Poems

These are the two poems that mum asked to be read during her funeral.

"Instructions" by Reverend Arnold Crompton (slightly modified and read by Shelagh Herbert)

When I have moved beyond you in the adventure of life,
Gather in some pleasant place
And there remember me with spoken words,
old and new.         

Let a tear fall if you will,
but let a smile come quickly
For I have loved the laughter of life.

Do not linger too long with your solemnities,
Go eat, and drink, and talk
And when you can –
Follow a cliff path walk     
Climb a high mountain
Walk along the wild sea shore
Swim in a cool blue sea
Chew the thoughts of some book that challenges your soul
Use your hands some bright day
to make a thing of beauty -
or to lift someone’s heavy load.

Though you mention not my name,
Though no thought of me crosses your mind- I shall be with you

For these have been the realities of life to me.
And when you face some crisis with anguish -
When you walk alone with courage
When you choose your paths of right
When you give yourself in love

I shall be very close to you.

I have followed the valleys,
I have climbed the heights of life.

"The Dash" by Linda Ellis

I read of a man who stood to speak at a funeral of a friend.  He referred to the dates on the tombstone from the beginning...to the end.

He noted that first came the date of birth and spoke of the following date with tears, but said what mattered most of all was the dash between those years.

For that dash represents all the time they spent alive on earth and now only those who loved them know what that little line is worth.

For it matters not, how much we own, the cars..the house...the cash.  What matters is how we lived and loved and how we spend our dash.

So think about this long and hard; are there things you'd like to change?  For you never know how much time is left that still can be rearranged.

To be less quick to anger and show appreciation more and love the people in our lives like we've never loved before.

If we treat each other with respect and more often wear a smile...remembering that this special dash might only last a little while.

So when your eulogy is being read, with your life's actions to rehash, would you be proud of the things they say about how you lived your dash?

Eulogy

For those of you that weren't able to make the service today, I just wanted to share the eulogy that my uncles Peter and Tim, and myself gave.

PETE

When Sally and I were just 4 and 6 we were rather surprised by Jill’s arrival – we’d been promised something special …. and indeed we were delighted that we got new bunk beds!

Little did we realise then just what a force of nature had come into our family. Very soon honing her innate sense of fun, well maybe mischief, she was quickly an instigator of all sorts of our games and pranks. Boisterous, adventurous, bubbly and gregarious …... she was a proper handful from her earliest days. 

Even as a young child Jill demonstrated a passion for games and the outdoors. I wrote to her just 2 weeks ago to tell her what a wonderful privilege it had been to know her, and to be close to her, all through her life. I told her that wherever she goes now I’ll know where she is …… in every nursery and classroom, on every games court, at every beach, in every sea, on all the footpaths I’ll ever walk. I reassured her that our loving memory of her will never be extinguished nor ever forgotten.

Growing up she soon showed a talent and a feel for looking after anyone in need - a trait she continued all through her life,  always eager to welcome to her home her mum, aunt, siblings, nephews, nieces and indeed anyone who knew her family.  I don’t think it was just the cheap labour she relished, to help tackle her never ending supply of ‘jobs’? 

But in her youth she had the ideal captive candidate to polish her skills in her younger brother Tim…… and Tim can tell you more now!

TIM

Ladies and gentlemen, let me take you back to the 1970s - growing up in East Anglia. Many of you will be familiar with the Jack and Jill stories, well this is a story about Tim and Jill. T and J - Just like Tom and Jerry in fact we did used to fight like cat and dog when we were younger.

And just like Tom and Jerry we had a classic love hate relationship, and one of the reasons for this was because I was Jill’s younger brother and I was often stuck like glue to her, at times when she wished she could just give me the elbow! Although she used to mother me (or was it smother me), she used to mock me quite a bit too.

However, I have to say, on occasions, I did deserve it. And one of her favourite sayings on such occasions was: you Stupid boy!  I’m sure many of the more senior of you will remember the saying from Dad’s army, which was a family favourite in the Newman household back then.

In those days there were no electronic devices to keep us entertained, occupied, or in touch with our parents and it was literally safe to play both on and off the streets, from dawn to dusk - and play we did - without a care in the world.

Quite often on the seafront cliffs, sliding down in plastic bags, climbing the trees and playing chicken with the sea, trying not to get wet as the waves lashed onto the rocks, and failing miserably. 

One day, jill decided we could go faster with our go cart, and it needed extra horsepower. However in the absence of an horse, our pet Labrador was put to good use and tied to the front of the cart by a skipping rope!

All that was needed was a crash test dummy, and guess who that was? Yes - yours truly ( thank you jill ). So with Jill’s sound advice and a loud shout at the dog, I was off off like a shot, hurtling down the pavement at a great rate of knots, the only problem we hadn’t foreseen was how to stop! So with a road junction looming, I bailed out of the side door and rolled into a wall whilst the dog careered off into the dunes trailing a twisted and turning wreck of a go cart.

Quite concerned jill ran over to me to make sure I was still alive, dusted me down, looked at me then roared with laughter - and once again, I felt a very stupid boy ! 

Back in the day, many villages had pubs called “The Nags head” (but I had one of my own - my sister Jill!). If it wasn’t enough to have my mother tell me how to behave and what to do, my sister also had to have her own opinion and have a go at me too!

Jill was artful, quick - witted , sporty , and feisty and liked her food as well and thought nothing off pinching my chips off my plate as I was eating them! When I tried to get my own back one day she stabbed me in the back of my hand with her fork!

My love for jill had always been pure, clean and strong

And my love for her will go on and on. I miss her every single day and in every possible way.

Her passion for life for fitness and fun, for swimming on the beach and feeling the warmth of the sun.

Her zest for life and caring attitude; she could also be so very very rude . Her great big smile and bigger head of hair; she was the one who really did care.

PETE

Jill qualified in childcare and came to Jersey as a nanny in 1982…..Not that long afterwards she rang me to ask for my advice ……’Pete’,  she said, ‘what do you think …. airline pilot, or farmer’?

Quick as a flash I replied ‘just for the weekend? …. or for life? I think she knew already but, if not, I know it was the best answer I ever gave to anyone.

TOM

Whilst sitting around the dinner table the other day, Mum tried to convince the family that she did not do anything exceptional in her life.  We disagreed.

She moved to Jersey in 1982 at age 21 to take a job as a nanny.  To help her acclimatise and to get her out of the house, the family she was nannying for introduced her to another nanny, my future godmother, who convinced mum to join her for a drink at the Trinity Arms.

It was that night that she met my dad.  She recounted walking in to the bar and scanning the faces for tall, dark, handsome men. Unfortunately for her, Harrison Ford wasn’t in the room, but my Dad was.

Mum and Dad married at Georgetown Methodist church on October 19th, 1985, and spent their honeymoon in the Loire Valley, where dad managed to lock the keys in the car resulting in them having to call an emergency locksmith.

On their return they set up home in Solnet on La Blinerie lane in St Clement.  Shortly thereafter, Mum gave birth to me, Tom, in June of 1987.

Not being one to let a newborn baby get in the way of her sport, Mum still managed to make the Netball Senior B team for the inter insulars in March of 1988. She had already been playing for a very successful Trinity team that were Channel Island champions in the mid eighties.

Later that year the three of us moved to Cottage Farm in St. Martin, and Jack was born in December.  Daniel followed in April of 1991, and then finally, Rebecca in May of 1994.

We spent 21 happy years at Cottage Farm.  This was our childhood home where mum raised us 4 children, whilst working as a teaching assistant, and seemingly managing to also participate in almost every physical activity possible.

