this life. But accepting premature death without a fight doesn’t work for me, especially when there is still a life to be lived serving God and reaching out to the lost and the needy… so I keep praying and hoping and seeking and believing that God may yet deliver Jane from the horror she continues to endure so gracefully.

Psalm 121:1-2 ‘I look up to the mountains— does my help come from there? My help comes from the Lord, who made heaven and earth!’ (NLT)

16th May

Sleep… Jane slept very well last night and quite well through a lot of today. But who wants to live like this? Increased use of morphine certainly helps with breathing but the price is high. And so today has been somewhat uneventful and incredibly calm. Indeed the most action we saw was another attempt at the weekend crossword alongside the never ending Barcelona jigsaw. It’s been a few days since Jane could cope with the jigsaw though. The district nurse is excellent and calls around as often as we want, she seems very willing to pursue every aid for Jane’s comfort and we could ask for nothing more.

Our children are also wonderfully caring, offering to help in any way we need and today our eldest grand-children popped through the door for a really brief hello which was nice… but sad also. I remember last summer when we child-minded quite a lot and we got to know them really well, spending many happy hours building dens in the woods on the local park and weaving dozens of friendship bracelets. I enjoyed being the embarrassing grand-dad last Christmas when I produced a family video of all our grandchildren through that summer and beyond. The star of the show for me though was a short clip of Jane hanging on tightly to a sledge coming down a particularly snowy hill last November. Those were the days!

And they will be again…

Isaiah 65:17-20 ‘Look! I am creating new heavens and a new earth, and no one will even think about the old ones anymore. Be glad; rejoice forever in my creation! And look! I will create Jerusalem as a place of happiness. Her people will be a source of joy. I will rejoice over Jerusalem and delight in my people. And the sound of weeping and crying will be heard in it no more. No longer will babies die when only a few days old. No longer will adults die before they have lived a full life. No longer will people be considered old at one hundred! Only the cursed will die that young!’ (NLT)

15th May

So then today in it’s own way has been a relatively good day. But only relatively… Jane continues to live in this living nightmare of a battle that in the natural can only be a fight to control the horror of advanced terminal cancer. We continue to pray for divine and supernatural intervention not just for symptom relief but for that miracle of complete healing and restoration. My Bible shows quite clearly that when Jesus walked this earth he healed all who came to him. He also says that those who follow would do even greater things…

It’s not really much of a life though as after increasing use of morphine Jane’s very sleepy, which is fine in giving a good night’s rest but not a lot of fun during the day. She’s now completely exhausted, feeling really ill and can barely stand in order to transfer from one seat to another, however she remains completely at peace without complaint and with the slightest excuse her trademark smile still fills the room! She is truly heroic.

Anyway this morning one of our lovely daughters came to sit with Jane enabling me to have a break and go to our church meeting. I returned to find said daughter kneeling at Jane’s feet holding an art-book producing a co-authored drawing… quite impressive! Later Jane asked about today’s message at church so I shared a little about coming before God’s throne of grace, and then the Bible story  in the book of  Esther telling of a young Hebrew girl coming uninvited before the King of Persia asking for her life… all very pertinent. I couldn’t remember the King’s name but instantly a little voice confidently mentioned the name ‘Xerxes’… my wife may be sleepy but certainly not dopey!

Psalm 9:9-10 ‘The Lord is a shelter for the oppressed, a refuge in times of trouble. Those who know your name trust in you, for you, O Lord, do not abandon those who search for you.’ (NLT)

14th May

It became quite stressful trying to get Jane comfortable in bed last night as due to pain from pressure points she could not find a way to relax. We’ve been supplied a frame to enable her to sit upright but it was around 1am before she found a suitable position, and I’d begun to wonder if we’d be up all night. Anyway after that she had a really good few hours solid sleep which was a little unexpected and very welcome. But this morning she needed to get through a shower and hair wash and that was so much of a physical challenge that the anxiety pills had to be used for the first time.

We are being looked after though as my father turned up with his regular supply of strawberries and cream and a weekend paper. Jane’s found that she can no longer eat cereal so after a little softening in the microwave a few strawberries make a very acceptable breakfast. And our daughter turned up with her boyfriend carrying ingredients to make a particularly appetising home-made soup. And they really were good to see today! We’re so blessed with our children and their perfect choice of partners.

