Early Monday

After another 7.5 hours teaching yesterday, it's not just my brain which hurts!! :o)

Saturday

After 7.5 hours teaching today ... my brain hurts!!!

F-F-F-Friday

Seeing the family on Wednesday was BRILLIANT!! When she met me, my great-niece pointed at me & said ... "That". So, clearly, I'm not as little as I thought I was!! It didn't take her long to get her tongue round "Julu", though - so my "That" days may already be over.

Her Grandfather was GUTTED. "She's known me all her life," he said, "& I'm still 'That'."

We went to the new, re-vamped St. Pancras & had our photos taken with the John Betjeman sculpture; then to the British Library for lunch; then to Euston where we put them on the bus to the hospital & waved them off as they headed south. I'm told they all spent the afternoon in the local park, next to the hospital, "& played with the swings ... & LEAVES ... & things" (an in-joke, sorry).

Billy's coming down again but her temperature's "spiking". I was told this was likely after Tuesday's procedure - but no one told her. This "need to know" approach is getting ridiculous - since when did the patient NOT need to know things like that???

I've started to fill the fridge with nice things (rather than the bare necessities which is all I've been running on lately) & will get the bedding ready to change for her arrival back into the bosom of the family - & the family cat.

... Talking of which ... Laura's going to have to get used to having someone else sitting in HER chair. It never was "her" chair, of course; she's always had her own chair - covered with soft cat-friendly fabric & with her favourite toys at hand (sorry, at paw) - but will she sit there?? Will she, heckerslike!! ANYONE else's chair is preferable - particularly if they're just about to sit on it.

A Tough Week

It's been a week since I posted. A very tough week.

The BIG OP was cancelled after the pre-op laparoscopy. I don't want to go down the route of how we were "told" (how we "found out" more like); it's not a good route to go down.

But - some good news - the metal stents are now in & are "well-placed for optimal drainage". The procedure was long, painful & very tough on my poor sis. But the damn things are now IN.

Today I went by train from Victoria. Remind me not to do that again, please. There are only 2 trains per hour & there was a group of people on the train to whom I wished to scream (before we'd even left the station) "Have any of you EVER in your ENTIRE LIVES had ONE tiny, infinitesimal moment when you've SHUT THE **** UP??"

But I'm British, so - of course - I didn't.

The bus from Holborn may take forever but at least all I have to do is get on & sit there (oh, & get off again - I almost forgot that stage).

Tomorrow is due to be an exciting day!! My great-niece is bringing her family to visit my sis. I'm going to meet her, her mother, father, grandmother & grandfather at Kings Cross in the morning & then put them on a bus for the hospital. She has a wonderful attitude towards language (my great-niece, that is). She's 18 months old & has already concluded that, if you're not sure you can pronounce it, don't say it; once you know how to pronounce it, say it often.

As a result, her grandparents are currently called "That" & "That" (until she learns how to pronounce "Grandma" and "Granddad"). She hasn't tried calling me anything yet but, as her granddad's little sister, I've dubbed myself "Little-That".

I'm so looking forward to seeing them all.

Love to you all from Little-That.

xxxx

THE BIG TUESDAY

She phoned me at 8.30 this morning & said: "They're coming for me in half an hour".

We've been advised not to go to the hospital today; timings can go all to pot & they need to do what they need to do.

See you tomorrow, sweetie.

xxxx

Monday (Pre-Op?)

Billy's playing games - silly Billy!! Down to 92 yesterday; up to 102 today. But the docs don't expect that to alter their plans for surgery.

So ... subject to emergency liver transplants overnight, the op's on schedule for tomorrow.

Night, night, sis. Sleep well. See you tomorrow.

Love you lots

xxx

Sunday Evening

Two straight hours of "Murder, She Wrote" on Alibi, followed shortly by two hours of Miss Marple on ITV - what excellent therapy!! :o)

Sunday - Later

Just heard from Billy; he's shrunk to a mere 100.

Go, Billy - go, go, go!!

Sunday Update

Lin's party did do me good - but I was so hyped up I couldn't sleep &, when I did, I had the sort of dreams you wouldn't wish on your worst enemy. It's left me feeling drained & shaky today.

I really wanted to go & see sis today but she's tired, I'm wobbly & we've all agreed I should stay home with Laura (who is now hiding in the wardrobe, so she's clearly feeling insecure as well).

Damn bad dreams!! Damn, damn, damn!!

