Saturday - Chemo Day 4

She has flutterings in her throat, breathlessness (but no significant increase) & the feeling that the tumour is growing ... it all sounds absolutely VILE but is fully in keeping with the Mac Nurse's warnings.

It's the tiredness which seems most debilitating, but EVERYONE says that's to be expected!!

I missed WeightWatchers this morning; I decided a sleep in would be more beneficial. ;o)

Friday - Chemo Day 3

We're into a new phase now; chemo has started. Today hasn't been brilliant but, over all, it's "so far, so good".

We met her Oncologist last Monday, then her Chemo Nurse (Hannah) this Monday & she went to be pumped full of toxic chemicals two days ago. When her GP told her she'd be "pretty busy" once Chemo started, I wasn't aware quite how literally he meant it.

She's on a 3-week cycle: Gem/Cis on Day 1 + Day 8 & then 2 weeks off (which, basically, means two Wednesdays on & one Wednesday off).

The treatment took 5 hours in all;

1. Water Tablet

2. Saline drip (half hour)

3. Anti-nausea meds

4. Gemcitabine drip (half hour)

5. Saline flush

6. Cisplatin drip (one hour)

7. Saline & mineral drip (one hour)

8. Home until next time

She said she felt nothing during the treatment & has been feeling pretty okay (apart from exhaustion) since then. Today was the first time she talked of nausea, some tingling & a bit of tinnitus.

It's all so new & so scary, but at least the treatment's started & we're on our way.

... & how am I?? ... I bought a new television (retail therapy never did anyone any harm & I'm not interested in clothes). I wonder what I'll buy next week ... ;o)

Teaching Weekend - Saturday

She's now put on an overall 1.5kg, since she came out. I was sooooo ungruntled with my own eating pattern yesterday, that she bought me a handful of Thorntons' Continental Chocs to comfort me. Some of you may consider that cruelty in the extreme, but she did succeed in cheering me up no end & I lost 0.2 kg on them; I'm now back under my acceptable limit of 5lbs over Gold.

PHEW!! Thanks, honey ... & bring on the Thorntons!!! :o)

Poll: Cholangiocarcinoma Awareness Month

Here's the link = Poll: Cholangiocarcinoma Awareness Month - click on it & vote!!

Wednesday

She's put on a WHOLE 1.1kg in the past 2 weeks, after eating chocolate (belgian, of course), ice-cream, pizza & drinking whole milk, lucozade, full-fat Lilt & 3 x Fortisip per day.

I've put on a least 3 times as much in a shorter period, after living on air & optimism.

Laura?? Don't know - but she was damned heavy sitting on my bad leg all night ...

GOOD MORNING, WORLD!! I'm actually much happier than that message sounds!! :o)

Another Monday's Arrived Already!!

I can't believe another teaching weekend is creeping up on me & I still haven't posted since the last one!!

It's been two whole weeks since she came out & she's doing well; we're all doing well, in fact. In many ways, the trickiest bit has been the fact she's under doctor's orders to regain the weight she lost in hospital - but, however hard she tries, I seem to be the one who's putting it on!! She does find it rather ironic that she should be ordered to eat for England, after all the money she spent at WeightWatchers getting her weight down in the first place, but she did lose a lot during her stay in hospital & appreciates the need to increase her energy levels before starting chemo.

I, of course, have no such reason to pile on the pounds - &, if I don't stop trying to match her intake, I'll have to start paying at WW again. I've been at my Gold weight for 2 years without ever being charged - & last week I was RIGHT ON THE BORDER ... one more measly ounce & it'll start costing me again. If that isn't an incentive, I don't know what is!! :o)

My new guest bed arrived last week & it is - without a doubt - THE most comfortable bed I've ever owned. I've been sleeping like a log every night since I got it. I had to go & buy a set of Allen Keys to put the headboard on, but - wha'th'hell - it's GORGEOUS. I'll forgive any little niggle for the sake of a good week's sleep.

Talking of sleep, Laura's started to divide her nights between my sister's bed until the early hours & then mine until I get up. The only problem with her choosing this particular arrangement is that, when it's my turn for her company, she doesn't walk round the bed to get to her chosen sleeping spot, she walks straight across me. At 4am, it's not the most restful experience to be trampled by an adult cat who is putting on weight at the same rate as her human!!!

Oh well, my new bed is calling me. I'll try & post again soon. Night, night all.

Saturday - & October Already!!

Blimey - it took FOREVER for my legs to stop aching after the teaching weekend; I had to up my painkillers in the end, which has left me feeling queasy. Hrrrumph!!! GRRRR!!!

H-O-W-E-V-E-R ... we have some GOOOOOOD news, too. She's OUT. The docs did the ward-round on Monday & said "you can go". In NHS terms, of course, it doesn't actually mean you "can" go ... it means "begone & free up this bed forthwith, if not sooner".

So, within hours of being told to begone, she bewent ;o)

And here she is - & it's SO GOOD to have her here (if a little disorientating for all 3 of us - sis, me & Laura, who's not sure whose bed to curl up on at the moment).

My new guest bed arrives on Monday. I saw it online & phoned to get some more information on it & was very impressed with the guys who run the website. When they heard why I'm buying such a good (& by no means cheap!!) foldaway bed, they did everything they could to expedite delivery. In the end, I had to reassure them that I'm not actually sleeping on the floor at the moment - I have a perfectly decent sofa bed already - I just want one upstairs which is more for "permanent" use, rather than having to make up the downstairs sofa bed every night & put it away every morning. They phoned me yesterday & said it's arrived from the warehouse, so they'll bring it round on Monday morning.

Ooooh, I can hardly wait!! I so love gadgets!! :o)

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.