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!!

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

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/ )

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 ...

2 Month Follow-Up

We went to see the Onc today. All very good news; cancer stable. The fact she's still well 3 months after Chemo is a very good sign & the longer they keep her off Chemo the better (as it means the Chemo has worked very well & opens more options). They'll see her in 3 more months.

I think I've been worrying about this more than I'd realised. I'm so tired now!!!

But very relieved, too :-D

It's Been A Year!!

The 1st anniversary of my sister's admission to hospital, with a suspected "severe penicillin allergy", passed last week. Next week is the 1st anniversary of the 1st time the Big C was mentioned.

On August Bank Holiday - a mere few weeks hence - we'll reach another 1st ... the day they added another C into the mix & we read Cholangiocarcinoma on her Release Form, when I took her home on a 24 hour Pass.

A Year.

She went home on Thursday ... Home to her own flat after more than 10 months here with Laura & me.

I feel weird ...

11 Weeks Post-Chemo

Well, more roller-coaster rides since I last wrote, but she's gradually getting the accumulated poison out of her body & is steadily looking - & feeling - better.

Slowly, slowly, slowly.

We've had some fevers & some nausea, vomiting, sweating & chills, but the progressive improvement is clear.

We saw the Onc for her post-chemo scan results & then for her 6 week follow-up & he was very pleased with her results; peritoneal mets can no longer be seen & the main tumour hasn't grown since the baseline scan. If it starts growing again in the longer term, they'll try this regime again; if in the shorter term, they'll try something else. He made it clear that this chemo is only one option, not the only option.

I like that man ... & I'm very, very proud of my sister.

P.S. - UK Election Day

It's both the General & Local Elections, today. I made sure I went to vote, but it's exhausting trying to save the world on your own, so I'm off to bed now. ;-)

Post-Chemo Scan Day

Scary day.

I couldn't go with her to her scan appointment & she was sure she'd be fine going alone - after all, a scan is, of itself, a mere walk in the park ...

BUT ... there was a man in the waiting area who was on his mobile, describing the size & location of all his secondary tumours - & the short prognosis he'd been given ... & this (understandably) freaked her out!!

When she got back, Laura somehow managed to lodge a claw in the needle hole left from her latest blood-test & this proved to be the final straw - my poor sis just dissolved.

She's massively over-exhausted & is sleeping now.

(Laura hasn't quite recovered from her shock either.)

Tomorrow is another day & I hope they'll both feel better after a good night's sleep.

May Day

Fever's gone!!! :-)

Birthday Week

It was my sister's birthday earlier this week & we went to Charles Worthington to have our hair cut for a birthday treat. We couldn't stay out long, as she's been feeling sick ever since her last chemo & she had to get home to bed.

She wasn't given her usual supply of steroids after her last infusion & the doctor forgot to include any in the emergency prescription the Mac Nurse asked him to provide. I don't know how much the lack of the steroids has affected her, but she's never been too much affected by post-chemo sickness in the past - & certainly not this long afterwards.

It's over a week since her last chemo & today she was very sick & had a fever :-(

LAST CYCLE - LAST DAY (Part 3)

All well. She's home & in bed. Tired, rather pale & a bit wobbly on her legs, but relieved to be back & to have got through this 6 months so well.

Looking back at the Norovirus incident, it's quite hard to remember how ill she was & how much she dreaded continuing with the chemo. It's taken a hell of a lot out of all of us, but we've all survived it.

Scan is 6th May, then Onc's analysis on the 10th.

Fingers crossed!!

LAST CYCLE - LAST DAY (Part 2)

Ooooh ... She's got a Custard Doughnut & a Cherry Danish for us to share!! FAB!!

LAST CYCLE - LAST DAY (Part 1)

Sitting on the 10th floor at Guy's. Bloods taken, tested & approved. Chemo ordered. Sis has gone downstairs to get me a biscuit. (Hope she decides on an Almond Croissant instead). :-D

WOW - IT WORKS!!!

