Christmas Day 2012

Mum stayed in the hospital for a week and was ultimately confirmed as having had a full stroke. Fortunately, she's home now and recovering very well.

It's our first Christmas since Sue died. We spent yesterday evening with her boyfriend, Paul, and had a really good time, thinking both to the past and to the future. Today, mum and I have been alone together and have had a quiet, peaceful and very enjoyable day. We miss Sue very much but her essence is evident everywhere and we both feel reassured that she is out of pain and safe from harm

Happy Christmas to all.

Julia

A further 3 hours in A&E before a doctor came to see her. She's having a brain scan done now.

Back In A&E

Mum's not well. She shows signs of having had another TIA. We waited 3 hours for an ambulance.

Back in The North Middlesex Hospital's A&E Department, surrounded by memories crowding in on me.

Mum says she can feel that Susan is very close. I can't feel her presence, but I feel her absence very, very strongly.

5 Months ...

... XXXXXX ...

A Welcome Visit

It's four months since I lost my lovely sister. I miss her so much. Today, as I opened my bedroom curtains, a robin flew at the window, stopped just the other side of the glass and hovered directly in front of me, flashing his gorgeous red breast. I didn't even know robins could hover!! Then it sat on the roof-ridge for a while - lingering much closer and for much longer than I've seen one before - before flying back into the trees.

Sue loved seeing robins in the garden. It really felt like she'd come to greet and reassure me.

It was a great way to start the day.

I Miss You, Susan

"What's the good of news if you haven't a sister to share it?" - Jenny DeVries

I had a good time in Liverpool with friends. I have so much to tell you.

I just wish I could.

XXX

3 Months

Love you so much, sis xxx

£842.42 Raised At Blooming Great Tea Party!!

Thank you EVERYONE who came or donated in lieu xxx

http://www.justgiving.com/Edenhall

I'm Co-Hosting a Blooming Great Tea Party on Sunday

I'm very excited about some of the gifts people have made and donated to sell.

I had a good cry today ...

... It does help.

Two Months ...

... Time is such a weird thing. Feels like only yesterday and yet years ago, all at the same time ...

Love you, Sue xxx

Reassurance

Had my first very unsettling dream about Sue last night; she was cross with me for going through her wardrobe and taking her clothes to the local Hospice Charity Shop. Then, as I was making lunch, I thought "no, she's not cross, she's just supervising" - and when I turned round, a feather was stuck to the bowl I'd just taken out of the fridge.

Thanks for the reassurance, dearest sis.

Carers' Group Project

7 Weeks

Miss you xxxxxxxx

Handing Back The Keys To Sue's Flat ...

... is one of the hardest things I've ever done.

I'm Enjoying Art Therapy

... and Laura posed magnificently :)

BTW, she is a Calico (i.e. Tortoiseshell and White) Tabby, in case you think I've lost all concept of what a cat looks like. She also wears a pink collar - and this is a back view :)

I Miss My Sister

Very, very much.

5 Feathers in 4 Days ...

Spotted on my way home from seeing a Bereavement Counsellor ...

Finding 4 feathers in 3 days - when I've never been a feather finder before; I'm spotting a distinct trend here. Thanks, sis. I love you, too xxx

... and this feather was not there when I put Sue's top in the washing machine this morning ...

I know there are rational explanations, but perhaps there are some "irrational" explanations, too.

Something's Going On ...

... I don't know WHAT, but I'm finding it very comforting.

It's Been a Month ...

... and I found a feather on the mint in the herb garden Sue made in front of my house

Four Weeks Today. I Miss You, Susan

I've just woken from a dream during which the phone rang. As I woke, I caught the faint whiff of perfume.

The phone turned out to be just part of my dream - but the perfume wasn't.

This Exactly Fits How I've Been Feeling

“... When you die, the energy that kept you alive filters into the people you loved. Did you know that? It's like a fire you've tended all your life, and the sparks are all scattered into the wind ... That's why we survive as long as we do, because the people who loved us keep us going.”
― Kevin Brockmeier, The View from the Seventh Layer

Sorting Susan's Flat ...

... is not easy

God Help The DSS

I took in proof of Susan's death to the local JobCentrePlus, as instructed by the Registrar of Deaths.

The conversation went:

Me - "I've come to tell you my sister has died"

DSS Advisor - (offhand) "Yeah? So what do you want from us?"

Me - (shocked silence) "An expression of sympathy would be nice ..."

At which point, Advisor's Manager stepped in and took over.

Three Weeks

Optimism?

Photographed outside Mum's flat (apartment) yesterday.

