6 weeks later ...

Saw crocuses yesterday; could Spring be on its way at last?? Pleeeeeese!!

We've all had a rough few weeks. I really want to get back online but everything feels rusty (& that includes my typing fingers & my blogging brain).

Thank you to EVERYONE who's been so supportive - friends, family & my new extended Cholangiocarcinoma Foundation family, too - your messages of support have been so wonderful & have helped me log in here again today. I'll be back to talk to you all again very soon.

My sister says thank you to you all, too. (We're off to see the Onc again tomorrow to see if she can start chemo again later this week. I'll update asap.)

Love from LaLupes xxx

Thursday - 3 weeks into the New Decade!!

Gosh, it's been a long time since I updated!! The weather's been having a field day recently ... we've been snowed under, iced in & rained on over the past few weeks. As a result, I've got lots of additional work lined up, as College catches up with the scheduling disruption caused by having to close for 5 days.

My sister was very worried about Cycle 4 Day 8 (2 weeks ago) as Day 1 had been so bad - but she sailed through it (relatively speaking) & the past 2 weeks have been pretty good. It was Cycle 5 Day 1 yesterday & she seems to be coming through that reassuringly well, too. She's a bit puffy & has very warm rosy cheeks today but no temperature.

She had the weirdest 24 hour bug about 10 days ago - her temperature spiked at 37.5 but it didn't go any higher than that, thank goodness (at 38 degrees, she has to go to A&E) & she was literally streaming with cold & sweat. But the next day there was no sign of it. Last week, I went down with one, but mine's dragging on & has gone to my chest, which is a nuisance, as I keep waking myself up coughing in the night :o(.

We saw the Onc on Monday & she explained my sis' Baseline Scan results to us:

1. Lungs look clean (no metanasties - Yay!!!);

2. Location of primary tumour makes it hard to measure but they were able to measure one located between one of her stents & the neck of her pancreas, so they'll use that as a benchmark next time;

3. Peritoneum shows spots, which will also be measured & monitored.

She'll have another scan before her next Onc visit ... we both find that a scary thought ...

GREAT news, though - she was told yesterday her bloods show her tumour markers are coming down ... Wheeeeeee!! I'm so PROUD of you, sis!!!

I was due to meet another member of our CC family (from the CCF) at the beginning of Jan, but her visit had to be postponed due to the snow. That was disappointing but I hope she'll come in Feb instead & I can catch up with her then.

The garden's been full of birds this morning & I'm optimistically hoping for an early Spring ... I absolutely LURVE Spring!! (Come on you snowdrops, crocuses & bluebells!!)

:o) :o) :o)

New Year's Day!!

HAPPY NEW YEAR, everybody!! 2010's been great, so far ... long may it continue to be so!! :o)

She had a really rough chemo session on Wednesday - that was Day 1 of Cycle 4. All seemed to be going smoothly & she even got out early, but she fell asleep on the bus coming home & just felt progressively worse as the evening went on.

She was due to go with friends to Hastings the next day, to see the Blue Moon, which was scheduled for last night (no, I hadn't thought they existed, either - but they do!!). Until about 11 o'clock yesterday morning, it was still touch-&-go whether she'd be well enough to make the journey. Thank goodness for her friends, who had arranged everything so she could sleep in the car going down - & for the whole visit, if necessary. They bundled her into the car & off she went.

She came back this afternoon positively GLOWING - & full of stories of the sea & the sky & the stars & the fireworks & the moon & ... & ... & ...

I, on the other hand, stayed in London & slept through the whole thing. :o)

What a lovely, lovely way to say goodbye to one decade & hello to the next ... fast asleep. No blurring of the boundaries by being awake at midnight; no hangover to start the new year.

Bliss.

I hope we all have a great year - as happy, as content & as healthy as we can be.

xxxx

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)