Yay - no stopping me now!!

Off to meet Val from CCF this afternoon ... am getting very excited. (Must make sure I have a good supply of photos of Laura to show her - she's a cat fiend, too, by the sound of it.)

Sis is doing well well today & is DETERMINED nothing will come between her & her last chemo tomorrow.

Fingers crossed for a good day, a good week & a good follow-up scan on the 6th.

Pre-Last-Cycle-Last-Day!!

Just testing that my web-blogger app links to my blog (a) so I can be sure I can update from the Chemo Unit tomorrow & (b) because I still like playing with my new phone ... :-D

Day 1 - Last Cycle

It was damned hard to wake her up this morning, but we got to the hospital just as her bags of Gem/Cis were being delivered. The Chemo Unit is on the 10th floor of the hospital & the sun was pouring through the windows as they set up her cannula & IV.

Another friend is due to visit the Unit this afternoon & will ensure she's okay getting back at the end of today's treatment - so I left her, happily giving encouragement to a little baby girl who was just learning to stand & was attempting to take her first steps.

Now I'm home, I really should get down to prepping for tomorrow's class (I'm teaching at 9am) ... but, as I said, the sun's pouring in the windows & I'd much rather be doing this ... !!

Pre-Cycle 8 Day 1

Tomorrow is day 1 of my sister's last scheduled chemo Cycle. She's doing so very, very well but is feeling rather nauseous tonight. They call it "anticipatory nausea" & it's very well known. She's sleeping now. Goodnight, sis. See you in the morning. xxx

Excited Post-Script

WE DID IT - not only did we reach our goal of 2,500 fans for the CCF Facebook page by the end of March, we exceeded it!! 3,000 fans in one month!! Wheeeeee!! CC now has a massively increased public profile. Thank you to everyone. xx

End of Easter Break

Uh oh, I've gone all quiet again. Have just about pulled myself through my latest rough patch (with help from my lovely sister, mother, friends - thank you all).

Back sooooon!!! xx

CC Awareness Stickers

If you're on Facebook & you want to add a CC Awareness sticker to your profile picture, go to:

http://apps.facebook.com/fribbon/group.php?gid=5533&refer=pp

(There are 3 CC stickers to choose from - if you'd like to use a different one, click on "Find a Sticker" along the top & type "Cholangiocarcinoma" in the search box)

If you want a "physical" sticker, you can get one from CC Foundation's online store:

http://www.cafepress.com/cc_foundation/

Thank you - I look forward to seeing even more CC stickers on Facebook profiles & car bumpers!! :o) :o) :o)

Cycle 6 - Day 19

We're on the train, heading back from the hospital. The Onc is pleased & has booked her in for Chemo Cycle 7.

All going well. Phew!!

Spring's Arrived - & Marking's Finished!!!

I've had my head down, marking like fury, for weeks - but it's done now. All that's left to do is seal the boxes & call the courier to collect.

YAY!! :-D

I've finally managed to wrench myself away from the CCF Fan Page on Facebook, too ... I can't believe the rate at which fans are piling on there - it's BRILLIANT!! 61 new people joined whilst I was asleep last night (& 51 the night before) - PLUS those who join during the day. Of course, fans are arriving from all over the world - so we're all in different time zones - which adds to the excitement of it all.

We've nearly reached our initial 2,500 goal & it's showing no sign of slowing down. Fan-Tas-Tic!!!

We're off to see the Onc this afternoon, for her pre-Cycle 7 assessment. 2 Cycles to go. 4 more chemo days in all.

She's had so much energy since she recovered from the Norovirus that we're really optimistic that the treatment's really working!!! Fingers remain firmly crossed.

Kris, from CCF, is in surgery at the moment in Sweden. All my VERY, VERY best wishes to you, Kris. I'm sending LOADS of positive thoughts & hugs & good vibes to you & your family for a spectacularly successful outcome.

CCF has a Facebook Fan Page!!