Susan's Funeral was A-MA-ZING

"Whatever happens to your body, your soul will survive, untouched..." ― J.K. Rowling

Today we celebrated my sister, Susan's life in STYLE; with colours, textures, smells, laughter, tears and very, very much love. Thank you to everyone who came, to everyone who sent messages, cards, emails, mementos and flowers and to everyone who thought of her/us today. Thank you xxx

Two Weeks

It's been hard.

Sue's Funeral is on Friday

I've chosen her outfit - going through her wardrobe was really painful - and am taking it to the Funeral Director this afternoon.

We got through the first week.

Sisters, Sisters ...

Goodnight, Sweet Sister

Susan died peacefully at about 01:15 this morning.  She fought a phenomenal battle for 3 years.

I love you, sweet sister.  Sleep well.

XXXXXXXXXXXXXXXXXXXXXXXXXXX

Call From The Hospice (12:42 am)

"Susan has taken a turn for the worse."

Update

Sue is in a coma.

In Sue's Hospice Room

The Cancer Whirlpool

I've made a collage of my latest Carers' Group project and have uploaded it, as an unlisted video, to YouTube. The soundtrack is a recording I made of the birds outside Mum's window on Monday evening.

Please click this link (not the photo):
http://www.youtube.com/watch?v=QomNCVK1AyM&feature=youtube_gdata_player

Susan is extremely ill in the Hospice.

At The Hospice

Sasha, the "Pets As Therapy" ward visitor :)

Well, My Anger's Coming Out ...

... thanks to The Marie Curie Hospice, Carers' Group.

Thanks, Carol

"A true friend is someone who thinks you are a good egg, even though he knows you are slightly cracked" - lol

Expanding My Universe?

"Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one'."

- C.S. Lewis

Back Into The Hospice

A great birthday but a very, very tough weekend. Met the new Macmillan Nurse today. I like her a lot. She was as worried as I am and organised an emergency admission for intensive symptom control.

Here are some of Sue's birthday flowers from Friday.

Treats For My Sister's Birthday

Miraculously, Sue managed to wake up this morning (it was touch and go, for a while, after the strenuous day she had yesterday) and we're now at Charles Worthington, Percy Street Branch. She's having a cut and colour. I'm sitting in a comfortable armchair, drinking tea, eating Brownies and generally chilling out.

I may sneak in a fringe-trim and tidy before we leave.

My Sister's Birthday Tomorrow

♫♫Happy Birthday to you,
Happy Birthday to you,
Happy Birthday, dear Sissssssterrrr!!
Happy Birthday to you ...♫♫ xxxxx

GREAT INSIGHT

"I always wondered why somebody doesn't do something about that.  Then I realised I was somebody"

Lily Tomlin

Happy Easter

My gorgeous German Goddaughter (aged 10) stayed with us for 5 days last week and yesterday we went out for lunch with mum and our French cousins.

We've had a very happy (International) family Easter.

Eh, I Must Be Tired

... slicing the banana into the teapot wasn't a good idea, otherwise :-/

More Hospice Art :)

Hmmmm, maybe I need to add a few leaves; my version looks like a brain :-/

I Love Spring!!

My Marie Curie Daffodils - Update

My "Real" Marie Curie Daffodil is Drying ...

... so here's a pic of my "virtual" daffodil; photographed unpainted, colour stripped out by "Colour Effects" iPad App, recoloured & framed using Colour Effects, Skitch & PS Express iPad Apps. So soothing to do. This art-relaxation-thing really works!!

(P.S. The "real" daff I'm making at the Hospice's Carers' Group is a clay model, painted with acrylic)

Back In The Hospice

They're hoping this latest episode is just reversible toxicity, caused by the recent infections in her legs.

CConfusion - Which Way To Turn?

The Cholangiocarcinoma Bomb ...

... made up of the predominant words in this Blog (courtesy of www.tagxedo.com)

A Fabulous Sentiment

"No matter how grouchy you're feeling,
You'll find the smile more or less healing.
It grows in a wreath
All around the front teeth -
Thus preserving the face from congealing"

- Anthony Euwer

Another Infection

DVT hasn't been ruled out yet, but the A&E tests have identified that Susan has definitely got an infection in both legs. They're not sure what type yet, but hopefully they'll get some antibiotics into her quickly, to start fighting the damn thing fast.

It took her 30 minutes to manage a 10 minute walk to the doctor's yesterday. She's almost completely immobile now.

This is so damn hard to watch. How much harder must it be to go through? How can anyone bear this??

Another A&E Visit ...