To say she was an active person is perhaps a gross understatement of her level of energy. Her passion for sport was unmatched, proven by the fact that she represented the island in at least three different disciplines.

She loved sports so much that she once attempted to bat in a rounders game whilst holding a crying child. It did not end well, with my brother Daniel being hit in the head with the bat and requiring hospital treatment.

She was most enthusiastic about Netball and played for a long time for St Lawrence. In 1998 she played for the St Lawrence A team that won division 2 of the winter league and in 2015 she won the Mary Blake tournament.  She also received the players player of the year for the D team in 2016, and for the C team in 2017.

Mum was a keen member of both Hawks and Flyers Badminton Clubs and played league and tournaments whenever Netball allowed.  She represented the Jersey Veterans in the Badminton Inter Insulars twice and in February of this year she was unanimously voted to receive the ‘Jersey Gnome’ for the best Jersey performance.  She was voted member of the year in 2016, player of the year in 2017, and won the Jeans Jug trophy in both 2010 and 2013.

She also played Tennis at a number of different courts, representing the island in Inter Insulars in both 2016 and 17.  At les Ormes she won the Sue Basden-Smith memorial trophy in 2013 and was runner up in 2016. 

We have a cabinet at home full of trophies too numerous to mention, but those golfers here today should be grateful she never had time for golf. The first trophy she ever won in Jersey was the Ladies Prize at the 1985 Trinity Arms Open.

Us siblings have reminisced about our fondest memories of our childhood. 

We can remember spending many happy afternoons during the summer holidays down at Bel Val beach in amongst the rock pools or playing outside on the farm and mum calling us for dinner by ringing a large hanging bell. 

As kids of around Primary school age, if we were playing up in the car on the way home, mum used to stop at the end of the road and make us walk the last bit. 

She thought this was a good tactic for dealing with naughty children, but little did she know that we actually purposefully created this ruckus as if we were forced to walk home it meant that we conveniently missed out on having to help to unpack the shopping.

We left the farm and moved across the road to Seaford in 2009.  Since being diagnosed with cancer in 2012, mum, or ‘sick note’ as she was affectionately known, coped with 2 major operations, 3 doses of radiotherapy and 4 rounds of chemotherapy and she did it all with an incredible energy, positivity, and spirit that touched all of those around her.

In was during these years that she somehow managed to actually increase her level of activity. She became a keen racquetball player, continued going to keep fit on a Sunday morning, took up Zumba and yoga classes as well as regularly swimming and doing aqua aerobics at the Merton.

She managed to fit all of that around walking her two dogs, Jessie and Beanie twice a day.

I don’t know of anyone else who would be capable of playing sports before a scheduled round of chemotherapy, only to then find out that they couldn’t have any treatment because their blood test results were not good enough.

When I reflect back on the time we’ve spent together, it only ever comes out as a combination of unconditional love, humour, warmth, care, and kindness. 

I’m lucky enough to inherit a lot of her sense of humour, especially her appreciation of dark humour.  In her last few years sentences such as “It could be worse, not much worse, but it could be worse” were part of our regular conversation. 

She taught me you can make a joke about almost anything, and that if you’re going to cry about something, you might as well laugh first.

She used to enjoy playing jokes on her own children.  I remember being woken very early on a crisp April morning - April 1st to be precise, by a frantic mother claiming that a meteorite had landed in the garden.

I was not immediately convinced considering the apparent lack of devastation, but nonetheless my siblings and I ventured out to where we were told the meteorite lay. 

What we found was a single, unripe melon.

I knew it was unripe because I was particularly unhappy about being duped and attempted to destroy it.  Mum was beside herself with laughter.

At Christmas she used to force us kids out on a morning walk.  I never quite understood why at the time, but now I see the value in creating those family moments that brings you closer together.

A few weeks ago, I asked her what her secret was to being a good parent. Her response to me: “Time, just give your children your time”.  She gave us all more than enough.

I wish I had time to tell you more, but everyone here will know that trying to recount even a small part of her life in a few minutes is an impossible task.       

I'm sad at her passing, but at the same time I'm really happy that something could make me feel this sad.

And I know the only way I could feel this sad now is if I felt something really good before. So, I’m happy to take the bad with the good, and although I’m sad, it’s a beautiful kind of sadness.

For a woman who used to joke to me that she only had one brain cell, she sure did put it to good use. 

Thursday's Celebration

Apologies for being a little boring today but this post is just to confirm some details:

The service of celebration will take place at St Martins Methodist Chapel this Thursday 27th at 2:30pm.  

As was mums wish, we ask that you all wear bright colours.  I've got a nice orange shirt to go with my suit that i'll be wearing. 

We expect there to be quite a few people in attendance, so please make sure you arrive in plenty of time. 

As well as the Chapel, we've arranged for seating in the adjacent hall with a video / audio link. 

We've secured additional parking in the field next to Chapel, but there will be someone directing traffic so you know where to go.

The wake will follow at the RJA&HS from roughly 3:45pm onwards.

Cards

Short post tonight as i'm trying to write a speech.  

First of all we have this card that I made that I believe accurately depicts my mother.  Not sure when i made this but I think I was probably about 25.

On the topic of cards - we've had somewhere between 150 and 200 in the last week.  Our daily routine has been to open and read them all after dinner. Thank you all for taking the time to write many heartfelt messages full of love. Dad has made a display on the dining room table, but we've run out of space already! 

Onto the dogs.  As they haven't made an appearance in a while, here's a photo of them "sharing" a dog toy. 

More gems from the memory box

Today we focus on Jack and how he showed mum he loved her.

Here is (probably) his first handmade mothers day card that had me in stitches for its somewhat patronising tone!

And here it appears he has just used the word 'love' for the first time ever when wishing mum a happy birthday.

This last gem is quite accurate given his height!

Any of you passing the house lately may have noticed that we've been flying the St Martins flag at half mast for almost a week now.  It'll likely only get raised again on Thursday afternoon after the service of celebration.

Memory boxes

Before she passed, mum informed us of her memory boxes that she's curated since she came to the island.  There are seven boxes of cards, newspaper cuttings, photos and the like.

There's so much stuff in there that it took us a couple of hours to go through, and we didn't even get to read it all properly.

We did find some gems that I plan on sharing on the blog over the next week or so. 

I'll start by poking fun at a younger version of myself by posting a 3 part note that I must have written to my mum one night when she was out (probably playing sports, lets be honest).

Some fresh perspective

This is my first post under my own account.  It was time to stop pretending I was Jill Luce.

I scratched my car a little bit whilst parking in Pier road this morning, however I didn't mind so much.  Funny how certain life events make other incidents seem very insignificant.  That fresh perspective is nice though because it helps to make you realise what's really important.

I had to make some design changes to the blog - i'm sure you all noticed.  Mum did love her blog, but her and I do not share the same design taste!  If you're feeling religious then i'm sure you'll agree that the clouds seem apt.

The last couple of days have been very busy, with a lot of time spent organising things.  Most of us are signed off until at least the end of the week, but some of us hard working folk have businesses to run!  The distraction is actually quite welcome.

Dan went to the Southampton boat show on Wednesday to actually look for a new Jersey Sea-safaris boat, although when I asked him about it he said "I didn't talk to the guy I want to buy a boat from".  A curious buying tactic indeed!

We've eaten dinner together the last couple of nights, however we've not had to cook as food has been very generously provided by LT and SP.  We know that this level of generosity will not last forever so Dad is going to have to brush up on chef skills (beans on toast most likely).

