Christmas Day!!

We've had the most lovely Christmas Day. Lunch was wonderful - home-made leek & potato soup to start, then honey roast gammon, REAL baked potatoes (oven, not microwave), sprouts, parsnips & carrots. My sister did the cooking; mum & I fought over the washing-up. I won.

Then ... Doctor Who.

I haven't updated this blog for a while - but I'm pleased to say that's a sign that all's progressing well. The whole of the 3rd chemo cycle passed smoothly. Her energy levels fluctuate, but in general they're pretty-damn good. It was great to hear that the chemo hasn't affected her taste this time round. The prospect of that wonderful lunch tasting of metal just doesn't bear thinking about!!

We had very sad news earlier in the week when we heard 2 of her friends from hospital hadn't made it to Christmas. They were both so very ill & neither was a candidate for chemo. Dear Rosa; Dear Janet - you are very much in our thoughts. Our love to you & your families.

We saw the Oncologist on Wednesday. She was very pleased with how well my sister is tolerating the treatment & has given her the go-ahead for Cycle 4 to start next week. There had been talk of it being put back a week, as the Onc didn't think they'd be able to slot in her follow-on appointment before the new year & the next cycle can't start until after the Onc has seen her. I'm very glad there won't be a break in the cycle after all.

I've been very busy with teaching cover over the past few weeks & was very pleased with my pay-cheque this month. Work should drop off dramatically in the new year, so it's good to have that extra cushion in the Bank. Mind you, I wasn't expecting any work at all this academic year, so maybe I shouldn't make any assumptions for the new year; I'll just sit back & see what work the colds & 'flu seasons throw my way.

Happy Christmas to everyone. I hope your Day was as lovely as mine. xxx

Day 1 of Cycle 3

Today's chemo seems to have gone well. She's awful tired but doing really well.

Thursday Evening - Start of Party-Season!!

This has been a MUCH better week.

The taste changes my sister has been experiencing came through quite strongly during the early part of this week, though - nothing tasted nice at all. She kept asking if my food was completely tasteless, too - but nope, mine wasn't.

I did solve part of the "anything mint-flavoured burns my mouth" problem, though - I bought her "Punch & Judy" children's toothpaste (both the Strawberry & the Tutti-Frutti flavours) & it works!!! (Sadly, Sensodyne also has mint-flavouring, Jean. I couldn't believe it when I saw that ... even their children's version does.)

We both had Swine 'Flu jabs on Monday - sis has to have TWO, because of her weakened immune system & I had to have one, as a Carer. My whole body turned to lead & I felt absolutely lousy for 24 hours. I'm much better now, though & we're off to a neighbour's birthday party in our pre-Christmas glad-rags.

I had a great afternoon, bra shopping. There was a lovely fitter in the M&S changing room who - very diplomatically - pointed out that I was wearing the wrong bra-size. After being properly fitted, I feel very svelte & chic. Gok would be proud of me!!! :o)

Yesterday, when I was suffering post-'flu-jab lethargy, sis made a wonderful meal - with Mash & Red Cabbage - & was over the moon when she found she could actually TASTE it. Brilliant news!! Maybe the numb tastebuds are an immediate post-chemo side-effect, rather than a long-term problem.

Another brilliant highlight of this past week was talking to Pauline from the CC Foundation. It was fantastic to talk to her & hopefully, we'll meet after Christmas & try & do something together to sort out the lack of communication about CC at the specialist hospitals. There are such wonderfully supportive people on that marvelous CCF website, all spiraling along the same sod-awful emotional roller-coaster, & it makes me feel much less alone knowing they're out there.

Bless us all ... xx

A Gusty Monday Afternoon

Blimey - what's the weather doing today?? She's just set off for the tube (on her way for an aromatherapy massage at the hospital) & she was almost blown down the road by this incredible gust of wind!!

It's stopped raining for the moment, though, so I may be able to get to work without being drenched ... if I'm lucky!!

Late Saturday

I needn't have worried - a brilliant evening, with brilliant mates. I feel much better tonight :o)

Saturday - Day 4 of Cycle 2

It's been an upsy-downsy week; that's the way it goes, I suppose.

We went to see the Oncologist on Monday & she's put on 11lbs since she last saw him. The Dietitian was very surprised & very pleased & the Onc said: "if the cancer's really bad, it's often impossible to gain weight", so that sounds promising. (She has understandably mixed feelings about the weight gain, but she certainly looks good!!)

The Onc asked her if she's started losing her hair yet ... that "yet" was a shock as previously everyone on the medical teams has said she isn't expected to lose it. He said she's unlikely to go bald but she will experience hair loss within the next week or two. That did come as a blow to her & a surprise to me, too.

He was able to throw some light on the cold damp nose she's been experiencing since she came out of hospital. He said cancer itself can cause sweats & the chemo drugs also cause thinning of the mucus membranes.

The visit was very hard on us both; even though he told us stuff I'd known before, it was still like hearing the diagnosis afresh, over & over again.

Cycle 2 started on Wednesday & this time it was clearly a bad experience for her. She felt very, very low - even despairing - all Wednesday evening. She's been coping well since Thursday, but there's no repeat of the hyperactivity she had after the last cycle. She's just tired & very subdued. An additional side effect, this time, is a general puffiness in her face & hands.