Psalm 70:1 ‘Please, God, rescue me! Come quickly, Lord, and help me.’ (NLT)

13th May

So Jane now really struggles to breathe, cannot walk, can barely talk, and has problems eating and drinking. She’s suffering some pain from pressure points and fluid filling her legs and ankles. So what does she do? She remains totally at peace and I can’t recall a single complaint… aside from a few grimaces and winces when I’ve crashed the wheel chair or accidently yanked the oxygen tubing out of her nose. And there are many times when I’ve tried to be too helpful by guessing wrongly what she wants or is trying to say. I can be very frustrating at times anyway, but she remains enormously patient. I’m still a learner at this thing called life.

So, again what does she do? This morning she suddenly asked about our son-in-law’s birthday wondering if we’d missed it… always thinking of others! Anyway, turns out it was today, we’d previously sent a cash gift but no card so a text seemed a simple solution. Lo and behold they were near Derby on their way for a picnic in the countryside having a day off work. A few minutes later our out-of-town daughter was knocking on the door come for a hug! And I escaped to their car for a high-five with our 2 year old grandson! Life doesn’t get any better… does it?

Psalm 143:11 ‘For the glory of your name, O Lord, preserve my life. Because of your faithfulness, bring me out of this distress.’ (NLT)

12th May

After a fairly good night, ignoring the 2.30am dose of morphine, Jane surprised us both by being relatively alert until after lunch. Regular medication seems to level a rather bumpy road and we’re hoping to improve this still further with the addition of slow release morphine. A visit by her GP was unavoidably challenging but nonetheless reassuring seeking to cover future problems. But it’s not easy talking through the practicalities of end of life care.

Although Jane is now extremely tired it’s been a relatively good day. Indeed I’ve now discovered a new prayer posture. Kneeling at Jane’s feet whilst massaging her swollen ankles is a wonderful way to reach out to God, asking for his mercy and healing presence.

Psalm 62:5-8

Let all that I am wait quietly before God,

   for my hope is in him.

He alone is my rock and my salvation,

   my fortress where I will not be shaken.

My victory and honour come from God alone.

   He is my refuge, a rock where no enemy can reach me.

O my people, trust in him at all times.

   Pour out your heart to him,

   for God is our refuge.

                             Interlude   (NLT)

11th May

Without the Lord our life would be completely impossible and quite miserable. With him as our focus all things are possible and that’s the challenge… focus, keeping our eyes upon him.

The physical challenges Jane faces every minute of the day are immense. The reality to be faced with on-going disease progression doesn’t bear thinking about… although we have to. Today we were visited by the district nurse and then the Macmillan nurses to put in place the help needed for palliative care at home. We’ve already got oxygen piped around the home and made wheelchair access as best we can… but there’s so much more practically we need now to put in place if Jane is to remain at all comfortable. Admission to the Macmillan Unit is the other option. And tomorrow we need to get our GP to visit and talk through the prescription side of things. In the meantime Jane’s just eaten a small plate of my pasta and is happily guzzling her second glass of organic blueberry juice kindly donated by my sister!

So, many times previously we’ve realised how pervasive a negative diagnosis and prognosis relating to health can be. It spreads to fill the whole of one’s life so easily and it’s as if that’s all there is to consider. And added to that we now have to deal with the horror of advanced cancer management. It’s so easy to fall into the trap of seeing this physical world as being all there is to see. Of course as Christians we know there is a spiritual reality but the western mind-set is quite persuasive and presupposes it to be as unknowable as it is invisible, as unreachable as the unbridgeable gap between life and death. Nonsense, I believe a Biblical and Hebrew perspective suggests a more holistic truth. There is no separation between spiritual and physical realities, they are one. Indeed God is as close as our next prayer. Maybe the Lord’s Prayer? On earth as it is in heaven? Is there any sickness in heaven?