We've also received an enormous number of cards that we've opened and read aloud as a family after dinner.  There have been so many heartfelt messages from so many of you that I think i've lost track.  The fact that one woman has had such a positive effect on such a large number of you is truly an inspiration.  If I manage to get one tenth the amount of love and warmth that we've felt over the last few days I will end up a happy man.

I realise that there haven't been many photos on here over the last week.  Whilst walking into the kitchen I noticed this sign on the milk churn outside the door.  Apparently it's been there for years, but as a 'typical' boy i've only just noticed it. 

It's very mum.  She's definitely still with us in spirit.

Arrangements

Tom here. What do I even write.

The last few days have gone past in a bit of a haze.  So much emotional energy spent, with not enough food and not enough sleep.

We've all had little "moments" today, which is Becky speak for a little bit of a cry.  Most of the time you end up having a moment when you find yourself on your own, but luckily we've had each other to distract us.

In trying to keep ourselves busy we've been pragmatic.  The house has been neglected for most of the last week, so there's plenty to be done.  We have also been making a lot of lists such as things we need to do, estimations of funeral attendance, and perhaps most importantly, people we need to thank.

The thank you list is a long one, and to be honest I feel a little bad for not thanking people more on the blog in the Jill Luce way (by not using names).  AA brought us lunch today, and AH provided dinner.  Papa did the shopping and ran errands. Yes, I am allowed to say Papa, because his real name is Cyril. Wait...

We had the funeral directors round at midday and ironed out all of the details over the course of an hour.  Given how organised she was, it's probably of no surprise that mum had already decided everything beforehand.

We even have a playlist she left us.  I don't know whether she put much thought into the order of the playlist though, because I personally wouldn't have immediately followed Eva Cassidy's "Over the Rainbow" by "The boy does nothing" by Alesha Dixon.  It's like she wanted people to go from crying their eyes out straight into dancing the night away!

So, onto the funeral arrangements.

Firstly, we're not calling the funeral a funeral - instead we're having a celebratory service of thanks.

Anyone wishing to attend the service are invited to meet at the St Martins Methodist Chapel next Thursday 27th September at 2:30pm.  A private family cremation will have already taken place.

As was mums wish, we ask that you all wear bright colours.

Donations in lieu of flowers in memory of mum can be sent to either:

• Macmillan Cancer Support (Jersey) Limited, c/o Michelle Parker, Fundraising and Events Co-ordinator, Suite 2.13, The Lido Medical Centre, St Saviours Road, St Saviour, JE2 7LA
• Jersey Hospice Care, Clarkson House, Mont Cochon, JE2 3LB

We're still working on the location of the wake, but we do know that there will be some form of little cakes.  I'll provide an update as soon as I know more.

Even the brightest stars burn out eventually

It is with an incredibly heavy heart that I have to tell you all that mum passed away at around 8pm tonight.

She went very peacefully surrounded by all her family.  As she took her last breaths we all held her, stroking her hands, head, and feet and told her we loved her.  It was sad and we did not want her to go, but at the same time we all knew that deep down it was for the best.  She is at rest, and is no longer in any pain. 

Jill's life deserves to be celebrated, so it won't surprise our reader to know that she has this planned already. We will post more details on this page as we work them out. 

In the meantime I can only thank everyone who has helped us to get through the past 6 years. Jill's battle against cancer has been a roller coaster par excellence. When she was first diagnosed she didn't expect to live very long...in the end we had another 6 absolutely wonderful years. We are all so grateful for that extra time....and we're grateful to have had so many wonderful friends and relatives to share that time with.

Hospice is now basically home

I worry that if I don't provide some update, you'll all fear the worst.

Truth be told, there's not much to tell.  A seagull tried to steal a bag of crisps when we weren't looking, but that's about it. Mum continues to amaze with her ability to keep herself alive, even when dosed up on I don't know how much morphine.

You wouldn't think it, but there's a significant difference between sitting next to her and holding her hand, and just sitting on a chair looking at her.  That physical connection to someone you love who's clearly dying really hits you emotionally, especially when you are completely helpless apart from being able to offer some words of comfort.

At every point in her illness, we've normalised ourselves to her condition.  As a family we adapted and tried as best we could to enjoy life.  Mum has lead that charge to make the most of each situation, but she's currently at her lowest ebb.  It genuinely can't get any worse.  It's scary to think that at some point soon she's just going to stop breathing and that will be it.  The gravitas of the situation is clearly siting there in the front of my mind, but somehow it still doesn't seem real.

Still fighting.....

I've sat alongside Jilly's various hospital beds for over six years now. In Jersey there's been Rayner Ward, Pipon Ward, Emergency Assessment Unit, Accident & Emergency, and I've sat alongside various beds in various wards at The Marsden. I've sat alongside her sickbed at home here in Jersey, and in rented and loaned accommodation in London. The common denominator in all those above is, of course, that (regardless of how bad things were...and at times things were pretty bad) we always came out of the other side, and recovered. Sometimes it took time...but we got there.

That's why I'm sure somewhere inside my brain there's a section that is still subconsciously telling me "don't worry, we'll be okay...we've done it before and we'll do it again"....Jilly will wake up and we'll move forward to recovery......

.....and then there's another part of my brain that is telling me "no...this is it...this is really it". Half of me wants her to "give in" and slip away. The other half wants her to stay where she is forever so I can carry on holding her hand. That's all I can do now...hold her hand...talk to her and kiss her. Our laughing days are over...our walks with the dogs are over...I can't type more

Her body thinks that it's playing in some sort of sports game....in the final set...striving for victory. The problem is that I don't think Jill's brain can tell her body that this is a final set that it can't win.

I've taken a photo of my hand holding Jill's hand while she sleeps. I'm now crying because I've realised that I'll never be able to show it to her...the realisation that Jill's not going to wake up again is tough. She looks completely at peace...she's relaxed...but somehow inside somewhere she's still fighting....and I'm helpless.

Earlier this week, when we were still able to converse, we were joking about our marriage vows. We've laughed about the fact that we've done poorer, and eventually richer. We've done better and worse. We've done health....and we laughed again about having to do the last one as well....sickness. Bloody cancer.

Monday afternoon's alright for fighting

The weather today is glorious, and much like the summer trying to prolong it's life, the damn woman won't quit. 

This is no surprise to us as we're talking about a lady who would delay her chemotherapy so she could play tennis, only to then find out that she couldn't have chemo due to her blood test results not being good enough.

We can each handle our own distress at the current situation, but what I think we're all finding incredibly difficult is any sign of distress from mum.  She hasn't got the ability to communicate clearly at all and so we're maintaining a solid vigil to ensure that we're able to monitor her for any sign of discomfort.

I was thinking before as to how privileged I feel to be able to write this blog - to tell mum's story at a time when she can't.  The only problem with this story is that our main protagonist, our hero, even after overcoming so much adversity, has to die prematurely two thirds of the way through the book. It reminds me of Game of Thrones in that regard.  It's not the story I'd like to have told, but it's unfortunately something that was beyond my control. 

keeping in the "comfort zone"

I don't think that any of us, me especially, expected to be still  be here at Jilly's bedside. She continues to confound us all....her heart is so strong. Her muscles have taken a real pasting from the steroids...and she certainly would struggle to hold a tennis racquet or badminton racquet now....but her heart keeps pumping. As Tom has said, we have quiet moments...and "chatty moments"...and at the moment we're chatting.

