It's only a week late, but it feels so much longer.
Sue wasn't feeling well this morning, but her bloods were "normal" (i.e. within acceptable limits) & the Chemo Unit said it was okay if she went in later, so she rested a bit more & then made her way to Guy's at London Bridge.
This is the penultimate cycle - & it's finally started :-)
Only one more cycle after this one :-)
Keep going, my lovely sis - you're doing soooo well & I'm soooo proud of you!!
Thursday, 19 May 2011
Cycle 7: Day 1?
Susan's still not feeling well. I think she's been jolted by the low blood count diagnosis, too. Her white cells have never been a problem before.
Not sure if Cycle 7 will start today or be further delayed.
Will post later.
Not sure if Cycle 7 will start today or be further delayed.
Will post later.
Monday, 16 May 2011
A Further Postponement
The hospital says Susan's "little soldiers" (I assume they're referring to her white blood cells) aren't functioning properly, so they're still reluctant to drip more toxins into her. They reckon a few more days should see her right, so she's going back for a further blood test on Wednesday, with a view to restarting Chemo on Thursday.
This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.
She's coping well :)
This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.
She's coping well :)
Thursday, 12 May 2011
Cycle 7 Postponed
She went to Guy's yesterday to start her penultimate cycle, but they've put it off until Monday, as she has another infection. She's back on antibiotics, so that should sort it out fairly quickly, but the delay has put her end-of-Chemo-&-Big-Birthday celebrations back yet again, which is upsetting for her.
On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!
On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!
Monday, 9 May 2011
Pre-Cycle 7 Check-Up
Nice, chilled journey to the Onc, as we had enough time to get the local Overground train (empty at this time of day), rather than playing sardines on the tube - lol.
We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.
The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.
Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.
We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.
********************
It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??
We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.
The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.
Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.
We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.
********************
It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??
Thursday, 5 May 2011
Thursday, 28 April 2011
My lovely sister's BIG BIRTHDAY
Susan celebrated her significant birthday yesterday. Her Oncologist had done his best to rearrange her chemo date so she had a chance of being nausea-free on her birthday, but it wasn't possible, due to a fortnight crammed to the gills with Bank Holidays (Good Friday, Easter Monday, Royal Wedding, Spring Bank Holiday ...)
So ... if she couldn't have a birthday celebration without chemo, she decided she wouldn't have chemo without a birthday celebration.
I bought her a big cake, parceled up some napkins, paper plates, forks & a knife & she took her birthday into the chemo unit & had a party there!!
Those of you who know me on Facebook may have seen the photos & will already know how successful this was. I was afraid that some people may be offended at the prospect of "frivolity" in such a sensitive place, but no one was. The staff & patients all shared her cake & wished her a very happy birthday.
She has asked me to thank everyone who has been so kind, empathetic & supportive since her diagnosis 18 months ago & particularly to thank those cc friends who posted birthday greetings on my Facebook Wall.
THANK YOU for making my lovely sister's BIG BIRTHDAY such a rip-roaring success.
So ... if she couldn't have a birthday celebration without chemo, she decided she wouldn't have chemo without a birthday celebration.
I bought her a big cake, parceled up some napkins, paper plates, forks & a knife & she took her birthday into the chemo unit & had a party there!!
Those of you who know me on Facebook may have seen the photos & will already know how successful this was. I was afraid that some people may be offended at the prospect of "frivolity" in such a sensitive place, but no one was. The staff & patients all shared her cake & wished her a very happy birthday.
She has asked me to thank everyone who has been so kind, empathetic & supportive since her diagnosis 18 months ago & particularly to thank those cc friends who posted birthday greetings on my Facebook Wall.
THANK YOU for making my lovely sister's BIG BIRTHDAY such a rip-roaring success.
Wednesday, 27 April 2011
Tuesday, 26 April 2011
Happy Easter!!
