Tuesday, 5 June 2012
Friday, 1 June 2012
Tuesday, 29 May 2012
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
I love you, sweet sister. Sleep well.
XXXXXXXXXXXXXXXXXXXXXXXXXXX
Monday, 28 May 2012
Sunday, 20 May 2012
Friday, 18 May 2012
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.
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.
Friday, 11 May 2012
Saturday, 5 May 2012
Thanks, Carol
"A true friend is someone who thinks you are a good egg, even though he knows you are slightly cracked" - lol
Friday, 4 May 2012
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
Monday, 30 April 2012
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.
Here are some of Sue's birthday flowers from Friday.
Friday, 27 April 2012
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.
I may sneak in a fringe-trim and tidy before we leave.
Thursday, 26 April 2012
My Sister's Birthday Tomorrow
♫♫Happy Birthday to you,
Happy Birthday to you,
Happy Birthday, dear Sissssssterrrr!!
Happy Birthday to you ...♫♫ xxxxx
Happy Birthday to you,
Happy Birthday, dear Sissssssterrrr!!
Happy Birthday to you ...♫♫ xxxxx
Thursday, 12 April 2012
GREAT INSIGHT
"I always wondered why somebody doesn't do something about that. Then I realised I was somebody"
Lily Tomlin
Monday, 9 April 2012
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.
We've had a very happy (International) family Easter.
Monday, 2 April 2012
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
Saturday, 4 February 2012
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!!
Wednesday, 1 February 2012
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'."
"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/
Please check out this link & help us beat Cholangiocarcinoma.
http://www.ammf.org.uk/cc-awareness-month/
Tuesday, 31 January 2012
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.
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.
Monday, 30 January 2012
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.
They've given her a replacement appointment tomorrow, but I have to get her there by 09:30.
Wish me luck ... please.
Sunday, 29 January 2012
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.
Dearest friend, you & your mum are in our hearts & in our thoughts.
Trying to Book a Weekend Away
Gosh, the Royal Crescent in Bath looks sooooo tempting for a few days' break.
Eye-wateringly expensive, though ;)
Eye-wateringly expensive, though ;)
Saturday, 28 January 2012
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
The tightly-budded lilies I bought Sue last week are opening up :-D
Friday, 27 January 2012
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!!
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!!
Thursday, 26 January 2012
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.
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.
Tuesday, 3 January 2012
♫♫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
Sunday, 1 January 2012
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
Wednesday, 28 December 2011
♫♫On the 4th Day of Christmas ...♫♫
... the Hyacynth Mum gave us showed its first bloom on Christmas Day; today it's well on its way to full gorgeousness ...
Saturday, 24 December 2011
WISHING YOU A VERY HAPPY CHRISTMAS
Monday, 19 December 2011
Cat-Angel Tree Decoration
The Cat-Angel on my tree (showing in yesterday's post) came from Victoria Burnett Designs:
http://www.victoriaburnettdesigns.co.uk/products.html.
If you can't find it on the site, email enquiries@victoriaburnettdesigns.co.uk & ask for "Laura's Guardian-Angel" :-D
http://www.victoriaburnettdesigns.co.uk/products.html.
If you can't find it on the site, email enquiries@victoriaburnettdesigns.co.uk & ask for "Laura's Guardian-Angel" :-D
Sunday, 18 December 2011
Dressing The Tree
Two decorations have gone on the tree ... more to follow when I've done my marking!!
Friday, 16 December 2011
♫♫ All I Want For Christmas ... ♫♫
She's back in the Hospice for "symptom control". I've put them under strict instructions to sort out those b****y symptoms quickly & get her home for Christmas!!
Thursday, 15 December 2011
Hepatic Encephalopathy ...
... is very scary. It just comes on so quickly!! I hope she's more coherent tomorrow or I'll need to call the hospice again.
Getting Ready For Christmas
After 3 weeks in Guy's Hospital & 2 weeks in Marie Curie Hospice, Susan came home. The medical team have told her she's an "anomaly"; her cc isn't behaving at all as they'd expect it to. She's so well at the moment, long may her "anomaliness" continue!!
We bought a real tree this year; I've never had one before & I'm getting excited. Sue's planning to decorate it today while I'm at work. I've asked her to take photos of its various stages of dress. Here's the 1st pic of our "naked" tree in its new gold B&Q tree stand
P.S. The Blog App keeps crashing when I try & post the photo; I'll try uploading again later ...
We bought a real tree this year; I've never had one before & I'm getting excited. Sue's planning to decorate it today while I'm at work. I've asked her to take photos of its various stages of dress. Here's the 1st pic of our "naked" tree in its new gold B&Q tree stand
P.S. The Blog App keeps crashing when I try & post the photo; I'll try uploading again later ...
Monday, 14 November 2011
Feeding time in Guy's Hospital ...