The two Andys (both nurses) are currently making some adjustments to the pump that's trickling the morphine into Jilly's system. Both Doctors were here a few minutes ago and we all had a chat about continuing to keep Jilly as comfortable as we can. A little change of angle.... a little less pressure on one side, and then the other. Maybe a light blanket on her legs. We have to use the experience of the last few days to try to find the best position, and the best temperature...and we have very little reaction from Jill now to guide us.

We've spent the last few minutes trying to practical. Dog food and cat food need purchasing....and Pops has been messaged to sort that out. We've discussing "jobs to do on the boat over winter"....a typical and necessary "boys discussion", especially when we're really trying to take our mind off things for a few minutes. Stephe has just gone off to more drinks...hot chocolates and coffees...we all need our "mid mornings".

In my own personal quiet moments I've been trying to get my head around "selfishness". When I get sad, depressed and tearful, why is that? Who am I really sad for? Why am I going to be so upset at Jilly's passing? The answer is because I'm going to have my own life affected...I'm going to have to do things differently because Jills no longer here. Underneath it all I'm predominantly upset for myself....and that's plain selfish.

I've posted on this subject before...I should be happy to have shared so much of my life with Jilly...that she's been my wife....that we've brought up four wonderful children....that we've had so many great times together. Celebrations are going to be difficult to achieve in the hours to come, but I hope that I will find a way to see the positives and not the negatives as we move forward from today.

Monday morning

It's a curious thing, actually waiting for someone to die.  So much time spent is spent thinking or just in silence, and whilst the mind is a wonderful thing, it does need an outlet to stop it running a little wild. 

Being sad puts an emotional strain on you, and I think in the last few days both Dad and myself have found some comfort in writing the blog. I know every post i've made has resulted in me becoming quite emotional, but at the same time there is a cathartic nature to writing that I enjoy. 

We had a conversation yesterday about whether or not each of us wanted to be with mum when she passed. It wasn't something that had been discussed before.  Mum always said that we should live to have no regrets, and I don't want to regret not being with her in her final moments. I think we all feel the same, even if it is incredibly tough.

We've spent enough time up at Hospice that the staff here are becoming familiar faces.  I cannot express well enough in words the level of care and attention that both mum and us have received in our week here.  One of the nurses just brought us all some toast for breakfast as we're all holed up in the room, a horseshoe of people around her bedside.  Each day seems to have blurred into one, and it seems like eons ago that we were all enjoying a roast dinner together last Sunday.  Well, we were enjoying the food, I think mum was just enjoying being around us all.

I don't know whether it's just me, but sometimes I have a niggling fear that i'll suddenly have an epileptic fit if I see a strobe light, even though I have no history of epilepsy.  I think today I have a similar sort of fear: that when mum stops breathing, I will too. Yes I know it's irrational, but then again quite a lot of fears are.

One of the hardest parts about all of this is seeing other members of your family so upset.  I guess in a way it's nice that we can experience the grief together - i'm sure not everyone has this level of support.  We are also very thankful that we have so many friends that have helped us all out with food, gifts, and lovely messages.  It's always warming to read the comments on this blog.

It's no real surprise to any of us that mum is still ticking along - she has a strong heart.

A quick Monday morning update

Tom here.  Jack's just said I need to open this post with a line detailing how the last time I was up this early, I probably had an accident in my bed.

Whilst that is factually incorrect, it is true that I am not an early riser. Anyway, enough about me, you want to know about mum, or "sick note" as Jack affectionately calls her.

We all left last night at 11pm, with the exception of Dad, who stayed to be with mum and hold her hand throughout the night.  He called at 5:30am to say that her breathing had become shallower, and that he thought that we should come in, so here we all are gathered around her bedside, taking it turns to hold both her hands as we talk about random topics.

We don't know if she can hear us, or if she wants to listen to conversations about boats, the RNLI, or milling wood into planks, but at this point she doesn't have much of a choice! Someone could tell us that there was only a tiny chance she could hear, but we'd still be here nattering away with the hope that our voices were providing her with some extra comfort in her last hours.

I'm currently watching her. She looks very peaceful, but her breathing is now very shallow and quiet. I better stop typing because I'm rather worried that she could slip away at any moment, and that really would put a downer on the end of this post!

The Warmth of the Sun

We've taken it in turn for much of the last couple of days to sit with Jilly 24/7. Earlier this evening we rotated between munching through some wonderful shepherd's pies and "sitting bedside" and, after I'd eaten, I went out into the garden. Yes, I'm still smoking, and yes, I'm not supposed to be smoking in the gardens (there are signs everywhere....please don't tell anyone) but it was twilight....and surely rules only apply during daylight hours? Anyway, as I sat looking out over the bay at yet another wonderful sunset I, unsurprisingly, became fairly emotional. It wasn't just the stars (or me) that were "lighting up" but the many navigational marks that come alight after dark to aid mariners around our shores. Noirmont Point, Les Fours, the Diamond, the Raudiere Bouy..... all flashing their individual messages....and there on the horizon, the brightest of them all, the lighthouse on Cap Frehal on the north Brittany coast. The visibility is fantastic at the moment, and lights that far away are often not seen at all.

Those who have, what are described as, "near death experiences" all say that they felt drawn to lights in the distance....and a feeling of warmth and security....and no fear. I know that Jilly has lost the sense of fear that we both felt when she was first diagnosed because we've discussed it. I can only hope with my whole being, with everything that I have, that she too feels warm and secure, and drawn to some guiding light, when she starts her next journey. At the moment she's still occasionally giving us little signs that she's still listening....but more of that later. 

Which leads me, not very conveniently, to male singer/songwriters. I know I've been threatening to start this theme, this thread, for weeks....and tonight might seem inappropriate....but bear with me please.

After not much deliberation I've decided to tell you all that my songwriting hero is Brian Wilson....the genius behind the Beach Boys. I've "studied' his work for decades and have worn out both LPs, cassettes and most recently, CDs. The album "Pet Sounds" is still probably my favourite LP of all time. Yes there's Dark Side (Floyd), Yellow Brick Road and Songs From the West Coast (Elton), Songs in the Key of Life (Stevie), Selling England by the Pound (Genesis) and Quadrophenia (Who), but Pet Sounds is my stand out album.

One other Beach Boys track that always resonated with me wasn't on the Pet Sounds album. The Warmth of the Sun was written hours before the assassination of President John F Kennedy, but was really written about "loss". I think I was always drawn to the harmonies in this song (as with so many other BB hits) because Brian Wilson genuinely was a genius with music. However, it was often (as in this case) the group's lead singer Mike Love who wrote many of the lyrics. This is what ML wrote about his lyrics of this wonderful song, and the loss of JFK. Yes, it's a haunting song in many ways, but it's also wonderfully inspiring.         

May “The Warmth of the Sun” soothe the hearts of all us as we remember the loss of a husband, a father, a leader, and an American icon whose light burns on, and whose legacy continues to inspire new generations. In this world of ours, change and loss are inevitable, but thankfully, through it all, there is, and always will be, love... like the warmth of the sun.

I hope that our reader will now see why I've picked out this particular Beach Boys track this evening. It's not difficult to change a few words so that I can use "The Warmth of the Sun" to remind me of Jilly once she's no longer with us.