She talked to the chemo nurses about the hair loss & they said again that she won't lose her hair. When she told them what the Onc had said, they just shrugged & said: "Huh - Doctors!!" Although that sounds comforting, these constant contradictions actually make things worse.

She's experiencing taste changes, too; she said anything mint flavoured burns her mouth (& both toothpaste & red wine are as fiery as a hot curry). I'm surprised as how hard it is to find toothpaste without mint in it.

I'm going out this evening with some diving friends & it's just starting to dawn on me that I've forgotten how to make small-talk!! I hope the skill comes back quickly, or there's a strong risk of me putting a damper on the evening ... or Lor' - I hope not!!

Friday

I'm the one who hit the wall, today - & I'm not even on chemo!!!

Thursday of Chemo-Free Week

She's on her week off chemo this week & we've had time to sit down & consider the trends:

Day 1 = Chemo

Days 2-4 = 3 days of hyperactivity

Day 5 = 1 day coming down from hyperactivity

Day 6 = 1 day of narcolepsy

Day 7 = 1 "fairly normal" day

Day 8 = Chemo

Days 9-11 = 3 days of hyperactivity

Day 12 = 1 day coming down from hyperactivity

Day 13 = 1 day of narcolepsy

Day 14 = 1 "fairly normal" day

Day 15 is the start of the chemo-free week & we're on Day 16 today. Chemo starts again next Wednesday, which will be Day 22 of Cycle 1, or Day 1 of Cycle 2, depending on which way you look at it.

I'll keep an eye on the trends & see how they continue.

She's had AWFUL stomach gripes over the past few days. I'm not sure what they're linked to, but it does seem pretty likely that the hyperactivity is linked to the steroids she's prescribed for the 1st 3 days post-chemo, to increase the efficacy of the anti-nausea meds.

I've had a LOT of work this week & am really, really tired. I'm also suffering retail-therapy withdrawal symptoms. I need to get shopping again. I know I don't like clothes shopping (clothes just don't interest me), but Primark has just opened in the Mall. I really think I should go & explore it as soon as I've had enough sleep to enable me to face the crowds.

Sunday

Ooooohh - I have new followers!! This is exciting!! Welcome to you both. :o)

The hyperactivity disappeared when her 3-days' supply of additional (post-chemo) anti-nausea meds had been used up. They're steroids, apparently. I know she was told they may disrupt sleep & cause her to eat like a horse but, as she's not eating inordinately more than usual, we hadn't made the connection between the hyperactivity & the tablets.

She hasn't hit the wall recently, though, so maybe there's still some working its way through her system.

She's doing well & looks terrific. Brilliant!!

Friday - Chemo Day 10

2 days post-chemo & a new side-effect has become apparent ... HYPERACTIVITY!!! :o)

She's talking 19 to the dozen & has been gardening, cleaning & tidying - all at the same time. It's great to see such energy but we're waiting for the "chemo wall" to come up & hit her over the head again.

She says she feels so well at the moment - which is absolutely WONDERFUL. Long, long, long may it continue.

[p.s. The TV is fab, fab, FAB]

Thusday Evening

The telly has arrived & was set up with lightening speed by the lovely guys from my local Sony Centre. All I need now is for the quality of the programmes to be improved so I'll have something good to watch on that gorgeous flat screen!!!

Thursday - End of 1st Chemo Cycle

Yesterday was Day 8 of Chemo Cycle 1 & seems to have gone very well, although it took longer than Day 1 (6 hours instead of 5). I couldn't go, 'cos I was teaching 9.00 - 2.30, but Franco went with her.

It took 5 attempts to get the cannula in this time (it looked soooo easy last week) as her veins hid whenever a needle came near, so Franco's attempt to teach her to crochet had to be aborted as every time she twisted her wrist to regulate the tension of the cotton, it set her drip alarm beeping.

But some BRILLIANT person did the Race-For-Life recently & donated 4 portable DVD Players to the Chemo Unit, so sis & Franco watched DVDs, chatted & giggled.

They don't have many DVDs, though - so if anyone out there has any to spare, please donate them to the Guy's Hospital Richard Dimbleby Day Centre & earn the patients' (& visitors'!!) eternal gratitude.

My new TV is due to be delivered this afternoon, then tomorrow I pick up the new lamp - I'm getting excited. This retail therapy lark is quite fun!! :o)

Sunday Evening

To appropriate a line from the Macmillan campaign ... Today was a good day.

We did some major furniture shifting & reorganising of rooms & we're both happy with the way the rearrangements have worked out. Mind you, buying lighting this afternoon & moving furniture this evening has rather wiped me out ... so early bed!!

Starting tomorrow, I've got 3 weeks work, covering an absent colleague. I'm not good at getting into the classroom, bright-eyed & bushy-tailed, for 9 o'clock starts but it'll pay for the new bed, new television & new floor lamp ... oh, & hopefully for whatever I'm going to buy myself next week, as well ... ;o)

Goodnight!! xx

Sunday - Chemo Day 5

Apparently it's very warm outside but it's BUCKETING down, so I haven't ventured forth yet.

Her Fortisip had a slight metallic taste today - it's just the vanilla ones which have been affected by "chemo-mouth" so far, but that could be a problem ... she was given 2 months supply of Fortisip last week & all but 4 of the bottles were vanilla flavour (that's 44 metallic flavoured Fortisip to get through ... UGH!!)

I'm off to Angelo's Lighting this afternoon to buy myself another present.

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.

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 ...)