28th February

I have just returned from the hospice.  The NHS funding has been agreed and Vicky has said she would prefer to stay at the hospice for end of life care.  At first, I felt sad and disappointed, as I was a great fan of home births and home deaths.  When I was the team leader for the hospice at home service in Brighton I witnessed some peaceful home deaths in Penthouses overlooking the sea and council houses where no one could read or write.  I believed in de medicalising both birth and death and found my own two home births empowering.
However, Vicky has other views and I must respect her wishes.  Again, I need to let go. She feels safe and settled in the hospice, and despite needing all care, remains cheerful and gracious.  She knows lots of the nurses' life stories and doesn't want to risk going home where the package of care may not be so good.  In fact, she told me to write;

Vicky is overwhelmed by the kindness of the staff as nothing is too much trouble.  She can even order tasty Eggs Benedict.
She is too weak to respond to individual emails and cards but would like to say a huge thank you.  Where did you find such inspiring cards?  She loves them.

She says short visits are welcome.  The hospice is hard to get to on public transport, but once you are there it is very pleasant. I have been ordering hot lunches for the past two days for a small price, and it is lovely to eat cheesy chips with Vicky whilst listening to Mel C on Desert Island Discs this morning for instance.  I tend to go every day apart from Mondays, although tomorrow I am taking Tiger to see An Inspector Calls at the theatre as she is doing it for GCSE.  I never go to the theatre; I much prefer films normally.
Josie

26th February

Josie is urging me to write an entry to the blog.  I am finding it incredibly difficult to hold the pen.  I am so weak just like Beth in Little Women who found the needle too heavy to hold.  
But in some ways, I am better and have had a delicious poached egg this morning.  I also enjoyed spiritual food in the form of a few psalms read to me last night.
We have just celebrated with a virtual twin party for my two 60-year-old sons.  They were both on facetime at once. It was hilarious.  I remember their births on a cold winters day about 4pm in the afternoon.
Vicky


I am so happy Vicky is brighter and enjoying some food again.  It reminds me of a poem my sister wrote called It's Not Over.  I'll just write down the last two stanzas, but the whole thing is good.  Josie

This is the epic last chapter
the firework that won't 
go out, it just keeps spinning.
After the coffees, they bring out
a chocolate mermaid
a pyramid of ice!

Glorious undead drunks
still flail and croon
down Northumberland Street.
They dance for England.
Oddly, it's not over yet.
This is the best bit.  

Julia Darling

25th February

I think I'd always assumed that as Vick makes pastry so quickly, she would do everything quickly, like dying, and both of us thought she might go two weeks ago when she first arrived at the hospice.
However, here we are two weeks later.  I drove the writing group over to see her today.  It was called Nibbles and Scribbles, then Nibblers, then Nibs, then Dumbos, and now it is renamed Bedbugs.  
When we first arrived Vicky was sound asleep and I couldn't wake her up.  I've always known she was a heavy sleeper since she once had a burglar in her bedroom lighting matches and she slept through the whole thing.
Vicky woke up just as we started to read out our scrambled Line and a Word nonsense warm-up pieces.  She then wrote two short pieces herself, and THEN ate some roast chicken dinner!  I hate exclamation marks but I think the chicken deserved one as she hasn't eaten anything like that for two weeks.
We had a chat with the consultant today.  They will try to get funding from the local health authority for Vick to stay at the hospice as she is comfortable there, but if not, I have reassured Vicky I will happily take her home to Dumbrells Court with carers to help me.
I feel quite jubilant she is still around.  It is all as good as it could be.  It is the Way Things Are.
Josie