Matthew 6:9-13 ‘Our Father in heaven, may your name be kept holy. May your Kingdom come soon. May your will be done on earth, as it is in heaven. Give us today the food we need, and forgive us our sins, as we have forgiven those who sin against us. And don’t let us yield to temptation, but rescue us from the evil one.^’ (NLT)

10th May

What was that all about? Despite high dosage of morphine all day Jane’s mental acuity remains right on the button and she posed exactly the right question earlier this evening. She’s back home after an apparently pointless admission to hospital at great personal expense. Anyway the story…

I telephoned Jane around 9am and although she had a reasonable night she was still struggling to speak and her breathing a struggle. Through the morning things worsened and she obviously needed help. The team to perform the lung drain procedure were fully booked until Friday so not good. The doctor who saw Jane and other staff determined Jane’s condition demanded emergency treatment she was that bad, so after appropriate persuasion she was found a space for the 20 minute procedure. After 10 minutes she was out. Apparently given more accurate imagery Jane has little fluid to drain and her problems are caused by disease progression. The tumours are growing through her lung lining. They cannot help her. So I’ve brought her home and the suggestion is that Macmillan may find other ways to make Jane comfortable. I presume they’re thinking of medication.

But Jane’s spirit is indomitable despite spending most of the day dozing and coping with being drugged up. A cute 3 year old wandered along the ward and Jane’s face lit up… she loves children. The lady in the next bed who looks seriously haggard with chemo and cancer walked back into our bay and again Jane’s face lit up with a welcoming smile… she loves the elderly as well. As we were in the process of leaving we had a special few minutes with the two other patients and a visiting son. It really isn’t PC to discuss religion nowadays but all three patients engaged enthusiastically once the subject was opened. And now we’ve been encouraged to attend catholic mass and ask to be anointed with oil by the priest for healing, apparently it can be a very moving ceremony. It’s quite precious talking with such seriously ill folk all agreeing that God is good all the time!

Nahum 1:7 ‘The Lord is good, a strong refuge when trouble comes. He is close to those who trust in him.’ (NLT)

9th May

What a long day. It began around 3.30am when Jane woke quite suddenly, coughing, choking and gasping for breath. It took quite a while to sort out and that gave us an exhausting rather traumatic start to the day. This afternoon took us to Jane’s programmed hospital appointment and again that was a major deal just to get there. We almost gave up the attempt sitting in the car on the driveway it was so difficult for Jane coping with the physical and emotional stress. Prescription morphine eventual did it’s work and we were able to set off.

Totally unexpectedly at the interview Jane was immediately admitted to hospital. Apparently they can now fit a permanent fluid drain into her pleural cavity and consider this to be an urgent need. They say this should help her breathing and improve quality of life. They have no answer to the on-going growth of multiple large lesions in both lungs. She is quite distressed at being back in hospital especially as I’m forced to leave her there. And she’s concerned that she won’t be able to cope particularly with the minor op that’s needed.

So we cry out to you our Lord, have mercy upon your daughter Jane. Be with her right now and through this season of great trial. Anoint her as a comforter, as a friend and as her healer. May she have nursing care as you would care, be her physician, be her surgeon, may she have timely treatment according to your timetable and my God will you heal and completely restore my wife… in Jesus name. Thank you Lord.

Genesis 2:18 Then the Lord God said, “It is not good for the man to be alone. I will make a helper who is just right for him.” (NLT)

8th May

A couple of difficult but unavoidable decisions forced upon us today. Jane has been remarkably determined to remain active and live as normally as possible, at least in the confines of our home. This morning it took around 4 hours to get her downstairs and ready for breakfast. Unless we see a miracle there’s no way she’s going back upstairs. Unfortunately that causes major problems for Jane’s mum. She’s 96 and quite dependent upon our support herself so she’s been living in our front room as a bedsit for around 14 years now. Jane’s sister has stepped into the gap and offered her own front room to look after her and we are so very grateful. It’s a bit sad because her whole world is based around living with us as she is taken out several times a week to various church meetings and to friends who live nearby… Jane's sister lives a 30 minute car journey away. So Jane’s mum has quite suddenly been ousted from her home and although our children were wonderful in moving things around at a moment’s notice it’s still a pretty horrible change forced upon us all.

And now we’ve had to start using the wheelchair indoors which is a bit of a downer. At least we already have a ground floor disabled person shower room so we’re all geared up to make life relatively easy. But whatever we do it’s not at all easy for Jane. Our next challenge is a visit to hospital Monday afternoon. I’ve forgotten what good news feels like.