We had a lovely Easter, blessed with glorious weather & good friends. Thank you all. My sister (I'll give her a name now, for those who don't know - Susan) got lots of eggy things & I got none - serves me right for telling everyone I want to lose a bit of weight!! Still, she's a generous soul & shared some of hers with me - other bits I managed to nick when she wasn't looking, but please don't tell her that ;-)
North Mid A&E didn't find any infection on our last visit & sent her home, but when we saw the Onc at Guy's Hospital a few days later, he put her on more antibiotics, ordered an ultrasound scan & told her it was probably good ol' Krebsiella Pneumoniae again :-(
She had the ultrasound 10 days ago & the diagnostic medical sonographer (as Yahoo Answers tells me is the correct title of the technician who performs ultrasounds) said her ducts showed increased dilation on the left side of her liver, which could be the result of (a) stent movement (b) tumour growth or (c) tumour shrinkage, causing other organs to shift & prevent bile drainage.
He said she has a good blood supply to the liver & not much fluid in the abdomen, both of which are reassuring signs.
When Sue went for Chemo last week (Cycle 6; Day 1), a doc came to see her & told her not to listen to anyone other than an Onc, as the dilation shown by the ultrasound was actually exactly the same as last time ...
The bloods taken at A&E showed a bilirubin reading of 66 - clear jaundice level - but her pre-Chemo bloods showed Billy has dropped to 10 (which is far lower than mine & I'm supposed to be relatively normal!!)
Since last week's Chemo she's had a rough time & is feeling the effects of the prolonged toxicity. They drip more poison through her veins tomorrow - another 5 hours' worth, poor thing - & the added "insult" is that tomorrow's her birthday!! The Onc was brilliant & tried to change the day to Thursday, to give her a chance of having a nausea- free birthday, but with all the Bank Holidays over last week, this week & next week, there's no room in the Chemo Unit for her on any other day than her designated one. So we'll join her at the Unit tomorrow & we'll all celebrate her BIG birthday (yes - it does end with a zero!!) there :-D
North Mid A&E didn't find any infection on our last visit & sent her home, but when we saw the Onc at Guy's Hospital a few days later, he put her on more antibiotics, ordered an ultrasound scan & told her it was probably good ol' Krebsiella Pneumoniae again :-(
She had the ultrasound 10 days ago & the diagnostic medical sonographer (as Yahoo Answers tells me is the correct title of the technician who performs ultrasounds) said her ducts showed increased dilation on the left side of her liver, which could be the result of (a) stent movement (b) tumour growth or (c) tumour shrinkage, causing other organs to shift & prevent bile drainage.
He said she has a good blood supply to the liver & not much fluid in the abdomen, both of which are reassuring signs.
When Sue went for Chemo last week (Cycle 6; Day 1), a doc came to see her & told her not to listen to anyone other than an Onc, as the dilation shown by the ultrasound was actually exactly the same as last time ...
The bloods taken at A&E showed a bilirubin reading of 66 - clear jaundice level - but her pre-Chemo bloods showed Billy has dropped to 10 (which is far lower than mine & I'm supposed to be relatively normal!!)
Since last week's Chemo she's had a rough time & is feeling the effects of the prolonged toxicity. They drip more poison through her veins tomorrow - another 5 hours' worth, poor thing - & the added "insult" is that tomorrow's her birthday!! The Onc was brilliant & tried to change the day to Thursday, to give her a chance of having a nausea- free birthday, but with all the Bank Holidays over last week, this week & next week, there's no room in the Chemo Unit for her on any other day than her designated one. So we'll join her at the Unit tomorrow & we'll all celebrate her BIG birthday (yes - it does end with a zero!!) there :-D
Monday, 4 April 2011
Back in A&E
North Mid A&E is becoming rather too familiar to us lately. She's been doing pretty damn well, over all, but her temperature shot from 37 to 39 degrees within the space of half an hour this evening - so ... here we are again.
She finished Chemo Course 2; Cycle 5; Day 8 on Thursday (well, it was Day 9 actually, but her bloods got lost between the blood unit & the testing lab on the Wednesday, so they'd had to postpone treatment for a day). Oddly, it was after Cycle 5; Day 8 of Course 1 (February last year) that she had her first "episode", culminating in a dash to the North Mid, accompanied by wailing sirens (theirs) & projectile vomiting (hers).