To see Guy's Donation Box in action, click this link http://www.youtube.com/watch?v=YKrEKAyi9gw
Saturday, 5 November 2011
Valjee - from Cornwall, UK
It is with very great sadness that I must tell you that Valerie Mutton died on Thursday night. She was an amazing fighter whom I met on the CCF boards & was lucky enough to meet in person to celebrate her 50th birthday last year. Dearest Val, I don't know how I would have got through the last 2 years without you & your wonderful strength & humour. Rest In Peace, dear Val. XXX
Monday, 31 October 2011
Back In Guy's Hospital
They've drained 9 litres of ascites from her abdominal cavity since Tuesday & think there may still be a couple more litres to drain out over the next day or so.
She's lost just under 3 stone in the 5 days she's been draining.
She's lost just under 3 stone in the 5 days she's been draining.
Wednesday, 26 October 2011
Thursday, 29 September 2011
Belated Update
It's been quite a rollercoaster summer (& I'm not talking about the weather ...) but we are both doing well. Actually, we're both doing VERY well, given the circumstances.
I'll update properly soon :-)
I'll update properly soon :-)
Thursday, 14 July 2011
ERCP & After
After the scan & bloods were analysed, the Onc decided to proceed with an ERCP (camera down the throat & into the bile ducts ...) to see if there was any issue with the placing or condition of the stents.
We were told it would be a day-procedure, but I could have told them it would be a longer stay than that. Last time they had to fiddle with her stents, she was very ill indeed. This time wasn't so bad, but she still had to stay in overnight. Her lovely friend, Paul, took her in, stayed with her pre-&-post procedure & returned to collect her & bring her home the next day.
Since then, she's slept about 22 hours a day. It may be post-Chemo or post-ERCP fatigue, but it's very distressing for us both. I go into hospital for my 2nd TKR (total knee replacement) on Monday & she wants to stay here during my hospital stay & subsequent convalescence. I'm dreading leaving her here alone whilst she's so incapacitated.
Hopefully, she & her Mac Nurse (Dorothy) can come to some arrangement, which will reassure me & keep Susan's independence. I think Dorothy's due to visit again tomorrow.
We were told it would be a day-procedure, but I could have told them it would be a longer stay than that. Last time they had to fiddle with her stents, she was very ill indeed. This time wasn't so bad, but she still had to stay in overnight. Her lovely friend, Paul, took her in, stayed with her pre-&-post procedure & returned to collect her & bring her home the next day.
Since then, she's slept about 22 hours a day. It may be post-Chemo or post-ERCP fatigue, but it's very distressing for us both. I go into hospital for my 2nd TKR (total knee replacement) on Monday & she wants to stay here during my hospital stay & subsequent convalescence. I'm dreading leaving her here alone whilst she's so incapacitated.
Hopefully, she & her Mac Nurse (Dorothy) can come to some arrangement, which will reassure me & keep Susan's independence. I think Dorothy's due to visit again tomorrow.
Monday, 13 June 2011
CHEMO FINISHED :-D
We were the last to be seen, having waited 2 hours beyond her appointed time - but it was worth waiting.
After hearing about Sue's recent infection, the Onc suggested she stop Chemo now. She said 7 Cycles is good & missing the 8th won't compromise the benefits she's already received from the treatment - so stop now & let her body recover.
The Onc is sure the infections which keep clobbering Sue are coming from the stent, internally, rather than being picked up from outside. The Onc Team will talk to the Gastro Team to compare the North Mid's latest scan with Guy's previous scans & see if the stent needs changing. (Metal stents can't actually be changed, but they can be looked at, & cleaned/expanded as necessary.)
Now she's off Chemo, she's at less risk of these sudden, violent infections, although not totally risk-free. Once the stent's checked & sorted, the risk will reduce even further.
We'll know more in 2 weeks, when blood & scan results have been assessed by the Oncs, but tonight we can celebrate the start of a new period of stability.
After hearing about Sue's recent infection, the Onc suggested she stop Chemo now. She said 7 Cycles is good & missing the 8th won't compromise the benefits she's already received from the treatment - so stop now & let her body recover.
The Onc is sure the infections which keep clobbering Sue are coming from the stent, internally, rather than being picked up from outside. The Onc Team will talk to the Gastro Team to compare the North Mid's latest scan with Guy's previous scans & see if the stent needs changing. (Metal stents can't actually be changed, but they can be looked at, & cleaned/expanded as necessary.)
Now she's off Chemo, she's at less risk of these sudden, violent infections, although not totally risk-free. Once the stent's checked & sorted, the risk will reduce even further.
We'll know more in 2 weeks, when blood & scan results have been assessed by the Oncs, but tonight we can celebrate the start of a new period of stability.
Pre-Cycle 8 Onc Visit
I left Sue at the coffee bar when we got to Guy's, so she could get checked in, whilst I got the drinks (tea for me & freshly-squose orange juice for her - lol). By the time I got into Onc Outpatients, she'd already had her bloods taken & was off to be weighed!! Blimey, considering how long it took 2 phlebotomists to take blood from 10 patients last month, I was pretty gobsmacked.
However ... the speed of the pre-Onc tests has been no indicator of the clinic's turnover rate ... we're now an hour past her allotted appointment time & no sign of being called in yet ...
However ... the speed of the pre-Onc tests has been no indicator of the clinic's turnover rate ... we're now an hour past her allotted appointment time & no sign of being called in yet ...