I'll finish this shortish blogpost with a few indications of just how much Jilly is still with us, even though she does a pretty good impression of being totally asleep. Stephe came in earlier and sat down next to Jill's bed. As we all do, she picked up Jill's hand. Jill, her eyes still closed, immediately started muttering very quietly. "It's you Stephe....your hands are always so cold...how does Jack allow you into bed?" The second happened late this afternoon when Jill was asked by the nurse if she "had any pain". I don't think the nurse was expecting any response, and was genuinely surprised when Jill lifted her hand and pointed around the room at us all! The third story happened when one of the nurses popped in to say he was "off now" and he'd see Jill tomorrow morning. To everyone's amazement Jill's hand appeared from under the covers and a big "thumbs up" was given. 

The final story is a result of yet more admissions from our (maybe not so) wonderful children. In recounting, over the last few days, funny things that happened during their childhood, it's become apparent that Jill and I weren't always told everything. On one occasion the boys were tearing around one of our fields on motor bikes, annoying the cows. A neighbour came out and told them off in no uncertain fashion. It's not clear if the neighbour realised the connection between me and the kids (??) but, when the children got home they realised there was a message on the answerphone from said neighbour complaining about "some children", and suggesting the I take the matter "in hand".....literally I suppose. Anyway, seeing that Jill and I were out of the house, and they were alone, the boys decided to do the only thing they could.....delete the message! No wonder I had no idea what they were talking about until the end of the story.

Before I accidentally delete these latest ramblings I'm going to "publish"....more later I suspect. Jilly is still asleep beside me, and all is peaceful.

Is this her swansong?

It's Tom here trying to provide you, the avid reader, with some more regular updates as I'm sure you're all very concerned about Mums condition.

I want to re-read Dads last post so I know what to follow on from, but it was almost as hard for me to read as it was for him to write.  I think we're all quite emotional right now.

Mum's condition has worsened each day we've been here, and today has been no exception.  As of this afternoon we're into the last phase; the one that we all knew deep down would come but never wanted to believe would.

The morphine pump is in "comfort mode" (not an actual setting), but this has meant mum has been in what I assume to be an opiate induced twighlight-like sleep since about 11am.  She's lying very peacefully next to me as I write this.

She's just managed a nod to acknowledge that we're here and is obviously listening to us, but I think that her ability to speak is now very limited.  I wouldn't be surprised if she gave us some one line ramble later though.  The last thing she said was when she asked the nurse this morning who won the dragon boat racing?!

I could talk more about the details, but really you don't need to know much of that. All you need to know that she's been ready to go for a couple of days, and that she's very much at peace.

This morning when mum was struggling with her methadone, Jack made a joke about her always finding the simple things difficult.  Unable to properly speak at the time, she responded in the only way she could - by putting up a middle finger in his general direction.  We all laughed. If that's the last decent memory I have of her, I'm happy.

Never waste a moment....

Steve back again.....I fear that if I don't write something soon I may be "voted out" by some random virtual online poll. I was a bit "blogged out" last night and asked Tom to scribble a few thoughts. As usual, he has his own "way with words". His first line would have taken me paragraphs to come up with....sometimes less is definitely more. "Hospice is so nice that sometimes you forget why you're here".... those few words say it all, and I won't try to elaborate further...my efforts would only detract.

Everything here at Hospice is just peaceful... quiet... tranquil. The gardens and paths are so well laid out, and with so many quiet corners....the view spectacular...the building amazing. Then there's the staff....who have been compassionate, understanding, sympathetic, dignified, knowledgeable, professional and dedicated way beyond their remit. What a wonderful facility we have here. How lucky we are. We, as a family, have already started discussing how we might give something, or do something, to remember Jill by. No doubt there will be more discussion in the near future.

I know I've written about this before, but yesterday, in a very brief moment, Jilly and I (as we looked out of the room over the bay) spoke about the "little things" in life. Since then the levels of drugs have been increased yet again. Only this morning we've decided that swallowing is too much of an effort, so it's just medication under the skin now. In that discussion with the nurses, in which we all took part, we chatted about how we are getting close to the end now. Of course, we don't know when exactly, but soon. It was a necessary conversation....not easy, but necessary. Even the staff here have been touched by our strength as a family, and they've all told us so. What a legacy Jill leaves...our empathy with each other is because of her, and I know she's proud of how we've always stuck together.

Never before have I ever thought that something as small as one single word, or one single eye contact, would mean so much. As Jill gets closer to her passing she is spending more and more time asleep, and consequently those words and looks have become fewer and fewer....indeed, she and I may well have spoken for the last time. It only seems like yesterday that we were talking about how lucky we still were to be able to (with the help of the wheelchair) get into a cafe to eat, drink and look at the view....and how those things were important. Is it really only a week ago today that Jill and I sat in the car at La Pulente and looked out over St. Ouen's Bay? How I wish now I could have known where we would be only a week later. Even the merest squeeze of my hand is now something to be absolutely cherished....and I'm typing one handed hoping desperately (is that the right word?.... Am I desperate? In truth I know that, underneath it all, I am) desperately hoping for one more squeeze...even the smallest movement. I guess the moral of this paragraph is "never waste a single moment".

Throughout the last two nights I have held Jill's hand continuously, even when I was asleep. Somehow that still doesn't seem to be enough...it still feels inadequate. So, whatever it is, "do it now". No one has yet invented that time machine that allows to go back and do the things we realise we've missed....


I'm going to stop there for now....one of us will be back later for sure.

It's Sunday and we're still here

Tom again. I might take over writing the blog full time, although i'm sure Dad might get withdrawal if he doesn't post at some point. 

Mum The boys really wanted to watch the film 'Die Hard' last night so we put it on the TV.  Mum was so interested in it that she spent the whole film snoozing.  Everyone was tired, and it was just nice to put on a familiar film so we could switch off a little.

Mum was still forcing down some antibiotics yesterday and there was a discussion as to how things tasted differently to how they smelt.  I recounted a story to everyone, stating how I once ate that deliciously smelly Original Source lime shower gel, only to find out that it did not taste as good as it smelt.  I was met with a muted "stupid boy" comment from mum.  I confess, I was just trying to get a laugh from her.

Us children left at about 11pm, leaving Dad to tend to mum throughout the night. We were back bright and early just after 7:30am to relieve him, and he's currently at home having a shower and possibly falling asleep on the couch. 

I know the dogs are feeling a little bored at the moment because I found a decimated dog toy in the garden this morning (fluff everywhere), but hopefully we've found some more entertainment for them today.  There's even talk of bringing them here for 5 minutes, but that depends a lot on whether mum is awake enough to appreciate them.  I don't hold out much hope that there will be a large enough window of lucidity for that.

Any time mum needs to be moved we're pre-empting it with a quick shot of morphine as any movement leads to coughing and a bit of panic breathing, which is not good for anyone involved, especially her. 

At this point it's hard to paint any sort of accurate picture of the situation without it sounding particularly bleak and harrowing. I'm not one to sugar coat it though, and i'm actually surprised that i'm managing to maintain some degree of eloquence without resorting to just using swear words.

Its 9am and Mum has just been given some steroids, morphine, and methadone.  Even taking drugs through swallowing liquid at this point is very hard and it took probably 20 minutes to get that done.

Methadones emerald green colour reminds me a bit of creme de menthe.  We could put some in a shot glass, pour some baileys on top and make a 'Springbok'.  I haven't had one of those shots since I was about 18, although I'm sure it would have a bit more of a kick to it than I remember!

From what i've seen this morning she can barely open her eyes, but still insists on taking the drugs that they're giving her. The nurse in charge handed her the syringe of methadone, mum then held it for a good few minutes, obviously wanting to take it but feeling a little incapable. 