21 st February

Robbie and I sat at Vick's bedside for a long time today.  She was chatty at times and even ate a spoonful of freshly cooked scrambled egg, not the microwaved kind thank God.  I think her condition has definitely reached a more plateau-like state, and we may be visiting the hospice daily for many more days or even weeks.  
Vicky says she thinks everything is all right.  She has a sense of kind people and pets waiting for her to arrive on a beach, with open arms.  She wishes she could get on the boat to reach them soon.
I am getting on with my knitting.  I'm knitting green and blue squares for a blanket for a baby boy I am fond of.  He is the fifth child like me and he has four older sisters.  
We are having an Indian takeaway tonight for Robbie's birthday, which is a treat.  I can't go to the fundraiser I started to organise a few months ago, as I'm not doing Normal Things, but lots of lovely people have taken it on and I hope it goes well.  The art of letting go is a good thing to practice, even though it feels uncomfortable.
Josie

19th February

Vicky was pleased to have psalms read to her last night from one of the priests from Ely Cathedral whom she knew from a book group.  She had a longing for a ripe Conference pear today so I drove around Ditchling trying to source one until a kind neighbour gave me one. The strange thing is that my sister had the same craving when she was dying.  It was not quite ripe enough but then the hospice kitchen found some tinned pears.  Poor Vicky had had some pain and vomiting today but the hospice nurses were quick to give her injections.  It is generally lovely there at the hospice, and at times like that, I am glad we are not at home as we could never get injections quickly there. 
I have taken up knitting.  It seems wholly appropriate despite my poor technique and lack of fancy stitches.  I also taught Tiger to knit today, so we sat like a couple of old crones by the bedside.  We have some green wool, and I am aiming to create a draught excluder sausage dog, but it is more about the process than the finished product.  
Normal life remains on hold for me.  It is not business as usual.  
Josie

17th February

I have been enjoying writing this blog daily, as it is part of my simple routine when I get back from the hospice, but after today I think I may only report changes if that is OK.
Vicky had some of her old leg and back pain return today which is a shame, so the medications were increased.  She manages to eat the odd piece of melon or mango, thanks to the steroids reducing some of the inflammation in her abdomen.  She craved some sparkling water so we picked some up in the M and S at Gatwick when we collected my son.  It is incredible to see him. I loved seeing some of the international reunions with families as we waited at the Arrivals gate.  A toddler who had not seen his dad for five months remembered him and smiled the best smile.
Vicky's room is like a florist shop and she is overwhelmed with the lovely cards people have sent.  She has been busy getting grandchildren to buy gifts online for other family and friends whose birthdays are coming up.  She is not transferring out of bed now at all, due to her general weakness and fatigue.  
A hospice volunteer gave me some reflexology today which was relaxing.  We will do fundraising for this hospice in the future.  Marathons, midnight walks, bungee jumps?  We must owe hundreds of pounds already just for teabags.  
Josie

16th February

In the midst of Storm Dennis, I really feel Vicky is having some quality of life in this final phase.  She had some heavenly nurses looking after her today and she smiled her lovely smile often when she wasn't asleep.  Tiger showed her some jolly photos on the iPad and I read her some Wordsworth and some Dylan Thomas "Under Milk Wood."  We also drank coffee and played scrabble while she slept, and she listened to Private Passions on Radio 3, which was about Brighton and death; the music on it was interesting.  We also gave her hand massages at the same time as listening to a Buddhist monk in Penang do some chanting for her.  He kept saying "Vicky Darling" but my mum thought he was saying Kitchen Garden as her hearing is not good and his accent is strong.  It was a beautiful moment.
I keep driving through great rivers on the way to the hospice, and I wonder if we will all be washed away.  I am having a day off from my acupuncture clinics tomorrow for the first time ever really. I hope the patients are not too put out but I can't do normal life at the moment.  I am picking up my long lost son from Gatwick at around teatime; it will be great to see him.  My three daughters and my niece and my American lodger are all here at home with me now, we are having leek and potato gratin for supper with vegetarian sausages and Yorkshire puddings.  I hope Vicky has another comfortable night.
Josie

