Thursday, 29 March 2012
Monday, 26 March 2012
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Thursday, 22 March 2012
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)
(P.S. The "real" daff I'm making at the Hospice's Carers' Group is a clay model, painted with acrylic)
Tuesday, 20 March 2012
Back In The Hospice
They're hoping this latest episode is just reversible toxicity, caused by the recent infections in her legs.
Friday, 16 March 2012
Thursday, 15 March 2012
The Cholangiocarcinoma Bomb ...
... made up of the predominant words in this Blog (courtesy of www.tagxedo.com)
Wednesday, 14 March 2012
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
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
Tuesday, 13 March 2012
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??
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.
Cellulitis or DVT??
Or both??
My heart breaks to watch her in such pain and distress.
Sunday, 11 March 2012
Sunday, 4 March 2012
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."
"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."
Thursday, 1 March 2012
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.
Many thanks for these words, Professor Einstein. I do find them very reassuring.
Wednesday, 29 February 2012
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'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.
Thursday, 23 February 2012
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.
Wednesday, 15 February 2012
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.
May the goddess Sulis Minerva smile on us all.
Friday, 10 February 2012
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.
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.
Wednesday, 8 February 2012
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
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
Sunday, 5 February 2012
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