It was only when the nurse said something to the effect of "Its ok you don't have to take it. Most people in your situation cant take drugs at this point" that mum decided that it was time for "bottoms up", squirted the entire syringe into her mouth and drank the whole thing.  Reverse psychology really does work.

I always did tell her never to turn down free drugs. 

September Saturdays part 2

Hospice is so nice that sometimes you forget why you're here.

It's Tom here, back by popular demand.  I say popular demand, but really i'm writing the blog because Dad is understandably rather tired and he needs to save his energy for the night shift tonight.

It's been a lovely day today, as those of you lucky enough to live in Jersey will know.  We opened the doors and pushed the bed as far outside as we could so that mum could enjoy the sunshine, fresh air and pleasant temperature.  She even felt good enough to request a photo with Dad. I would post it but I think she might kill me - I once posted a photo of her asleep after Chemo and she was not happy.

Mum is, well, being mum.  She has to take oral antibiotics 4 times a day to ensure there's no infection in her legs, and even though she's told that she doesn't have to, she still forces it down.  Daniel has told her many times that she definitely does not want to get sepsis and I think she's actually listened to him!

As is becoming more and more the case, we've focussed our efforts on just making sure she's as comfortable as she can be.  This can be hard as sometimes we have to interpret her needs due to her not being able to effectively communicate.  I made a comment to her earlier and couldn't work out what her response meant. Can anyone tell me what it means when she just gives you a middle finger as a hand signal?!

Fortunately her needs are quite simple - it's usually one of needing to sit up, move, or requesting water.  Even Jack, Dan and I can just about manage those.

We've had some conversations today with mum but everything is getting a little more difficult for her, as well as everyone here.   That said, she has still made some hilarious 'dark humour' comments, so we know she's still alive and kicking in her head. 

It's hard for me to provide some sort of positivity from the situation like I usually would, because frankly it's damn depressing, but we try and make light of it where we can.  One of the good things about her having no hair is that we can at least give her head a little stroke to relax her and let her know that we're there.

She's been having a rest for a lot of the late afternoon / evening, as I think all the moving about today has really taken it out of her.  Poor woman hardly has a moment to herself these days. It's her own fault though - she didn't have to have so many wonderful children.

Slow Sunny September Saturdays...

It's mid morning....and Jill's just had her most compos mentis moment for some hours....and she decided to use her awake time to give me a "talking to" (as much as she could in her new monoword language) about sleeping (not sure about that, more like spending) the night in the chair alongside her bed. It was good to hear her voice....overnight talking was really limited to just very few words....we really only heard from her at the moments when she needed drugs because she had become uncomfortable. She's been sitting up in one position for some time now, and consequently is becoming a little less content, so we had a move over on to one side at about midnight and another back the other way at about 04:30. Both moves were proceeded by a "morphine top-up" some minutes before...with the extra drugs on board she was far less likely to panic. It seems now that even the smallest movements cause her to get out of breath, and that means that moving Jill around her bed (even with helpers doing all the work), even just helping her to sit up, is a real exertion. We know now that we need to plan ahead....and we do.

There's a conversion going on now about the strength of freshly made coffee..... Jill has just requested a cup. We had some specially nice ground coffee given recently, and Jill's got used to a single cup every morning at about this time. So Tom's gone off to prepare the potion....again, it's so good to have Jilly involved in a "normal" conversation....or what has become normal for us now. I never thought that I would appreciate just saying a few words so much.....

Now that Jill is "with us" at the moment, Dan has just read out the various messages that have come into Jill's phone overnight and this morning. There's been some tears...and one particular message needed a few attempts to get through. Even though Dan jokes about things more than the rest of us, that certainly doesn't mean he won't get emotional....we all have different ways of coping, or otherwise.

The night went well really, and I sure I must have slept....someone turned the TV off, and it wasn't me! The three boys and sister Sal all turned up just after 8, and Bex and I went home for an hour to freshen up. We're all back here now and Stephe has just turned up with Saturday morning refreshments...croissants mainly...and no one is complaining. Actually, I'm complaining, as I've just noticed that Dan has taken the bag outside on the terrace and is proceeding to munch his way through everyone else's quota. I'll be back in a moment.

Coffee has arrived now...been drunk....and croissiants (and Danish pastries) have been consumed....everyone feels that little bit brighter and more continental. What a glorious morning it is out there....we are most of us outside Jill's room and we have the door open wide. We can wheel the whole bed outside if we want to...maybe later...but for now we're all content in our various seating positions....all except Bex, who took herself off to the day room and has just been spotted fast asleep. We'll leave her be for now. 

So, we've finished breakfast...just in time to start thinking about lunch! Dog walking arrangements (which went completely pear shaped this morning) have been organised for this afternoon. Bex has woken up....and we're all in the room with Jilly having a chat. How we've missed this for a while.

There's lots of "boat chat" going on. All the 3 lifeboats, and the Fire Service Rescue Boat, are out searching....and if they weren't here then Dan and Jack would certainly be involved. AIS (Automatic Identification System) allows us to see where the boats are...just like Dan has on Jersey Seafaris and we also have on Lady J.


It's now suddenly become 14:00. I say suddenly because I stopped typing to help the nurses change/wash/redress Jill, and change some sheets. That was followed by a change of drugs in the pump that's regularly supplying morphine...then some sandwiches arrived (very important) and then we've opened both big doors and moved Jill's bed right almost nearly on to the terrace. That probably took a couple of hours...hence it's now 14:00.

The BIG news over lunch has been the fact that Sue (and Jill!) have managed to reach their total of £10,000. Jill was so thrilled when we told her. The additional drugs seem to have kicked in, and she's been perkier is the last couple of hours than she has been for some time. Having said that, all of a sudden the effort of the clothes change and wash etc, combined with those extra drugs, and the bed move into the posh seats have wiped her out now. She might have a spectacular view from her bed currently....but she won't be appreciating it with her eyes closed!! 

I'll blog some more later....

Part 2 a)

I can't think of a suitable blog title at the moment...so it's Part 2, with an added a)...the "a)" being in case we get to a b) later on early tomorrow morning....who knows what time I'll post this, or get to sleep.

I'm starting with an apology, actually two apologies. I've made a couple of enormous mistakes in blogs recently.

The first was in reference to cricket yesterday. I said we would have walked up the Melling Road from Vauxhall Station to the Oval. I don't know why, but of course I meant the Harleyford Road. As I typed it I was having fond memories of Brian Johnston and his famous commentaries on Test Match Special..."two red London buses winding their way down the Harleyford Road" was something he pointed out on a regular basis to the listening public all around the world from his commentary position high in the Surrey Members Stand. The Melling Road is, of course, the piece of tarmac (suitably covered with sawdust for the day) that the horses gallop over during the running of the Grand National every year at Aintree. Sorry about that.

The second faux pas was when I was typing earlier today and I said that Environmental Health had provided us with all those "helpful gadgets" to assist Jill around the home. Of course, I meant to type Occupational Therapy.....as easy mistake to make I'm sure you'll agree....I mean, those two are almost the same thing (not)....but I can only assume I was harking back to the days when EH were one of my departments inside the Environment Department. Sorry again. Brainfreeze.

Right, apologies over. Let's get down to more important detail. Jilly is beside me as I type. She's not sitting in a chair beside me, and I'm not lying in her bed beside her, but my chair is close enough that I can easily hold her hand and type very slwly and bdly if i ned to. She's comfortable and relaxed. Everyone has just gone home except for Bex, who has asked to stay here with me tonight. To be fair, she'd have to go home to an empty house....well nearly empty. Tom, Dan and Sally (while inside the same building) would be a very long way away, and Jack and Stephe are still (while inside the same building) next door. Bex wants to stay here, so she stays. That will make this room even more snug tonight, but that's fine.