15th February

I went for a walk and cleaned my filthy car before going to the hospice today.  I am fancying old fashioned food like fried eggs and cups of strong Yorkshire tea with full-fat milk nowadays; none of the vegan stuff.  There was a Saturday feeling at the hospice today, although it is pretty relaxed most of the time. Vick seems sleepy and comfy; much the same really.  A midwife friend sent me an eloquent text about Vicky being in the departure lounge, and it is exactly the same with birth.  We may carry on in this strange time for weeks I suppose. 
Lots of people I know seem to have coughs and colds.  I wonder if I will snuff it with the Coronavirus before Vick. 
I can't really do many normal things at the moment, but due to lots of family around with Vick today, I sneaked off to the cinema alone to see Emma.  There was only one ticket left online so I did it impulsively.  As Vick and I have been reading Jane Austen aloud, I loved it.  I loved the colours, and the clothes, and the rooms, and the countryside, and the complex character of Emma.  Nothing much happens in Jane Austen but every look is important. 
Josie

14 th February

Vick was a bit perkier today, much to her annoyance.  She just wants to slip away and feels embarrassed if people think she was just about to die and then hasn't gone and done it.  She even ate a bit of fruit and yoghurt.  Our friend T read her the brilliant poem by Carol Ann Duffy called Valentine, which is about giving your loved one an onion.  
Some of us sat for a while in the nearby bird hide today, as she gets so sick of us all sitting about.  I love the way you just have to be patient in bird hides.  Like fishing I suppose.  Something I am not at all good at.  We saw blue tits, great tits and coal tits.  
I have no idea how long this strange time will go on for.  Vicky remains comfortable, but can't be bothered with seeing us all that much.  I understand; I am sure I would be the same.  I know I have to let her go, although it is hard.
Josie

13th February

Vicky was more comfortable today and looked serene on pink pillows with the smell of hyacinths in the room and her John Lewis nightie on.  We all had a relaxing day, with poetry, and a walk in the ancient woods nearby.  The hospice are generous and hospitable about letting Darlings drift in and out, and use the fridge in her room for snacks, and make endless trays of tea.  We watched the rain and the sun making droplets glisten on the branches, and blue tits out of her French doors.
She is not eating and only taking sips of water, but sometimes wakes up and says something perfectly lucid.  She doesn't seem at all anxious or fearful.  I have told the nurses she is not one to press the bell or make a fuss so they may need to check on her if we are not there.  I am trying to give up any role of being a nurse and just be a daughter.  
Josie

12 th February

It's lucky I have a big family as we all sit around the hospice bed like a tribe of gorillas while Vick dozes.  She doesn't like a lot of fuss and doesn't like to be given choices.  She is taking sips of water or sucking bits of ice but doesn't want to eat.  She has a syringe pump with some morphine and an anti-sickness drug in but the hospice has given very cautious doses and she is sometimes a bit uncomfortable I fear.  We have some poetry books around, some massage oil, and can make regular cups of tea in the kitchen next door.  The donkeys there are called Dudley and Dylan, and we keep discussing boys names for my new great-nephew soon to be born; Vick thought he should be named after one of the donkeys.  I prefer Dudley Darling to Dylan.
It feels good to come home, eat and sit by the fire knowing Vick is safe.  This is a strange time.  
Josie

Later on 11 th February

No community nurses came but Danny and all my three daughters were there and we listened to the Trout Quintet at Vicky's request while the sun poured in, and woodpeckers outside made their presence known.
The kind hospice doctor and nurses whom I know from my job persuaded me it was a good idea for Vicky to go there and she was surprisingly keen as getting to the loo is so hard and there is no sight nor sound of any carer support round the Ditchling area.
We waited for hours while Vicky slept, then two burly ambulance men came around 3pm.  I had always assumed that ambulance men just quickly bunged people in and were gone in two minutes, but these two were a delight.  They were unrushed and caring, and carefully gave doses of painkillers and anti-sickness drugs, and moved in a gentle way.  They discussed Brighton and Hove Albion's performance in detail with Tiger.  We calmly drove down the lanes to St Peters and St James, and they let Tiger and I ride with them.  I wonder if she will be a paramedic as she was interested in everything.
At the hospice, there are donkeys and well-risen cupcakes with icing and cherries and nurses who make you trays of tea and are heroines, and doctors who really listen.  Other family members came and we all relaxed.
Vick looked dignified and comfy and was pleased for us to come home and eat.  
I am feeling tearful and sad but comforted also.  Thank you for the messages.  Anyone can visit Vicky, although she is very sleepy and the disease has progressed.
Josie