Saturday, 11 June 2011
Home & Feeling Better
Susan came out on Wednesday afternoon, after a week in side room in the North Mid. For the last night, she'd been relegated back to the Tower, where she'd been for the whole of her 1st Norovirus episode. Fortunately, it wasn't such an awful experience for her this time.
When mum & I collected her, I really believed she wasn't well enough to come home, but after 24 hours' total disorientation, my lovely sister started to resurface from the shell of the seriously ill person she'd been.
She's watching a morning of back-to-back Time Team episodes in the other room now & life's getting back to our "new normal" ... Welcome Home, Sue ;)
When mum & I collected her, I really believed she wasn't well enough to come home, but after 24 hours' total disorientation, my lovely sister started to resurface from the shell of the seriously ill person she'd been.
She's watching a morning of back-to-back Time Team episodes in the other room now & life's getting back to our "new normal" ... Welcome Home, Sue ;)
Saturday, 4 June 2011
Friday, 3 June 2011
Thursday, 2 June 2011
LATER ...
They've decided to keep her in for at least one more night, as her blood pressure is so low. She's in a side room "for her own protection"; she'll hate that.
They're being incredibly thorough. Before I left this morning, they took her off the saline drip & put her on a mix of saline & potassium, as her potassium level was quite low. Then, this morning, they gave her a CT Scan & got in touch with Guy's Onc Dept. If Guy's want her transferred to them, North Mid will arrange it.
They're doubting it's a bacterial infection on this occasion but are suspecting either a reaction to last week's Chemo, or our old friend the Norovirus.
I'm SOOOO DIZZY!! I got home at 06:30 this morning & managed to sleep until 10:00 but I feel totally jet-lagged. Still, I always feel hospitals are foreign countries - with A&E Depts being on another planet entirely - so it's not really surprising.
They're being incredibly thorough. Before I left this morning, they took her off the saline drip & put her on a mix of saline & potassium, as her potassium level was quite low. Then, this morning, they gave her a CT Scan & got in touch with Guy's Onc Dept. If Guy's want her transferred to them, North Mid will arrange it.
They're doubting it's a bacterial infection on this occasion but are suspecting either a reaction to last week's Chemo, or our old friend the Norovirus.
I'm SOOOO DIZZY!! I got home at 06:30 this morning & managed to sleep until 10:00 but I feel totally jet-lagged. Still, I always feel hospitals are foreign countries - with A&E Depts being on another planet entirely - so it's not really surprising.
Day 21: Cycle 7
Another spiking fever - her temperature shot up to 40.3 from a standing start in less time than it's taken me to type this. I woke to the sound of retching at 01:00 this morning & found her lying in vomit. It took me no time at all to call out the cavalry & get her to A&E.
It's 02:45 now; Susan's on an antibiotic drip at the North Middlesex Hospital with her temperature starting to come down; I'm surprisingly awake for having had only 1.5 hours sleep ... & 2 more paramedics are patrolling north London wearing CC wristbands.
It's 02:45 now; Susan's on an antibiotic drip at the North Middlesex Hospital with her temperature starting to come down; I'm surprisingly awake for having had only 1.5 hours sleep ... & 2 more paramedics are patrolling north London wearing CC wristbands.
Thursday, 19 May 2011
Cycle 7 has started
It's only a week late, but it feels so much longer.
Sue wasn't feeling well this morning, but her bloods were "normal" (i.e. within acceptable limits) & the Chemo Unit said it was okay if she went in later, so she rested a bit more & then made her way to Guy's at London Bridge.
This is the penultimate cycle - & it's finally started :-)
Only one more cycle after this one :-)
Keep going, my lovely sis - you're doing soooo well & I'm soooo proud of you!!
Sue wasn't feeling well this morning, but her bloods were "normal" (i.e. within acceptable limits) & the Chemo Unit said it was okay if she went in later, so she rested a bit more & then made her way to Guy's at London Bridge.
This is the penultimate cycle - & it's finally started :-)
Only one more cycle after this one :-)
Keep going, my lovely sis - you're doing soooo well & I'm soooo proud of you!!
Cycle 7: Day 1?
Susan's still not feeling well. I think she's been jolted by the low blood count diagnosis, too. Her white cells have never been a problem before.
Not sure if Cycle 7 will start today or be further delayed.
Will post later.
Not sure if Cycle 7 will start today or be further delayed.
Will post later.
Monday, 16 May 2011
A Further Postponement
The hospital says Susan's "little soldiers" (I assume they're referring to her white blood cells) aren't functioning properly, so they're still reluctant to drip more toxins into her. They reckon a few more days should see her right, so she's going back for a further blood test on Wednesday, with a view to restarting Chemo on Thursday.
This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.
She's coping well :)
This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.
She's coping well :)
Thursday, 12 May 2011
Cycle 7 Postponed
She went to Guy's yesterday to start her penultimate cycle, but they've put it off until Monday, as she has another infection. She's back on antibiotics, so that should sort it out fairly quickly, but the delay has put her end-of-Chemo-&-Big-Birthday celebrations back yet again, which is upsetting for her.
On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!
On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!
