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

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 ...

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

Scan Result Day

Fingers crossed. Will post later. 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

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
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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.

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!!

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.


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/ )

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 ...

Monday, 23 August 2010

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

Sunday, 8 August 2010

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 ...

Thursday, 8 July 2010

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.

Thursday, 6 May 2010

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.