October 7, 2009 at 8:45 pm #31032katieloumattMember
Thanks got the email now. Just been back and edited my profile, must have had a blip when I entered my 9’s!!
KatieOctober 7, 2009 at 4:47 pm #31031
I’ve just sent a reply, Katie – & it bounced back!!! I’ve re-sent via the email link on your profile & hope it reaches you this time.
Enjoy your programme!!
JxOctober 7, 2009 at 4:44 pm #31030katieloumattMember
You are very welcome. Glad things are going OK for you and Susan at home. I am imagining you must be run off your feet, please don’t fell the need to reply to me, it’s fine.
Wishing you both a nice evening, I’m going to settle down and watch the ‘Pride of Britain awards’, tissues at the ready for a good cry….
Katie xOctober 7, 2009 at 1:37 pm #31029gavinModerator
Good to hear that your sister as out of the hospital and staying with you, no doubt much better that being in hospital! And glad to hear that the Macmillan nurse has been around. Such an amazing service they provide and I’m certain that your sister will benefit greatly from them as my dad has. What we found with my dad is that his nurse was great at getting things happening quickly such as hosp or docs apps or in getting prescriptions written immediately.
The good days and bad days are familiar so I am hoping that the good days do far outweigh the bad ones, for a long time indeed!
Best wishes to you both.
GavinOctober 7, 2009 at 4:57 am #31028marionsModerator
Thanks for keeping us posted. “Ornithologist” will stick with me forever. It reminds me of Lainy’s miracle man (Teddy) and “Angelina Carcinoma”. There have been so many funny expressions quoted, we could start categorizing it.
Love coming right back to you and Susan.
MarionOctober 6, 2009 at 9:38 pm #31027
Every day I come on & want to post an update – but I just feel I’m on a runaway train & I can’t catch my breath – so I go away again & think I’ll try again later.
Thank you for your lovely message, Katieloumatt; it was so lovely to hear from you & I will reply very soon.
The situation so far is good; my sister’s out at last & is staying with me for the time being. Her Macmillan Nurse came to visit on Saturday – she was so lovely … but the fact we had to have a Macmillan Nurse visit at all rammed the whole thing home again.
I read my sister some of your messages & the suggestions I’ve picked up from other threads on the site & she specifically asked me to come on & thank you all for your kindness & good wishes. She says she would find it hard to browse the site herself but is delighted that I’ve found so many friends here & have been receiving such support from you all. She said she loves hearing about you all & is finding the stories you’ve posted about your own fights – for yourselves &/or for your loved ones – with this awful, awful disease truly inspiring.
She’s having good days & bad days but she’s only been out of hospital for a week, after 2.5 months in bed, & the good days are definitely outweighing the bad. Long may they continue to do so .
She heard from her “Ornithologist” today (she was drugged up to the eyeballs when she first met her Oncologist & couldn’t remember what he’s called, so her memory of his title has stuck) & is due to go for a pre-chemo assessment within the next fortnight. Fingers crossed!!!
I feel I may have broken the paralysis by coming on & posting this tonight, so I hope to be back & joining in the fight with you all again very, very soon.
Love to you all.
Julia (& love from Susan, too) xxxSeptember 23, 2009 at 1:02 pm #31026lainyParticipant
Good Morning Julia from Phoenix AZ….I feel so bad for what your sister is going through and hoping today brings a more comfortable day for her.
A Senior, yes? Congratulations. I enjoy reading your posts and you always make me smile. Just tell your sister about all the people from all over the world wishing her well. Its pretty powerful stuff!!!September 23, 2009 at 7:56 am #31025
Where would I be without you lovely lot? Thank you, thank you, thank you.
I came on this morning, feeling so, so low after yesterday; I read your posts, meandered around other topics, flitted between boards & now I feel fighting fit again (exhausted, but still fighting).
She’s had such a tough few days. They tried to get the plastic stents out on Friday, but the little b*****s have migrated so that procedure was aborted. Yesterday, they did another EC-thingy & got a plastic stent out & 2 metal ones in – a very tough procedure, I’m told, but they got them well-positioned for optimal drainage. But she was in so much pain!!
She went down at 2.30, up at 5.30 & still wasn’t fully conscious when I left at 8.30. She was vomiting & asking for me. I held her hand & she squeezed my fingers but when I had to move to let the obs be taken she started asking again where I was. She slept when I sat & stroked her hand, then would open an eye to check I hadn’t gone & go back under again.
