lalupes
Forum Replies Created
-
AuthorPosts
-
lalupesSpectator
You are wonderful, & so kind. Thank you!!
lalupesSpectatorThank you, Gavin; my blog is slowly starting to take shape & I’m glad to have your support.
The docs are now 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!!!
We’re all very scared but feeling optimistic, too.
It’s great that you & your dad are having good laughs together & the thought of him on a horse sounds brilliant!! More hope that there is a life after, during & despite CC.
Have a good weekend
JuliaSeptember 12, 2009 at 4:50 pm in reply to: Another new member of the club no one wants to join #31317lalupesSpectatorWelcome, Val!! I’m in London, where my big sis is in hospital with CC. She’s awaiting the big op on Tuesday. I’m pretty sure that’s a bile-duct resection, too. I am so grateful to you for posting about your experience, although I’m truly sorry you’re having trouble with the wound. Just to read your words; “my surgeon says the operation was a success & hopes it’s a cure” was balm to my battered & bruised psyche. I so very much hope I’ll be able to say that after Sue’s op next week.
I spoke to her today & read her extracts from your posting & she asked me to tell you how good it made her feel, too. Like you, she won’t be biopsied until after the op. We’re all very scared but really positive at the same time.
I really hope you get some help with your recurrent infection & that someone on this wonderful site will be able to help you.
Good luck with your recovery & keep well.
Julia x
lalupesSpectatorWelcome Ed & I wish you all the very, very best. As the sister of someone with CC I know how alone I felt until I found this site. I was made very welcome & was immediately taken to the hearts of the wonderful people here. If your family wants to join us, I would strongly recommend they give it a try.
I have joined & post when I can; I know my mother reads posts but would find it too painful to join in; others in the family would prefer to read up all they can about the cancer itself, rather than about the emotional side of it – we’re all dealing with this differently. My love goes to you & your family.
Julia
lalupesSpectatorYou are in my thoughts, too, Sandy. I know how devastated and desperately alone I felt just 2 weeks ago, before I found this site. A lot can happen in 2 short weeks and, even though my emotions are still bounced around on a regular basis as my sister’s diagnosis changes back and forth, I no longer feel alone.
Please come back here often.
Julia x
September 9, 2009 at 7:54 pm in reply to: My sister had surgery March 19th and was told her margins were clear #29849lalupesSpectatorI’m glad you are still around, Sally, & I hope you’ll keep posting. I don’t know what they call my sister’s op; they’ve just said they’ll have to take out c.70% of her liver (although her liver itself is “healthy”). They’ve talked about the Whipple in connection with others in her Ward, but no one’s used that word in relation to her.
My story is under the heading “My Lovely Sister” (in case it works, here’s the internal link) http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3257. They thought it was purely a dermatological problem at first; I don’t know what made them think CC after that – I think it may just have been “luck” in that her hospital & the specialist hospital for this area have very close links. I think it’s highly likely it would still be undiagnosed had the 2 hospitals not got into a routine of vetting each other’s patient records.
I’m frustrated with the hospital – but I’m very, very grateful that she’s there!!
I wish you & your sister the very best of luck, too.
Jx
September 9, 2009 at 10:57 am in reply to: My sister had surgery March 19th and was told her margins were clear #29845lalupesSpectatorSally, I’m a sister of someone with CC, too & I can’t thank you enough for your openness on this site. It’s so, so hard for us siblings, too, & I hope your sister understands YOUR need to be supported, to enable you to GIVE support as well.
My sister is (hopefully) due for the big op towards the end of next week. I know it’s a while since you posted so I hope you get this message & I hope the reason you haven’t posted recently is that you are getting good news.
I’m thinking of you & your sister.
Julia x
lalupesSpectatorWhat a lovely message – thank you, Wendy!! I’m feeling much more optimistic lately; with this website to support me & the knowledge that the new drain is working & her bilirubin is starting to come down at last.
I’ve tentatively started a blog. It’s got very little on it so far, but I hope to be able to get it flowing & keep it going.
I want to do all I can to help others to find out more about, & feel less alone with, this awful cancer. I’m also spreading the word about this miraculous website & am just waiting for my wristbands to arrive so I can raise awareness that way, too … (it sounds like I want to be a walking advocate for CCF, but I’m just glad I’ve found a channel for my energy, pain & frustration).
I hope to have good news to report soon & I really, really hope you others are receiving comforting news too.
Jx
lalupesSpectatorThank you, Marion & Gavin, for that encouragement – & thank you, too, April for introducing me to blogger.com. I’ve gone on there & set up a blog – but I suddenly chickened out of putting up any details, as that all seems so public whereas this website (although equally public) feels much more intimate.
I’ll get used to it, I’m sure- & when I get into my stride, I’ll put up the link. I hope I’ll be able to help others, like you’re helping me.
The Consultant again said he is calmly confident that my sister’s tumour is operable (although borderline). They put another stent in this afternoon & now it’s just a question of waiting. Once everything’s drained, they can go in & (hopefully) “sort it out”.
Fingers crossed again!!
lalupesSpectatorMy mum said my updates on this site are helping her, too (particularly in the middle of the night) – so I’m going to try & do a blog. Never done one before & not sure how to start. Mind you, before we were hit by this, there were lots of things I didn’t think I could do …
I’m discovering I’m tougher than I thought.
lalupesSpectatorThank you, Gavin. The Consultant didn’t attend the meeting today so the only update we got was that there is no update to give. I’m upset & angry & frustrated but I’m still holding onto his comments of yesterday (i.e., that this is what they specialise in) & I just have to let go & trust them.
I’m truly hopeless at the waiting game, but I’m learning … inch by painful inch.
I hope your Dad’s doing well. Jx
lalupesSpectatorI’m cautiously hopeful for some better news today. My sister met her Consultant for the 1st time yesterday (he’s been on holiday) & she really liked & trusted him. He reassured her that, although it’s rare & it’s complicated, it’s what he & his team specialise in. We all feel calmer now.
The medical team has its big meeting about her today. Fingers, toes, eyes & everything-else crossed for a more positive response than we’ve had so far.
lalupesSpectatorYou won’t be alone here, April. I’m in your position with my sister & I know how I keep bouncing off the walls on a daily basis, but this site is AMAZING – for information, for support & for feeling connected.
Good luck & love to you & all of us.
Julia
lalupesSpectatorWe are going to fight this. Together.
Good night all.
lalupesSpectator24 hours is a lovely long time, when you’re living totally in the present & enjoying it.
We had a gorgeous day & the 24 hours from 7.00 yesterday evening, when we got back to her place, to 7.00 this evening, when I took her back to the hospital, felt like a full week’s holiday!!
Tests start again tomorrow.
love Julia
-
AuthorPosts