Matthew 9:35 ‘Jesus travelled through all the towns and villages of that area, teaching in the synagogues and announcing the Good News about the Kingdom. And he healed every kind of disease and illness.’ (NLT)

7th May

Another challenging day. Jane is becoming increasingly weak and struggles to walk at all. She remains determined to keep moving though and rejects completely the suggestion of using the wheelchair indoors, but it’s painful to watch her efforts. It can sometimes take 15 minutes to walk 5 yards with a couple of breaks on the way. This is no life. And she’s becoming more and more uncomfortable due to immobility; sitting in different chairs or lying down is about the only way of getting some relief, apart from the dreaded morphine.

Life is impossibly hard and simple survival is about all we can see happening. So… how to move forward? How can we arrest Jane’s on-going decline in health? I believe we’re doing everything we can, that we can see; perhaps we’re missing a few tricks from health professionals but we do keep asking so I don’t think so. And this Monday Jane has an x-ray and interview again so we’ll see what happens then.

Jane’s life is in God’s hands. She and I are totally secure in him. There is not the slightest suggestion that our faith journey is faltering and hope is a banner that we wave vigorously. We continue to pursue the person and purpose of the living God, and every day my guitar gets an airing with our time of worship. One of life’s greatest delights and most special privileges is being able to sing praise to the Lord. Jesus truly is the name above all names and losing ourselves in his presence as we worship him is the most precious experience of our day.

Habakkuk 1:2,5

² How long, O Lord, must I call for help? But you do not listen!

⁵ The Lord replied, “Look around at the nations; look and be amazed! For I am doing something in your own day, something you wouldn’t believe even if someone told you about it. (NLT)

6th May

So after yesterday’s slow day today’s been more of a sleepy day. Jane decided to try very small doses of morphine to control her breathlessness and it sort of works by sending her to sleep. That may help with breathing but it’s not much of a life so perhaps we can reduce the dose even further and get some sort of benefit… we’ll see. Anyway she seems relatively comfortable most of the time, but when the morphine wears off she ends up quite breathless again and just had a major coughing bout after being pretty much unable to breathe at all. Quite horrible.

Our grand-daughters came to visit again after school and that certainly livens the day up. Our ten year old will be joining her football team raising funds for cancer research in the local 5km ‘Walk for Life’ tomorrow. Impressive… although I’m not sure she’s keen on wearing pink!

Psalm 18:1-2 ‘I love you, Lord; you are my strength. The Lord is my rock, my fortress, and my saviour; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety.’ (NLT)

5th May

It’s been a very slow day… very slow. Although she’s relatively comfortable Jane needs continual support. Her breathing is possibly slightly improved today but she’s beginning to get some problems due to immobility, and she’s so weak that any movement is completely exhausting. It’s one more complication to work through… relaxation improves breathing, inactivity leads to increasing weakness, swollen ankles and who knows what more serious problems. Stress is a continual battle and tension is not at all helpful when trying to relax. Hugs work a treat though!

We enjoyed a change of scene this afternoon taking a couple of steps into our conservatory to start our new jigsaw… a painting of a Barcelona flower market. And suddenly we were in southern Europe remembering the city we once visited, though I can’t say the jigsaw is anything like the place we saw. But it does bring back nice memories which although enjoyable as a distraction cannot deliver us from the reality of today. Only the Lord can do that.

Revelation 21:4 ‘He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.’ (NLT)

4th May

This morning we decided Jane had a potential problem that needed looking at. For a few days she’s had a swelling in the middle of her back beginning to grow and we could only guess at what was causing it and whether treatment of some sort was possible or necessary. Our presumption was that she would be admitted to hospital but we decided to check it out at her GP’s first. Turns out it’s some sort of cyst under the skin and nothing to do with Jane’s lung problems so no hospital admission is necessary which is a major relief. There’s something about the reassurance of a medical examination and an encouraging diagnosis that helps with relaxation, and that helps with breathing. But one more medical professional saying there will be no miracle for Jane is always frustrating… the NHS may be out of miracles but my God is always able to provide for all our needs and we need one of his miracles.