We've been moved to an Examination Room & she's having her bloods taken (they seem to have found a vein at last; it's never as easy as they think it will be). She looks very pale & rather waxy, but her temp does seem to be coming down.
(My phone battery is running low - will conserve it & update later ...)
HA!! I've found a spare power socket in a corner & am sneakily "appropriating" NHS electricity to charge my little "lifeline to the outside world" :-D
... Back Soon ...
She finished Chemo Course 2; Cycle 5; Day 8 on Thursday (well, it was Day 9 actually, but her bloods got lost between the blood unit & the testing lab on the Wednesday, so they'd had to postpone treatment for a day). Oddly, it was after Cycle 5; Day 8 of Course 1 (February last year) that she had her first "episode", culminating in a dash to the North Mid, accompanied by wailing sirens (theirs) & projectile vomiting (hers).
We've been moved to an Examination Room & she's having her bloods taken (they seem to have found a vein at last; it's never as easy as they think it will be). She looks very pale & rather waxy, but her temp does seem to be coming down.
(My phone battery is running low - will conserve it & update later ...)
HA!! I've found a spare power socket in a corner & am sneakily "appropriating" NHS electricity to charge my little "lifeline to the outside world" :-D
... Back Soon ...
Monday, 14 February 2011
Scan Result
Cancer stable & tumour marker coming right down but she had another "episode" in Outpatients. They think the recurrent infections may be coming from the stents & want to see her next week before restarting Chemo.
She's exhausted & gone to bed. I'm shattered from the waiting & may be heading "up the apples" myself, before too long.
Good Night!! X
She's exhausted & gone to bed. I'm shattered from the waiting & may be heading "up the apples" myself, before too long.
Good Night!! X
Saturday, 12 February 2011
AN EVEN MORE MASSIVE THANK YOU!!
Since my last post, donations have continued to flood in from Bloomsbury & Moorgate staff, reaching £325 in less than 48 hours. These donations, together with earlier gifts from family & friends, shot us up to our initial £500 target by mid-this-afternoon.
I'm finding it hard to find the words to express my delight & gratitude for all this generosity. A very big Thank You to everyone who has already contributed & to everyone who will still do so.
Yes - our first target has been smashed, but the fight still goes on. In fact, I've decided to up the ante by raising the target!! Sneaky, I know - but cc doesn't stop at £500 & neither should we.
Please remember to pass the link on to friends & family - let's show Cholangiocarcinoma that it made a big mistake when it decided to mess with us ... X
Thursday, 10 February 2011
www.justgiving.com/cholangiocarcinoma
A massive THANK YOU to my friends at the College of Law (London Bloomsbury & London Moorgate branches). Over £200 donated in less than 24 hours.
You are such a brilliant bunch to work with. Thank you. X
You are such a brilliant bunch to work with. Thank you. X
Tuesday, 8 February 2011
BUMS!!
Last Feb she went down with the Norovirus - this year it's Klebsiella Pneumoniae (www.answers.com/topic/klebsiella-pneumoniae). It sounds vile & there's some dispute amongst the doctors at A&E as to whether she should be admitted & put on an antibiotic drip as an in-patient, or sent home with 2 courses of oral antibiotics. So ... she's been sent home, called back & now sent home again.
She missed Chemo last week, as she felt unwell, & now isn't sure whether she'll be having it tomorrow either.
I suppose we'll just have to wait & see.
It was another 999-job when her temperature shot up to 39.8 on Friday evening &, whereas last time she was completely out-of-it, this time she fought me - & the Ambulancemen - all the way. I think, in the end, they just sweet-talked her into taking a nice trip in a nice ambulance ... Scary to realise how easily we can be sweet-talked when we're ill!!