Monday, 9 May 2011
Pre-Cycle 7 Check-Up
Nice, chilled journey to the Onc, as we had enough time to get the local Overground train (empty at this time of day), rather than playing sardines on the tube - lol.
We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.
The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.
Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.
We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.
********************
It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??
We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.
The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.
Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.
We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.
********************
It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??
Thursday, 5 May 2011
Thursday, 28 April 2011
My lovely sister's BIG BIRTHDAY
Susan celebrated her significant birthday yesterday. Her Oncologist had done his best to rearrange her chemo date so she had a chance of being nausea-free on her birthday, but it wasn't possible, due to a fortnight crammed to the gills with Bank Holidays (Good Friday, Easter Monday, Royal Wedding, Spring Bank Holiday ...)
So ... if she couldn't have a birthday celebration without chemo, she decided she wouldn't have chemo without a birthday celebration.
I bought her a big cake, parceled up some napkins, paper plates, forks & a knife & she took her birthday into the chemo unit & had a party there!!
Those of you who know me on Facebook may have seen the photos & will already know how successful this was. I was afraid that some people may be offended at the prospect of "frivolity" in such a sensitive place, but no one was. The staff & patients all shared her cake & wished her a very happy birthday.
She has asked me to thank everyone who has been so kind, empathetic & supportive since her diagnosis 18 months ago & particularly to thank those cc friends who posted birthday greetings on my Facebook Wall.
THANK YOU for making my lovely sister's BIG BIRTHDAY such a rip-roaring success.
So ... if she couldn't have a birthday celebration without chemo, she decided she wouldn't have chemo without a birthday celebration.
I bought her a big cake, parceled up some napkins, paper plates, forks & a knife & she took her birthday into the chemo unit & had a party there!!
Those of you who know me on Facebook may have seen the photos & will already know how successful this was. I was afraid that some people may be offended at the prospect of "frivolity" in such a sensitive place, but no one was. The staff & patients all shared her cake & wished her a very happy birthday.
She has asked me to thank everyone who has been so kind, empathetic & supportive since her diagnosis 18 months ago & particularly to thank those cc friends who posted birthday greetings on my Facebook Wall.
THANK YOU for making my lovely sister's BIG BIRTHDAY such a rip-roaring success.
Wednesday, 27 April 2011
Tuesday, 26 April 2011
Happy Easter!!
We had a lovely Easter, blessed with glorious weather & good friends. Thank you all. My sister (I'll give her a name now, for those who don't know - Susan) got lots of eggy things & I got none - serves me right for telling everyone I want to lose a bit of weight!! Still, she's a generous soul & shared some of hers with me - other bits I managed to nick when she wasn't looking, but please don't tell her that ;-)
North Mid A&E didn't find any infection on our last visit & sent her home, but when we saw the Onc at Guy's Hospital a few days later, he put her on more antibiotics, ordered an ultrasound scan & told her it was probably good ol' Krebsiella Pneumoniae again :-(
She had the ultrasound 10 days ago & the diagnostic medical sonographer (as Yahoo Answers tells me is the correct title of the technician who performs ultrasounds) said her ducts showed increased dilation on the left side of her liver, which could be the result of (a) stent movement (b) tumour growth or (c) tumour shrinkage, causing other organs to shift & prevent bile drainage.
He said she has a good blood supply to the liver & not much fluid in the abdomen, both of which are reassuring signs.
When Sue went for Chemo last week (Cycle 6; Day 1), a doc came to see her & told her not to listen to anyone other than an Onc, as the dilation shown by the ultrasound was actually exactly the same as last time ...
The bloods taken at A&E showed a bilirubin reading of 66 - clear jaundice level - but her pre-Chemo bloods showed Billy has dropped to 10 (which is far lower than mine & I'm supposed to be relatively normal!!)
Since last week's Chemo she's had a rough time & is feeling the effects of the prolonged toxicity. They drip more poison through her veins tomorrow - another 5 hours' worth, poor thing - & the added "insult" is that tomorrow's her birthday!! The Onc was brilliant & tried to change the day to Thursday, to give her a chance of having a nausea- free birthday, but with all the Bank Holidays over last week, this week & next week, there's no room in the Chemo Unit for her on any other day than her designated one. So we'll join her at the Unit tomorrow & we'll all celebrate her BIG birthday (yes - it does end with a zero!!) there :-D
North Mid A&E didn't find any infection on our last visit & sent her home, but when we saw the Onc at Guy's Hospital a few days later, he put her on more antibiotics, ordered an ultrasound scan & told her it was probably good ol' Krebsiella Pneumoniae again :-(
She had the ultrasound 10 days ago & the diagnostic medical sonographer (as Yahoo Answers tells me is the correct title of the technician who performs ultrasounds) said her ducts showed increased dilation on the left side of her liver, which could be the result of (a) stent movement (b) tumour growth or (c) tumour shrinkage, causing other organs to shift & prevent bile drainage.
He said she has a good blood supply to the liver & not much fluid in the abdomen, both of which are reassuring signs.
When Sue went for Chemo last week (Cycle 6; Day 1), a doc came to see her & told her not to listen to anyone other than an Onc, as the dilation shown by the ultrasound was actually exactly the same as last time ...