Jill now has two subcutaneous lines in her right thigh. I had promised her there wouldn't be any more needles in veins, but hadn't bargained on two lines under the skin....but they're for the best. Line 1 is pumping in a very slow dose of morphine on a regular basis. Line 2 is there in case we need any additional drugs. So far so good...Jill seems settled with the arrangements. We've also recently changed her cotton sheets for silk versions (something to do with making it easier to move her on the bed). She's also sporting some rather fetching new wooly socks tonight...supplied by one our most bestest and helpful  friends. No cold feet for Jill this evening...this friend says that she always had to wear socks during labour...what? really? why did I need to know that?...I would have thought that said friend would have had other things to worry about during labour than wearing socks. I don't even remember to put socks on when I get up in the morning! Anyway, the socks are lovely....and "sock photos" have taken and sent on. If there's a competition somewhere in the world tonight for the best looking socks in a cancer bed then we will win for sure.

Leg dressings have just been changed. All good. Bex and I offered to do them....after all we've done them ourselves for some weeks now....but the nurses were keen to do things their way.

Jilly has had numerous messages and texts during the day. While very few have been answered (by us...sorry), I can assure our reader that every one has been read out to Jill. I can only thank everyone for their thoughts and prayers. We ourselves here are also thinking of others tonight.....two girl friends especially who are both fighting their own really tough battles against cancer. In both cases we had promised to "meet up soon" and I'm really sad that Jilly won't now be able to do that. They all bounced off each other....there's no doubt that fellow sufferers have an empathy that is just that little closer...that little more "yes, we understand what you mean"....that little more "we've felt that pain, we've known the anguish and the fear".

"The Haircut" story finally made it into the paper today....two girls (Sue and Jill) topless on page 3....well, hairless anyway. I never had my Jill down as page 3 girl....but I'm proud to see her there today. No doubt on the back of Lucy Stevenson's article, their fund raising efforts are now over £9600. I'm sure that not even in their wildest dreams would they ever imagined they could raise so much. I am astonished, but have no doubt that sometime tomorrow they will get to their (3rd. or is it their 4th.) target of £10k. We also know that another friend of ours, who has selected Ovacome (the ovarian cancer charity that Jill is so close to) as her "nominated charity", will also have raised over several thousand pounds by the time she's finished.

We are so lucky here in Jersey to have such generous people all around us. These various charities all deserve, and need, our continued support....they do such essential work. It's not only physically tough having cancer, it can be financially tough. Here in Jersey we send many patients away for their treatment. The Royal Marsden, where Jill has spent more weeks (months?) than I care to remember, is one of Europes top cancer hospitals....if not THE top. However, it's bang in the middle of one of the most expensive areas of London...which is lovely, but creates it's own problems. The cost of staying close by for both outpatients and relatives is huge....and very often not covered by assistance from Health. I'm not going to start getting political, but without charities like Jersey Cancer Relief many wouldn't know how to cope with the financial cost of cancer....never mind the emotional cost. I said I wouldn't get political but I'll finish this paragraph by saying that when we eventually start to build this bloomin' new hospital we better make sure the oncology and haematology units are big enough. We will have, actually no, we already have more cancer cases than we thought we would. We will need a bigger and more comprehensive facility than is currently planned...cancer and diabetes will play a major part in everyone's lives moving forward. Our reader can expect me to be saying so very publicly, very soon.

Jill is asleep. Bex is asleep. I'm.....not feeling sleepy at all. This isn't good. If I don't start to nap soon I won't be much good tomorrow. I'll sign off now and see how it goes. Who knows, I may be back discussing the leading UK and US male singer/songwriters in a couple of hours. What about male instrumentalists? Have you picked your favourite yet?

All around the world....part 1

I know I said I wouldn't blog about female singers again....and I haven't started on the blokes yet....but today's blog title is a Lisa Stansfield song title. She had a great voice....why don't we hear more about her? Anyway, I was prompted to think about this song when I looked at the blog stats this morning. Yes, it's just after 10....and Sally, Dan and I have been here for while...more of that later.

Before I get to the stats, can I just apologise for the "very flat" blog last night. It wasn't well written, and if it looked like it was put together by someone who was "not quite on the ball" then that was about right. I'm determined to do better today, hence this early start.

Our reader may be interested to know that they are now one of over 500 who are currently downloading/opening the daily blog posts. According to the readout those receiving the blog really are "all around the world". As well as those here on our little rock there are others in the UK (obviously), the US, France, Greece, Ireland, Malaysia, Spain and even Guernsey....then there's a big number of people from "unknown regions"....what's all that about? I thought we'd discovered all the four corners of the globe. How can there still be "unknown regions"?...and if they're "unknown" then how do we know about them? Let's no go there....if we start on known unknowns and unknown unknowns we will certainly be here all day. I know that some of these statistics will be generated by people on holiday, and that the "unknown regions" will certainly include Oz (because we know people there who read the blog every day)....and if you're reading this and your "country of residence" hasn't been mentioned then please don't get offended...we're grateful for everyone who reads this blog, where ever they are.


At the moment we are a room full of family (us seven Luces plus sister Sal)....the last couple of hours has been a little challenging....tough. Once again Jill woke up in a panic....and no strength to get to the bathroom. No worries, catheter sorted (yes, I'm afraid we have had to resort to that as well), jimjams changed, drugs administered....I suppose one could describe Jill as "comfortable". She's also terribly weak now, and pretty much confined to bed. With all the boys here we can keep her in her favourite position, but I know the nurses don't really like the way the Luces do "assistance". Let's just say that the "Luce Boys Method" and the "British Medical Association handbook" do NOT have the same instructions for how you move a patient in bed. I'll leave it there. I'm not sure which option is best, but I know which is quickest.


Talking of speed.....the bed that Jill is in/on has all the "bells and whistles". There's plenty of controls for every required angle, as well as a "ripple effect" machine that inflates and deflates the many separate parts of the mattress in order to keep the bed sores away. There is, in addition, two small cords hanging down under the bed with rings on the end. These are emergency cords, a little like a rip cords on a parachute, and the cords are there in case the patient needs immediate CPR (that's Cardiac Pulmonary Resuscitation)...or heart compressions to people like you and me. One cord deflates the air mattress very quickly and the other cord flattens the bed completely and drops it to it's lowest setting. If you need things to go flat, accessible and low very quickly then pull the cords. Our reader will know where this is going.....the boys are desperate to see how quickly the bed would react if those cords were pulled. I've suggested we might wait until Jill isn't in it. Jill's muscles may be weak now, but her heart is still strong....in all ways.


One of the (many) admissions (from the children) that has come out while we sit together talking and thinking back over the years was one about the daily routine of returning home from school. Often Jill would shop before picking the kids up, and so the car was regularly full of children and food.  Kids being kids, they would always be arguing. Jill would get annoyed and threaten to make them 'walk home from the end of the road" if they didn't stop. It turns out they they used to argue deliberately in the knowledge that they would be turfed out 300 yards before they got to the farm. Why? The answer is quite simple....apparently they all hated unloading the shopping so much that, if they walked the last 10 minutes home, everything would done before they got back! Ingenuity at it's best.