Still, by the time we left A&E at 2.00am, two paramedics & a night-shift A&E doctor were proudly sporting the Cholangiocarcinoma wristband & promising to help get our name out there :-D
PermaLink Posted in: Uncategorized
She missed Chemo last week, as she felt unwell, & now isn't sure whether she'll be having it tomorrow either.
I suppose we'll just have to wait & see.
It was another 999-job when her temperature shot up to 39.8 on Friday evening &, whereas last time she was completely out-of-it, this time she fought me - & the Ambulancemen - all the way. I think, in the end, they just sweet-talked her into taking a nice trip in a nice ambulance ... Scary to realise how easily we can be sweet-talked when we're ill!!
Still, by the time we left A&E at 2.00am, two paramedics & a night-shift A&E doctor were proudly sporting the Cholangiocarcinoma wristband & promising to help get our name out there :-D
PermaLink Posted in: Uncategorized
Monday, 10 January 2011
Onc Update
Approval given for Cycle 3 to start on Thursday. Then another scan to see how it's going.
Back At The Onc's
I'm sitting in the Oncology Department Waiting Room at Guy's Hospital. My sister's chatting to the lady in the Dimbleby Cancer Care Drop-In Centre. I can hear laughter coming from the room, which is very nice to hear.
She's back on Chemo, having been stable for 7 months. The Oncs are pleased that the Gem/Cis combination worked well last time, so they've recommended she have another 8 Cycles of that.
She's finished the first 2 Cycles (Chemo on Days 1 & 8, with Day 21 off & Day 28 being Day 1 of the next Cycle) & it's made a noticeable difference already.
She's just come out to get the cards I've made for our justgiving site. It'll be great if we can drum up more interest in - & the funds for - research into cc.
We've been called. Will update later.
She's back on Chemo, having been stable for 7 months. The Oncs are pleased that the Gem/Cis combination worked well last time, so they've recommended she have another 8 Cycles of that.
She's finished the first 2 Cycles (Chemo on Days 1 & 8, with Day 21 off & Day 28 being Day 1 of the next Cycle) & it's made a noticeable difference already.
She's just come out to get the cards I've made for our justgiving site. It'll be great if we can drum up more interest in - & the funds for - research into cc.
We've been called. Will update later.
Wednesday, 5 January 2011
Deep Sadness Around the World
Kris Jurgens (aka Devoncat), a truly wonderful woman from Kalmar, Sweden, died last night after a fierce battle with Cholangiocarcinoma. If you search the skies tonight & see a new & particularly bright star, that'll be her. Wave to her, please, & send her our love. She inspired so many people around the world. RIP, Kris. X
Saturday, 25 December 2010
Good Lobby Result
I've just heard that last month's Cancer Research UK Lobby of Parliament achieved a victory for its early diagnosis campaign. £25million will now be made available in 2011/12 to help GPs get direct access to more tests to diagnose cancer.
I'm proud to have been part of this Campaign & am very grateful for all the support I've received from friends old & new. Looks like it may be a Happy New Year indeed!!
I'm proud to have been part of this Campaign & am very grateful for all the support I've received from friends old & new. Looks like it may be a Happy New Year indeed!!
Wednesday, 1 December 2010
LaLupes is Fundraising for AMMF
www.justgiving.com/cholangiocarcinoma - My lovely sister has Cholangiocarcinoma, a cancer of the mucus glands lining the bile ducts. Bile is a fluid which helps us digest food - its main function is to break down fats in food - & the bile ducts are tubes which carry bile from the liver to the small intestine. Because of its "hidden" location - & the fact it's very rare - it tends to be diagnosed too late for surgery to be an option.
The cause of most bile duct cancers is unknown. My aim is to raise awareness of this rare cancer & raise money to fund research into its causes. Ultimately, I hope a simple test will developed so cc can be diagnosed at a much earlier stage.
I'm joining AMMF's fight against this disease for my sister & for everyone affected by Cholangiocarcinoma, whether as patient, carer, family or friend.
Please help AMMF - www.justgiving.com/cholangiocarcinoma
Thank you!! X
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