The bloods taken at A&E showed a bilirubin reading of 66 - clear jaundice level - but her pre-Chemo bloods showed Billy has dropped to 10 (which is far lower than mine & I'm supposed to be relatively normal!!)
Since last week's Chemo she's had a rough time & is feeling the effects of the prolonged toxicity. They drip more poison through her veins tomorrow - another 5 hours' worth, poor thing - & the added "insult" is that tomorrow's her birthday!! The Onc was brilliant & tried to change the day to Thursday, to give her a chance of having a nausea- free birthday, but with all the Bank Holidays over last week, this week & next week, there's no room in the Chemo Unit for her on any other day than her designated one. So we'll join her at the Unit tomorrow & we'll all celebrate her BIG birthday (yes - it does end with a zero!!) there :-D
Monday, 4 April 2011
Back in A&E
North Mid A&E is becoming rather too familiar to us lately. She's been doing pretty damn well, over all, but her temperature shot from 37 to 39 degrees within the space of half an hour this evening - so ... here we are again.
She finished Chemo Course 2; Cycle 5; Day 8 on Thursday (well, it was Day 9 actually, but her bloods got lost between the blood unit & the testing lab on the Wednesday, so they'd had to postpone treatment for a day). Oddly, it was after Cycle 5; Day 8 of Course 1 (February last year) that she had her first "episode", culminating in a dash to the North Mid, accompanied by wailing sirens (theirs) & projectile vomiting (hers).
We've been moved to an Examination Room & she's having her bloods taken (they seem to have found a vein at last; it's never as easy as they think it will be). She looks very pale & rather waxy, but her temp does seem to be coming down.
(My phone battery is running low - will conserve it & update later ...)
HA!! I've found a spare power socket in a corner & am sneakily "appropriating" NHS electricity to charge my little "lifeline to the outside world" :-D
... Back Soon ...
She finished Chemo Course 2; Cycle 5; Day 8 on Thursday (well, it was Day 9 actually, but her bloods got lost between the blood unit & the testing lab on the Wednesday, so they'd had to postpone treatment for a day). Oddly, it was after Cycle 5; Day 8 of Course 1 (February last year) that she had her first "episode", culminating in a dash to the North Mid, accompanied by wailing sirens (theirs) & projectile vomiting (hers).
We've been moved to an Examination Room & she's having her bloods taken (they seem to have found a vein at last; it's never as easy as they think it will be). She looks very pale & rather waxy, but her temp does seem to be coming down.
(My phone battery is running low - will conserve it & update later ...)
HA!! I've found a spare power socket in a corner & am sneakily "appropriating" NHS electricity to charge my little "lifeline to the outside world" :-D
... Back Soon ...
Monday, 14 February 2011
Scan Result
Cancer stable & tumour marker coming right down but she had another "episode" in Outpatients. They think the recurrent infections may be coming from the stents & want to see her next week before restarting Chemo.
She's exhausted & gone to bed. I'm shattered from the waiting & may be heading "up the apples" myself, before too long.
Good Night!! X
She's exhausted & gone to bed. I'm shattered from the waiting & may be heading "up the apples" myself, before too long.
Good Night!! X
Saturday, 12 February 2011
AN EVEN MORE MASSIVE THANK YOU!!
Since my last post, donations have continued to flood in from Bloomsbury & Moorgate staff, reaching £325 in less than 48 hours. These donations, together with earlier gifts from family & friends, shot us up to our initial £500 target by mid-this-afternoon.
I'm finding it hard to find the words to express my delight & gratitude for all this generosity. A very big Thank You to everyone who has already contributed & to everyone who will still do so.
Yes - our first target has been smashed, but the fight still goes on. In fact, I've decided to up the ante by raising the target!! Sneaky, I know - but cc doesn't stop at £500 & neither should we.
Please remember to pass the link on to friends & family - let's show Cholangiocarcinoma that it made a big mistake when it decided to mess with us ... X
Thursday, 10 February 2011
www.justgiving.com/cholangiocarcinoma
A massive THANK YOU to my friends at the College of Law (London Bloomsbury & London Moorgate branches). Over £200 donated in less than 24 hours.
You are such a brilliant bunch to work with. Thank you. X
You are such a brilliant bunch to work with. Thank you. X
Tuesday, 8 February 2011
BUMS!!
Last Feb she went down with the Norovirus - this year it's Klebsiella Pneumoniae (www.answers.com/topic/klebsiella-pneumoniae). It sounds vile & there's some dispute amongst the doctors at A&E as to whether she should be admitted & put on an antibiotic drip as an in-patient, or sent home with 2 courses of oral antibiotics. So ... she's been sent home, called back & now sent home again.
She missed Chemo last week, as she felt unwell, & now isn't sure whether she'll be having it tomorrow either.
I suppose we'll just have to wait & see.
It was another 999-job when her temperature shot up to 39.8 on Friday evening &, whereas last time she was completely out-of-it, this time she fought me - & the Ambulancemen - all the way. I think, in the end, they just sweet-talked her into taking a nice trip in a nice ambulance ... Scary to realise how easily we can be sweet-talked when we're ill!!