If you're on Facebook, please come & join us by becoming a Fan!!

http://www.facebook.com/pages/The-Cholangiocarcinoma-Foundation/332378771195?ref=ts

See you there!! :-D

6 weeks later ...

Saw crocuses yesterday; could Spring be on its way at last?? Pleeeeeese!!

We've all had a rough few weeks. I really want to get back online but everything feels rusty (& that includes my typing fingers & my blogging brain).

Thank you to EVERYONE who's been so supportive - friends, family & my new extended Cholangiocarcinoma Foundation family, too - your messages of support have been so wonderful & have helped me log in here again today. I'll be back to talk to you all again very soon.

My sister says thank you to you all, too. (We're off to see the Onc again tomorrow to see if she can start chemo again later this week. I'll update asap.)

Love from LaLupes xxx

Thursday - 3 weeks into the New Decade!!

Gosh, it's been a long time since I updated!! The weather's been having a field day recently ... we've been snowed under, iced in & rained on over the past few weeks. As a result, I've got lots of additional work lined up, as College catches up with the scheduling disruption caused by having to close for 5 days.

My sister was very worried about Cycle 4 Day 8 (2 weeks ago) as Day 1 had been so bad - but she sailed through it (relatively speaking) & the past 2 weeks have been pretty good. It was Cycle 5 Day 1 yesterday & she seems to be coming through that reassuringly well, too. She's a bit puffy & has very warm rosy cheeks today but no temperature.

She had the weirdest 24 hour bug about 10 days ago - her temperature spiked at 37.5 but it didn't go any higher than that, thank goodness (at 38 degrees, she has to go to A&E) & she was literally streaming with cold & sweat. But the next day there was no sign of it. Last week, I went down with one, but mine's dragging on & has gone to my chest, which is a nuisance, as I keep waking myself up coughing in the night :o(.

We saw the Onc on Monday & she explained my sis' Baseline Scan results to us:

1. Lungs look clean (no metanasties - Yay!!!);

2. Location of primary tumour makes it hard to measure but they were able to measure one located between one of her stents & the neck of her pancreas, so they'll use that as a benchmark next time;

3. Peritoneum shows spots, which will also be measured & monitored.

She'll have another scan before her next Onc visit ... we both find that a scary thought ...

GREAT news, though - she was told yesterday her bloods show her tumour markers are coming down ... Wheeeeeee!! I'm so PROUD of you, sis!!!

I was due to meet another member of our CC family (from the CCF) at the beginning of Jan, but her visit had to be postponed due to the snow. That was disappointing but I hope she'll come in Feb instead & I can catch up with her then.

The garden's been full of birds this morning & I'm optimistically hoping for an early Spring ... I absolutely LURVE Spring!! (Come on you snowdrops, crocuses & bluebells!!)

:o) :o) :o)

New Year's Day!!

HAPPY NEW YEAR, everybody!! 2010's been great, so far ... long may it continue to be so!! :o)

She had a really rough chemo session on Wednesday - that was Day 1 of Cycle 4. All seemed to be going smoothly & she even got out early, but she fell asleep on the bus coming home & just felt progressively worse as the evening went on.

She was due to go with friends to Hastings the next day, to see the Blue Moon, which was scheduled for last night (no, I hadn't thought they existed, either - but they do!!). Until about 11 o'clock yesterday morning, it was still touch-&-go whether she'd be well enough to make the journey. Thank goodness for her friends, who had arranged everything so she could sleep in the car going down - & for the whole visit, if necessary. They bundled her into the car & off she went.

She came back this afternoon positively GLOWING - & full of stories of the sea & the sky & the stars & the fireworks & the moon & ... & ... & ...

I, on the other hand, stayed in London & slept through the whole thing. :o)

What a lovely, lovely way to say goodbye to one decade & hello to the next ... fast asleep. No blurring of the boundaries by being awake at midnight; no hangover to start the new year.

Bliss.

I hope we all have a great year - as happy, as content & as healthy as we can be.

xxxx