Saturday Evening

Billy's gone really quiet on us lately, but the docs are still aiming for Tuesday, so I assume the little blighter is still in retreat.

There's a new member on the CCF website who's from Cornwall & posted this morning about having had a bile-duct resection recently. She said; "my surgeon says the operation was a success & hopes it's a cure". Oh, what wonderful words - they were balm to my battered & bruised psyche!!

Fingers, eyes, toes & everything else crossed for you, too, Val in Cornwall - as well as for my lovely sister's op on Tuesday.

It's Lin's 50th today so I'm going to help her celebrate. Jean thinks it will do me good - & I think it will, too.

Talk to you all tomorrow.

Friday

Billy, Billy, where are you? How are you doing, Billy-Boy?

(No news on Billy today.)

BUT the docs are still talking about the big op on Tuesday. She's been told it's very unusual for surgery to be an option with a diagnosis like hers - it's all down to the individual surgeon & the individual patient. This surgeon believes the op is an option for this patient. That has got to be a seriously positive sign!!!

Mum & I went shoe shopping today in Covent Garden. It was a delightful afternoon. Not only did we find shoes but we found a good place to lunch & then a great place to find presents for those who've been in hospital for a long time.

My sister's ward-mate, who's been in hospital 9 weeks, is due to celebrate her 40th birthday (whilst still in hospital) next week. Mum found the perfect card in The Poster Shop on Neal Street & I found THE present. Where else to go for fun & frivolity (on the present front, that is) than OCTOPUS - also on Neal Street? I so like that shop!! It's truly great.

Anyway, we found card, present, lunch, shoes ... & then went home to collapse.

Today was good. Today I feel hopeful, optimistic & ... broke!!

Thursday Evening

Still no news on Billy, but I had a lovely afternoon/evening with my lovely sis. She had lots of visitors & just radiated energy. I think we all left feeling positive & uplifted but I know it will have taken a lot out of her.

The docs said this morning that they're anticipating being able to operate next Tuesday. It's positive & scary & positive & scary & ... & ... & ...

She's got a lovely "visitors' book" which a friend bought her last week - plus stickers & coloured pens. Apparently, yer average guest-book is too, too drab, so her friend actually bought her a "Pet Journal" from Paperchase. In the "about me" section, there's a space for her breed details & id number (& I didn't even know she'd been chipped!!) She's currently trying to decide what breed she is. All I can say is it's a feisty breed; a Yorkshire Terrier has been mooted & I suspect that may be pretty accurate - but what's the feline equivalent? Any suggestions welcome!!

Thursday Morning

She was very tired yesterday; the drain's leaking & she needs another CT scan. No news on Billy yesterday morning, so I'm waiting to see what he's up to today. I'll visit this afternoon (after the Team Meeting & my session with the College's Counsellor) &, hopefully, will have an update later.

Mum, Jules & I went to see "G-Force" at Cineworld, but it wasn't on. Both the "What's On" flyer & the Automated Phoneline said it was ... but it wasn't. Wha'the'hell? There are more important things to get stressed about, so we went for coffee & muffins instead.

Good News Tuesday

Billy's down from 180 to 120 overnight!!

Wheeeee!! Great stuff, sis!!

Monday Evening Update

Her bilirubin level is coming down!! That means the drain's working & hopefully means surgery is going to be possible within a reasonable time.

Fingers crossed!!!

Monday Morning

It seems very strange to be writing online, so the posts are likely to be very jerky for a while, but I'd like to get to grips with it. I'm not much of a diary writer in general - although I wrote non-stop for the 3 weeks I was in hospital myself last year. Maybe I can try & treat it like I did then & forget about the fact that diaries are not generally intended to be read by others!! ;o)

Term has just started again & I've had a tough teaching weekend (I'm so out of practice!!), so I haven't had much of a chance to acclimatise but I'm hoping for some more positive news on Sue's CC today. She had the new drain put in on Friday & the doc should have been to see her by the time I visit this afternoon. If the jaundice is clearing, they should have a better idea of when they can do the big op.

Well, I reckon I need to start somewhere ...

... so I'm starting here!

Thanks to April, on the Cholangiocarcinoma Foundation website (www.cholangiocarcinoma.org), for directing me to this Blog engine - & to Gavin & Marion for encouraging me in this potentially nutty enterprise.

I've never tried blogging before but a lot's going on at the moment - & I want to do this for my mum, as well as for me. (After all, there's nothing worse than waking in the middle of the night & having nothing to read ...)