Still, by the time we left A&E at 2.00am, two paramedics & a night-shift A&E doctor were proudly sporting the Cholangiocarcinoma wristband & promising to help get our name out there :-D
PermaLink Posted in: Uncategorized
She missed Chemo last week, as she felt unwell, & now isn't sure whether she'll be having it tomorrow either.
I suppose we'll just have to wait & see.
It was another 999-job when her temperature shot up to 39.8 on Friday evening &, whereas last time she was completely out-of-it, this time she fought me - & the Ambulancemen - all the way. I think, in the end, they just sweet-talked her into taking a nice trip in a nice ambulance ... Scary to realise how easily we can be sweet-talked when we're ill!!
Still, by the time we left A&E at 2.00am, two paramedics & a night-shift A&E doctor were proudly sporting the Cholangiocarcinoma wristband & promising to help get our name out there :-D
PermaLink Posted in: Uncategorized
Monday, 10 January 2011
Onc Update
Approval given for Cycle 3 to start on Thursday. Then another scan to see how it's going.
Back At The Onc's
I'm sitting in the Oncology Department Waiting Room at Guy's Hospital. My sister's chatting to the lady in the Dimbleby Cancer Care Drop-In Centre. I can hear laughter coming from the room, which is very nice to hear.
She's back on Chemo, having been stable for 7 months. The Oncs are pleased that the Gem/Cis combination worked well last time, so they've recommended she have another 8 Cycles of that.
She's finished the first 2 Cycles (Chemo on Days 1 & 8, with Day 21 off & Day 28 being Day 1 of the next Cycle) & it's made a noticeable difference already.
She's just come out to get the cards I've made for our justgiving site. It'll be great if we can drum up more interest in - & the funds for - research into cc.
We've been called. Will update later.
She's back on Chemo, having been stable for 7 months. The Oncs are pleased that the Gem/Cis combination worked well last time, so they've recommended she have another 8 Cycles of that.
She's finished the first 2 Cycles (Chemo on Days 1 & 8, with Day 21 off & Day 28 being Day 1 of the next Cycle) & it's made a noticeable difference already.
She's just come out to get the cards I've made for our justgiving site. It'll be great if we can drum up more interest in - & the funds for - research into cc.
We've been called. Will update later.
Wednesday, 5 January 2011
Deep Sadness Around the World
Kris Jurgens (aka Devoncat), a truly wonderful woman from Kalmar, Sweden, died last night after a fierce battle with Cholangiocarcinoma. If you search the skies tonight & see a new & particularly bright star, that'll be her. Wave to her, please, & send her our love. She inspired so many people around the world. RIP, Kris. X
Saturday, 25 December 2010
Good Lobby Result
I've just heard that last month's Cancer Research UK Lobby of Parliament achieved a victory for its early diagnosis campaign. £25million will now be made available in 2011/12 to help GPs get direct access to more tests to diagnose cancer.
I'm proud to have been part of this Campaign & am very grateful for all the support I've received from friends old & new. Looks like it may be a Happy New Year indeed!!
I'm proud to have been part of this Campaign & am very grateful for all the support I've received from friends old & new. Looks like it may be a Happy New Year indeed!!
Wednesday, 1 December 2010
LaLupes is Fundraising for AMMF
www.justgiving.com/cholangiocarcinoma - My lovely sister has Cholangiocarcinoma, a cancer of the mucus glands lining the bile ducts. Bile is a fluid which helps us digest food - its main function is to break down fats in food - & the bile ducts are tubes which carry bile from the liver to the small intestine. Because of its "hidden" location - & the fact it's very rare - it tends to be diagnosed too late for surgery to be an option.
The cause of most bile duct cancers is unknown. My aim is to raise awareness of this rare cancer & raise money to fund research into its causes. Ultimately, I hope a simple test will developed so cc can be diagnosed at a much earlier stage.
I'm joining AMMF's fight against this disease for my sister & for everyone affected by Cholangiocarcinoma, whether as patient, carer, family or friend.
Please help AMMF - www.justgiving.com/cholangiocarcinoma
Thank you!! X
Saturday, 20 November 2010
Cancer Research UK Lobby of Parliament
The Objective of the Cancer Research UK Lobby of Parliament on Wednesday 3rd November 2010 was to ask that doctors should be:
1. granted increased access to diagnostic tests &
2. asked to record accurate data on the Stage at which Patients' cancers are diagnosed.
Despite the London-wide tube strike, over 70 Ambassadors joined the Lobby. Taxis were provided for us at the main London Railway Stations, so I joined Jean & Jim (from Bingley) & Tom (from Sleaford) in a cab from Kings Cross to the Lobby Headquarters in Great Smith Street, Westminster.
The Ambassadors' briefing included talks from Harpal Kumar (Chief Executive), Sarah Woolnough (Head of Policy) & an ex-MP, Lord Willis of Knaresborough. The focus of these talks - &, indeed, of the whole day - was very much on Early Diagnosis.