After that initial drama the rest of the day has been quite restful and brightened up nicely when our older grand-daughters came to visit after school. They’re great!

Deuteronomy 33:26 ‘There is no one like the God of Israel. He rides across the heavens to help you, across the skies in majestic splendour.’ (NLT)

3rd May

Today has been another seriously difficult day and now I can’t really remember what it’s like to have a ‘normal’ day… a day without an incredibly heavy weight pressing down on every thought, every action. Unless the Lord overrules ‘nature’ my wife will die and the physical problems she is facing at the moment continue to be massively challenging. She is totally exhausted and increased breathlessness remains a major concern. Should she be admitted to hospital? Still not sure it would help just yet and giving up home comforts prematurely is a very high price to pay. We can continue to work on Jane’s comfort levels at home anyway and hopefully next Monday’s x-ray will provide clarity. Early evening she took a daytime dose of morphine which is one obvious option but that’s not a lot of fun to use regularly as it causes drowsiness and she’s quite sleepy anyway. We’ll have to see and could experiment with small doses during daytime hours.

Our focus is upon the Lord as he alone can rescue, he alone can save, and he alone can lift Jane from the grave. We had a tearful half-hour this afternoon and at one point a little voice choked ‘God’s forgotten me’. It didn’t last long though and before long the same little voice sobbed ‘He hasn’t forgotten me!’ There’s something deep inside that is quite unshakeable… I am an eternal optimist. I am totally convinced of the goodness of God even though I do not understand Jane’s suffering and would do anything to help her. And though her suffering is intense God is not responsible, though he could heal and restore her completely, even tonight, there are mysteries concerning God’s purposes and Godly order in the spiritual realm that we do not yet understand. What I do know though is that prayer can change destiny.

Psalm 52:8 ‘… I trust in God’s unfailing love for ever and ever.’ (NIV)

2nd May

So today’s been a fairly uneventful day with Jane’s health, although she’s been rather breathless. We think it’s possibly the exertion of yesterday affecting her as she felt very similar for a day or so after a previous strenuous outing. Yesterday was a little too breezy for Jane to cope with easily so we need to be more careful of the weather next time and then later in the day I discovered that air pollution levels had crept into the moderate zone and maybe we shouldn’t have been outdoors anyway. Living with such precarious health is so very challenging. It was nice to have visitors today, an enjoyable distraction, but Jane remains very weak and soon gets tired.

Psalm 6:2-3 ‘Have compassion on me, Lord, for I am weak. Heal me, Lord, for my bones are in agony. I am sick at heart. How long, O Lord, until you restore me?’ (NLT)

1st May

And yet again it all feels too much; life really is too hard at the moment. Last night Jane felt a simple tickle in her throat and all of a sudden she was choking and unable to breathe, for a few minutes it was horrible. It settled down eventually and she was soon back to ‘normal’, whatever normal is nowadays. But today was a difficult day emotionally with the obvious questions… ‘What’s going to happen to me, what will it be like, how will I cope?’ Somehow we have to keep our focus upon the Lord, he alone is our refuge, our place of safety, he is our God and we must trust him!

This afternoon for the first time in ten days Jane ventured outdoors, determined to break out of the difficulties facing her. We enjoyed a very blustery walk with Jane in her wheelchair along a bridleway threading through golden flowered rape fields down to nearby Markeaton Brook. We went there a lot last year successfully pursuing a fleeting glimpse of our local kingfisher, but no photo unfortunately. It’s funny how even a small achievement such as simply leaving our house for an hour makes life worth living again. But it was a bit blustery!

And I made fish-pie for our evening meal for the first time in my life… and Jane finished every last bit, which can’t be bad can it? I’m learning.

I sort of have a namesake in the Bible, a man named Jabez which sounds like a Hebrew word meaning “distress” or “pain” and he prayed a very famous prayer. Commonly in Bible times we see that names had some sort of prophetic indication and it was therefore quite pertinent for Jabez to ask God to change this in his life. I believe it’s now time for us to be delivered from our distress and pain.

1 Chronicles 4:10 ‘He was the one who prayed to the God of Israel, “Oh, that you would bless me and expand my territory! Please be with me in all that I do, and keep me from all trouble and pain!” And God granted him his request.’ (NLT)