♫♫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 ...

WISHING YOU A VERY HAPPY CHRISTMAS

Sue's home from the Hospice & here's the decorated tree, with lights ... Happy Christmas to you & yours, from us & ours :-D

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

Dressing The Tree

Two decorations have gone on the tree ... more to follow when I've done my marking!!

Latest Test Results Through

She's got E-COLI, for goodness sake!! Whatever next??

♫♫ 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!!

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.

Ah Ha - Did It!!

Here's the "naked" tree, referred to below :-D

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 ...

Feeding time in Guy's Hospital ...

To see Guy's Donation Box in action, click this link http://www.youtube.com/watch?v=YKrEKAyi9gw

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

The Twelfth Day in Guy's

Susan's stabilised.

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.

B****y Rollercoaster!!

GrrrrRRRRRR ... GrrrrRRRRRR ... GrrrrRRRRRRRRRRRRRRRRRRRR!!!

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 :-)

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.

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.

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 ...

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 ;)

40.3 is NOT a good number!!

14 hours' sleep ...

... works wonders :-D

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.

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.

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!!

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.

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 :)

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!!

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??

Sisters, Sisters :-)

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.

BIG Birthday!!

Happy BIIIIRTHHHHHDAYYYYY to my lovely sister!!! :-D

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

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 ...

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

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

www.justgiving.com/cholangiocarcinoma

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

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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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.

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