Cancer is not one disease (there are 200 different types of cancer ... that makes 200 problems) & each cancer is individual, even within the same type. Cancer Research UK is the only UK charity dedicated to beating ALL types of cancer & gets no Government money. Only by funding research into both the rare & the more common cancers will everyone have a chance.
We were told the most powerful meetings MPs can have is with their constituents & that the Lobby should be about winning the hearts & minds of our MPs.
Although survival rates overall have doubled over the past 40 years, the UK's cancer outcomes are poorer than those of our international neighbours. Sweden, Finland & parts of Germany, France, Canada & Australia have better outcomes than ours. With the rarer "Unmet Needs" cancers (some examples given were; Oesophageal Cancer, Endometrial Cancer & Pancreatic Cancer), improvements in the survival rates are not so high. As we were told, "We've come a long way, but we still have a long way to go."
In the UK, 260 MPs have pledged to the Cancer Research UK's "Commit to Beat Cancer" campaign, to:
- detect cancer earlier
- provide world class cancer treatment
- prevent more cancers
- tackle cancer inequalities
- protect the UK's research base
There are so many different symptoms for different cancers & it is clear that we need to increase awareness as well as changing the culture which leads people to delay seeking medical advice; British reserve? We mustn't bother the doctor? - Pah!!
After the briefings, batches of Ambassadors congregated to walk across Parliament Square – past the entrenched anti-war protesters – towards the Palace of Westminster.
My MP, Lynne Featherstone (Hornsey & Wood Green), was not in Westminster on the 3rd, but a neighbouring MP, Glenda Jackson (Hampstead & Kilburn), was kind enough to agree to being lobbied by Lynne's Ambassadors as well as by her own. I found her rather intimidating initially (okay, I admit it - my nerves got the better of me & I froze momentarily) but she quickly thawed & proved to be a compassionate & gracious lady. She confirmed she was very happy to put our requests to Government, to write to the Secretary of State for Health & to table questions in the House on our behalf - but she was equally keen not to raise "false hopes".
The whole day was the most wonderful & inspiring experience & I'm so proud to have had the opportunity to be a part of it.
My greatest achievement? I got Cholangiocarcinoma mentioned in the Corridors of Power at least twice ... soon I hope no one will be able to say they haven't heard of it.
Cancer Research UK's Chief Executive, Harpal Kumar summed up the day beautifully; "Together, we WILL beat cancer".
(For a slide show of the Lobby, the link is http://www.cancercampaigns.org.uk/ambassadors/westminsterlobby/ )
1. granted increased access to diagnostic tests &
2. asked to record accurate data on the Stage at which Patients' cancers are diagnosed.
Despite the London-wide tube strike, over 70 Ambassadors joined the Lobby. Taxis were provided for us at the main London Railway Stations, so I joined Jean & Jim (from Bingley) & Tom (from Sleaford) in a cab from Kings Cross to the Lobby Headquarters in Great Smith Street, Westminster.
The Ambassadors' briefing included talks from Harpal Kumar (Chief Executive), Sarah Woolnough (Head of Policy) & an ex-MP, Lord Willis of Knaresborough. The focus of these talks - &, indeed, of the whole day - was very much on Early Diagnosis.
Cancer is not one disease (there are 200 different types of cancer ... that makes 200 problems) & each cancer is individual, even within the same type. Cancer Research UK is the only UK charity dedicated to beating ALL types of cancer & gets no Government money. Only by funding research into both the rare & the more common cancers will everyone have a chance.
We were told the most powerful meetings MPs can have is with their constituents & that the Lobby should be about winning the hearts & minds of our MPs.
Although survival rates overall have doubled over the past 40 years, the UK's cancer outcomes are poorer than those of our international neighbours. Sweden, Finland & parts of Germany, France, Canada & Australia have better outcomes than ours. With the rarer "Unmet Needs" cancers (some examples given were; Oesophageal Cancer, Endometrial Cancer & Pancreatic Cancer), improvements in the survival rates are not so high. As we were told, "We've come a long way, but we still have a long way to go."
In the UK, 260 MPs have pledged to the Cancer Research UK's "Commit to Beat Cancer" campaign, to:
- detect cancer earlier
- provide world class cancer treatment
- prevent more cancers
- tackle cancer inequalities
- protect the UK's research base
There are so many different symptoms for different cancers & it is clear that we need to increase awareness as well as changing the culture which leads people to delay seeking medical advice; British reserve? We mustn't bother the doctor? - Pah!!
After the briefings, batches of Ambassadors congregated to walk across Parliament Square – past the entrenched anti-war protesters – towards the Palace of Westminster.
My MP, Lynne Featherstone (Hornsey & Wood Green), was not in Westminster on the 3rd, but a neighbouring MP, Glenda Jackson (Hampstead & Kilburn), was kind enough to agree to being lobbied by Lynne's Ambassadors as well as by her own. I found her rather intimidating initially (okay, I admit it - my nerves got the better of me & I froze momentarily) but she quickly thawed & proved to be a compassionate & gracious lady. She confirmed she was very happy to put our requests to Government, to write to the Secretary of State for Health & to table questions in the House on our behalf - but she was equally keen not to raise "false hopes".