Having her ask for me like that was the most moving experience I’ve had & meant so much to me, but – $%&*, it’s tough to deal with.
[Then I looked at my stats this morning & discovered I’ve been promoted to Senior Member!! I feel like such a newbie still but reaching the Senior Member stage has really helped me face how far I’ve come in the past few painful weeks.]September 21, 2009 at 11:03 am #31024hughesdewyMember
I’m too glad you’re sounding more positive now, living for the day, and hope your sister manages to get home from hospital soon and get back to some semblance of ‘normality’. I hope you manage to have some fun and laughter together, and that you are able to put aside any worry or fear. Despite the horrible set back it sounds like your sister is still in good hands – and hopefully they can help with her decision making about what to do next.
Take care, you are in my thoughts.
WendySeptember 20, 2009 at 9:54 pm #31023gavinModerator
You’re sounding really positive now! Good stuff! It’s not been bucketing down here either for a few days now, long may that continue! Glad to hear you say that your sister is full of life now and I like your living life one day at a time talk.
GavinSeptember 18, 2009 at 1:29 pm #31022lainyParticipant
Oh, Julia, I am so glad to hear how the doctor answered your sister! He sounds like a really good doctor. Yes, there is an odor as Teddy had radiation not chemo and there was also an odor from that. One day at a time is so true and put your attitude to that and you have a winning combination. Keep those sunny skies coming!September 18, 2009 at 8:43 am #31021
Thanks, Viola!! I’ll look into that.
Louise – you may well be right, there. My sister hasn’t been here for a while but maybe Laura can smell illness on me when I come through the door after visiting the hospital. That could certainly explain her recent obsession with that corner of the room.
It was bucketing down here (the rain, that is in case that’s a particularly English expression) & horribly overcast the day of my sister’s aborted op, but yesterday was a bit brighter & a bit warmer. Today the skies look much clearer & the day outside my windows looks really welcoming. That may well be due to the improvement in my state of mind but it’s comforting, nonetheless.
The oncologist told her yesterday (in response to her question) that, yes, this disease will shorten her life. She said she didn’t want to know numbers; he said good – ‘cos they don’t know numbers. I don’t want to know numbers either; I just know that she’s full of life now & from now on I’m really going to try to live one day at a time.September 18, 2009 at 5:13 am #31020violaMember
Have your sister started to receive chemotherapy? I think you can read the ASCO report regarding use Cisplatin/Gemzar to treat advanced bile duct cancer.
Best wishes to you and your sister.September 17, 2009 at 10:03 am #31019louiseParticipant
I recently read about dogs having such a strong sense of smell that some can actually smell cancer. I suspect that dogs and cats can both be aware of illnesses in the people around them. I’m convinced that my sister’s dog (a black lab), was sensitive to my Mom’s cancer and is aware of mine, too. The poor animals do not have words for asking the questions or sharing the news with their humans, though, so they do not get relief in ways that we do. May I suggest that you talk to your cat all about your sister when you have time?
September 17, 2009 at 9:19 am #31018
Thank you, Lainy – it took me a while to absorb them but I think they’ll help. I don’t want to overwhelm her, so I’ll just listen – if I can; if I can’t, I hope she’ll understand I’m hurting, too.
Katie – I’m so, so sorry. In many ways I’m glad they didn’t open my sister up, although I wish circumstances had been such that they COULD have done the op. My recurring nightmare (well, “daymare” really) was exactly as you’ve described happened to your Dad. It’s so awful to hear my nightmare described in such real terms. It makes me glad her surgeon “didn’t want to be a hero”, as the Specialist Nurse described it to me when I did get to speak to her.
Thank you for telling me about your Dad & my heart goes out to you & your family, too.
Val, I see you’ve seen my blog about Laura!!
Yes, she’s out of the wardrobe now. She’s a rescue cat & has only been with me 6 months so I think she’s still ultra-sensitive to change. Mum says she patrols the house ferociously & is clearly trying to protect me from intruders (whether from the catflap or the gap in the skirting-board near the front door, which she sits & glares at regularly). Every so often, she gets overwhelmed, too, & it’s back to the wardrobe to regroup!!
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