One of instructions on Jill's last emailed list was to "start sorting the house out". In her usual practical way she told us to start returning the various special "bits and pieces" that we've accumulated over the last few months. The special medical bed we had hired was being picked up this morning, and I've contacted Environmental Health about all the "disability aids" they brought around. We've collected all the grabbers and pullers and assisters and boards and steps and extenders and risers from around the house and got them all together. Slowly the house will start to return to normal....but what's normal? Normal for us is a home with Jilly at the heart of it. It wouldn't be our choice to start this clearing job now...it wouldn't be my choice to do it at all.....every little thing we do is another small admission that Jill isn't coming back home. 

Those last five words took some time to type. It's now 20 minutes later and I've taken some air and had some time on my own....my first "meltdown moment". I'm back now and a little more composed. Isn't it my job to stay big and strong and keep it all together?


We took the boat out of the water yesterday. Jack wisely suggested that it might be a good idea to get Lady J back home. The weather, while still looking relatively settled for the next week or so, will definitely be on the change soon. The air feels cooler and fresher in the mornings...and one of these days we will surely see some wind and rain to properly herald the start of autumn. We also know that the next few days are going to be tough....and not having the boat swinging around on a mooring at St. Catherines was a good suggestion. The whole boat retrieval thing went well...it was the first time the boat had been on the trailer...and the journey back up the hill and through the lanes/roads home went much smoother than I thought it might. Now that we've done that it's one less thing to worry about.


The other reason for the title of this post was that, only the other day, Jilly and I were talking about the destinations we've visited since she was diagnosed back at the start of 2012. We've been "all round the world" and, while there will always be places that we would have wished to get to, we managed some really memorable holidays. Oz, South Africa, Caribbean, Hong Kong, States, Europe....Jilly and I have often spoken about those good times in recent weeks.


I remember like it was yesterday the meeting we had with the consultant who gave us Jill's original diagnosis of cancer....the day that we found out the first time. When we were told Jill had cancer she jumped up, immediately in a panic, pacing the tiny consulting room, and her immediate reaction was that she wouldn't see her grandchildren. She automatically assumed (as so many do as a first reaction) that it would be all over in months if not weeks. She was convinced that we needed to do everything at 500 miles an hour (as if she didn't move fast enough anyway)....and we needed yet another list, this time a bucket list. It was all I could do to get her to make some sense of it all. Of course it wasn't going to be "game over", we were going to beat his thing, we were going to take our time because we were going to have lots of time. We didn't need to rush into anything, we just needed the op and the chemo and then we would move on.

How many times have I had to persuade her that there was a goal to aim for? How many times did we "plan it all out ahead"?...how many times did we convince each other that it was going to be okay? In the end we will have to settle for the happy (and it has been the most gloriously happy) medium. Somewhere between the summer of 2012 and "happy ever after" is where we've ended up. We didn't quite do the whole bucket list....we didn't quite get "all around the world"....we didn't quite get all those grandchildren (but the 4 little herberts from St. Ouen have done for us, if we could be allowed to assume such a thing). We've had good times. 


It's now after four in the afternoon and the day (as ever) is passing me by. The two Ministers (don't panic....religious Ministers) who are going to take Jill's church service came in late this morning. Helen and Nico have been involved for some time, and Jill has been clear about what she wants. Hymns, psalms, readings, music...she's had a view about everything. Jilly was just about with us enough to give the thumbs up to the last few decisions that needed to be made. Jill has been convinced all along that there won't be many at her service....how wrong she is going to be! The boys (who even as I type are using the Hospice wifi system to play some sort of online game with people from "all around the world") have been joking about seeing if they could hack into the big screen at Chapel during the service. Goodness knows what we would end up singing and watching. 

This afternoon we've concentrated on each of us having some one to one time...with a steady flow of  Luces at her bedside. There's not been much discussion but she knows we're here....and occasionally we've had a look or gesture that shows that she still hasn't lost her sense of humour.....although we got close when a nurse came in just now with a VERY big syringe of medicine....one of those drugs we changed to a liquid format so it's easier to swallow. With only one in room with Jill at a time, we've rather monopolised the day room up here since before lunch.....I know they say "treat Hospice as your home" and "we don't mind how many of you come", but I think (in the usual way) the Luces have broken the mould.

Since lunch we have also had a visit from the doctors....and again some drugs have been added and changed. We've now got a new way to put slow release drugs just under the skin....and there's some sleeping medicine and also coughing medicine that's being administered like that now. Jill's had her leg dressings changed and the complementary therapy lady has popped in to do some relaxing foot and scalp massage. All is well......

I'm going to post this now, otherwise people are going to have to take half a day off work to stop and read it. It's my intention to post "part 2" later this evening. I've no intention of going home tonight, so our reader can expect some real ramblings from someone who's not inclined to watch (middle of the) night time television. So if you're going to be reading Part 2 later, then my apologies up front.





 

short update post...

Our reader will be relieved to know that this will be a shortish post this evening. Despite best intentions, it's now late, and in the next half hour we (me and the nurses) are going to have to try to get an asleep Jilly into the bathroom, into her jimjams and back into bed. The prospect of that is not filling me with enthusiasm I'm afraid. This will be the first evening that we will have had to wake her up to get ready for bed. I just hope she's not as grumpy as I am when someone wakes me up before heading for bed...having said that, I was asleep on the comfy chair myself half an hour ago.

I guess we've had an average day, all things considered. Some good points and some not so good. High spots would be "party" of close family that got together for the Air Display. We had all arrived by 2:30 and made our way outside on to the grass. Jill was wheelchaired...and coped really well. Immediately after we had a good meeting with our two doctors NB and JduF. We've decided to change some more drugs around, and add some more ones to aid sleep at night. We're also going to take additional oral morphine at a more regular interval. I'm not sure if the thought of those drugs has already starting to work, but Jilly has certainly been "zonko" for the past hour.... she's tired, and I guess her big day has just got the better of her.

Low spots have been a semi panic attack at a point in the day when she was actually expecting to relax and sleep. Her mind was saying relax...but her body was going in the opposite direction. She didn't enjoy that much and was very frustrated...especially as we ended up calling nurses to deliver even more drugs. The other low spot (for Jill) was the fact that she needed help to get up out of the wheelchair this evening. She was determined (despite my protestation) to "do it herself"....and got very upset when she couldn't. Why am I surprised? She is still, even in her sickness, trying to be completely independent. She had a "right rocket" from me after...mainly because she didn't want (or wouldn't accept) help. Consequently she got really exhausted, and that then makes things even more difficult. hey....that's Jilly for you.

We're in a right royal pickle now. It's nearly half past eleven and Jill is very tired and asleep on the bed....she's also just been given her night time drugs....I can see that getting her into the bathroom now is going to be nigh on impossible. The nurse has also just come in and, between the two of us, we're going to change her leg bandages. I'll get back to our reader in a minute.

Right, bandages done.....but Jilly still asleep I'm afraid. We are going to leave her in peace to sleep. When she wakes up and "feels the need" for whatever she can buzz the nurse and request some assistance. I'm heading home for some zzzzs of my own.

The only semi-amusing story of the day concerned chairs yet again. I was sat on that chair, the one that lifts you up automatically. At some random point, and for some inexplicable reason, the chair started to lift. I looked around to find the control box....the chair was about to get to a point where it would start to tip over the table in front of it...yes, the table with the drinks on etc. I was within a second of having a very embarrassing moment when I noticed what was wrong...I had somehow moved to a point where I was sat on the control box. Lesson learned.

More tomorrow....