The whole day was the most wonderful & inspiring experience & I'm so proud to have had the opportunity to be a part of it.
My greatest achievement? I got Cholangiocarcinoma mentioned in the Corridors of Power at least twice ... soon I hope no one will be able to say they haven't heard of it.
Cancer Research UK's Chief Executive, Harpal Kumar summed up the day beautifully; "Together, we WILL beat cancer".
(For a slide show of the Lobby, the link is http://www.cancercampaigns.org.uk/ambassadors/westminsterlobby/ )
Thursday, 9 September 2010
The Lake District
As we're all having trouble flying at the moment, mum generously arranged for a timeshare swap, from her apartment in Portugal to a week in Cumbria. Then my sister took over the planning of our 'escape to the country'; she researched the train times & prices & organised a hire car. I was working at the weekend so she came up on the Saturday & I joined her on the Monday.
It was fabulous to be met at the station by my big sis, looking so relaxed & well, leaning casually on the door of a snazzy black car. She'd done some initial shopping, found the place & got us settled in.
She told me she'd slept for the 1st 2 days, but from the time I arrived, she was pouring out energy. We went to Keswick & were so lucky to arrive just in time for a free Working With Pastels Demo at the Cumberland Pencil Factory; even luckier, we got the last 2 tickets!! I have never been able to draw to save my life & it was so frustrating for me not to be able to translate what I saw the artist doing into something I'd be able to do ... but with a little personal guidance from the artist & his wife, it suddenly clicked. I'm seriously chuffed with the result, even if the best bits were the teachers'. My sis is a much better artist & hers looks great; I've decided they should be framed side-by-side as they look so alike & yet so (very) different.
After Keswick, we drove back via Ullswater. Wow, how beautiful it is!! I'm quite embarrassed to admit I hadn't realised we'd be located actually inside the Lake District; I'd thought we were staying NEAR The Lakes, not practically IN them.
That night it rained (but not too much) but the wind HOWLED - serious shades of Wuthering Heights (though, fortunately, no one scratched on the glass, begging to be let in).
Yesterday, we went to Thirlmere & then on to Grasmere. We visited Dove Cottage, where William & Dorothy Wordsworth lived, with Mary (William's wife), her sister & the 1st 3 of William & Mary's 5 children (they moved when Mary was expecting their 4th). Blimey it was small & dark. It is said to have inspired Dorothy's Journals, William's Poetry & Coleridge's, too - but all it inspired my sis & me to do was get outside into the daylight as soon as possible. (I read that Dorothy suffered severe depression; I'm hardly surprised.)
We'd actually planned more of a rest day for today, but it's been forced on us anyway by the nasty bout of nausea, chronic fatigue & perpetual sweating which has knocked my poor sister sideways all day. Yes, she must have done much too much over the past 2.5 days, since I arrived - but it's been brilliant ... & we still have 2 days left.
I took the car out this afternoon & went to the nearest village for supplies. It's called Greystoke, but though I looked & looked & looked ... I didn't see Tarzan anywhere ...
It was fabulous to be met at the station by my big sis, looking so relaxed & well, leaning casually on the door of a snazzy black car. She'd done some initial shopping, found the place & got us settled in.
She told me she'd slept for the 1st 2 days, but from the time I arrived, she was pouring out energy. We went to Keswick & were so lucky to arrive just in time for a free Working With Pastels Demo at the Cumberland Pencil Factory; even luckier, we got the last 2 tickets!! I have never been able to draw to save my life & it was so frustrating for me not to be able to translate what I saw the artist doing into something I'd be able to do ... but with a little personal guidance from the artist & his wife, it suddenly clicked. I'm seriously chuffed with the result, even if the best bits were the teachers'. My sis is a much better artist & hers looks great; I've decided they should be framed side-by-side as they look so alike & yet so (very) different.
After Keswick, we drove back via Ullswater. Wow, how beautiful it is!! I'm quite embarrassed to admit I hadn't realised we'd be located actually inside the Lake District; I'd thought we were staying NEAR The Lakes, not practically IN them.
That night it rained (but not too much) but the wind HOWLED - serious shades of Wuthering Heights (though, fortunately, no one scratched on the glass, begging to be let in).
Yesterday, we went to Thirlmere & then on to Grasmere. We visited Dove Cottage, where William & Dorothy Wordsworth lived, with Mary (William's wife), her sister & the 1st 3 of William & Mary's 5 children (they moved when Mary was expecting their 4th). Blimey it was small & dark. It is said to have inspired Dorothy's Journals, William's Poetry & Coleridge's, too - but all it inspired my sis & me to do was get outside into the daylight as soon as possible. (I read that Dorothy suffered severe depression; I'm hardly surprised.)
We'd actually planned more of a rest day for today, but it's been forced on us anyway by the nasty bout of nausea, chronic fatigue & perpetual sweating which has knocked my poor sister sideways all day. Yes, she must have done much too much over the past 2.5 days, since I arrived - but it's been brilliant ... & we still have 2 days left.
I took the car out this afternoon & went to the nearest village for supplies. It's called Greystoke, but though I looked & looked & looked ... I didn't see Tarzan anywhere ...
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