11 th February

It has been a bit of a ghastly night, with another doctor coming at 2 am and giving some injections to control the nasty symptoms.  The doctor was a small black woman with the most gentle voice, and she examined Vick thoroughly and said she felt it was cancer causing all this deterioration, not any infection.  She brought with her a huge white man as a bodyguard, as he explained Ditchling can be very rough sometimes and they don't do lone working.  He was helpful with repositioning Vicky as she is finding it hard to move.  
The hospice has offered Vicky a bed, but we are waiting to see if we can get enough support in the community to stay here first.  
It is calm here with just Millie and me at the moment.  Vicky is sleeping all the time.  She seems comfortable at present, and we have suspended all arrangements. Millie and I have had porridge and tea and watched the bunnies jumping outside. I'm hoping the district nurses will come soon with useful supplies.
I know that Vick would want to reassure everyone that she is OK.
Josie

10 th February

I arrived at Vick's bungalow about 6pm today.  I had an anxious sad feeling over the weekend that things were not right as she developed a stitch like pain in her tummy.  She was asleep on the sofa when I walked in and looked grey and said she wasn't feeling good which is unheard of for Vick.  I helped her get into her pyjamas and bed, but it was hard to walk and she had pain and nausea.  I called the GP who came quite quickly and gave her an injection for nausea but had no pain relief injections on him.  Vicky is sleeping now and I'm sitting beside her.  My daughter is coming to help tonight.  I've had some supper and a cup of tea and the washing machine is on.  Vick doesn't want to go to the hospital so we are at home.
The wind outside seems to have died down, but there was a menacing bright light earlier today.  
Vick can't write her section at the moment but I read her mine, and we both send lots of love.
Josie

3 rd February

 The equipment crisis has resolved itself.  The spurned bathing machine sits sadly in the hall waiting to be collected but I love the other stuff; a little four-wheeled chariot with a seat, and the useful trolley.  I still appreciate what my brother calls The Great Mechanical Bed.  Otherwise, I am plunged in gloom over Brexit.  Saturday's Guardian said it all - a wonderful article by Ian McEwan reduced me to tears, and the farewell letters from EU countries were so moving.  
My old Nissan Micra, otherwise known as the Rust Bucket, which now belongs to granddaughter M, broke down in the week.  What a disaster.  In spite of all its dents and bumps, it is a car with a heart of gold.  She has decided to get it repaired and will continue to bail out the rainwater when it collects in the footwell.
Healthwise I've decided not to have any more scans.  I am very happy sitting on the sofa.
Vicky.
Here we are.  I've almost moved into Vicks it feels like, although today due to her new call bell around her wrist she says she would like to try a night alone on Wednesday.  We agreed I could tuck her up in bed perhaps after doing various tasks then arrive first thing in the morning again for breakfast.  I am very happy here, and we are having lovely meals and chats, but I suppose it is nice to be in one's own bed, and for Tiger not to feel abandoned.  I wonder if the cat misses me as much as I miss her in spite of her uncertain temper.  At weekends other family members and friends come, and last weekend I did some samba drumming, learnt shiatsu massage and had a sauna on the beach so I'm not just a Carer.  
When I'm here in Ditchling I sometimes walk around the block to stretch my legs and love the puddles and the oak trees and the mossy smelling twittens and the quiet sense of being under the South Downs.  
I had some Guinness and some red wine with Danny when Dry January finished and it was delicious.  I feel I have lost the bright-eyed pure feeling of no alcohol for 31 days, but I'm ever so pleased January is over.  
Inside Number 9 starts tonight which I usually enjoy.  Better than Love Island anyway.
Josie