Birthday Week

It was my sister's birthday earlier this week & we went to Charles Worthington to have our hair cut for a birthday treat. We couldn't stay out long, as she's been feeling sick ever since her last chemo & she had to get home to bed.

She wasn't given her usual supply of steroids after her last infusion & the doctor forgot to include any in the emergency prescription the Mac Nurse asked him to provide. I don't know how much the lack of the steroids has affected her, but she's never been too much affected by post-chemo sickness in the past - & certainly not this long afterwards.

It's over a week since her last chemo & today she was very sick & had a fever :-(

LAST CYCLE - LAST DAY (Part 3)

All well. She's home & in bed. Tired, rather pale & a bit wobbly on her legs, but relieved to be back & to have got through this 6 months so well.

Looking back at the Norovirus incident, it's quite hard to remember how ill she was & how much she dreaded continuing with the chemo. It's taken a hell of a lot out of all of us, but we've all survived it.

Scan is 6th May, then Onc's analysis on the 10th.

Fingers crossed!!

LAST CYCLE - LAST DAY (Part 2)

Ooooh ... She's got a Custard Doughnut & a Cherry Danish for us to share!! FAB!!

LAST CYCLE - LAST DAY (Part 1)

Sitting on the 10th floor at Guy's. Bloods taken, tested & approved. Chemo ordered. Sis has gone downstairs to get me a biscuit. (Hope she decides on an Almond Croissant instead). :-D

WOW - IT WORKS!!!

Yay - no stopping me now!!

Off to meet Val from CCF this afternoon ... am getting very excited. (Must make sure I have a good supply of photos of Laura to show her - she's a cat fiend, too, by the sound of it.)

Sis is doing well well today & is DETERMINED nothing will come between her & her last chemo tomorrow.

Fingers crossed for a good day, a good week & a good follow-up scan on the 6th.

Pre-Last-Cycle-Last-Day!!

Just testing that my web-blogger app links to my blog (a) so I can be sure I can update from the Chemo Unit tomorrow & (b) because I still like playing with my new phone ... :-D

Day 1 - Last Cycle

It was damned hard to wake her up this morning, but we got to the hospital just as her bags of Gem/Cis were being delivered. The Chemo Unit is on the 10th floor of the hospital & the sun was pouring through the windows as they set up her cannula & IV.

Another friend is due to visit the Unit this afternoon & will ensure she's okay getting back at the end of today's treatment - so I left her, happily giving encouragement to a little baby girl who was just learning to stand & was attempting to take her first steps.

Now I'm home, I really should get down to prepping for tomorrow's class (I'm teaching at 9am) ... but, as I said, the sun's pouring in the windows & I'd much rather be doing this ... !!

Pre-Cycle 8 Day 1

Tomorrow is day 1 of my sister's last scheduled chemo Cycle. She's doing so very, very well but is feeling rather nauseous tonight. They call it "anticipatory nausea" & it's very well known. She's sleeping now. Goodnight, sis. See you in the morning. xxx

Excited Post-Script

WE DID IT - not only did we reach our goal of 2,500 fans for the CCF Facebook page by the end of March, we exceeded it!! 3,000 fans in one month!! Wheeeeee!! CC now has a massively increased public profile. Thank you to everyone. xx

End of Easter Break

Uh oh, I've gone all quiet again. Have just about pulled myself through my latest rough patch (with help from my lovely sister, mother, friends - thank you all).

Back sooooon!!! xx

CC Awareness Stickers

If you're on Facebook & you want to add a CC Awareness sticker to your profile picture, go to:

http://apps.facebook.com/fribbon/group.php?gid=5533&refer=pp

(There are 3 CC stickers to choose from - if you'd like to use a different one, click on "Find a Sticker" along the top & type "Cholangiocarcinoma" in the search box)

If you want a "physical" sticker, you can get one from CC Foundation's online store:

http://www.cafepress.com/cc_foundation/

Thank you - I look forward to seeing even more CC stickers on Facebook profiles & car bumpers!! :o) :o) :o)

Cycle 6 - Day 19

We're on the train, heading back from the hospital. The Onc is pleased & has booked her in for Chemo Cycle 7.

All going well. Phew!!

Spring's Arrived - & Marking's Finished!!!

I've had my head down, marking like fury, for weeks - but it's done now. All that's left to do is seal the boxes & call the courier to collect.

YAY!! :-D

I've finally managed to wrench myself away from the CCF Fan Page on Facebook, too ... I can't believe the rate at which fans are piling on there - it's BRILLIANT!! 61 new people joined whilst I was asleep last night (& 51 the night before) - PLUS those who join during the day. Of course, fans are arriving from all over the world - so we're all in different time zones - which adds to the excitement of it all.

We've nearly reached our initial 2,500 goal & it's showing no sign of slowing down. Fan-Tas-Tic!!!

We're off to see the Onc this afternoon, for her pre-Cycle 7 assessment. 2 Cycles to go. 4 more chemo days in all.

She's had so much energy since she recovered from the Norovirus that we're really optimistic that the treatment's really working!!! Fingers remain firmly crossed.

Kris, from CCF, is in surgery at the moment in Sweden. All my VERY, VERY best wishes to you, Kris. I'm sending LOADS of positive thoughts & hugs & good vibes to you & your family for a spectacularly successful outcome.

CCF has a Facebook Fan Page!!

If you're on Facebook, please come & join us by becoming a Fan!!

http://www.facebook.com/pages/The-Cholangiocarcinoma-Foundation/332378771195?ref=ts

See you there!! :-D

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