... I'm starting to consider moving in :-/

Cellulitis or DVT??

Or both??

My heart breaks to watch her in such pain and distress.

Spring Is Springing

Lovely Quotes - Keep 'em Coming

Another wonderful quote from the Professor. Thank you, Carol; I love it :)

"The ideals which have guided my way and time after time have given me the energy to face life, have been kindness, beauty and truth."

Tough Day

"In the middle of every difficulty lies opportunity" - Albert Einstein

Many thanks for these words, Professor Einstein. I do find them very reassuring.

A Rare Day in a Rare Month for a Rare Cancer

I went to have a blood test the other day and the nurse asked me about my wristbands and the significance of the tree symbol. I told her that my sister has a very rare cancer, called Cholangiocarcinoma, and that no one's ever heard of it. She said, "I'm in the medical profession and I've never heard of it."

I'd never heard of it either, until 31st August 2009. Even then, I didn't hear the name; I read it. my sister had been allowed home from hospital on a 24-hour pass. Sounds generous, but being a Bank Holiday, all specialist meetings at the hospital had been cancelled and there were no further tests they could carry out until the specialist teams from Kings and St Thomas' Hospitals had met to discuss her.

I read her day-release form and it said Cholangiocarcinoma in the "reason for admission" box. That was the first I'd heard of it. Until then we'd constantly been told "we don't know" when we asked what on earth was causing her to become jaundiced and to scratch her legs until the blood ran. I went and looked it up on Google. Big mistake!! Until I found the Cholangiocarcinoma Foundation in Salt Lake City, every site I looked at was terrifying, bleak and simply made me feel worse (I found AMMF quite a bit later).

Through CCF, I made some wonderful friends all over the world. The first UK-based friend who reached out to me was the gloriously vibrant and ever optimistic Val Mutton. I was also lucky enough to meet other marvellous people - including Helen Morement - through CCF and, through Helen, I discovered AMMF. I am now fundraising for AMMF and campaigning for greater awareness. I don't want anyone ever again to say they've never heard of it or to read out-of-date statistics or to feel so alone, as my family and I did when my sister was diagnosed ...

... But let me tell you about the lovely Val Mutton:

Val emailed me one day and told me she was coming to London for her 50th birthday, so we arranged to meet at Covent Garden and that's where I first encountered the bundle of energy who, until then, had simply been an online username to me (Valjee from Cornwall, UK)

We had a wonderful day and I was amazed and delighted to be invited to join her and her brother for her 50th birthday meal. I had such a marvellous time and Val became a very dear friend, by text, phone and email. She was constantly making plans to visit again but the snows prevented that and, by the time the weather stabilised, Val's health was deteriorating.

She had originally been told her cc had been found very early and that the surgery had completely removed it. No chemo was considered necessary; she was "cured". She had awful after-effects from the surgery and it appeared scar-tissue was starting to block the ducts (to me, aspects of the "cure" sounded worse than the disease). She went into Total Organ Failure in April last year and was resuscitated. She was then told she could either stay on an external drain for the rest of her life "which probably wouldn't be long" or have further surgery, which would give her a "relatively normal" life, but which she may not survive. Ever both optimistic and practical, she hoped for the best and planned for the worst. She had the surgery in November last year. She didn't survive it.

Her brother called me to give me the news and told me she had left a notepad on her bedside cabinet when she went into the operating theatre. They looked at it after she died and it contained "6 numbers to call if I don't come through the operation"; mine was one of them.

I couldn't go to her funeral but her mother sent me the Order of Service and thanked me for being such a good friend over the past 2 years. Dear Val - I thank YOU with all my heart. I would have totally lost all humour and perspective if it hadn't been for you. I miss you and your outrageous sense of humour so much.

If you can help us help AMMF, please copy one of these links and paste it into your internet browser address bar:

www.justgiving.com/cholangiocarcinoma
or
www.justgiving.com/bileductcancer.

Thank you.

I Joined a Carers' Group at the Hospice

We had tea & biscuits & drew flowers. I decided to be contrary & have flowers & draw tea & biscuits - lol.

A Wonderful Break in Bath

This is the Sacred Spring of Sulis Minerva (Romano-British goddess of Wisdom, Healing & several other things), at Aquae Sulis (aka Bath, Somerset).

May the goddess Sulis Minerva smile on us all.

Mum Has Been Discharged

The hospital is happy with her progress & has let her loose. She called me to say she got home "just in time for The Culture Show". Must make a change after 3 days of "hospital TV" - lol.

It's such a relief to know she's better. It was so scary when she couldn't breathe.

A Better Forecast

Mum's doing very well. Her chest's still rattling painfully, but she's breathing more easily. Hopefully this Met Office forecast for south-east UK will be an omen of sunnier times to come.

Back In North-Middlesex Hospital

It's Mum's turn, this time. She's got a severe chest infection & respiratory problems. It's this incredibly cold snap, I reckon.

She's just had a syringeful of arterial blood taken, to test oxygenation. It was so painful for her to have done - & for me to watch - that we had to hold hands & sing wartime songs together.

Get Well Soon, Mum xxx

Please Support AMMF

Join the 2012 CChallenge: www.ammf.org.uk/take-the-cchallenge/

What a Contrast!!

It was 12 degrees C a mere few days ago, with roses & camellias in bloom. Now it looks like I've just walked out the back of the Wardrobe & am about to bump into Mr Tumnus!!

Lunch With The Family

Susan meets a puppy - lol

CC AWARENESS MONTH

Be Aware; Be Very Aware ...

The Camellia Bush (2 posts below this)

Very many thanks to Carol for this lovely comment:

"The poetic meaning of camellias is gratitude and perfection, also listed in plant meanings is 'you are a flame in my heart'."

February is Cholangiocarcinoma Awareness Month

As I started writing this, I could hear next door's clock chiming midnight - so here in the UK, our 2nd CC Awareness Month has begun.

Please check out this link & help us beat Cholangiocarcinoma.

http://www.ammf.org.uk/cc-awareness-month/

Back In Marie Curie Hospice

Susan's been readmitted for symptom control & I'm very relieved. She was in so much pain this morning but once she was allocated a bed & dosed up with painkillers, steroids & anti-sickness meds, she was able to sleep.

I sat by her all day, doing my student reports & marking Mock scripts as she slept.

When Mum arrived to sit with her, I walked down to Belsize Village & came across this amazing bush on the way. Blooms like these in January are truly amazing.

Another Infection??

She can't wake herself up &, having been woken by someone else, can't stay awake. Despite 4 phonecalls & 2 repeating alarms (which I set before I left for work this morning), Sue missed her follow-up appointment at the Hospice this afternoon.

They've given her a replacement appointment tomorrow, but I have to get her there by 09:30.

Wish me luck ... please.

Sad News

Sadly, before she could get home to Canada yesterday, our friend's mother died, without regaining consciousness.

Dearest friend, you & your mum are in our hearts & in our thoughts.

... So Are the Gerberas

And thank you, too, Evelyn :-D

The Daffs Are BLOOMING ...

Thank you, Susan & Camilla xx

Trying to Book a Weekend Away

Gosh, the Royal Crescent in Bath looks sooooo tempting for a few days' break.

Eye-wateringly expensive, though ;)

Tough Day

A dear friend's mother is unconscious in hospital in Canada, so she's had to drop everything here & run. We're thinking of you, sweetie.

Sue is SOOOO Much Better today

The steroids are working their magic & she's seriously bouncy today. No hyperactivity last night, either, so I'm feeling bouncier, too.

The tightly-budded lilies I bought Sue last week are opening up :-D

Tests All Done

Ater the tests were concluded, we went for a walk. This is a photo of us both in Hampstead, heading back to the train.

She's been given steroids for the pain but took them rather too late in the day ... I think we're in for a hyperactive night!!

Tests Today

We're up at the Hospice now; what a beautiful day.

Not A Good Day

Susan's very confused today (as in toxin build-up). The Hospice has no available appointments; the Macmillan Nurse is on leave & the rest of the Palliative Team is snowed under, so no one can visit; our GP "doesn't have the facilities to carry out the necessary tests" so told us to go to A&E in the morning. The Macmillan Nurse can't understand why the GP won't visit; the Hospice thinks it's crazy for Sue to spend hours at A&E when any tests could be done there ... & me?? I feel like a punchbag & am blummin' exhausted.

And what are those "necessary tests"??

1. Liver function

2. Renal function

3. Chest infection

4. Urine infection

If all those tests are clear, they should schedule another scan.

♫♫On the 8th Day of Christmas ...♫♫

The Covent Garden Tree

Yesterday, Sue & I went to the Apple Store in Covent Garden & spent the best part of the day learning about her Mac Air & my iPad.  Then we went for lunch.  What a brilliant day!! :-D

HAPPY NEW YEAR

May 2012 be a kind year. Heartfelt thanks to all friends & family for your wonderful support over the past 2.5 years. Susan is feeling good & looking great - long may it continue :-D